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Hi Lisa,
Welcome to our group. It is overwhelming when you are first
diagnosed - please ask any questions you have. This is a great
group of people with varied experiences. My husband and I are
reformed perfectionists too - for that reason, I am thankful for the
Perthes. Watching our son go through casts and surgery has given us
a cosmic 2 by 4 to the side of the head to slow down, stop trying to
control things, and focus on what we truly have control over. It's
been a valuable experience and has brought us all closer together.
As far as the car, when my son was in his petrie cast (he was 5 at
the time), he sat in a high back booster with the arms off. We
propped his legs up using a pillow - the part that stuck out past
the end of the seat. I have an SUV with captains chairs in the back
and that worked well. It gave him plenty of room around him for the
cast to sit straight. My husband has a sedan and we had a tough
time with that. He would fit, but not in a booster because he had
to sit almost sideways since his leg would be against the door. We
only used his car when it was truly unavoidable.
As far as kids not needing treatment, I have met three or four
families who fell into that category. Within a couple weeks of my
son being diagnosed, we knew that wouldn't be us, so I didn't pursue
it any further. Maybe someone else here can help as far as support
sites or information for those cases.
Again, welcome - I think you'll find this to be a great source of
info.
Meridith & Nate (6)

Jeff I would like to check out all of your groups. I am 26yrs old and suffer fronm true urinary

incontinence do to bein in a car wreck 7 yrs ago in which I suffered from permanent damage

to the nerves that control my bladder. Fred
Jeff <jeff@...

Our son, Grant(4 yrs old) was diagnosised a week ago with Perthes
Disease. I've been trying to find as much information about this
condition as possible. Unfortunately, this is only leading to more
and more questions.
I hope all of you don't mind me bouncing them off of you. We really
want to know what to expect and to be prepared......ok, I'll fess up
my husband and me are recovering "perfectionists" and need to have
everything planned for. Guess we are in for a rude awakening with
this condition, as it appears to be a "go with the flow" type of
situation. So please bear with us ....
The doctor and many of the information sites say that "some" of the
children go through this whole ordeal without any treatment. Yet,
I'm not seeing that in the support groups ....is this because they
have no need for a support group? Is that the norm? Or are the
children who go through without requiring treatment, the lucky few?
Which leads me to a kind of off the wall question ......If your child
is in the petrie cast or the bracing, how do you transport them?
Van, car ....what type of vehicle? We are in the process of
shopping for a new vehicle, we had planned on getting a car but now
with this diagnosis and all the possibilities that might happen, we
are wondering if we should reconsider ....just in case. We don't
want to buy a new car only to have to trade it in, a year later and
take a big hit on the value of the car.
And I would appreciate any advice you might have, that you wished
someone had told you when you first began this journey.
Thanks so much,
Lisa

Hi All
My son Ashton 4 will be 5 in Sept. has been seeing a doc. in Bluffton IN, Dr.
Cummiskey, I
sent his x-ray to Dr. Standard through email, (it was not his most current, wich
I could not
recieve) HIS LATEST SHOWS ABOUT 1/4 INCH WIDE, AND COMPLETELEY FLAT, I ASSUME
THE HEAD HAS COLLAPSED. Dr. Standard was very nice and explained the procedures
he
does mostly. He said "About the x-ray you sent of Ashton - it does demonstrate
what we
call head at risk signs: lateral subluxation, lateral calcification, growth
plate involvemnet."
I am not quit sure what this means, I sent this email to our current Dr.
Cummiskey, and
circled the information, I thought was important and seemed to pertain to Ashton
about
Bracing. I think this would be benificial for him, because he has been in pain,
and we have
had no activity restrictions from Dr. Cummiskey, I have tried to slow Ashton
down
anyways, he understand that jumping is not good, its hard not to run, but when
he does
his legs go out, and he always falls a few feet away, he has turned this into a
slide landing
on his knees type deal, to cover up his body always falling foward, I have tried
to distract
him from this as well...Well Dr. Cummiskey called me back and pretty much said,
no he
will not do the bracing, they are not proven to work, and we can go see Dr.
Standard, or
Paley if we would like, they might do better for Ashton, they might not, and
there is no
promises with any perthes treatment. Insurance will not cover us there, but I
will do what
we have to...Dr. Cummiskey wants to inject botox in his thigh muscles to help
with range
of motion...at first I was comfortable with this because in theory it seems it
would work. I
have had two doctors now, disregard his head involvement. Does age override Head
involvement? I understand that we are so blessed to be so young with this...I
dont feel like
I am making things more complicated, but the responses I get from them make me
feel
like I am. I think Dr. Standard and Paley really seem to understand what they
are doing, I
really wish I could have sent thim his most recent x-ray...
Any suggestions for us, should there be something done more seriously about his
head
involvement, Ashtons knee out motion will not budge at all and our PT told us
that it may
never go as far as normal, and his hip out motion is a little off too...
Thanks So Much, sorry so long, I hoped I rememebered it all!!
Katrina & Ashton (4)

Hi Baby Vamp....I am about 40 inch waist..I've looked at lots on the
web but they all seem to be cloth or paper.....Jeff

Thank Darin for your help jeff

Hi Beth,
I have not heard of supplements thus far, but that is a very interesting
question. I look
foward to hearing responses on that. My son is also four, an we are from Fort
Wayne IN,
I had noticed earlier about Brian suggesting braceing for Dylan. Well I have
emailed Dr.
Standard, in Baltimore Maryland THANK YOU ALL FOR SUGGESTING THAT. and he has
responded today, now the x-ray I sent to Dr. Standard is not our most recent,
but I have
not been able to recieve our most current, which his head is tiny, probubly a
1/4 inch now,
and has been in more pain, and he also suggested the brace for Ashton, also. I
saw that
you said the doc. said to contact him again. I would like to stay in contact
with you though
as we seem to be in the same stage, and age, which I havent heard much of yet. I
have
sent the email that I recieved from Dr. Standard to our doc. we have been
seeing, thus far
we have only done physical therapy, and Doc. was going to use botox in his inner
thigh
muscles to help with range of motion. But we will see what he decides after
recieveing Dr.
Standards comments. I am sooo very greatful for this group. I have recieved lots
of
information and understanding from these people and I look foward to being more
supportive and informative in the future for other parents!!

Hey everyone. This may have been posted a million times before I
joined but I did not see it in the past several months back.
Anyway, has any doctors suggested any kind of supplements? For
instance, I read about glucosamine and it sounds like it would help
with the overall pain and condition of Perthes. I would not ever give
without asking or speaking to someone but I thought I would ask all of
you as well!
Have a great day!
Beth (Dylan 4)

Hi Terry. The doctor called me and said he talked to Lovejoy at
Vanderbilt. He didn't tell me the type only to say the socket needed
rotated some. They are going to build up the lip also. He isn't 100%
sure on the spica yet. It will all depend on how well the screws hold
thing together. He just wanted you to be prepared for it anyway. I
asked if this could be done at Crossville, and he said yes. Maybe Dr.
Lovejoy will be coming here for the procedure, or just walking Simpson
threw it. I will call you later on tonight. Brian

Terry, I,m sorry for this set back. I have been thinking alot about Jacob. He is so close in age to Jared. I hope that this procedure will take care of the issue that is at hand. Jacob is a strong boy, you all will get through this in no time. Keep us posted. Take care.

Jenny/Jared 7
"Terry B." <crossvllb@...

