Discussions By Condition: Medical Stories

4 years of issues and still no results

Posted In: Medical Stories 3 Replies
  • Posted By: ashleym23
  • May 28, 2008
  • 03:48 PM

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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3 Replies:

  • Blaze - I highly doubt this three year has lyme disease. I know you think everyone does but her symptoms have been a problem since birth and have not come on suddenly :)I am very sorry about your daughter but it sounds like a cardiac issue -- has she had another echo done to see if the hole has closed up? Especially in infants and small children, breathing problems are related to cardiac issues - if unoxygenated and oxygenated blood are becoming mixed (through a defect between r/l ventricles) then that could cause the increased respirations and loud breathing. Now there are some murmors that are common in newborns-- since the lungs don't work until birth, there is a normal hole that bipasses the lungs in utero (is this what she had?).the other issue of course, is that there might be something genetic going on. Unless cardiac and respiratory issues have been ruled out, I wouldn't necessarily be seeing an ENT as my first choice of a specialists. A pediatric cardiologists would be a better bet. The frequent urination might or might not be relevant -- it could be a sign of a UTI, diabetes or just stress incontinence (she has probably only been toilet trained for 1-2 years and hasn't quite gotten the hang of determining how often she needs to go and when she can hold it.) However, in the light of all the other symptoms, it should also be checked out.is there a good pediatrician in your town that specializes in complicated patients? Do you leave near a teaching hospital or medical school - they tend to have very good physicians on staff and in practice nearby. There are fantastic pediatricians out there - this is a complete generalization but perhaps one that is a bit younger - while the older doctors are very good, sometimes they haven't had as much experience with very sick children - just because of how their training was in the past - now, pediatricians have a lot of education and experience with highly acutely ill children. And might be able to guide you a bit better.Good luck. Just in conclusion - get cardiac and respiratory issues ruled out first.
    Anonymous 42789 Replies Flag this Response
  • hello, thank you for giving me a better reason than Lime Disease. I really don't think that my daughter was bitten by a tick at a month old. We are going to see a ENT on June 9 because she does have sleep apnia. The last doctor who gave her a sleep study said she should lose weight. Well she will be 4 in Sept. and weighs maybe 30 lbs.(not even sure if it's that much) I don't think weight is her problem. So I am taking her to see the ENT that put tubes in my sons ears to get a better opinion. She does have 3 appts. on July 2 at Children's Hospital. We half to drive about a hour and a half away from home to get to see any good doctors because all of ours suck. So she will be seeing that day Cardo, Kidney doctor, and her and my son will be seeing Genetics to be tested for EDS. Eds is a very crazy thing. My husband does have it so both our children have a 50% chance of having it. Most of the people with EDS do have some kind of heart problem. It can be mild to sever. They can also have bladder problems because their bladder tissue is usually weaker than ours which causes them to have enlarger bladder which causes them to not drain their bladder all the way when they go to the bathroom so they go more often. Just to let you know how bad our doctors are around here, the only reason I know that my daughter had a bad heart echo is because I had to get a copy of their medical records to go to the genetics in July. So I was reading through them and found her results. It said she had a hole in the Patent Foramen Ovale with right to left shunting. This was done when she was 4 to 5 months old. I never new the results and there was never a follow up done on this either. Also keep in mind that this was not done because they heard a heart mummer, it was done to check for heart problems because of EDS. About her going to the bathroom a lot. I would agree with you that she is still working on that except for the fact that she has been potty trained for almost 3 years and has NEVER had this problem until now. I have two children and I would say that a child who is just starting potty training would go to the bathroom several times not a child who has been potty trained for 3 years.So I thank you for your opinion. If you have anymore please let me know. I will keep you updated on what's going on. ashley
    ashleym23 4 Replies Flag this Response
  • Patent Foramen Ovale tends to be normal in infants. It is actually a bipass system in utero -- the hole allows blood to get to both sides of the heart without going through the lungs - which aren't in use until after birth.It tends to close up days to weeks to months after birth. But in some people it can remain open. It doesn't tend to have any symptoms however, it can be associated with other cardiac defects. Since she has a history of other problems and the possible EDS - I would have thought they would have done a f/u. The bladder control could be EDS or it could be a little girl who is under a lot of stress and is frightened (many doctors appointments, etc) reverting to a younger age. It can happen to children who are sick. She is a little light for her age - so I don't understand why they told you she needed to lose weight? Loosing weight in patients with sleep apnea is only affective if it is the weight that is contributing to it - like with obese patients. A three year old unless incredibly heavy is not going to have weight as the cause. I have to say, the doctor sounds like an idiot - did he even see her?Personally - try to get her to wear the CPAP machine at night while you wait for your July opinion. I think ultimately the ENT issue is going to be r/t cardiac or respiratory. I am glad that you have an appointment with specialists - I am sure they will help you a lot more than who you have been seeing. Good luckAmanda
    Anonymous 42789 Replies Flag this Response
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