Re: sudden weight gain

[Guest guest]

Kass;

Sorry, I don't remember if Madison has blood sugar issues. Does she see

an endocrinologist? Just a possibility that this weight gain represents

a change in her insulin production. Ask your doc to check her HbA1C ....

three month average glucose.

This is just a thought since some adults have this problem ... myself being

one!

Jean

Kass wrote:

Hi all

:-) Madison has me stumped and I thought I'd come here and see if anyone has any ideas for me. We saw her pulmonologist today and while we got good

news on her PFT's (improved) her weight has shot up from 61 lbs in September

when we last saw him to 68 lbs today. Looking back at her report from Mayo

in early November, she was up to 64 lbs then.....so a 7 lb weight gain in

4 months time, weight she really didn't need to gain. There has been no

change in her diet, no increase in calories, and no changes in activity levels

(always low).

The only other thing happening during this time was that she would become swollen, or develop edema, whenever we'd pump at a rate higher than 75cc's per hour. We checked kidneys when we were at Mayo and everything looked

good there, so Dr. Whiteman had me ask urology if there was anything they

could think of that might be causing this. While they did find that her

bladder is very enlarged (holding twice as much urine as she should be) and

the bladder wall is thickened, they found nothing that would be the cause

of the edema and suggested we talk to our cardiologist here and see what

thoughts she might have. Overall she wasn't concerned about it being heart

related (Madison does have Mitral Valve Regurgitation that has remained basically

stable) but said that I could bring her in for an Echo the next time it happened.

Because it was right before the holidays we decided to keep things simple

and not increase the rate till we had the time to investigate this more,

so no cardiac testing has been done though she really has no symptoms that

would indicate this being the cause other than the edema.

Numerous times during the holidays she seemed "puffy" to me, however because of her low tone she's a more "rounded" child than the average 7 year

old (has more of a toddler build) so its honestly hard to tell alot of the

time unless its extreme. I truly thought I was probably seeing things, though

there were times when others commented on it also. I've also been shopping

for her the last few weeks preparing for Abby's upcoming Wish trip and while

we had just moved up to size 8 in September, I found I have had to take all

her pants back and get size 10's for her to be in them comfortably. With

this I was very interested in what she weighed today, but was unprepared

to hear she's had this large of a weight gain so quickly.

I just am not sure what to think. I cannot figure out a reason for

the weight gain, but am concerned that it might be related to the puffiness I have felt like I was seeing. Has anyone seen something similar and can

relate?? Any ideas or words of wisdom??

-- BIG hugs,

Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(5-Mito)

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[Guest guest]

Kass,

I don't have any answers but we are dealing with this in Will also. We

actually have to keep a range of sizes in clothes available and see what he

looks like when we get him dressed in morning. His weight has also

skyrocketed at times gained 4 lbs in 6 weeks and was barely eating anything.

Will's waist size varies between 22 inches and 28 inches and can change

rapidly. We are seeing lots of DRs this next week and I'll be asking all of

them about it, if I find anything out I'll let you know.

[Guest guest]

Kass,

I don't have any answers but we are dealing with this in Will also. We

actually have to keep a range of sizes in clothes available and see what he

looks like when we get him dressed in morning. His weight has also

skyrocketed at times gained 4 lbs in 6 weeks and was barely eating anything.

Will's waist size varies between 22 inches and 28 inches and can change

rapidly. We are seeing lots of DRs this next week and I'll be asking all of

them about it, if I find anything out I'll let you know.

[Guest guest]

Kass,

I don't have any answers but we are dealing with this in Will also. We

actually have to keep a range of sizes in clothes available and see what he

looks like when we get him dressed in morning. His weight has also

skyrocketed at times gained 4 lbs in 6 weeks and was barely eating anything.

Will's waist size varies between 22 inches and 28 inches and can change

rapidly. We are seeing lots of DRs this next week and I'll be asking all of

them about it, if I find anything out I'll let you know.

[Guest guest]

We are dealing with this with as well. Since being on the cocktail she has gone from a petite little thing to 231 pounds. He Dr wants her on a diet but she does not eat much. She was at 174 pounds just 5 months ago. I myself are looking for answers. She is not quite as active as she was which is some of it , she justs has so many more bad days than good.

Maybe we will all get some answers.

Have a good weekend and please remember us as we leave for another hospital stay on Monday (19th). Jeny has just been doing so poorly and its a 3 1/2 hr car ride one way to the hospital.

Horsley

Re: sudden weight gain

Kass, I don't have any answers but we are dealing with this in Will also. Weactually have to keep a range of sizes in clothes available and see what helooks like when we get him dressed in morning. His weight has alsoskyrocketed at times gained 4 lbs in 6 weeks and was barely eating anything.Will's waist size varies between 22 inches and 28 inches and can changerapidly. We are seeing lots of DRs this next week and I'll be asking all ofthem about it, if I find anything out I'll let you know. Please contact mito-owner with any problems or questions.