Super sick baby, multiple ER, NEED help, ideas, advice!!

[joyfulblessings]

I have a friend who's baby is 13 weeks old and has pretty much been sick since birth. He was born via c-section and was a good healthy weight but the cord was around his neck 2x (thus the c-section). He was breathing and all at birth but a vaginal delivery would have killed him.
He is now a little over 10lbs and recently lost 7oz but has gained back 5 1/2. He is puky and coughs and chokes. Seriously chokes to the point that he turns blue.
He has been to the ped. multiple times, been to the ER multiple times, been to the chiropractor and a naturopath. They have diagnosed with RSV and he was treated (no change), acid reflux and treated (no major change though a little less puky, still choking though). He is breast fed and sucks tons of air when he nurses. He is not tongue tied and has no other health issues. None of his older 6 siblings has any problems even resembling this. The dog has been removed from the home, she has changed her diet several times to accommodate "allergies".
I am thinking minor cleft palate, but obviously the DR's have not noticed anything... Anyone have any suggestions?!?! Any help or advice is super appreciated! TIA.

[CrunchyChristianMama]

Oh my goodness that poor babe and mama!

I have no suggestions other than maybe checking over in the Special Needs Parenting Forum. I know a lot of the children over there have dealt with all kinds of issues with feeding and such and are quite knowledgeable.

[womenswisdom]

I would say that I would want someone checking the anatomy of the trachea and esophogus. Is there a children's hospital within travelling distance. Generally they are the most knowledgeable about how to approach these more complex issues.

And slightly OT, the sole factor of a cord around the neck 2x will not kill a child during a vaginal birth. My daughter and many other children are evidence of that. There were certainly other issues that resulted in the c/s - just a pet peeve that women are told things like this about cord around the neck when it happens in 30% of births, many of those multiple loops around the neck. In fact, someone I personally know had a breech baby vaginally with the cord around the neck SIX times.

[Bokonon]

Does the mom have overactive letdown? Has she contacted an IBCLC?

[mbravebird]

I'd be looking at craniosacral for unidentified nursing/palate issues first. It may help the other stuff too. Craniosacral, specifically inside the mouth adjustments, changed my son's nursing in one session. It was amazing.

I'm assuming she's cut out dairy? Does she take probiotics?

I was just reading about activated charcoal as a natural remedy for reflux and digestion issues for babies. Don't know much about it, but it looked like an interesting lead.

[JessicaS]

Is there a Children's Hospital near her?

I would take him to a pediatric pulmonologist. RSV can cause permanent damage and if he isn't recovering from that then it could be rather serious.


I would also take him to an IBCLC, he shouldn't be getting a lot of air when he nurses.

[springmum]

Could he have laryngomalacia? The tissue around the larynx sometimes doesn't form into cartlidge (sp?) like it's supposed to. When it flops down it can partially block his airway.

This caused a constant congested sound in my own DS -worse when he was nursing, or crying or sleeping even. He turned blue on me more than once just from choking on his saliva. Laryngomalacia & GERD go together very often too.


Our son's was confirmed with a scope, and his was not bad enough to need any kind of intervention. Today at 23 months he has almost outgrown it as most do.

Something to pass by her HCP for sure, as mine told me many dr's miss it and misdiagnose it for something else.

[chlobo]

Just curious, how do you know he doesn't have a tongue tie? Was he evaluated for a posterior tongue tie, which isn't always obvious?

I would also second an evaluation by some kind of specialists at a Children's Hospital. Sounds like it is out of the pediatricians league at this point.

[joyfulblessings]

Thanks for all the replies... I will pass info on to her. He was breach and had the cord wrapped 2x so they wanted to do an inversion but she felt no peace about that and opted for the c-section instead. If they had done the inversion and the vag. delivery it would have killed him, the cord was tight already.
I will pass on all this info and if anyone else has any ideas she is open to almost anything right now!! Thanks so much.