Pediatric OSA/bronchoscopy

[Janknitz]

[[HUGS]].

I think your pediatrician is full of baloney about the sleep deprivation and apnea not affecting growth and speech. OF COURSE IT IS. When he is properly treated, his development will explode--keep that in mind as it's going to be fun to watch. He will grow, his tone may improve, his speech may increase by leaps and bounds. As tired as you are, he's working even harder because he is oxygen deprived when he does sleep and probably has no restorative REM sleep at all.

As a retired OT, I say TAKE the OT referral. The OT can help in so many ways (assuming you get a good one!). The OT can help with sleep positioning, with muscle tone and physical skills, and sleep skills. Did you know that self-soothing and going to sleep are skills a baby can learn? So you may get some help there. Don't expect a lot of progress in that area, because until the apnea is properly treated, he's not going to ever be an easy sleeper. But any improvement, however small, is better than none. So it's worth a try. And if you get an order for CPAP for your son, the OT will be great at ideas for helping your son adjust to the sensory issues of dealing with CPAP and with adapting his equipment when it's hard to otherwise get a perfect fit. Unless you get a lousy OT, OT will be a help.

The one caveat I can tell you as a person who also wears the mom of a special needs child hat--the OT doesn't have to be there all night with your little one and listen to him scream. Keep an open mind about suggestions the OT has, but don't let that override your mom instincts. Mother DOES know best. But at least give reasonable suggestions a fair try (even if you have already tried them), because it's worth it to see what helps. And don't hate an OT who is trying her best to give you some help in a difficult situation.

And don't stop there. KEEP the pressure on these docs to explain what the plan is and maybe to get CPAP going until they figure out what's wrong and a way to treat it. Go in with eyes open that it may be even MORE difficult to get him to sleep with CPAP--at least until he gets used to it. But maybe not. You won't know until you try.

[Tmatt80]

Thank you! That is uplifting to hear. I actually think OT is amazing. I looked into being an OT at one point because it's incredible what they can do. My son had some trouble with solid foods for a while, and I tried to get him in with OT but they wouldn't give it to me since it wasnt necessary to them.
Like you say, OF COURSE it has an effect on him! How could it not?! He's never slept in his life and can't breathe...ummm you try that! Sometimes I just want to say ok you take him home and come talk to me tomorrow. Youd be dead. My life right now seems so dark. My marriage is hanging on by a thread, and everything we do centers around sleep. we can't go anywhere and be gone too long or he will never go to sleep, then he's jp (like this morning) at 4 am for the day. Now we are at my mom's visiting trying to keep him quiet. It's just frustrating. These people aren't the ones who live with him!
I'll definitely ask for OT immediatelg to get started. I'm not against it, it just seemed like more of a long term solution since it Isnt going to fix the apnea.
thanks for your replies. It helps just to talk

[LSAT]

Has the child been tested for GERD? I know of 2 children over the past 20 years that has similar symptoms...plus they cried more than normal...The treatment that help them was medicine to treat GERD.

[BlackSpinner]

My son's growth is also nothing to brag about which is another concern. Our pediatrician today (the same one who said no way he could have apnea and I demanded a referral) now told me I shouldn't coddle a child with a medical condition like him (interesting how you go from no way he could have it to now he has a medical condition). I asked if his speech delays could
Be related to apnea & she told me absolutely not uhhh! I'm just over this. I'm tired !

Your pediatrician is dead wrong. Without sleep the brain can not develop properly. Even adults can't think properly if sleep deprived.

This adult had trouble speaking her 3rd language before treatment (French), three months after treatment started I was speaking to my sleep specialist in French (and talking medical stuff in another language is HARD) my fluency had increased dramatically.

[49er]

My son's growth is also nothing to brag about which is another concern. Our pediatrician today (the same one who said no way he could have apnea and I demanded a referral) now told me I shouldn't coddle a child with a medical condition like him (interesting how you go from no way he could have it to now he has a medical condition). I asked if his speech delays could
Be related to apnea & she told me absolutely not uhhh! I'm just over this. I'm tired !

Your pediatrician is dead wrong. Without sleep the brain can not develop properly. Even adults can't think properly if sleep deprived.

This adult had trouble speaking her 3rd language before treatment (French), three months after treatment started I was speaking to my sleep specialist in French (and talking medical stuff in another language is HARD) my fluency had increased dramatically.

Excuse my language but that pediatrician is so full of shit, she is drowning in it. Unbelievable that she doesn't recognize a little baby can have cognitive issues if sleep deprived.

[Tmatt80]

Exactly. It almost makes me not believe anything she says. I'm sleep deprived from waking up with him, and I feel like I've been hung over for a year--and my ox isn't dramatically dropping.
Yes he has been tested for GERD. interestingly enough, for months they kept diagnosing reflux, GERD, or colic bc I kept saying he was in pain. Turns out he's just not breathing and jolting awake

[metsfan302]

If it were me, I'd get a used auto cpap and a few masks just to get him started on it.

Welcome by the way, glad you found this helpful forum!

[Tmatt80]

We got a referral to OT. we will be going next week as we are a "special case" lol. They originally were booking out to the end of feb. They said building a relationship with this OT that our pulmo recommended would be good, ESP if we do have to use a cpap machine in the future.
thank you all for your support! Heres to getting this sorted out

[chunkyfrog]

Happy, happy, happy!
Santa comes early!