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Raising Special Needs Kids Raising Special Needs Kids

Lots of stuf going on....totally feeling a lack of support right now

Posted by on Oct. 10, 2013 at 10:58 PM
  • 11 Replies
If it were not for my online communities I think I would be a mess on the floor. I don't have the full idea from the sleep specialist yet but it seems from what the pediatricians nurse could tell me, my daughter (23 months) has central sleep apnea. I was told that her 02 went down to 87 at its lowest, which Im told isn't to terribly bad. But at the same time my baby stops breathing in her sleep due to the fact her brain isn't telling her lungs to breathe, that terrifies me so much. They have no recommendations from the sleep dr so were literally sitting in limbo right now, about to go into the 3rd weekend since the test was done. Its taking forever. Plus she was diagnosed with the 20p12.3 duplication that we were pretty much told is so rare they cant even pinpoint her medical issues to it because very little is reported and known. Its frustrating to have another piece of the puzzle but yet no real answer. Then she had her first dentist apt today. She has very crooked teeth and chances are her adult teeth will come in just as bad, because of the duplication she may even have extra or missing teeth or no adult teeth at all. We just don't know until she is older. On top of that her sensory problems are so bad she may never be able to be treated with braces or anything because she may not be able to handle how they feel on her mouth. I just don't know what to think anymore. I wanted answers and I got lots of them. None of them are what I envisioned for my baby girl. I don't know how to tell her 4 year old sister that her baby sister is not like typical kids. I don't know how Im supposed to accept the life that is being handed to me. Im really thinking of looking into a night nurse but what would be the point since she sleeps with me anyway? Im guessing we will have to put a stop to that when she gets put on something for the apnea. I just feel like I need a huge hug right now and Im trying to be strong but I can feel my heart wanting to break.
by on Oct. 10, 2013 at 10:58 PM
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Replies (1-10):
Elyssa414
by Elyssa on Oct. 10, 2013 at 11:05 PM
That's a lot to deal with! *HUGS*
mandee1503
by Amanda on Oct. 10, 2013 at 11:48 PM
They haven't given you a bpap machine yet?
girlymom26
by on Oct. 10, 2013 at 11:53 PM
No, the sleep dr hasn't even actually called me with a full report, I had to call begging the pediatrician to look in the computer system since they are affiliated with our childrens hospital. I have called and left 3 messages with the sleep dr and still no call back. They haven't even told the pediatrician how they want to treat her yet. Im so frustrated about it, and hes a great dr, hes been awesome for my older daughter who has huge tonsils and has obstructive apnea. My youngest is still a bit of a medical mystery.
Quoting mandee1503:

They haven't given you a bpap machine yet?

Mipsy
by Chelle on Oct. 11, 2013 at 1:14 AM
*hugs* 99% of my support is from online groups like this. Nothing wrong with that! I love this group :) I know its hard right now but I promise, as time goes on, you get the hang of it. And groups like this are really helpful and wonderful places to vent :)
graycalico
by Member on Oct. 11, 2013 at 1:41 AM
When we did a sleep study our follow up appt was with the sleep dr. So weird to me that yours is through the ped. Sometimes they can remove adenoids for apnea, you might ask your ped for a referral to an ent.
My ds has a microdeletion in his 10p chromosome. I wonder if a lot of kids with chromosome abnormalities have disordered sleep. He's 2 and has only slept through the night 4 times.
darbyakeep45
by Darby on Oct. 11, 2013 at 5:06 AM

Big hugs mama!!!

Codysmom2106
by Bronze Member on Oct. 11, 2013 at 9:17 AM

You are going through so much. I'm so sorry. I hope you hear back soon so that you can at least get something going in the right direction. Best wishes and big hugs. 

girlymom26
by on Oct. 11, 2013 at 1:18 PM
It's supposed to be through the sleeper but they won't even call me back with results. I wouldn't even know about the apnea if I didn't ask the peds office. I've called the specialist 3 times with no call back. I believe removing adenoids is more for obstructive apnea, central is a brain issue most if the time or a cardiac issue ( which has been ruled out) so I don't think there is anything you can do except treat with some type of supplemental breathing support. I was hoping to her from them today but I still have not herd from them. It's making me even more upset than I already am.


Quoting graycalico:


When we did a sleep study our follow up appt was with the sleep dr. So weird to me that yours is through the ped. Sometimes they can remove adenoids for apnea, you might ask your ped for a referral to an ent.
My ds has a microdeletion in his 10p chromosome. I wonder if a lot of kids with chromosome abnormalities have disordered sleep. He's 2 and has only slept through the night 4 times.

mlogsdon
by on Oct. 11, 2013 at 4:21 PM
I'm sorry you're going through such a rough time. I leaned pretty heavily on my online support system for a time, it did help. Can you get a nurse in the day time and try to get some naps in so you at least feel a bit more rested?
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notomatoes
by on Oct. 11, 2013 at 4:47 PM
1 mom liked this

slay your dragons one at a time..but remember to bring the grill..the child has apnea and the ped. is telling you its not that  big a deal..time to get a new ped.!one that takes  the problem seriously. if it were their child, they would take the problem seriously, right ? ok then,now,..dont let some half wit stress you about well maybe the child might need braces..well, maybe the doctor needs a coconut enema, but thats nothing to stress about right this second, now is it??get real answers from her doctors, not opinions, opinions are like assholes, everybodys got one..you need answers. sometimes in life you just gotta tread water till the lifeboats show up!

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