I have never heard the word remission used in relation to mito. Usually its a matter of good days versus bad days or good months then something assaults the...
Were currently going through something similar with Brandon... his symptoms have largely improved since he first got sick... we now deal with very mild...
Hi Laura, Ok I gotta say you gave me a good laugh! We have one of the best pedes I can imagine and she s gone to bat several times on this issue and lost....
hope everyone's halloween was calm and uneventful. halloween is always a challenge for us because zoe's feet and back start hurting her halfway thru the trip...
<The question I have for you all is have you ever heard of a mito disease going into remission?? Any one have any suggestions??? Or familiar experiences???> ...
<how portable is your vent? Are you able to still take your daughter ... like with a vent for her? Any suggestions.. ideas?> ... Hi Kim, Laura's children are...
Hi Nicole, Strobe lights make me naseated too. They can also bring on seizures too. I hav eto watch that with my son. We didn't go to any houses with strobes...
I know zach will never be able to keep up w/ peers his age, but, I am wondering if fatigue levels will ever improve? I try to low key it during the week when i...
I myself have problems w/ those lights. They give me a headache . I try to avoid them . If they bother her i'ld probably not take her to them but very few of...
Hi Sarah, We have the same issues here but we found first that continuous feeds seemed to help her fatigue greatly! Im not sure if Zach is tube fed or not but...
I would not ignore your child being in ketosis. My son is on the ketogenic diet, so it's "normal" for him, but for people who are not supposed to be in...
laughing, because that's a very good question my new blood pressure monitor is in the box in front of me, once I read how to use it I'll be able to answer...
Hi JoAnne I was wondering if you could please send this info to me as well? We're still looking for answers for Maddie, and have just begun looking at FOD's....
In a message dated 10/27/2005 11:19:59 P.M. Eastern Standard Time, karenbrbkr@... writes: Also when they dialated Justin's eyes he fell asleep and he...
I know there have been alot of posts about this lately, but I thought I would throw this out there... Tyler (8 months, so far testing neg) has very stinky pee....
Lots of stuff can do this, even in a healthy child; Garlic, asparagus and B vitamins (they will express in your milk). Can you relate the smell to anything...
... I cant even ... Does it smell like urine? If so, it's probably concentrated and that's the smell. I know what I smell. On the list of chemical smells...
It doesnt smell like urine at all.... If I had to compare it, I would say it almost smells musty, like rotten socks. Ive noticed lately his sweat smells...
Some common urine odors have been associated with the following. There are others but far less common. If you are concerned, bring a sample to the metabolic...
we too get intermittent musty smell to odor and body...I've had our son checked for PKU - it was negative but of interest the tyrosine level was elevated (the...
My son Craig is 8 and has nonspecific mito. His symptoms include ataxia, seizures, weakness, pain, tremor, etc. They started when he was two, and have...
Hi, The droopy eyelids made me think of Myasthenia Gravis. Info can be found at http://www.mdausa.org/disease/mg.cfm Just a thought. Sue (sped teacher)& Jack...
You see William did not even show signs of it until about 7 months ago when we woke up in the morning and saw his eyes drooping and rapidly progressed from...
Droopy eyes are also pretty common in Mito too. Several of my children have ptosis (droopy eye lids) and it is a muscular weakness, in our case, from stroke...
Well, the wonderful fall/winter flu season has hit our home! The past two weeks we have had lots of diarrhea and the girls have been weathering through it...
Darla: l so sorry about the flu in your house. Hopefully all will make it thru without a hospital visit. Not really sure about the flu shot. Chris was running...
Asenath also has issues with inturning of the feet. She wears AFO's too and still turns in. For her, it is a problem with weak thigh/hip muscles causing her...
Sorry to hear about all the illness.. we were scheduled for the flu shot, and Conan came down with vomiting, diarhea, and was acutally hospitalized for...
Hi Darla, Our Pediatrician and Subspecialists ALL refuse to give the girls flu shots if they have any signs or symptoms of an active infection. Fever is not...
In a message dated 11/3/2005 11:11:10 A.M. Eastern Standard Time, honeybear50317@... writes: We are scheduled to take all 11 kids to their ped tomorrow to...
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