Laryngomalacia??? It WAS! Along with...

[schoolmom07]

Yes, it was laryngomalacia along with SEVERE reflux! She refluxes all the way back into her nasal passages and the ENT said that not many people do that so no wonder poor baby Sarah who is now 4 months old was in such distress! She has mild laryngo (which we were told has probably fixed itself some by now...-but the reflux was really hurting her! Many of you know that we have been trying to get this diagnosed for quite some time now and FINALLY someone listened to mom...Hey, I am only mom so what do I know? Thank you ladies for giving me support, advice, and comfort when it was needed. We have already tried 3 medicines and she is on the highest dose of Prevecid she can be on twice daily...Any other thoughts? Keep in mind I can only check this a few times a week...Thanks.

[queencarr]

We had to do high dose Prevacid plus Reglan to heal the damage, then gradually weaned down. If you make the rounds and she doesn't get relief, there is amedicine no longer on the market called Cisapride. It was pulled due to deadly cardiac issues when given with some antibiotics? (I think--it's been a while) and too many dr mixing them. But it is available on a compassionate care type basis with lots of paperwork from the company. It is the only medicine that actually closes the sphinctor to keep stomach contents from coming up instead of just decreasing the acid. Just something to keep in mind. My oldest ds took it as a baby and it was amazing. There is also an operation called a nissan fundiplication if meds dont take care of it. Glad you finally got some answers!

[neveryoumindthere]

We did chiropractic adjustments 3 times a week for a couple months, but I noticed a difference the first day!

That and chinese medicine and we were good to go!

hth!

[2boyzmama]

nak

i'm sorry it took so long for them to take you seriously!!

did the ent mention anything about velopharyngeal insufficiency? in order for her reflux to come up into her nasal passageways, her soft palate has to open. either the force of the reflux opens it (like vomiting out of your nose) or there is a structural malformation of her palate. VPI can be caused by a malformation of the palate (not shaped correctly) or a muscular problem (not moving correctly).

there is a surgery to correct VPI, but it isn't done until much older, and usually only if speech is effected, or if there are recurrent infections from all the food backflowing.

she is very prone to ear infections from all this, so be very watchful. just one or two bad infections can lead to permanent hearing loss.

chiro could definitely help.

what food is she on? if it's breastmilk, consider an elimination diet. cutting dairy and soy "cured" connor's reflux enough that we got him off meds. if she's on formula, ask about an elemental formula.

positioning is a biggie...never lay her flat, not even for diaper changes. she should sleep elevated or even on her tummy (if she tolerates it). with the reflux and malacia, she is a high aspiration risk. feed her fully upright, keep her upright after meals. consider taking her out of an infant carseat and putting her in a convertible seat because the angle of an infant seat is sometimes hard ob reflux.

be very particular about her meds. they have to be given at specific times before/after meals. the meds have to be compounded and only have a shelf life of 2weeks, so if they're giving you a 30 day supply, call and get it changed.

i'm sure there's more...let me lay this guy down and i'll think more

[momtoalexsarah]

I'm going to echo what 2boymoma said - we went through this with Megan. Definatly do an elemination diet if you are Bfing - if you are not Bfing then keep an really really close eye on for aspiration - with fomula it leads to pnumonia, BM not so often. Keep an eye on the ears - if infections are a problem - then from a personal point of view I would have them place ear tubes in after 2-3 infections if the fluid is not draining. To keep throwing antibiotics at these tends to lead to resistance and other problems.
The other thing is that when they put ear tubes in they can do a full examination of the palate and oral strucuture.
If they do suspect a submucus cleft palate - keep on it, especailly with that level of reflux. Megan was partly allergy related, but also related to the structural problems and wasn't well controled untill after her cleft repair surgury. Reflux is one of the few things that they will look at repairing a submucus cleft early on for (between 1 and 3 years) instead of waiting and doing a p-flap at 4-5 years.

[schoolmom07]

Originally Posted by 2boyzmama

nak

i'm sorry it took so long for them to take you seriously!!

did the ent mention anything about velopharyngeal insufficiency? in order for her reflux to come up into her nasal passageways, her soft palate has to open. either the force of the reflux opens it (like vomiting out of your nose) or there is a structural malformation of her palate. VPI can be caused by a malformation of the palate (not shaped correctly) or a muscular problem (not moving correctly).

there is a surgery to correct VPI, but it isn't done until much older, and usually only if speech is effected, or if there are recurrent infections from all the food backflowing.

she is very prone to ear infections from all this, so be very watchful. just one or two bad infections can lead to permanent hearing loss.

chiro could definitely help.

what food is she on? if it's breastmilk, consider an elimination diet. cutting dairy and soy "cured" connor's reflux enough that we got him off meds. if she's on formula, ask about an elemental formula.

positioning is a biggie...never lay her flat, not even for diaper changes. she should sleep elevated or even on her tummy (if she tolerates it). with the reflux and malacia, she is a high aspiration risk. feed her fully upright, keep her upright after meals. consider taking her out of an infant carseat and putting her in a convertible seat because the angle of an infant seat is sometimes hard ob reflux.

be very particular about her meds. they have to be given at specific times before/after meals. the meds have to be compounded and only have a shelf life of 2weeks, so if they're giving you a 30 day supply, call and get it changed.

i'm sure there's more...let me lay this guy down and i'll think more

I want to say she did say something about the velopharyngeal but have to go see them tomorrow as Morgie has to have her nose carterized again! She had this done at age 4 and now going on 8 needs it again as the nosebleeds have started again. Will let you guys know. Sorry I have not been on...Had sooo much going on. New vehicles (new to us..), we have been sick for almost 3 weeks..., etc.! You know how it goes! Miss you guys/gals!

[schoolmom07]

Originally Posted by momtoalexsarah

I'm going to echo what 2boymoma said - we went through this with Megan. Definatly do an elemination diet if you are Bfing - if you are not Bfing then keep an really really close eye on for aspiration - with fomula it leads to pnumonia, BM not so often. Keep an eye on the ears - if infections are a problem - then from a personal point of view I would have them place ear tubes in after 2-3 infections if the fluid is not draining. To keep throwing antibiotics at these tends to lead to resistance and other problems.
The other thing is that when they put ear tubes in they can do a full examination of the palate and oral strucuture.
If they do suspect a submucus cleft palate - keep on it, especailly with that level of reflux. Megan was partly allergy related, but also related to the structural problems and wasn't well controled untill after her cleft repair surgury. Reflux is one of the few things that they will look at repairing a submucus cleft early on for (between 1 and 3 years) instead of waiting and doing a p-flap at 4-5 years.

I am a BF'ing mommy too so hopefully we can eleminate some issues. However, I do on occasion use formula when I am so swamped that I can't BF calmly...YK? I have started to excercise so I can get rid of all the excess energy that has been storing in my bod! That is all for mine and Sarah's benefit! Thanks for all your help.