I was able to get Jacob into the doctors office today. They took an
xray of his hips and said his head is too large for the socket. They
need to make the socket larger with surgery. They have him scheduled
for may. I asked him to call Brian and tell him what this will be
about. I don't know what type of surgery is wanted as of yet. They did
say he will need to be in a cast again and can not stand after the
surgery for a while. Jacob is all upset. We did so well with the casts
and thought this was over. God willing, we will get threw this as well.
Terry

Every diaper change I use FDS deodorant spray onto the diaper.

my daughter logan does get these massive mosquito bites. They swell and itch so bad i have to give her benadryl

I was able to get Jacob into the doctors office today. They took an
xray of his hips and said his head is too large for the socket. They
need to make the socket larger with surgery. They have him scheduled
for may. I asked him to call Brian and tell him what this will be
about. I don't know what type of surgery is wanted as of yet. They did
say he will need to be in a cast again and can not stand after the
surgery for a while. Jacob is all upset. We did so well with the casts
and thought this was over. God willing, we will get threw this as well.
Terry

Does anyone know if any disposable diaper contains deodorant?
Last Sunday it was very crowded in church, and as luck would have it, I
wet my diaper just a few minutes into the service. As the service
lasted for over an hour, I worried the whole time that those sitting
near me might notice a urine smell. I was wearing a Depend brief with a
Depend Booster pad inside, so I didn't worry about leakage, but
concered over odor.
Any suggestions would be appreciated.
Thank you,
Walter

Oh goodness....let us know what the doctor says. I hope the answer
is "no" and there's a easy explanation for what's going on with
Jacob. I can't imagine having to walk this road twice! Keep us
posted.

One of my dumb ideas. I was thinking if we know famous ppl or ppl in literature /film who are / were incont, we'd feel better about ourselves.
Am thinking of a book I just finished by Jeffery Deavor, whose character "Lincoln Rhyme" was paralyzed when, as a street detective, he went down to the subway train to an unsecured crime scene and a huge metal boulder broke loose and crashed and broke his neck.
He became a bed - ridden consulting detective for the police department, using able bodied police and detectives to go to crime scenes proper and write up the crime and get evidence.
With therapy, the quadripelic Ryhme was able to sit in a wheel chair and work in the crime lab the police department set up in his home. He had use of one pinky finger and could move his head.
Reason I tell all this is b/c he had a home health aid who slept in Lincoln's home who kept him in clean diapers, diapering him to quote from the book "to do his dirty work" and then changed the soiled diaper.
Although severly ruined and useless body from the accident, he is a brilliant and attractive detective, highly paid and effective. Gorgeous women got right in bed with him (and guess the other part of his body that worked ... [INLINE] and he has a steady detective girlfriend who sleeps in his bed with him, though his ruined body can't feel her, he can ... her ... ),
Anyway, can you think of more famous individuals in the public eye or in literature and film who are / were incont / diapered so we can raise our spirits and have role models?
LPH.Best of health & spirits.R Butterfly 3 Changing Color Heart

Dyan,
We'll be thinking of you and Paul this week. Check in when you can.
The petrie cast may seem a little overwhelming at first, but you'll
both get the hang of it in short order.
Take care, Meridith

Thank you for that wonderful afternoon. Brad really enjoyed that golf
game. He said you golfed like a pro. I wish I could have seen that.
Jacob said he missed you and wished you could have stayed longer. Thank
you for checking his hip and we will call the doctor tomorrow. Terry

Beth, If you have a concern, it certainly would be reasonable to call the doctors office and get some advice specific to your child. They may recommend rest or meds or something else, or they may decide to see him sooner. It costs you nothing to make a call, and you may gain alot of information from that call. I hope Dylan feels better soon.

Jenny/Jared 7
beth_lunsford1 <beth_lunsford1@...

Hello everyone. I need some advise.
Dylan was diagnosed in Oct 06 and turned 4 last month. He hasn't
really complained about the pain or anything until now. The doctors
that we have saw (2 for second opinion) have really said nothing as far
as any treatment is involved. We are doing stretching exercises twice
a day and swimming once a week - both of these on our own. There is
really no limitations besides karate, soccer, etc. high impact sports
they said.
Now that it is warm outside he is jumping and playing alot more but he
also seems to be hurting more as well. I am pretty sure he is in the
fragmentation phase now and they have said the whole head is involved.
His ROM is a little limited, the doctors said but have not recommended
any physical therapy or further treatment. We go back to the doctor in
July. Both doctors have said the same thing and I really trust the
last one we seen at Vanderbuilt Children's Hospital. He has dealt with
Perthe's alot from what I understood.
What do you think I need to do? Call the doctor and give him an update
or just keep doing what I am doing and try to get him to slow down? I
am just confused as to what to do right now?
Sorry so long & drawn out but I know you all have been there or some of
you are there now like us.
Thanks again and I hope everyone has a great weekend!
Beth (Dylan 4)

Is is possible for perthes to return after regrowth. Brian spent this
afternoon with us today. He noticed Jacob was limping and hiding his
pain. Brian asked him to lay down and checked his hip movement. He
asked us to take him back to the doctor to check his right hip. Just
wondering if perthes is back again. Terry

Very well stated Wulf. I have been a bedwetter since a back
operation about 7 years ago. I have found the AB/DL community to be
a very open and welcoming group of people, of course you have a few
freaks just like in any other society. As for finding a good diaper,
I believe you get what you pay for, unfortunatly they can put you in
the poor house pretty quickly for good ones.

Just wanted to tell everyone that Paul is going to be in the hospital
for a week starting tomorrow. And when we come home he will be in a
petrie cast for 6 weeks. Hope everyone has a wonderful week.
Dyan/Paul(6)

See-thru milky Comco plastic-pants can still be ordered at :

http://www.lovingcomfort.com/Plastic_pants.htm#ADULTplasticPANTS

Alain

I battled occasional bedwetting through my teen years. I've battled
occasional day and night incontinence for nearly 10 years. Is that enough
to qualify me to answer your questions?
Too bad, I'll give it a shot anyways.
Short answer: Yes, now. Before, when I was using readily available,
off-the-shelf products? Not usually. Changing in a "timely" fashion is
not always an option in my line of work, or when I'm on trips, in
meetings, etc.
Yes, many. I started out with depends, then attends (which, at the
time, could be bought at the local Osco Drug, and most other pharmacies
and shops. I can still get them through a small local pharmacy). Much
later, I found brands like Molicare and Tena, and more recently, Abena.
Yeah, there are a LOT of low end / low quality brands out there. It's a
question of what works for each person. Some people may do just fine in a
plastic-backed paper towel. But thats not realistic for many people, as
anyone with anything but dribbling could tell you.
The needs of "a real incontinent person"? Which one? The guy with
dribbling caused by prostate surgery? The woman who has had several kids,
and now leaks when she laughs, coughs, or picks up one of her kids?
The guy with an SCI, who just kind of leaks all day long, or floods
seemingly at random?
My point here is this: There is no typical or average person around
which to build a typical or average product. This is exactly why
companies such as Attends, Depend, Tena, and all the others make more than
just one product. True, in the average store (walmart, grocery store,
pharmacy chain, etc) is very limited. Pads, pullups, and briefs, each in
one or two absorbancy levels. These work great for people who can change
every hour, on the hour, or who simply confine themselves to home and
avoid going out for more than a few minutes.
Attends, on the other hand, has SEVEN types of briefs in three different
absorbancy levels. Two different levels of pullups. SIX levels of
absorbancy in their pads, plus boosters (two levels) and "Guards for Men"
(drip collectors). Thats six levels of absorbancy (accounting for
overlap), in FIFTEEN products! PLUS the boosters, inserts, and drip
collectors. And thats just one company, with a name many people still
know and recognize.
Molicare, Tena, Abena. They all have similiar product layouts. Pads,
briefs, and pullups in varying absorbancies.
If there was no need or demand for such products, why would a company,
any company, continue to produce them? So they can appease a very, very
small niche market? I seriously doubt it*.
(* Yes, there are companies which exist solely to serve very small niche
markets. There are also companies which produce a product (or several)
exclusively for very specific markets. This is very common in
pharmaceuticals.)
You'll find a fair amount of overlap in membership between "real
incontinent people" and the AB/DL world. Why? Because there are overlaps
in how needs are addressed. Both have common wants and needs: Diapers
which work well; clothes which allow diapers to be worn without detection.
Just as there are varying degrees of incontinence, hearing ability, visual
ability, etc, there are varying degrees of AB's and DL's. (Contrary to
what you may believe, not all ab's and dl's are exhibitionists, running
around in nothing but a diaper and maybe a t-shirt, at every possible
opportunity.)
What _did_ I think of the AB/DL community? I wasn't aware it had ceased
to exist. I think that, on the whole, they're a great group of people.
Yes, there are some freaks and extremists, but you'll get that in any
group.
--Wulf
Disclaimers: No, I do not mind wearing diapers. Yes, I do get all hot and
bothered by people who get their panties in a bunch over other people who
wear diapers and don't mind wearing them. Yes, I've enjoyed wearing
diapers since I was a teenager. Yes, I've been involved in the ab/dl
community for a very long time. Yes, I do have problems with
incontinence. Yes, I've been to a doctor. No, he didn't find anything.
Yes, he did brush me off and tell me it was all in my head. No, I won't
be going back to the jerk.
"Don't dream it, be it!" -- RHPS

