Guest guest Posted August 20, 2000 Report Share Posted August 20, 2000 Some, if not all, of what you describe fits my son (now 28) when he was very little. He had allergies to some things in food (his was citric acid/ascorbic acid or any type of vitamin c additive) and would react much the way you describe at times. Certainly, it's possible that your daughter has something that is more significant and in fact, possibly something that has a mito base. Maybe Mike had a bit of a mito problem which impacted him when he act certain foods - but it's probable that there are other things going on, including just typical behavior for her. You'll get through whatever comes, you've been through the very worst and made it. Kathy ª¿ª Paranoid or Not?? > Hi all. > Sorry I haven't posted much, been really busy with school starting again > and all. > I have something that I would like your opinion on...please, be honest. > I'm driving myself crazy with worry... > My 2yo daughter, Gracie, has been having some strange things going on, > and it's just really bothering me. Matty's mito isn't supposed to be > inherited, but didn't all mito have to start somewhere?? Now Gracie's > symptoms don't reflect Matty's hardly at all, but Pearson's is so unlike > other mito diseases that I'm just not sure. I thought I would bring it > to you all, and see what you had to say. > These are the things that I've noticed about Gracie... > > *excessive tiredness/ sleeping (sleeps 16 hours a day, she will be 3yo > in November) > *oral motor apraxia, absent gag reflex, and continues to suckle (all > dx'ed by speech therapist) > *alternates between constipation and diarrhea (it's either one or the > other, no in betweens) > *alternates between eating large amounts of food and not eating hardly > at all (but this has no effect on her bowel patterns) > *mild autistic-like symptoms (i.e. walking on tip-toes, refusal to make > eye contact, withdrawn and anti-social, prefers to be alone vs. with > other children--gets more uncomfortable the more people are around, > nervous habits, such as rubbing fingers together and scratching her own > skin, STRONG preference for milk over all other food and drink) > > Now the autistic-like symptoms come and go. Some days it's really bad, > and other days, they are non-existant. And some days she's sleepier than > others. > She's had no testing done, other than the eval. by her speech therapist. > She did have her hemoglobin checked a while back, and it was at the > lowest normal level. It has not been re-checked since. > She has a doctor's appt. for her daycare physical in a couple of weeks, > and I'm just wondering if this is something that I need to get checked > out or if I'm just being paranoid. If it were just one symptom, I > wouldn't worry so much, but all of these together are just about driving > me crazy. > Also, is there any way to definitively check for mito other than a > muscle biopsy?? I know that Matty was dx'ed by blood test, but I don't > think that holds up for other mito, does it?? > > Thanks for any thoughts... > > > > > > > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2000 Report Share Posted August 21, 2000 Hi all. Sorry I haven't posted much, been really busy with school starting again and all. I have something that I would like your opinion on...please, be honest. I'm driving myself crazy with worry... My 2yo daughter, Gracie, has been having some strange things going on, and it's just really bothering me. Matty's mito isn't supposed to be inherited, but didn't all mito have to start somewhere?? Now Gracie's symptoms don't reflect Matty's hardly at all, but Pearson's is so unlike other mito diseases that I'm just not sure. I thought I would bring it to you all, and see what you had to say. These are the things that I've noticed about Gracie... *excessive tiredness/ sleeping (sleeps 16 hours a day, she will be 3yo in November) *oral motor apraxia, absent gag reflex, and continues to suckle (all dx'ed by speech therapist) *alternates between constipation and diarrhea (it's either one or the other, no in betweens) *alternates between eating large amounts of food and not eating hardly at all (but this has no effect on her bowel patterns) *mild autistic-like symptoms (i.e. walking on tip-toes, refusal to make eye contact, withdrawn and anti-social, prefers to be alone vs. with other children--gets more uncomfortable the more people are around, nervous habits, such as rubbing fingers together and scratching her own skin, STRONG preference for milk over all other food and drink) Now the autistic-like symptoms come and go. Some days it's really bad, and other days, they are non-existant. And some days she's sleepier than others. She's had no testing done, other than the eval. by her speech therapist. She did have her hemoglobin checked a while back, and it was at the lowest normal level. It has not been re-checked since. She has a doctor's appt. for her daycare physical in a couple of weeks, and I'm just wondering if this is something that I need to get checked out or if I'm just being paranoid. If it were just one symptom, I wouldn't worry so much, but all of these together are just about driving me crazy. Also, is there any way to definitively check for mito other than a muscle biopsy?? I know that Matty was dx'ed by blood test, but I don't think that holds up for other mito, does it?? Thanks for any thoughts... Quote Link to comment Share on other sites More sharing options...
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