Re: Infant not yet diagnosed

[Guest guest]

I am sorry about your daughter's health issues. My son (13 months) isn't diagnosed with mito yet, but it is a possibility. He too was hospitalized after birth due to GERD - acid reflux. He started having breath holding spells this past summer when he got mad, or something hurt him. He will start to cry, hold his breath, turn blue, finally take a breath, then pass out for a few seconds, then start breathing again and cry. He has been put on Tegretol, an anti-siezure med, but not for seizures. It is to help control his choreoathetoid movements, and I think it has helped prevent these breath holding spells. I know another mom and her son takes it to stabilize his moods, so I think it helps keep Caden from over reacting when he gets upset. He hasn't had one since he started taking it, and he used to average about 4 a week. ??? Don't know for sure, but I think it's the tegretol. All of Caden's tests have come back normal, ALL of them. Hope any of this helps. Good luck!

Vicki ~ Proud mom to Caden (13 mo) possible mito

Infant not yet diagnosed

Hello all! My 3 1/2 month old daughter has had health issues since her birth in Aug. We spent 3 1/2 of her first 6 wks in the hosp (2 wks following birth and 2 subsequent stays.) Her main symptoms have been acid reflux, accompanied by cyanosis and heart rate drops. She wears an apnea monitor which monitors her heart and breathing. All of her cardiology and neurology tests have been normal. Her labwork has shown a pattern of abnormalities in her urine organic acids and lactic acid (elevated lactate.) We've seen a ped. geneticist once and will return in a few weeks. She and her genetics counselors indicate that the pattern of abnormalities in her labwork points to a mitochondrial disorder. I wanted to know if anyone's kids as newborns/infants had acid reflux which caused them to hold their breath, turn blue (mostly just in face) and drop the heart rate below 80? I want to educate myself before we have our next visit with the geneticist. Your help would be very much appreciated!Please contact mito-owner with any problems or questions.

[Guest guest]

HI and welcome.

It sounds like our kiddos had a parallel start to life. Lexi was born 6 1/2 yrs ago, and began experiencing breathing difficulties almost immediately after birth. She began having bradycardia incidents, along with dusky spells, reflux, and apnea at around 5 days old. She has been in the hospital 30 times during the past 6 1/2 yrs, most of it the first year as they tried to get a handle on what was going on with her. She wore her monitor all the time until she was 4, and the past 2 yrs we have "graduated" to wearing it only when she is sick.

Hope this helps. Btw...congrats onyour new baby girl!

ruth

mito mom to Mitch (9 1/2) and Lexi (6 1/2) both mito affected and my treasures