Hello everyone, I'm trying a new method, the internet. I'm trying to figure out what is going on with my daughter who is now 3 and a half. When she was born she weighed 9lbs. 14oz. She did have low sugar and jaundice. When she was about a month old she started breathing funny. She would be wide awake and it would sound like she was snoring. About 3 months later came the weight loss. At 4 months she weighed about 16lbs. and in a week went to 10lbs. Now she has always had trouble gaining and keeping on the weight. She is 3 and is the same size as her 2 year old cousin. After the weight she started to stop breathing when she was sleeping. We took many trips to the ER. Her breathing has never really gotten better. We had her adnoides taken out, that did nothing. Then we had tubes put in tonsils taken out and adnoides again because they grew back, that did nothing. Then they gave her a sleep study. They said that she had sleep apina and wanted her to sleep with a c-pap machine at night. Her ENT said that she wouldn't wear it because of her age so he said that she should loose weight. WHAT? Are you kidding me? She is almost 4 and weighs like 28lbs. So needless to say we have a app. with a different ENT in June.
In all this I should say that her father has Ehlers Danlos Syndrome (Classic Form). My daughter has had her shoulder possibly come out twice. She gets bruises very easy but we have not had any trouble with her skin tearing. She had a heart echo when she was a baby that I just recently found out showed she has a hole in a valve to her heart. A new thing that she has been doing just within the past few months is going pee way to much. Maybe 4 to 5 times a hour. We can't even make it through Wal-Mart without going to the bathroom several times. So take all this within a matter of 3 almost 4 years and we are still no where. She and my son will be going to the genetics on July 2 to be tested for EDS because they both do have a 50% chance of having it. I was just wanting to see if anyone has any other ideas?
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