Hi Y'all

My name is Susanne and my daughter Christina (7yo) was diagnosed with OSA in October.  Our neurologist was looking for RLS and found possible RLS and severe OSA.  Her first sleep study showed 200 Hypopneas and 97 arousals/hr and 8 leg movements/hr.   Her second test (a week later) showed 117 hypopneas (28/hr on her right side but 1.8 on her back), 1 apnea, 8.9 leg movements/hr and a desaturation of 84% (they forgot the pulse-ox monitor the first time, Chris is allergic to adhesives and the tech was a little freaked out setting her up for a sleep study without any tape).  Chris went to an ent and was told that the adenoids had to go (removed before Thanksgiving), but that the tonsils were fine.  

We went back for a follow up with the neurologist and he was excited that she had flunked the sleep test so badly.  But he did not want to do a follow up sleep study, he said no snoring---no problem.   He told me to stay up with her and watch her leg movements at night.....between 2 and 4am she moved more times than I could count, the rest of the time she was moving about every 10-15 minutes.  I was watching her breathing.....she would breath every 3 seconds, and then it gets slower and slower and slower until she takes a big breath and then does not start again for 15 seconds and starts the whole thing again.  Does this seem like Central apnea or OSA????  My hand was on her chest and there was no movement at all during that time....kind of scary.  I told him this and he did not seem concerned at all......he was only interested in giving her massive quantities of Iron to try to eliminate RLS, he would not order a sleep study to rule out continuing OSA, only RLS.

I have prevailed and she will be having another sleep study tomorrow.  What I want to know is who is supposed to be following up on her....her PCP has never seen a child with OSA....her neurologist seems more concerned about RLS that OSA.....who's job is this (other than mine)??????  Are kids with OSA supposed to get flu shots?  What am I supposed to do when she gets a horrible cold...now that I know that she is not breathing well in the first place I am concerned about keeping her breathing.

Susanne

PS the sleep study tomorrow is only for RLS, it is a base line (again), no C-pap trial or anything related to OSA.

I don't have children with sleep apnea, but when my pcp suspected sleep apnea, I was sent to a pulmonolgist.  He ordered the sleep studes and has been my "sleep doctor" ever since.  Hope this helps.

mimiw

Hi Susanne and Welcome!

You have to get a new doctor who is competent in treating sleep disorders.  I'm appalled at the level of the neurologist’s ignorance and incompetence.  Many apnea/hypopnea patients do not snore.  RLS is a neurological disorder and his thing, but he should have followed up with the hypopnea.  To find a doc in your area, look in the FAQ section (top post in "Sleep Apnea Help" area) and click the "Find a Sleep Doctor" link.  It may be a little difficult to locate one who works with pediatric patients, but you have to find one.  Your daughter’s hypopnea problem is moderate and border’s on severe (>30 events/hour).  According to her sleep study, it does not sound like she has central apnea.  Rather it is more likely she has Upper Airway Resistance Syndrome (UARS, search for it in the upper right search field.  You will find many posts), where hypopneas rather that full apneas occur, although you see full apnea when you watch her.  You need to describe what you see to a competent doctor and have that reassessed.  No matter what is going on, her breathing disorder must be treated.  She is having too many events and her oxygen levels drop too low (normal is >95%).  CPAP therapy is the treatment of choice for both apnea and hypopnea.

Also, your daughter may have Periodic Limb Movement Disorder (PLMD) which is the sleeping cousin to the awake RLS.  However, she may not even have it at all.  There are two main causes of limb movement during sleep.  One is part of the effort to breath during a hypopnea/apnea.  It is eliminated with CPAP therapy since the effort to breath is eliminated.  The other is PLMD.  Since PLMD is neurological, it is not eliminated with CPAP therapy.  Therefore, the only way to differentiate between them is by the use of a CPAP during a sleep study and observed if the limb movements remain or are decreased.

If she actually does have PLMD, (and remember you don’t know this yet) PLMD can be exacerbated by anemia.  It is possible that if she is not anemic, then excessive iron intake may be more detrimental than beneficial.

Find a doctor who knows what they are doing.  I am really bothered and angry about this doctor, and keep us posted!!

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Hi Susanne.  My son was also diagnosed with OSA and had his tonsils and adenoids removed last October.  He was 14 months old at the time.  Now, I notice the same thing as you with the breathing.  Breathes fine, then takes a deep breath in, lets it out, then nothing for about 10-15 seconds.  When I described it to his ENT, he suspected central sleep apnea so we're having another sleep study on the 7th.  I'm relieved to see that Vicki just posted that it may be not apnea and UARS instead.  I'll have to look into that more.  

Where do you live?  If there's a good children's hospital nearby, I would check their website for a pediatric pulminologist or ENT to help you out.  Good luck with everything.  Persistence pays off with our kids.  We've spent way more than our fair share of time in the children's hospital with my son's birth defect (long story) and sometimes us moms know what's best for our kids.  Take care.

Sara

Hi Vicki'

I have given serious thought to firing our neurologist.  I don't feel that Chris is getting the proper attention from him, and he is definately not listening to me.  He is supposed to be the best most experienced neurologist in town, and Chris came to him for evaluation of neurological issues, not apnea----apnea is most likely an incidential finding.  I don't know where else to go, there are a limited number of pediatric neurologists here.  I called a pediatric pulmonologist and they were not at all interested in seeing her.  There is a sleep center at a local hospital for children.....if our neurologist does not treat her for apnea (assuming that she still has it---sleep study tonight) I will be taking her to the other sleep center.  I don't want to upset Chris's chances of getting a proper diagnosis for other neurological issues she is having by ticking off the neurologist.....but if she is not breathing the neurological stuff won't matter.....I feel like I am inbetween a rock and a hard place.

Chris has already proved herself to be a medical zebra (or as we like to call her spotted zebra) by being diagnosed with a plexiformfibrohistocytic tumor between 2 and 3 years old (300 cases of this cancer worldwide in the last 30 years, we know of 2 other kids with it and Chris has had it the longest)  So I don't feel like I can just blow off the neurologist even if he is a jerk, he may be the only one with the ability to solve her other neurological mysteries.

Susanne



Last edited by tatamom on Sat Jan 06, 2007 9:38 pm; edited 1 time in total

Hi Susanne,

I understand your dilemma.  I'd hold off on the iron supplements and just go ahead and go to Children's hospital with Chris' sleep problems.  If you have to say anything about it to the neurologist, just say something like:

"I want Chris to see the best specialists to treat her sleep disorders, just like you're by far the best for treating her neurological disorders."

The sleep clinic will also be able to properly treat her PLMD, if she has it.  Then, make sure her sleep disorders specialists send the neurologist their reports.  He needs to be educated.

Keep us posted!!

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.