Hi everyone. I made it home today. Sure is nice being in my own bed
for a night or two. This means I'm on slow exspensive dial up. This is
why Terry never posts much. We don't have a local server here. Even
though we are a golf vacation destination. It costs me $1.95 a minute
because I must use a long distant line. I will check in from time to
time but I'll be away until tuesday. I hope I've helped with my posts.
Praying for all of you. Brian

Comco is still in business, but they have closed their website as they
didn't see enough return on it to warrant the costs.

I'm kind of glad you wrote that. Now I don't feel alone about that. I
always swell from mosquito bites. Chiggers were worse. Be strings
didn't seem to swell me much. I'm the only member in my family that
does that also. Brian

I want to tell you maybe why he is starting so feel more pain. As
the head starts to fragment, the articular cartilage around the head
can't support the head. This causes the framents to dig into the
cartilage causing pain. That's why they say no running or jumping.
It this point I would ask for a brace to hold his legs appart. The
reason is this. The growth plate doesn't match the angle of the
socket when standing. If the hip is abducted, it better matches the
socket. This allows weight to be transfered around the fragments and
helps keeps the head from collapsing. This will make the pain reduce
greatly for most kids. This may not keep the head from needing
surgery, but most kids his age using abduction braces 24/7 never get
surgery. The hardest part of this is thinking of him being confined
with legs spread. As pain lowers, the desire increases to not use
the brace, but pain loss is normaly from the brace. If you don't
make a deal about the brace, the child takes it in stride. I'm just
giving my opinion so I hope I helped. I've never read a study saying
the brace made things worse. There are studies that say it doesn't
work. That is being proved wrong based on controls from further
studies. Brian

Hello everyone. I need some advise.
Dylan was diagnosed in Oct 06 and turned 4 last month. He hasn't
really complained about the pain or anything until now. The doctors
that we have saw (2 for second opinion) have really said nothing as far
as any treatment is involved. We are doing stretching exercises twice
a day and swimming once a week - both of these on our own. There is
really no limitations besides karate, soccer, etc. high impact sports
they said.
Now that it is warm outside he is jumping and playing alot more but he
also seems to be hurting more as well. I am pretty sure he is in the
fragmentation phase now and they have said the whole head is involved.
His ROM is a little limited, the doctors said but have not recommended
any physical therapy or further treatment. We go back to the doctor in
July. Both doctors have said the same thing and I really trust the
last one we seen at Vanderbuilt Children's Hospital. He has dealt with
Perthe's alot from what I understood.
What do you think I need to do? Call the doctor and give him an update
or just keep doing what I am doing and try to get him to slow down? I
am just confused as to what to do right now?
Sorry so long & drawn out but I know you all have been there or some of
you are there now like us.
Thanks again and I hope everyone has a great weekend!
Beth (Dylan 4)

for those who are realy incontinent .
did you find that the diaper you are wearing are absorbant enough ?
if not did you have try an other brand ?
i know there are a lot of diaper that are realy low quality , but in
general i think the average diaper are good for a real incontinent
person .
did you find that those ABDL stick to every incontience group with
silly question ????
what did you think about the ABDL comunity ?( adult baby-diaper
lover ).
patrick .

Hi Jenny,

It is nice to talk about the experience amongst those who have endured it! We see our ortho next in June. At last visit (March), he said that he would probably classify Adam's hip as a B. His prognosis, at this point, is very good.

We are fortunate to have blindly stumbled on an incredibly experienced doc, he is actually the President of the Pediatric Orthopaedic Society of North America, is Head of Shriners in St. Louis and Head of the Orthopedic dept at St. Louis Childrens. We are really lucky.

That being said, he is old school and very conservative. He offered us a surgical option, but said he'd seen a lot of Perthes in his time, and the best outcomes came from long term containment and abduction. He has this special brace he always uses that duplicates the petrie - can't remember the name of it, but I will look it up. A picture of it is posted on the sight.

At our last visit, he was explaining to a visiting fellow from Germany that ortho's these days shy away from this long term non-surgical containment that he recommends, because they believe the parents won't buy into it and won't commit to keeping their child in a wheelchair for 2 years. He said he almost never meets with resistance when he recommends it. Now I understand that some kids, with more severe cases, will absolutely need surgical intervention, but we're hoping that we won't.

As for Adam, baseball fanatic that he is, this really has not set him back too much. I guess it is all in the attitude, and he has a great one. The school and, of course, our church has been great in adapting everything for his wheelchair. He will make his first communion in a few weeks, and I think we're going to let him crutch down the aisle. Special occasion...!

Thanks for everything. So nice to read the great ideas and information that others share on these groups.

Lisa (Adam 8)
Jenny Bertsch <bertschjenny@...

Hi Lisa, It's good to see you post about your experience. When do you see the doctor next? Please let us know how Adam is progressing. I am curious about the use of the brace with a child of Adams age. Thanks for sharing.

Jenny/Jared 7

Actually the cloth-like diapers are a little bit more
expensive from what I understand because of the
process of making the nonwoven material that goes over
the plastic. Yes those "clothlike" diapers have a
layer of plastic underneith the nonwoven material
(otherwise they'd leak all over). I believe the reason
most are going to the clothlike is because the market
studies of most incontinent people have stated they
want a more discreet protective garment.
I personally don't care for them much as they chafe
and are known to wick wetness when they near capacity.
-Darin

Thanks Brian

Dyan/Paul(6)

This might sound like a very silly question, but I am wondering if any other
children have an
"allergic" reaction to mosquito bites, My son Ashton gets golf ball size or
larger nots
wherever he gets bit...When we were first diagnosed with Perthes, (Jan. 07)
I remembered how bad it was last summer, and I wondered if some sort of
thrombophelia
had made mosquito bites react to him like this? I know a lot of you have much
bigger
concerns here, but since there seems to be such an unkown cause to perthes, just
curious if
there is a couinsidence here.

Thank you for sending the link to the photos. Sorry Jenny, I beat you
to it. I had no idea I could get on line tonight. Sorry. It only took
me 5 minutes. Brian

Gramps here,
My grandson Mark, whio is 14 and lives with me wears the new ATN pull-ups. He
does
not wet every night but when he does it's 100% shut down. He likes them, no
leaks.

That's amazing Brian. It seems like some docs are looking again at the benefit of bracing and casting over surgery. I hope to find out why the change in focus.

Jenny/Jared 7
Brian <bbaker904@...

