Well we have finally gotten into her pead and we are finally on the move to a sleep study. SHe has to have a nasal spray to clean her nose out 3 times a day as it appears to ALWAYS be stuffy. We are off to the closest hospital (we have one where we are but not really able to do what we need) to have an over night blood oxygen level test over night and then off to brisbane to have a full sleep study. THEN we are going to have to start using nasal steriods and maybe cpap to help her breath. She mouth breaths all the time. YAY we are finally able to help our girl

Congratulations on some progress. I know how wonderful it feels to finally be taken seriously and offered help. Hopefully the sleep study will show a lot of information and help will be coming soon.


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Mom to 2 year old non-sleeper!! plus three sleeping children!!

It's great to hear you are getting somewhere with her doctor...Keep us posted and keep asking questions as you think of them. We're all here to help each other as best we are able.  

Just some tips for the sleep study (if you get to go home first)...Make sure you bring her favorite blankets, stuffed animals, books, etc...You might bring a couple of movies in case they have a DVD player for while they are putting on all the stickers (leads)...

Good luck!

Tiffany

Thanks for the advice.

We just did our overnight Blood Oxygen test and she adveraged 92%, we were told that is a little low but ok. Though about 6 or 7 times during the night (between 9 pm and 7 am) she dropped to 86% and climbed back up slowly. She did turn blue during her night in hospital and they noted she snored and talked during the night and that she was very restless.

We are now waiting for the go ahead for the full study in Brisbane, long wait considering i know for sure something isnt right.

She has a script to start using Rynocort to help with her nose tissue, has anyone else used this at all????

We've not used it,  but it was something our neurologist mentioned as a possible treatment if nothing else worked. Our neuro tends to steer clear of medicine if he can find a different treatment that doesn't involve drugs.  There has been some evidence that nasal sprays are helping to improve apnea caused by swelling of the nasal passages.

It's a pretty harmless med, and we'd have tried it if we needed to, so I'd say go for it. It can't really hurt to give it a shot...

Tiffany..

Mom to Isaac, my 3 year old "elephant' who likes to sleep in igloos!
and to Esther Rose, my 6 month old baby girl who sleeps like she was born for it!

i have looked into it and it does have some side effects, but we have agreed to try it for a month to see if it helps her. We really dont have much to loose but if we dont try to find a solution then we could end up loosing her. I will keep u updated