Posted By Posting
Apr 11, 2009
johnniesnewmommy
Help Help Help
Help- My nine month old, who aspirates into his lungs, wakes up every time coughing and throwing up buckets of mucus. He does this for almost an hour every time he wakes up. Even if he just fell asleep in his car seat on the way home. He also spikes a fever if he has been sleeping for more than a few hours. His crib is as elevated as I can get it and still have him sleep in it. He refuses to sleep in his carrier or swing anymore. I was thinking he wasnt elevated enough but he does it even when he falls asleep in the car or while you are rocking him fully upright. By the time I get him to the doctor he has it almost cleared and so they think im crazy. He is my foster son so his doctors wont give up a referral to a specialist for his GERD or his lungs. So frustrating. They say its medical management!
Apr 11, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I'd be pitching a fit at someone ASAP!! Aspiration is nothing to play with and your foster care child NEEDS to get seen. The damage he is getting to his lungs is not reversible would they like that on their conscious????

I would call whoever you need to call to get an approval to get seen!!!

Is he on ABX because if he's running a fever he probably has aspiration pneumonia.

I'd also try to get a swallow study done to see if the aspiration is happening when he swallows OR if it is occurring because the reflux comes up and goes into his lungs.

either way he needs to be seen by a GI and a Pulmo ASAP.

Have they thought about doing tube feeds to try and avoid the aspirations???

Apr 11, 2009
johnniesnewmommy
The only talk of a tube was when he wasnt gaining weight- now he is slowly gaining some. He is less than the 5th % for his age. I think part of the non referral might be because we are in Oklahoma and there are not many specialists in the area but I would be willing to take him wherever he needs to go to be seen. They just started him on another round of amox because his ears are red. LOL They dont want to do anything until he has tried the prevacid but they cant get his insurance to pay for the solutabs or to have it compounded! ARGGG So we wait and he stays sick! He is taking omeprazole 10mg when he doesnt throw it up, and pulmicort and albuterol. Thanks for the help! I have been screaming for a specialist since he was 4 months old- it's not getting me very far!
Apr 11, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
Sad to say, but doctors tend to take you more seriously when you show up with video. See if you can get a couple of these episodes on tape, go stand in your ped's waiting room until you have a referral.

I know BCBS put out a letter saying they wouldn't cover prevacid, but they will pay if your ped writes/calls for a med neccessity pre-auth. Of course I don't know what ins you're on but I thought I'd put that out there - maybe your ins has the same type of program.

Having a fever is an obvious sign of infection... it's time to be a mother warrior and fight for your little one.

Apr 13, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I mentioned a tube not for weight issues but because of the aspiration risk. All though that's a low percentile :-( It is soo hard when we have to fight for the little ones. As long as the GI send a letter to the ins. co. they should cover whatever GERD meds are needed. The compound of Prilosec is not a best choice and that comes from someone who HAD to use if for a very long time due to it needed to fit down a feeding tube. None of the other meds would fit. We tried.

Apr 13, 2009
johnniesnewmommy
How is a swallow study done? The only real test we have had done is the upper GI. Im sure if we could get into a specialist we would have already had these tests done. It just makes me so angry that they wont allow us to go see one!
Apr 14, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
We have not had a swallow study done but I know others who have. I have been told that you will need to bring something to drink and eat as well as what he normally drinks out of. They will put a tracer in the liquid and food it you do food as well.

They then have the child drink and eat while they take the pictures. I believe they do it in intervental radiology. They will also do the liquid to different consistencies. they can start out of thin liquids and then thicken it up with commercial thickeners to see if he does better swallowing on a thicker consistency.

When it's done you will get results that tells you if he is aspirating when he swallows. And they can tell you what thickness to use when thickening the liquids so that the aspiration risk goes down. If he is aspiration from swallowing it is called aspiration from above.

If there is NO aspiration risk going on yet he still develops aspiration pneumonia then you know he is aspirating on reflux as it comes up. That means instead of the reflux (puke) coming up and going out it is taking a path into the lungs. The is called aspirating from below.

The only way to stop aspiration from below is to do tube feeds with a G on slow continuous feeds or with a GJ feeding tube to feed into the intestines. Or you can have a Nissen done.

Apr 14, 2009
mommato3
I'm so sorry. Our pedi ordered a swallow study for us. No aspiration on that one. We have since seen specialists who are ordering another swallow study and what's called a triple scope. They will scope his esophagus, tummy, first part of intestines to check for damage, etc. Then they are scoping his airways and doing a lung wash to check for formula in my son's lungs which would show he's aspirated his reflux. They will send the stuff they collect from the lung wash to a lab to see if it grows (which would mean formula). These are all done by specialists though. Your pedi should be able to order a swallow study though. I'm sorry you're having to go through this.
Apr 14, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Forgot to say thanks, we think Jedd's cute as well. :-) But we are partial of course. And yes, I've learned alot by research and talking to other Mothers on several different GERD sites online and having extensive conversations with Jedd's DRs.
Apr 14, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
SORRY
My last post was supposed to go on a different thread...OOPPPPSSS!!!!!!
Apr 14, 2009
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
I have to agree with Sara. As much as you hate to, sometimes you have to get very stern and insist with the drs. Pics, videos, or at home calls at night work wonders :)
Check with your
doctor first!