I wish I could copy them for you but I used Debbie's account to get on
that group I will ask Jenny to help me with this. About the argument
with the other group It was about containment and it was with Donna and
Micheal. I asked Donna multiple time to join us but won't. A lot of
things have changed since then. It has been nearly 3 years. Barb has
joined my group so maybe she can also re-post the pictures.
The petrie cast helped me. I was one of the kids in a study to look at
long term confinement with casts. I spend a long time in them with
bilateral head involvement. I came threw it fine with no problems other
than muscle atrophy that last a few months. I got stronger and played
baseball 6 months later. 485 kids were involved and all but 2 had great
outcomes. Long term casting is looked at badly now. Why, I don't know.
It sure worked for me. My hips were considered C at the start. If you
look at my hips now, you could hardly tell I had perthes. My joints
have reduced cartilage that's all. Brian

I can send them to you through kodak gallery and that is how Donna posted them for me. I sent them personal. Not through the group. Just let me know.

Thanks,

Dyan/Paul(6)

Hi Lisa, It's good to see you post about your experience. When do you see the doctor next? Please let us know how Adam is progressing. I am curious about the use of the brace with a child of Adams age. Thanks for sharing.

Jenny/Jared 7
Lisa Uhlenbrock <adamandlukie@...

Dyan,
My son Adam (7 at the time) was placed in a petrie cast after a tenotomy in December. It was just a week after diagnosis and all seemed to be happening so fast. Before the surgery and cast, his range of motion in the affected leg was next to nothing. The cast was tough for the first two weeks (a lot of muscle spasms the first week and then another week to just get used to it). Then he scooted all over the house, even up and down the stairs. He was in for 6 weeks. Immediately after cast removal, his range of motion was as good for affected leg as unaffected. The doctor was thrilled!

Now, four months later, his ROM is still excellent, although he is in a brace very much like the Petrie for 20 hours per day. We're still only 6 months in, although so far, I really can't complain about the cast and brace. They are doing their job. The 4 hours he has per day out of the brace are risky ones. He tries to do too much. When we see him exhibiting that daring 8-year-old boy behavior, we make him stay in the brace for 24 hours the next day. Seems to do the trick. I agree that the Petrie is effective in helping with ROM, containment AND in keeping a kid from taking this lightly!

Lisa (Adam 8)
Yes Donna posted them for me I couldn't get them on there I tried several times and final asked for her help. I have never heard of the arthrogram. Do you think the casts helped you? Yes you can copy them and bring one here that sounds great. Sorry to here about the arguments that you had.
Thanks and let me know
Dyan/Paul(6)

Mike,
Personally I don't care much for tranquility...I've had better luck with the Medline Molicare overnight diapers. U can check them out and request a sample at a site I really like. They have the tranquility products too. But, I think the Medline ones hold up better.
www.sourceoneadultcare.com
Good Luck,
Joel
Mike <daysofthundr46@...

so I get home last night and find a package and i opened it to find
tons of tranquility samples in there.... i never even remember
ordering them!
anyways in there was samples on tranquility daytime heavy and
nighttime heavy, and also there select brand daytime, and some wipes.
i tried the nighttime last night. I wet once before i went to bed
(moderate), then wet again (heavy) when i got up at 10:30am, and then
when i woke up at 2:30, i went them again (heavy). the diapers are
rated for 35 oz.... after i wet them the 3rd time, they leaked into my
plastic pants a lot. I was suprized because I thought these were the
best of the best? I wet about the same amount into a TENA ultra (one
down from the overnights) and it held up fine.
anyone else have experiences with this? im now going to try a
tranquility daytime heavy and see what happens.

I forgot to post this again. An arthrogram is a diagnostic tool that
allows doctors to see the hip socket, inside and out in real time. They
can see what the hip does if weight is transmitted to the leg and see
if simple abduction will maintain containment. The child is normally
under anesthesia and feels nothing. Dye is injected and real time
continual xrays are taken. This is also the same time a doctor will do
a tendon release if needed. That is just a small cut on the inside of
the leg near the groin. Maybe 1-2cm total length. The doctor takes a
knife inside and snip a couple on the tendons on the inside. These
tendons do grow back attached to other muscles but with far less
strength. A child put in petrie casts with out a tendonotomy is far
less fussy or is in no pain at all. Muscles do cramp for a week or so.

I'm sure the cloth-like outer takes as long [if not longer] to break down in the landfills as the plastic backed diapers because we're talking about the same plastic. In some cloth-like diaper covers, I have noticed they place cloth-like material glued over a normal plastic backed cover (the plastic cover though in these instances is about 1/2 as thick). In other cases, there is no typical plastic backing, but is just the cloth-like cover which is spun-plastic with a waterproof coating. If the marketing people can get people to believe diapers are beomcing more like cloth, I'm sure people will subconsciously think they are better for the environment. I'd suspect making plastic feel like cloth which is what they have done involves more chemicals and coatings than a plain old plastic sheet, so I would not assume the cloth-like covers are better for the environment that plastic-feel ones.

Thanks Lisa. They have not said anything about doing a tenotomy on Paul. Brian is suppose to copy his x-rays and post them here for me. Paul doesn't have much ROM in the left hip either. We do swimming once a week but I don't think that is enough. He was diagnosed in October 2006 and this will be the first thing that they have wanted to do.

Dyan/Paul(6)

Babybrain1974,
Try this site:
www.sourceoneadultcare.com
Click on reusable. If they don't have exactly what you want call them...they'll help.
babybrain1974 <babybrain1974@...

I want to thank everyone that had sugestions about cloth diapering. I
think I'm just going to bite the bullet and purchase them.
Unfortunatly there isn't a diaper service where I live but, that was a
great idea. Who would you recomend I buy them from?

Dyan,

My son Adam (7 at the time) was placed in a petrie cast after a tenotomy in December. It was just a week after diagnosis and all seemed to be happening so fast. Before the surgery and cast, his range of motion in the affected leg was next to nothing. The cast was tough for the first two weeks (a lot of muscle spasms the first week and then another week to just get used to it). Then he scooted all over the house, even up and down the stairs. He was in for 6 weeks. Immediately after cast removal, his range of motion was as good for affected leg as unaffected. The doctor was thrilled!

Now, four months later, his ROM is still excellent, although he is in a brace very much like the Petrie for 20 hours per day. We're still only 6 months in, although so far, I really can't complain about the cast and brace. They are doing their job. The 4 hours he has per day out of the brace are risky ones. He tries to do too much. When we see him exhibiting that daring 8-year-old boy behavior, we make him stay in the brace for 24 hours the next day. Seems to do the trick. I agree that the Petrie is effective in helping with ROM, containment AND in keeping a kid from taking this lightly!

Lisa (Adam 8)

Yes Donna posted them for me I couldn't get them on there I tried several times and final asked for her help. I have never heard of the arthrogram. Do you think the casts helped you? Yes you can copy them and bring one here that sounds great. Sorry to here about the arguments that you had.
Thanks and let me know
Dyan/Paul(6)

maybe its because it takes like 300 years for the plastic to break down in land fills
bjannereth <bmta1970@...

---
I hope they don't totalley phase out the plastic backed adult diapers
I can't stand they cloth like cover ones, but unfortunatley it seams
like that's the direction thease companies are going.
maybe if enough people complain to thease companies and urge them to
keep the plastic covers on their adult diapers they'll keep them or
offer both versions.
any body else hate the cloth like cover diapers

Yes Donna posted them for me I couldn't get them on there I tried several times and final asked for her help. I have never heard of the arthrogram. Do you think the casts helped you? Yes you can copy them and bring one here that sounds great. Sorry to here about the arguments that you had.

Thanks and let me know

Dyan/Paul(6)

http://www.comco-mn.com is the comco website.
George
Tony Di Antonio <tinytony59@...

