Posted By Posting
Aug 26, 2009
happy2bjustmommy
Melissa, mom to 3 girls ( 2 with GERD as infants) 1 boy, GERD, Apnea,seizures, Microcephaly, craniosynostosis.
New here 3 month old with GERD, Apnea, Microcephaly
Hi, i have been reading over the last few weeks here, when a friend gave me this website. There is a ton of info and i certainly do not feel alone, or crazy anymore( well most of the time) I am mom to a 3 month old guy, who has GERD, Apnea, and Relative Microcephaly. It is crazy because GI keeps saying they dont know what is causing his issues. He has had PH probe, MBS, upper GI, and endoscopy with biopsies. There is nothing they can pin point, but they have said he doesnt seem to need surgery. He also sees a pulmonologist for his apnea, and the pulm is blaming the apnea on the GERD ( which i read is common??) and the GI said NO< it is something totally separate. Yesterday we went to a neurosurgeon, who diagnoses him with microcepahaly, which i am reading can cause the feeding issues and the apnea, though i dont think it can cause the reflux. But i dont know. After the neuro appt, we went to our regualr ped for a follow up from our 5 day hospital stay last week, and she is very concerned about his weight. He has only gained 2 oz in 3 week. I have been exclusivly breastfeeding him, and now she wants me to not nurse, but to pump and bottle, and then top him off with nutramigen. This really really bothers me. I dont know why, but it does. I have noticed him being MUCH more fussy since i started giving him formula yesterday. He has had about 6 oz of formula in the last 30 hours or so. so not very much. ANd he hates it, and he refluxes heavily after i "top him off" He seems to HATE to eat. He eats no more than 3 oz, every 4 hours, and will go 6-8 hours at night. I dont know what to do here. She wants to weigh him again in a week, and if he doesnt gain, we are looking at another hospital stay ( the 3rd since he was born). Anyway, that is my intro, my thnaks for the info i have gathered so far, and my search for any tidbits of info, anyone might have... Thanks!
Aug 27, 2009
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
as far as i have researched, sometimes in infants reflux can be a case of immaturity and their GI systems are just not able to process things well or certain structures, most commonly, the LES valve are weak. A lot of times, the older a baby gets the better the GERD does. Sometimes all you can do is make sure that the stuff coming up is NOT acidic. but with cases such as low weight gain the goals get a little different. I know you would love the continue breastfeeding so maybe you can contact a Lactation Consultant or La Leche League to help you feed your son.

I exclusively breastfed emily for 5 months and had to switch to nutramigen. she was a horrible bottle fighter and didn't like the nutramigen either. it took about a week for her to accept the switch and about 10 days for her to feel better on nutramigen; it took 2 days of food refusal before she gave into nutamigen.

i am sure the dr's want you to bottle so you can gauge intake of food ounces which is hard to do on just breast. Instead of topping off, could you skip one breast feeding and replace it with a bottle? maybe have daddy or someone else do it? small (4-6oz) frequent meals are best for reflux. Have you tried thickening his formula/milk with something like simply thick or thickit? since he has a weight gain issue maybe cereal? if he has apnea i am sure he is on a monitor right? do you have his bed elevated as well?
Aug 27, 2009
happy2bjustmommy
Melissa, mom to 3 girls ( 2 with GERD as infants) 1 boy, GERD, Apnea,seizures, Microcephaly, craniosynostosis.
When he had the PH probe, they said he was not too acidic. However, he NEVER spit when the probe was in, and not 5 minutes, after they pulled it, he spit up a ton. Very frustrating. i have a good friend that is a CBC thru la leche league, and she is helping me to dontinue to breastfeed. When he had the modified barium swallow, last week, he passed it with flying colors. nothing was going into his lungs, so we dont think it is an aspriation thing. I have not thought to thicken my milk, to try to help it stay down. That is something to think about. I dont want to do cereal, since my kids guts have never been able to handle it. I had to do that with my 2 other kids, and it caused them more pain and discomfort. Also, maybe i should add, that i have not had dairy, eggs, gluten, oats, or soy, in 3 months. We were suspecting food allergies, and when he had his biospies last week, they said i am not eating anything right now, that he is allergic too, so i cant add anyting yet, but i dont have to eliminate anything else. I do have an apnea monitor. He is doing great. no alarms since last thursday. I am happy about this. i would love for him to outgrow this, very quickly. He is on prevacid, 7.5 mg twice a day now, and it doesnt seem to help much. Unless it is making his spit, less acidic. He had only been off of it for about 12 hours before the probe was placed, so i wonder if the ph probe was accurate. He did have some numbers in teh 2-4, range, where 7 is good ( if i understand it correctly) the probe was in for about 18 hours, before they pulled it. I think they were trying to get us out of the hospital, because they pulle dit on day 5, about 4 hours before we were released. sorry if my posts are scattered. He is super super fussy today, and i didnt sleep last night, so i am not functioning well. Thanks for your input.
Aug 27, 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
Most probes are done off meds for about 305 days, so your results could have been inaccurate. Jedd was off of his for 5 days I think...It's been a while. He had an Impendance probe done.

How are you giving the meds and when are you giving them? Sometimes that can make a difference too.

In regards to weight issues, is he following his own curve or is he falling off of his curve??

We lived in the FTT range for quite some time, so I feel ya on the weight frustrations. Jedd could gain that slowly and then get sick and loose 1/2 a pound in 4-5 days. Super frustrating.

FWIW meds will only neutralize the acid, they will not stop the vomitting or spitting up.

Check with your
doctor first!