weak legs? :(

[Guest guest]

,

Unfortunately it seems it's not uncommon for our labs to look good, but feel very poorly. I guess it's the curse of PSC, I don't know. I think you should call the doctor and tell them what's going on, regardless of what they said recently. They need to keep informed and maybe they will think of something else that can be done. Be the squeaky wheel if you need to be. There have been many times when docs swore I was fine and then shortly after ended up in the ER and then admitted for days on end. Just because they're doctors doesn't mean they don't miss things -- they do. You're his mom and you know him better than anyone...go with your gut!!

Prayers coming your way.

Love,

Mel

[Guest guest]

Okay. I am frustrated!

I know we don't go back for 3 months. Noah is still not himself and I don't

know how to make it better. Yesterday, I got an e-mail from his teacher

regarding him after the rehearsal for the Christmas show which will be Friday.

He came to her afterward saying that he was too weak and his legs hurt standing

that long. When I talked to him after he came home and he said it was bad. I

proceeded to put him to bed at 6:30 pm last

night with no complaints from him. He did not get up until 7:15 am this

morning. But everything is fine. He is normal. No changes. <insert sarcasm

here>

I don't know what to do. His liver panels are fine. The only test they said

they want to add next time is bile acid. (but that is for itching--I am

guessing) What else is there for me to do? This child is not living well. And

according to labs he should be. If you ask the docs he is...has anyone else had

this type of stuff?

--A very frustrated, at the end of the rope mom! ()

www.caringbridge.org/pa/nwmartens

(older original site)

www.caringbridge.org/visit/noahwmartens

(newer w/current updates)

[Guest guest]

I completely agree with "call the doctors and tell them what's going on". Keep in mind how many people we've heard here say that LFT's or MELD/PELD scores weren't too high, yet the psc liver fell apart when it was removed. Numbers don't always indicate what's going on. Right now, is terribly itchy. He's spent the last two days doing nothing but sleep and throw up. His bili is up some, but the rest of his LFT's are FINE. (I've seen them, they're good. Alk Phos was only 296, ALT/ST were in the 40's.) He's had a blood glucose down as low as 44 once, and he felt and acted FINE. His sodium has been down to 124, and he's acted FINE. (Should be half out of it with those kind of numbers.) All brought up only to prove my point of the numbers don't always indicate what is going on with the child, and how the child is

feeling. I've had to drill that into the doctors' heads repeatedly. A few of them still don't get it. Get on their case. Maybe he's weak from being sick so much, and his numbers really have nothing to do with it, but in that case, maybe they need to write for PT for him to help him get some of his strength back. And they need to make sure the school is giving whatever accomodations he's going to need because of it. Sending hugs!!! Ami wrote: Okay. I am frustrated! I know we don't go back for 3 months. Noah is still not himself and I don't know how to make it better. Yesterday, I got an e-mail from his teacher regarding him after the rehearsal for the Christmas show which will be Friday. He came to her afterward saying that he was too weak and his legs hurt standing that long. When I talked to him after he came home and he said it was bad. I proceeded to put him to bed at 6:30 pm last night with no complaints from him. He did not get up until 7:15 am this morning. But everything is fine. He is normal. No changes. <insert sarcasm here>I don't know what to do. His liver panels are fine. The only test they said they want to add next time is bile acid. (but that is for itching--I am guessing) What else is there for me to do? This child is not living well. And according to labs he should be. If you ask the docs he is...has anyone else had this type of stuff?--A very frustrated, at the end of the rope mom! () www.caringbridge.org/pa/nwmartens (older original site) www.caringbridge.org/visit/noahwmartens (newer w/current updates) Ami mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Osteopenia, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, ODD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ __________________________________________________Do You

Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com

[Guest guest]

,

The weak legs are a form of fatigue. I used to feel like my bones

hurt when I had the extreme fatigue - imagine the fatigue you feel

when you have the flu - only it hits you at random times and you

can't anticipate it. Add to that the fact that you can sleep 12-15

hours and STILL feel that way, and you feel frustrated AND tired.

This is unfortunately " normal " life with PSC. Sucks, I know. Quality

of life is not measured at all by MELD or PELD. Another thing that

just plain sucks!

