Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 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) Home Page (http://home.swbell.net/mcpoop/index1.htm) Updates (http://www.caringbridge.org/tx/mitowhat/) United Mitochondrial Disease Foundation (http://www.umdf.org) "Life is not about the breaths we take, but the moments that take our breath away" Unknown Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Hi Kass, One additional thing the endo might check is her thyroid. Many times someone with a blood sugar issue also develops a thyroid problem. Alice > > > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Hi Kass, One additional thing the endo might check is her thyroid. Many times someone with a blood sugar issue also develops a thyroid problem. Alice > > > 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 Quote Link to comment Share on other sites More sharing options...
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