Can someone post a good url for comco plastic pants please.
I'd sure appreciate any and all help.
Hope everyone has a great day!
Thanks,
TinyTony Smiley emoticon

Can someone post a good url for comco plastic pants please.
I'd sure appreciate any and all help.
Hope everyone has a great day!
Thanks,
TinyTony Smiley emoticon

I wanted to let everyone know that Debbie's daughter spoke for the
first time since the accident. Yeh. That means it's possible her brain
damage may know be as bad as the doctor thought. One prayed answered.
Brian

Very good point Brian. If the child and or the parent won't use the brace, then casting is a must. They can't take those off.

Jenny/Jared 7
Brian <bbaker904@...

Petrie casts hold the hips in containment. The growth plate doesn't
match the socket. Petrie casts are normaly set were the growth plate
completely matches the socket so the knees are turned in some. This
allows the growth plate to mold to the socket which helps
protrusions that happens during weight bearing. This is what I went
threw as a kid and is still the preferred treatment method in
europe. Older doctor prefer to use petrie casts instead of braces
because they control the containment better and help remold the
cartilage better. Most children getting botox aren't as far along or
have less involvement. Some doctor use botox to prevent more than
one sugical proceedure knowing further surgical intervention is
needed. I know petrie casts sound bad but the kids become accustom
to them fast finding things that they can do and scare you. But the
casts hold the containment better than a brace and slow them down
some. I always tell parents that may have a child that won't wear a
brace to push for casts. They worked great for me with bilateral
involvement. I wore petrie casts for multiple months. It seems bad,
but it wasn't. Brian
By the way. I'm not a member of that group. Debbie let me see the
posts but arguments years ago pushed me to start this group.

Its a simple, to the point question: Where are diapers supposed to
"rise" to on your body? basically, where are they supposed to "sit" in
the waist and etc?

so I get home last night and find a package and i opened it to find
tons of tranquility samples in there.... i never even remember
ordering them!
anyways in there was samples on tranquility daytime heavy and
nighttime heavy, and also there select brand daytime, and some wipes.
i tried the nighttime last night. I wet once before i went to bed
(moderate), then wet again (heavy) when i got up at 10:30am, and then
when i woke up at 2:30, i went them again (heavy). the diapers are
rated for 35 oz.... after i wet them the 3rd time, they leaked into my
plastic pants a lot. I was suprized because I thought these were the
best of the best? I wet about the same amount into a TENA ultra (one
down from the overnights) and it held up fine.
anyone else have experiences with this? im now going to try a
tranquility daytime heavy and see what happens.

The tabs on cloth like diapers just don't hold well enough. It seems that as soon as I sit down they pop loose on one side or the other.
bjannereth <bmta1970@...

---
I hope they don't totalley phase out the plastic backed adult diapers
I can't stand they cloth like cover ones, but unfortunatley it seams
like that's the direction thease companies are going.
maybe if enough people complain to thease companies and urge them to
keep the plastic covers on their adult diapers they'll keep them or
offer both versions.
any body else hate the cloth like cover diapers

Dyan, If your child had a broken arm, there would be a course of treatment that would include a cast for about six weeks. This length of time in the cast is to allow the body to heal the bone. That is the same for the use of the petrie cast. The petrie cast will allow the body to heal the muscles and tendons into a containment friendly environment. Remember, Treatment for Perthes is about containment, keeping the head of the femur deep in the socket so that during regrowth you have the best opportunity for the best outcome. Each child is different, each case of Perthes a little different than the other. Petrie casting can also show whether a course of treatment should include a surgery or if bracing is the best option. Hope that helps.

Jenny/Jared 7
Brian,
Are petrie casts worth the trouble that comes with them? My son Paul is seen at the Shriners hospital in Lexington KY and this coming Monday they want to admit him and do intensive PT to get ROM back and then put him into a petrie cast for 6 weeks. Trying to make the right decision on this.His x-rays are posted on the other support groups photo section if you would like to look at them. Any advise welcome.
Thanks
Dyan/Paul(6)

Petrie casts hold the hips in containment. The growth plate doesn't
match the socket. Petrie casts are normaly set were the growth plate
completely matches the socket so the knees are turned in some. This
allows the growth plate to mold to the socket which helps
protrusions that happens during weight bearing. This is what I went
threw as a kid and is still the preferred treatment method in
europe. Older doctor prefer to use petrie casts instead of braces
because they control the containment better and help remold the
cartilage better. Most children getting botox aren't as far along or
have less involvement. Some doctor use botox to prevent more than
one sugical proceedure knowing further surgical intervention is
needed. I know petrie casts sound bad but the kids become accustom
to them fast finding things that they can do and scare you. But the
casts hold the containment better than a brace and slow them down
some. I always tell parents that may have a child that won't wear a
brace to push for casts. They worked great for me with bilateral
involvement. I wore petrie casts for multiple months. It seems bad,
but it wasn't. Brian
By the way. I'm not a member of that group. Debbie let me see the
posts but arguments years ago pushed me to start this group.

Actually, it's not paper. It's a spun plastic. The process is kind of
neat, but I agree that there tend to be more problems with the
"cloth-like" covers. Mostly with pin-holes and minor leaks through the
covers. Some people cannot tolerate this spun-plastic covering, as it
irritates their skin. As a counter-example, my neice (now age 7) could
never wear diapers with a smooth plastic backing, becuase they would rub
and chaff her legs, causing her to break out quite badly.
And yes, most people I know would love to have a diaper that is quieter
and less noticable, provided that it can still function at a decent level.
The reality is, the only way to do that is to use a super-thin, cloth-like
backed diaper, and change very frequently, or to use a very very thin
cloth diaper, with plastic pants, and change very, very frequently.
Neither option is really a sound, sane solution. (Though many doctors in
the US would have us believe that diapers are NEVER a sound, sane
solution.)
--Wulf
"Don't dream it, be it!" -- RHPS

Brian,

Are petrie casts worth the trouble that comes with them? My son Paul is seen at the Shriners hospital in Lexington KY and this coming Monday they want to admit him and do intensive PT to get ROM back and then put him into a petrie cast for 6 weeks. Trying to make the right decision on this.His x-rays are posted on the other support groups photo section if you would like to look at them. Any advise welcome.

Thanks

Dyan/Paul(6)

Paper quieter and cheaper. That is why they moving toward them. They figure those who are incontinent would want a quiet less noticeable diaper. As we all know they are wrong because they lose absorbancy with the cloth cover.

Free Animations for your email - By IncrediMail! Click Here!

-
from what I have read on other Incon sites our bodies produce more
urine at night and drinking alot of liqueds especialley those with
caffine before bed makes the problem worse.
so in the morning you have a strong urge to pee.
have you seen a urologist to rule out a medical problem?

My name is Lee, I wear adult diapers 24/7 due to a disability condition;
this is my first e-mail in this group although I've been a member for
months.
I noticed this change with the Sams Club (Comfort Shape) adult diapers too
and I am also sad. Comfort Shape were one of the good plastic outer cover
diapers, but another good brand/type is now gone. I hope Depends don't do
the same thing, but I imagine they might not want to change anything about
their flagship product since they are supposedly #1. I hope anyway.
The move away from plastic to the new cloth-like outer cover is taking over
the baby and adult diaper industry. I can't stand the cloth-like diapers
and I refuse to wear them. Luckily some brands continue to product the
plastic ones (Prevail Overnight are the closest to the Comfort Shape and are
some of the best), but the question in my head is will the US adult diaper
manufacturers completely phase out the plastic covers eventually as they
have done with the baby diapers, or will there always be a market for
plastic diapers for economical/environmental reasons? I don't know which
ones cost more or not.
Lee

Chris,
I would suggest making an appointment with your doctor
to find out the cause of the urgency (if you haven't
already). Secondly I would invest in some diapers (or
pull-ups might work for you since you seem to have
some control). They are pretty much unnoticable,
provide security and are definitely better than wet
pants, car seat etc...
-Darin

That's interesting - I thought the way Botox worked is to paralyze
(albeit temporarily) the muscle. I'm trying to figure out how
paralyzing the muscle would improve range of motion....?
Also the purpose of the cast is to immobilize the joint with the
femoral head well contained, right? I'm not sure what the Botox
would do to move that process forward....?
I hope someone else here knows something about this - it would be
interesting to learn more!
Hmmm....Brian, anyone else? What do you think?