The teachers/school need to find ways to accomodate him - like any

child with a disability. He might even have a note for gym that if

he's not feeling up to it, he doesn't have to participate - but if

he does feel good, then he can. You don't want to take things away

from him if he doesn't want to give them up, but you don't want to

make him think that he has to do everything the other kids are doing

if he can't do them. For example, next time there's something where

they'd have to stand for a long time, he should get a chair. Let him

know that it is all right to say that he can't do something if it is

too much for him. I know that'll be hard for such a little guy, and

maybe you'll do a lot of the communicating. Just let him know that

it is essential that he let you know what you need to be asking for

so that he can get it...

Hugs,

Deb in VA

PS - The bile acids are for itching. They only measure it in adults

when you're pregnant and itching. Mine got up over 800 then (among

the highest my high-risk OB had ever seen). Later, when my

cirrhosis worsened and I wasn't pregnant and they weren't checking

that level, I itched worse than I did when I had cholestasis of

pregnancy. It'll be " interesting " to see what his levels are.

[Guest guest]

Deb,

Ok, calls made to Pitt. Call made to

school. He has a chair for tomorrow. I would have for him to fall

off the riser and hit his head or something.

The nurse at Squires office sounded

concerned. She did not like the added sleep. Guess what? He

is STILL tired today…even with added sleep.

What is going ON?

How will they figure it out?

Should I pull him from school?

I could do the home school via PA Cyber.

But then how the heck do I get anything

done? I mean…I intend to work from home. I guess I send Aidan

to school all day. Swap them. Noah will miss his friends.

What am I going to do?

He is currently on the wait list for PA

Cyber. They said he could be in for 2nd semester. That

is an online dealeo I think. He would be done by 11am. He

could go back to bed or nap at least.

Depending on the schedule they would give.

So frustrated.

Mom of Zoe

(13) super soccer player;

Noah (9) UC,

PSC, enthoesopathy and osteopenia and a great soccer and basketball player and;

Aidan (5)

moderately-severely hearing impaired great basketball shot (10-foot

hoop none-the-less)

[Guest guest]

"PS - The bile acids are for itching. They only measure it in adults when you're pregnant and itching." Actually, they've measured 's bile acids a couple of times when he's had a lot of itching but his bili looked okay. Each of those times his bile acid level was high (though I'm not sure how high). Right now his bili is up but the rest of his LFT's are fine. His urso got stopped when he had the pneumatosis and now his gallbladder is full of sludge, so we're restarting that even though most of his other meds are still IV. Ami mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid

Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Osteopenia, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, ODD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ __________________________________________________

[Guest guest]

,

Have you talked to the school about

homebound instruction? With Suzanne it was one hour a day – very doable. Let me

know if you have any questions etc.

LINDA

(Mom of Suzanne,

17; IBD 1/04; PSC 3/04)

From:

[mailto: ] On

Behalf Of

Sent: Thursday, December 21, 2006

1:04 PM

To:

Subject: RE: Re:

weak legs?

Should I pull him from school?

I could do the home school via PA Cyber.

So frustrated.

Mom of Zoe (13) super soccer player;

Noah (9) UC, PSC, enthoesopathy and

osteopenia and a great soccer and basketball player and;

Aidan (5) moderately-severely

hearing impaired great basketball shot (10-foot hoop none-the-less)

,___

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[Guest guest]

Right now Noah does a private Christian

school. I could call the school district he would go to I guess and ask. Is

that what I should do?

Mom of Zoe

(13) super soccer player;

Noah (9) UC,

PSC, enthesopathy and osteopenia and a great soccer and basketball player and;

Aidan (5)

moderately-severely hearing impaired great basketball shot (10-foot

hoop none-the-less)

[Guest guest]

>

> ,

....The teachers/school need to find ways to accomodate him - like any

> child with a disability.

-

For we did a " 504 Accomodation Plan " - this is similar to an IEP,

but focused on medical (physical or mental) issues. " Students can be

considered disabled, and receive services under 504, even if they do

not qualify for, or receive, special education services. "

The process for the 504 was quite straightforward for us - I asked for

a meeting, which included , his independent study teacher, the

high school nurse, and his counselor. I brought copies of information

on PSC and ulcerative colitis, as well as physician progress notes.

The 504 was written during the meeting and included determination of

handicap and affects on major life activity and the specific program

accommodations for the student, the parent, the teacher. Specifics

might include extended time/flexible due dates for assignments,

liberal bathroom privileges/access to BR in nurse's office,

consideration for late afternoon classes, and specific instructions

for regular education teachers (who may not be as understanding).

