Posted By Posting
Feb 25, 2010
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
Malacia, GERD and aspiration?
Hi Ladies, I'm wondering if you can help me help a friend of mine. Her little guy is 7 months old. Was dx at 2mos old with some form of malacia (she's not sure which), as well as a deviated septum, reflux and he has had really bad excema. He has had some respiratory infections, and she was just recently referred to a pediatrician (after demanding) and the pediatrician said he had some symptoms of cystic fibrosis. He gets a sweat test today. My poor friend is FREAKED. I told her it's a pretty standard emilination type test they do because it's the easiest to do....we've had 2 for Rory for FTT. Her little man is 20lbs, and other than the chest infections, I wonder why her doctor had to scare her so bad :( My experiences on the health boards lead me to believe that it's NOT CF, but rather something going on with his swallowing and very noisy, breathing. Is it at all possible that he could be silently aspirating. He feeds okay, according to her, but he is extremely noisy while doing so, and with the deviated septum, not a lot of nose breathing going on. I know that swallowing is a pretty complex process, and with the GERD dx too, I suggested she ask for a swallow study. Is there any other direction I can give her on what to ask for, what to look into...anyone have any good user-friendly resources on malacias and respiratory infections?? I'd like to think the docs could spot aspiration on an x-ray, but not even sure when he's had one done recently....Thanks for your help. Michelle
Feb 25, 2010
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Poor mom!! I would say that maybe a respirology should be involved here to rule out asthma ( chronic bronchitis.) Also, maybe allergy testing fot the excema?? Could also be bad reflux causing some aspiration that causes infection, as you say, combined with the malacia???? Wish I could help more, just writing my thoughts...........
Feb 25, 2010
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
I agree with b-girl that a pulmonologist or possibly an allergist might be a good next step. I know my girls had frequent "respiratory infections" (or so we thought) and they would cough all night long. Turned out they had asthma and allergies. No infections at all... after a week on flovent they were like different kids.
Feb 25, 2010
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
Oh, and the pulmonologist would catch aspirations.
Feb 26, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Definitely a pulmonolgist, in my opinion. This sounds so much like Lorenzo, and it wasn't until we were referred to a pulmonologist that anything got started in terms of diagnosis and treatment. It doesn't sound anything like CF to me, as failure to thrive is usually the hallmark in infants, but as you said, it is an easy test to rule something, anything out. Just be sure to warn her that sometimes they do that in order to announce that there is nothing serious wrong and try to send you on your way. Sometimes you really have to get all Mama Bear on them to get appropriate referrals.

With his symptoms, I would be interested in aspirations, allergies, apnea, asthma and esophageal inflammation. We ended up so frustrated with the approach taken in Lorenzo's case that we decided to use western medicine only for diagnosis and eastern medicine for treatment. It has been an excellent decision for us, and he is doing better than ever. If she is interested in knowing more about eastern medicine and how it might help, she is welcome to contact me at cristina@mothersupportnetwork.com.

Feb 26, 2010
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
Thank you all SO much. She went to have the sweat test done yesterday and they didn't get enough sweat, so instead of doing the test again right there, they sent her home and told her they'd book another appointment for her to come in!! She's really mad....I had told her that if they didn't get enough the first time, they'd redo the test right there (because that was my experience when Rory had it done)...so now she has to wait even longer. I've passed along all of your great advice. He had a chest x-ray done yesterday, so at least that IS on the ped's radar.....that should tell them if there is some aspiration going on....she is going to request a pulm referral....she has a referal in for dermatology (who will hopefully send her to allergy)...and she will most likely be asking for a GI referral as well. I'm confident it is not CF, and I think she is too, but she is still worried that she won't have a co-ordinated management and treatment plan for him....so she is FULLY prepared to go Mamma Bear on them, LOL....and with me being able to pass along some of your experiences....I think it is helping her tremendously in feeling like she has some support. So, as always, thank you, you wonderful PAGER mommies ((((HUGS)))
Mar 20, 2010
momma bear
Malacia, GERD and aspiration
Hi! We had the same constellation of malacia (laryngomalacia in our case), aspiration, noisy breathing, GERD, and upper respiratory infections. We also had constipation and no growth for months. I had to do my own research and fight the pediatrician for a sweat test. Our sweat test came back negative so I had to fight for a modified barium swallow study. That got us to speech pathology, which is what opened doors for us. From there, we've gone to ENT, Pulmonology & Allergies, GI, and Neurology with several tests ordered or completed. We have multiple diagnoses, but the big ones are laryngeal cleft and allergies. Please encourage her that whatever is going on is already there, but she doesn't have the information about what it is or what she can do about it. The tests won't make life worse, but will give her information to help make life better. And please let her know there are others of us out here fighting the same good fight for our kids.
Check with your
doctor first!