Does anyone know why I suffer from overactive bladder more in the
mornings.
Sometimes I can feel I need to go a little and then within ten minutes
I am fighting desperately to hold it back..
Two days ago I had to return home to change after being caught out on
the way to work. It was a nightmare and I could only hold myself for 15
minutes before I started to wet.
I always need the toilet more in the mornings.
Yet in the afternoons I can get the need to go and put off peeing until
I find a toilet. Unless of course I am stuck on the motorway or public
transport.
This is my first post and I live near London in the UK.
Chris

HAS ANYONE HEARD OF USING BOTOX SHOTS FOR THE INNER THIGH MUSCLE RATHER THEN
THE SURGURY WHERE THE MUSCLE IS CUT, AND THE LEG IS IN A CAST FOR 3 MONTHS OR SO
DUE TO MUSCLE ATROPHY? AT FIRST I WAS LIKE NO WAY THAT IS POISEN, BUT NOW THE
DOC. HAS EXPLAINED THAT THEORETICLY IT IS THE SAME EFFECT AS THE MUSCLE CUT AND
CAST, JUST LESS SEVERE ON MY SON, HE IS ONLY 4.6 YEARS OLD, WE HAD MORE EXRAYS,
AND THE JOINT HAS GOTTEN SMALLER WICH SHOULD BE GOOD, BEFORE IT REGROWS... BUT
HIS RANGE OF MOTION IS STILL STUBORN, I AM WONDERING IF THE EXCERSISES BRIAN
SUGGESTED LIKE THE SKATER STRETCHES WOULD BE GOOD FOR HIM...WE GO BACK IN A
MONTH TO PROBUBLY GET THE BOTOX SHOTS, ANYONE ELSE HAVE THIS DONE AND FIND IT
AFFECTIVE, AND OR NOT...ANY RESPONSES WOULD BE NICE...??
THANKS
KATRINA & ASHTON 4.6

I want to thank all of you for the prayers and help. Brian was buried
today. This was the hardest thing I've ever been threw. Last night
after every left the funeral home, I asked the manager if I could have
time alone with my son. He let me hold him close to my heart and say
goodbye.
From this day on, I will only be able to receive mail threw my

Just letting everyone know if you want to contact Debbie, remember
debcharls3@... . I hope she comes back soon. Brian

pampers work really well also
Dan F <chevy_358@...

I have been Incontinet since a motorcycle accident over 10 years ago.
Searching for the right absorbent product that works for you can be
very time consuming as well as expensive. Having to wear diapers
24/7/365, I finally found what works for me and hopefully other
members. During the day I wear Abri-Form disposables which are very
absorbent. You can purchase these through www.drugstore.com and have
them mailed directly to your home with NO writing on the packaging that
indicates that diapers are inside. At night however I need cloth
diapers which I have learned to make covered with plastic pants that I
purchase from COMCO,Inc. I now can travel driving as well as air
transportation without worrying about "leaking". I commend some of the
airports also that have now added "family" rooms which are large enough
to change in alone or with a helper. Hope this is helpful information.

I have been Incontinet since a motorcycle accident over 10 years ago.
Searching for the right absorbent product that works for you can be
very time consuming as well as expensive. Having to wear diapers
24/7/365, I finally found what works for me and hopefully other
members. During the day I wear Abri-Form disposables which are very
absorbent. You can purchase these through www.drugstore.com and have
them mailed directly to your home with NO writing on the packaging that
indicates that diapers are inside. At night however I need cloth
diapers which I have learned to make covered with plastic pants that I
purchase from COMCO,Inc. I now can travel driving as well as air
transportation without worrying about "leaking". I commend some of the
airports also that have now added "family" rooms which are large enough
to change in alone or with a helper. Hope this is helpful information.

hello im new to the group
just wanted to say hello

Hi, I'm Sadie, I found this group through ContinenceConnection, and
I'm glad to see that there's so many people open to discussing their
continence issues. I contribute to the ContinenceConnection blog,
which can be found here
http://continenceconnection.typepad.com
I'd love for people to check it out, discuss what you think about
Robin's and my posts. I plan to be an active member of this group, so
thanks for having me!

Hi Paul,

I use them too. I never had luck with them at night even when they had the plastic backing. I prefer cloth with plastic pants from Adult Cloth Diaper Company. My cloth diapers have never failed me other than a time or two the elastic on the plastic pants got turned up. As for the cloth backing on the SAM's Club diapers I rather like it. They are a lot quieter now, and since I can make it to the restroom about 30% of the time I like that the tapes no longer tear the material and you can refasten them as often as you like. For extra protection I use the Tena Super, and with the exception of the plastic tape zone they have the cloth exterior too.

You might want to just use the SAM's club diaper during the day and use a more absorbent diaper at night. Secure just launched an extra absorbent diaper, I think it is their 'Super' that is excellent for night use, even for me and I am a very heavy night time wetter. Unfortunately they are rather expensive. Though for you, you could probably use the Tena Super at night. They are considerably cheaper than the Secure Super. I get them from HDIS, as this is the most cost effective Incontinence supplier I know. They don't carry the Secure brand though.

I hope that helps, let me know if you need more information.

Mike
Paul <pjwasho@...

I was very disappointed to learn that Sam's Club (here in the US) just
changed their house brand adult diapers (Member's Mark) from a plastic
to a cloth cover. Before this change, I had been enjoying the benefits
of a decent, middle-duty disposable brief that was very economical (64
count for $19.98!). The recent product change is very disappointing.
The cloth-covered replacement model DOES NOT perform nearly as well as
the plastic backed diaper did and it's virtually worthless when I'm
sleeping on my side, as I do most of the night. If anyone else out
there was also disappointed in this change, I urge you to write to
Customer Service at Sam's Club/Member's Mark and request they go back
to the previous model. I won't be purchasing these anymore unless they
do. Meanwhile, can anyone suggest a moderately priced adult diaper
that's good for what I call "middle-duty" (re: when around the house
and/or able to change periodically through the day). Assistance will
be greatly appreciated! Thanks! pj

please can u remove me from mailing list getting too many e-mails from ur site thanks for the help and support and good luck with ur problems kevin

--have you tried prevail or attends,brands also kendall make some
good moderatley priced adult diapers with plastic covers.
You could also check the walgreen's or rite aid brands, I haven't
used them myself.

Brian, It sounds like you have a pretty stuborn infection. It may take another round of antibiotics to clear things up. I'm sorry you are not feeling well. I hope you feel better soon.

Jenny/Jared 7
Brian <bbaker904@...