The 504 is part of the rehabilitation act of 1973. This year, he is

taking 2 classes at the high school, plus his independent study

classes. The 504 has been REALLY helpful for those crummy days or weeks!

Joanne

(, Ca, mom of , UC/PSC 2-06)

[Guest guest]

> The 504 has been REALLY helpful for those crummy days or weeks!

PS - -

As the mom - I have watched go through many similar yucky days

like you are describing for Noah. For my 16 year old, sometimes he

verbalizes feeling bad, sometimes he is irritable and I think he is

having " normal " teenage " stuff " , then he'll feel worse and it will be

more obvious to me or he will describe how badly he feels. Labs do

not necessarily correlate with how he feels. Sometimes his GI

understands and sometimes he says, " well, he shouldn't feel blah,

blah, blah because his disease is not that bad " . Well, too bad.

These kids don't want to feel lousy! They want to be doing everything

their friends are!

I think most of the time I cope by reminding myself that how they feel

is not reflected by a simple lab test or BP measurement. And there

may be no prediction or no rhyme or reason to when they feel well and

when they don't. And sometimes it makes me crazy (crazier?!?).

Joanne

(, Ca; mom to , 16, UC/PSC 2-06; JRA, elevated LFT's, and

abdominal pain/GERD 2000 - undiagnosed PSC? - who knows)

[Guest guest]

Hi,

Don't write often but your comment that his legs ached in addition to

the fatigue caught my attention. I have the same feeling when I'm

even mildly dehydrated. My dr. says it can be low potassium and for

me low B vitamins. I keep a sport drink handy. For a child you might

need pediolite (sp?) It can take 15-20 min. to have the ache and

fatigue start to disappear but it works. When the UC is active you

loose so much liquid and your body just can't get all that it needs

from the food(if you even feel like eating). Anyway it helps me alot

and may be worth a shot if you haven't already tried it.

Anita,WI

[Guest guest]

Hi ,

When my son was school age, (he became ill at age 14 with what was first diagnosed as crohns, then this diagnosis was changed to UC), he was too sick to go to school, and spent a lot of time in Texas Children's Hospital. We were able to get together with the school's ARDS (Admission, Review and Dismissal) comittee and they came up with an IEP (Individual Education Plan) for homebound instruction. This was under the auspices of the Texas Education Agency, Special Education. I took to the meeting with me all the information I had regarding IBD that I had gotten from the National Foundation for Ileitis & Colitis, medical reports, and a physician's homebound statement of eligibility. His home teachers from Conroe Independent School Diastrict, were the same teachers that homeschooled "The Boy in the Bubble". They were terrific! Joe had continuity of education. When he was well enough he attended school, when he was not well, the home school teachers would step in. Thus, he graduated with his class, even though he was at home through much of his high school years. After graduation, he had a period of remission and was able to attend Sam Houston State University with his peers.

Noah does not need the added stress and pressure of the school system breathing down his neck for missed days and missed and uncompleted assignments! Nor do you! I used to cry when I received nasty notes from the principal that Joe was missing too many days, that statistics showed a high failure rate connected to attendance, that I would be reported to a truancy officer if he did not improve his attendance, etc., etc., It was awful!

Noah should be able to do his work from home when he is able and to go to school when he feels well enough. The school system MUST accomodate Noah's needs according to the Federal Disability Act.

Hang in there!

Chris

mother of Joe (32), UC 1987, J-pouch 1999, PSC, acute pancreatitis 03/06, chronic pancreatitis 12/06, CC 12/06

[Guest guest]

Anita,

That is interesting! We used to and still

might keep Gatorade down at the nurse’s office because of headaches he

was getting around 2 pm at school daily and the Gatorade

would take it away. Once and a while if the Gatorade alone would not, we would

add the ibuprofen with the Gatorade…so I find your take interesting and I

will try that!!!

Thank you so much!

Merry Christmas!

Mom of Zoe

(13) super soccer player;

Noah (9) UC,

PSC, enthesopathy and osteopenia and a great soccer and basketball player and;

Aidan (5)

moderately-severely hearing impaired great basketball shot (10-foot

hoop none-the-less)

[Guest guest]

Thanks Chris. I have a lot to learn.

That is so interesting about the boy in the bubble district. I am betting you

all were easier to deal with.

I also have the hearing impaired child. It

is all laid out for him. Not so much for Noah. I am sure you know what I

mean.

I will have to find out what I need to do.

P.S. Merry Christmas!!!

Mom of Zoe

(13) super soccer player;

Noah (9) UC,

PSC, enthesopathy and osteopenia and a great soccer and basketball player and;

Aidan (5)

moderately-severely hearing impaired great basketball shot (10-foot

hoop none-the-less)

[Guest guest]

,

My Noah's teacher allows the kids to keep a sport-type water bottle at

their desks throughout the day. (It has to have one of those spill-

proof pop-up type lids.) He keeps it in his bookbag and brings it home

for frequent washings. I like that she keeps them hydrated by allowing

them this during class - so long as it doesn't become a

problem/distraction. Maybe your Noah's teacher would entertain

something like this for all the kids in his class? Just a thought.

Maybe he'll be able to relax, at least, through the holiday and be

more ready to face the long day at school after break...Here's hopin'!

Merry Christmas!

Deb in VA

[Guest guest]

Deb,

Honestly, his teacher is wonderful and

will allow for whatever I ask. She wants him there and attentive and she

knows he enjoys learning.

I think I will send her an e-mail and

ask. She will be fine with it.

(But I might forget. LOL!)

She is a first year teacher though and she

has a heart of gold. We are so lucky to be going to a Christian school

where they absolutely adore Noah (and all the kiddos). I am sure it is

that way in most elementary schools too. I just don’t seem to have

paperwork to go through or rules that come from above…they just do what

they want and what they believe to be right.

Great ideas I am getting here.

Thanks all,

Mom of Zoe

(13) super soccer player;

Noah (9) UC,

PSC, enthesopathy and osteopenia and a great soccer and basketball player and;

Aidan (5)

moderately-severely hearing impaired great basketball shot (10-foot

hoop none-the-less)

[Guest guest]

My interest was peaked when I read about weak legs. I have been

complaining about this for at least 10 years and none of my docs had a

clue. The weakest was the upper leg but I could not balance very well

either. I had many other medical conditions so i thought it was from

that. Lately, I started to fill a 3 liter bottle with water to let me

know how much I am consuming and I started to take inosital, I asked

the doctor if I had a magnesium deficiency but he said try the

inosital. My legs are so much stronger I cannot really believe it. I

am doing a few other things simultaniously so I do not which is

actually doing it but as you all say, it is the water.

Marsha PSC 06

>

> Hi,

>

> Don't write often but your comment that his legs ached in addition

to

> the fatigue caught my attention.

[Guest guest]

Marsha,

Okay, after the day I have had, your post

helps me…as do the others. Mostly just knowing that docs don’t

know it all and that we (“the supposed idiot patient/caregiver”)

have to just try different things. Simple things…oh do I hope it is

as simple as the things suggested today. So, I move to taking some deep

breaths…on to trying the suggestions of actual PSCers, who have a

freaking CLUE. Thank GOD for this group. I don’t feel like

this kid is crazy, or that he is blowing things out of proportion. I do

still feel sad that apparently I have NOT found the place for him to be treated…and

I DON’T know what to do about that. I thought I had. But

maybe it is time for me to strap it on and just tell them that they don’t

have a clue, but it is time for them to listen and take notice…or just

wait for Dr. Ben Shneider as he deals with cholestatic diseases…which I

do think are a horse of a different color since the liver itself is fine

(meaning tissue) but the ducts aren’t for a long time…but that does

NOT mean that there are not symptoms. There is the whole BRICK WALL thing

though…once it hits the tissue…isn’t it too late?

Babble…on ….that’s what

I do when I am stressed….which I am.

Love and blessings for a joyous holiday,

P.S. What is Inositol?

Mom of Zoe

(13) super soccer player;

Noah (9) UC,

PSC, enthesopathy and osteopenia and a great soccer and basketball player and;

Aidan (5)

moderately-severely hearing impaired great basketball shot (10-foot

hoop none-the-less)

My interest was peaked when I read about weak legs. I

have been

complaining about this for at least 10 years and none of my docs had a

clue. The weakest was the upper leg but I could not balance very well

either. I had many other medical conditions so i thought it was from

that. Lately, I started to fill a 3 liter bottle with water to let me

know how much I am consuming and I started to take inosital, I asked

the doctor if I had a magnesium deficiency but he said try the

inosital. My legs are so much stronger I cannot really believe it. I

am doing a few other things simultaniously so I do not which is

actually doing it but as you all say, it is the water.

Marsha PSC 06