I'm doing all right. Of course, my UC went active from the stress
and I picked up a nasty ear infection that I'm on antibiotics for.
Since your a mother of a child, and I asked Jenny for help with
this, How long does an ear infection last? I'm 9 days into this and
it still hasn't gone away. I'm half way threw the antibiotics and
the ear drop antibiotis and I still have fluid build up in the inner
ear that's driving me nuts. Still pretty painful too. I cann't
remember ever having an ear infection like this since I was a kid.
Brian

I was very disappointed to learn that Sam's Club (here in the US) just
changed their house brand adult diapers (Member's Mark) from a plastic
to a cloth cover. Before this change, I had been enjoying the benefits
of a decent, middle-duty disposable brief that was very economical (64
count for $19.98!). The recent product change is very disappointing.
The cloth-covered replacement model DOES NOT perform nearly as well as
the plastic backed diaper did and it's virtually worthless when I'm
sleeping on my side, as I do most of the night. If anyone else out
there was also disappointed in this change, I urge you to write to
Customer Service at Sam's Club/Member's Mark and request they go back
to the previous model. I won't be purchasing these anymore unless they
do. Meanwhile, can anyone suggest a moderately priced adult diaper
that's good for what I call "middle-duty" (re: when around the house
and/or able to change periodically through the day). Assistance will
be greatly appreciated! Thanks! pj

Yes I've noticed that too when I wear my plastic panties over my Tena Extra disposable diapers. But there is a good side to it, they act like a mini-spa and you actually shed some weight and in my case a few inches off my waistline.
bjannereth <bmta1970@...

is it just me or dose it seam like you perspire more in diapers with
cloth like covers?
it seams that way for me.
I prefer plastic backed diapers.
the cloth like one for me in addition to the perspireing also get loose
after a while and don't want to stay up.and they don't hold the wetness
in as good as the plastic coverd ones.
what does anybody else think?

I got the pictures and will not post them as she asked. I'm sorry to
hear that she is leaving, but I certainly understand. She needs to
focus on her family right now. Hopefully she'll come back to us when
she's ready.
How are you doing Brian?
M

Everyone please add doctors to the database. It will make it easy for
other to find secound opinions. Just click on datbase. I added a
listing at the start of the group. Brian

I've been on the phone with Debbie. She said she sent Meridith some
pictures but doesn't want them posted. They are of Brian. She told me
after tuesday to delete her as a member. She may come back later this
sommer. I tried to talk her out of it but there is no convicing her. I
understand the reason and she will be missed. Brian

is it just me or dose it seam like you perspire more in diapers with
cloth like covers?
it seams that way for me.
I prefer plastic backed diapers.
the cloth like one for me in addition to the perspireing also get loose
after a while and don't want to stay up.and they don't hold the wetness
in as good as the plastic coverd ones.
what does anybody else think?

Sorry it took me so long to post about your question. A walker gives
side to side help when walking and help give anyone better controll
when standing. Think of it as holding onto a table instead of a
cane. If the doctor said to take it easy because of the spot not
healed, make sure the therapist understands this and doesn't push
Nate into something that might hurt him. Brian

Hello! My daughter just had surgery on Feb 9th and got out of her cast at the end of March. We went to the wheelchair for about a week and now for the last week and a half she has been using the walker. The walker has helped her out a lot, but sometimes she wants to just go on her own without it so that can be a challenge, but overall it has worked for her.

Jami and Kaci (5)

On 4/14/07, Meridith <mom2nqc@...

I have to confess that this feels a little superficial posting with
everything going on with Debbie and her family, but here goes.
Nate saw the doc for his 4 week post spica visit on Friday. We
thought he would get the all clear for weight bearing, but they want
him to wait 2 more weeks. The doc said there is a small spot on his
pelvis that is not completely healed up. The P/T person at school
is insisting that Nate transition from his wheelchair to his feet by
using a walker at school. When he got out of the petrie cast, he
just gradually "found" his legs and didn't need a walker or
crutches. We continued to use his wheelchair as needed for long
distances of if he got tired.
Do any of you have experience with the walker for a transition after
the cast? Is it helpful? The doc did not say anything about it but
I also didn't specifically ask since the P/T person didn't get to me
until after the appointment.
Any experience with this or feedback is appreciated.
Thanks, Meridith

--
Jami :-)

I hope my friends are as understanding.

I have to confess that this feels a little superficial posting with
everything going on with Debbie and her family, but here goes.
Nate saw the doc for his 4 week post spica visit on Friday. We
thought he would get the all clear for weight bearing, but they want
him to wait 2 more weeks. The doc said there is a small spot on his
pelvis that is not completely healed up. The P/T person at school
is insisting that Nate transition from his wheelchair to his feet by
using a walker at school. When he got out of the petrie cast, he
just gradually "found" his legs and didn't need a walker or
crutches. We continued to use his wheelchair as needed for long
distances of if he got tired.
Do any of you have experience with the walker for a transition after
the cast? Is it helpful? The doc did not say anything about it but
I also didn't specifically ask since the P/T person didn't get to me
until after the appointment.
Any experience with this or feedback is appreciated.
Thanks, Meridith

Debbie, thinking of you. You are in our hearts. Please continue to
update us if you are feeling up to it. We'll be sending healing
thoughts for your children.
Meridith

Brian, do you want me to call Nate's doc on Monday and see if they
can recommend someone in the area?

Hi Debbie, We are praying for all of you. My heart is heavy for you all. But I can see that you and Charles are amazing, and you are brave and strong. I pray for peace for you. Brian's story is incredible, these past several months you have been an encouragement. Keep working on getting better, we will keep you in our prayers. Take care.

Jenny/Jared 7
Debbie <debfmly@...

Hi everyone and thank you for the prayers for my family and me. I'm
home and my husband is back home with Bruce. My Daughter is still in
the hospital because they are finding blood in her skull so she may
need sugery tomorrow to release that. I'm so sorry I just don't know
what to write. My mind is still filled with my memories of Brian. I'm
crying as I try to write this. I just don't know what happened and why
we had this accident. The police are checking our pick up, or what is
left of it, to see if they find any faults with the brakes. All I can
remember is stopping and suddenly spinning. The kids were wearing their
seat belts. Brian was sitting in the saddle seat behind the passenger
seat. The next thing I knew, they were gone. My life went with them and
this hurts so much. I can't sleep thinking about this. It's hard to
have anyone to be around me. I'm shaking and just feel like giving up.
So please understand, I just need some time to get my mind back
together.
I want to thank all of you. Your prayers are helping. Knowing that we
helped another child live longer helps also. Debbie

Hi all. I met a family tonight in Orangeburg Sc with a 6 year old with
perthes. They do not have a computer. I asked them to stop at there
local library and check out the group if they could. They will try. The
child is in stage 2 and has limited range of motion. It is his right
hip that is effected. The doctor they are seeing hasn't done anything
and hasn't even suggested surgery. They want to get some second
opinions but I do not know what doctors are available in the area.
Orangeburg is 50 east on I26 from Columbia Sc. Any suggestions I could
pass on would be helpful. I have their number but of course, they don't
want it posted. I can't blame them for that. Brian

I said I would write more about my feelings toward this little guy. He
has a place in my heart that no other can replace. I will miss the
smiles and hugs he gave. Dispite the braces and cast, he always greated
me with a smile and I will never forget that. I want to thank you
Debbie for letting me into your life and family. Your was not the first
and I hope, not the last. Each of you I meet have a special place in my
soul. You help me forget my childhood and remember only the good. I
pray for each and every one of you each night. Brian

Rachelle <ofmanynationz@...

Glad you brought this up. Been giving it a lot of thought.

When my cluster HA started, I was emailing an offline friend who was also struggling w bad head aches. She said that the chiropractor was doing adjustments that relieved the head aches. That makes sense to me.

While not handicapped by it, I do have a few back problems, including a few birth defects like scoliosis and something near the coccus and a narrow canal under the spine that I can't think of the medical term for now.

These have prolly moved or affected my other organs. A scan showed a bit of spine pressing on my tummy. No treatment was recommended and I don't seem to have any real serious problems from that, including how I look. And leg problems from the spine problems slow me to get to bathroom.

I'm suggesting that possibly some of us do have back problems that effect both our head aches and Incont that may response to medical adjusting and massage. brwmeistr <brwmeistr9@...
--- John Lameck wrote: I didn't write the part below:
It's interesting that so many of us also have migraines. I doubt there's any connection between migraine and incont; in my case I know there isn't a connection, but the coincidence is interesting none the less.
My migraines normally waken me about 4AM, without any known aura, but with the full-blown pain, nausea, photo-and phonophobias. Normally I take Amerge and go back to bed,
with good relief within an hour or so, but occasionally even when the pain is gone I'll continue to have the nausea and photophobia, so I have to stay home and in a dark room.
Fortunately, I've not had one for many months now.

I send my best wishes to all here. Brew

LPH.Best of health & spirits.R Butterfly 3 Changing Color Heart

Its six per the PDR anyway.....
but it doesn't matter, usually works w/first dose, def by the time you take pill numb three (second dose since u take two to begin with)
Jen
**************************************
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Be very very happy that you don't!
arrjkd <arrjkd@...

I would like to know what migrains has to do with being incontient? If
someone has that awnser please tell me. I get headaches but I don't get
migrains

Brew said that for him, migraine and incontinence were unrelated. For
me, they are linked (sort of). I get a migraine, and I end up wetting
more, and more frequently. When I was a kid and would get migraines, it
was almost a given that I would wake up soaked to the bone (I didnt always
have incon problems). This may be related to the heightened
sensativity to _everything_, and the desire to just sleep through whatever
may come.
Additionally, some of the medications for incontinence can trigger or
aggrivate/worsen migraine. Plus (as someone else mentioned), proper fluid
intake can help prevent all kinds of health problems, including muscle
aches and cramps, LOTS of different types of headache, etc. When dealing
with incon, many people will try to restrict their fluids, thinking that
it will help. As a result, they can end up with all kinds of other
problems. (Including much stronger urine, which would tend to lead to
faster skin breakdown/rash, as well as stronger odors.)
Thankfully, I've been able to avoid having a full-blown migraine for
several years now. I still keep Imitrex on hand, though, just in case.
--Wulf
"Don't dream it, be it!" -- RHPS

Hi everyone and thank you for the prayers for my family and me. I'm
home and my husband is back home with Bruce. My Daughter is still in
the hospital because they are finding blood in her skull so she may
need sugery tomorrow to release that. I'm so sorry I just don't know
what to write. My mind is still filled with my memories of Brian. I'm
crying as I try to write this. I just don't know what happened and why
we had this accident. The police are checking our pick up, or what is
left of it, to see if they find any faults with the brakes. All I can
remember is stopping and suddenly spinning. The kids were wearing their
seat belts. Brian was sitting in the saddle seat behind the passenger
seat. The next thing I knew, they were gone. My life went with them and
this hurts so much. I can't sleep thinking about this. It's hard to
have anyone to be around me. I'm shaking and just feel like giving up.
So please understand, I just need some time to get my mind back
together.
I want to thank all of you. Your prayers are helping. Knowing that we
helped another child live longer helps also. Debbie

Thank you Brian for helping Debbie and Charles. Brad and I talked to
Debbie today. I was surprised she called and we shared our tears. Jacob
was upset about all of this and loosing his new friend. My heart felt
wishes go to all of you. Debbie said thank you for the wishes and
prayers. She got a call from the family that recieved the heart
transplant. There son is in recovery and doing great. For the first
time since he was born his skin is red and has no blue tone to it. He
has a smile and spoke for the first time since the surgery. He wondered
where the heart came from and was told it was from a boy like you. He
said a prayer and asked jesus to give him a new heart so he could come
back. That was so sweat and Debbies heart was lifted by that. Jacob
sends his prayers to all of you too. Terry

If the incontinence is neurological, then it would make sense to have some other neuro symptoms as well, could be migraines are one of them....who knows.
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hello ive only just checked my mail!And im sitting here crying im so
sorry for the loss of your children.they say time heals broken
hearts...debbie to you i pray you rest and heal in good time...hold
your hand on your heart and know that brianand your baby are at
peace.im am so sorry for your loss and pray for you and your
familyxxxbest wishes Tina and familyxxgod bless --- In Information-

Glad you brought this up. Been giving it a lot of thought.

When my cluster HA started, I was emailing an offline friend who was also struggling w bad head aches. She said that the chiropractor was doing adjustments that relieved the head aches. That makes sense to me.

While not handicapped by it, I do have a few back problems, including a few birth defects like scoliosis and something near the coccus and a narrow canal under the spine that I can't think of the medical term for now.

These have prolly moved or affected my other organs. A scan showed a bit of spine pressing on my tummy. No treatment was recommended and I don't seem to have any real serious problems from that, including how I look. And leg problems from the spine problems slow me to get to bathroom.

I'm suggesting that possibly some of us do have back problems that effect both our head aches and Incont that may response to medical adjusting and massage. brwmeistr <brwmeistr9@...
--- John Lameck wrote:
It's interesting that so many of us also have migraines. I doubt there's any connection between migraine and incont; in my case I know there isn't a connection, but the coincidence is interesting none the less.
My migraines normally waken me about 4AM, without any known aura, but with the full-blown pain, nausea, photo-and phonophobias. Normally I take Amerge and go back to bed,
with good relief within an hour or so, but occasionally even when the pain is gone I'll continue to have the nausea and photophobia, so I have to stay home and in a dark room.
Fortunately, I've not had one for many months now.

I send my best wishes to all here. Brew

LPH.Best of health & spirits.R Butterfly 3 Changing Color Heart

Hi everyone. In time I want to share my thought about that boy and his
family. For now I just want to pass this on from Debbie. She is very
depressed at the moment and wants to be alone for a while. I can
understand. It may be a while before they post or even look at email.
Charles left for Houston to get Bruce. He is doing great and is
walking. Debbie does want to get pregnant agian. I hope it can happen.
That's all I can write for now. In time, all will heal and the good
memories will flow. Brian

Sorry everyone. I forgot to sign back out after looking at Debbie's
mail for her while I was on the phone with her. . Brian

I would like to know what migrains has to do with being incontient? If
someone has that awnser please tell me. I get headaches but I don't get
migrains

Thank you for posting that Charles. Still call me if I can still
help you. Brian

I don't know how to put this all to words. My heart is heavy but
lifted some. Debbie is doing better. She and I cried together about
loosing Brian and my unborn child. Debbie is taking this very hard.
She fills the accident was her fault but I'm not going there. She is
in terrible pain and if it wasn't for my daughter giving her a hug.
Bruce is doing better despite road rashes and multiple bone breaks.
He had surgery today to have plates put in his forearms. I hope we
can all gather together before the funeral for Brian.
I have to say thank you to Brian for staying up and sharing a cry
with me. My sisters were not much help and my mother was too
emotional for me to handle. It helped talking to another man about
this. You help and strength pulled me threw some hard decisions.
Brian was pronounced brain dead at 3AM the other morning. I allowed
the doctors to keep him attached to life support in hopes some
organs could be saved. (Brian talked with me about that) I'm happy
to say Brian's heart went to a five year old at Texas children's. It
was a near perfect fit and match. The doctor tried to get the liver
but something was found that may have effected Brian later in life.
Brian's liver was full of tumors. They were cancerous and were
missed threw all of this.
I know now the the lord saved Brian from further pain. Maybe this
was by design. It still hurts but having hind site helps. Maybe god
let this happen because Brian had been threw so much already and
didn't want him to feel any more pain. All I know is that the
doctors said Brian had so much brain injury, he felt nothing since
the accident.
I want to thank all of you for the support you've shared. Debbie
and I have a private email address if you would like to leave a
note. It's debcharls3@... . Deb should be released in a
couple of days. The doctor said she could get pregnant again. Just
wait a few months. I wasn't in on the talk so I don't know what the
damage was. I do know the placenta tore away from the accident and
nearly bleed her to death. Her chest is bruised and she broke a bone
in her left wrist.
I'm so sorry all this had to go threw here. I just hope Bruce makes
it threw. He still has a way to go. Charles