Posted By Posting
Aug 30, 2008
seamus mama
Seamus was diagnosed with Silent Reflux at 3 weeks. Now he is 14 months, on Prilosec and avoiding dairy,soy,egg. Still nursing. A lot !!!
we've been MIA. Seamus update
Hi everyone..We went on vacation for 3 weeks, came home, and since I have been attempting to sign in to this website! I think it threw me a bone finally..I hope this finds everyone in good spirits. Seamus has been on Prilosec twice a day for the last month..He is able to eat all sorts of solids now..He was gagging on banana for so long, but now he is able to chew and all sorts of foods without troubles and I am really happy about that. He is waking up about every 2 hours rather than every hour which is better. BUT I am still very tired as he wakes up and nurses alot. He is still a total nap rebel and I have to wear him or nurse him to sleep while walking him which is annoying. I am thinking about doing some sort of CIO for his naps but I have no idea what that would entail. I checked in with our GI who suggested we take him off one of his 2 daily doses of Prilosec. We have been doing one evening dose for a week now. He has been fine during nursing and after eating. His sleep seems to be worsening and he is a lighter napper. Ive noticed that when he cries alot he refluxes more. He starts arching and loud swallowing/gulping. What do you folks think? Do babies typically experience some reflux when they cry? I havent seen him do it for so long.I dont know if this one dose a day thing is too extreme of a change. Maybe I am being overly worried because I know how bad things can become. The GI want us to see how this goes for 2 weeks, and if things are o.k. she thinks it may be a good idea to drop meds alltogether. I thought that folks usually wean off a PPI onto something weaker like Zantac..I fear that we may be "jumping the gun" and Seamus will have a nasty rebound of reflux..BUT I don't want to over medicate the kid. I would love to hear your thoughts if you have a moment. Cheers
Aug 30, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
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We suspected that Elyse's meds were disrupting her sleep, so when we felt she was ready we dropped her nighttime dose and she sleeps really well now. At his age, i don't think he needs to nurse at night at all, esp if he eats solids well. I would try dropping at least one nursing session at night as he may be waking out of habit. Try offering water or something until he decides it's not worth it to get up...that has worked for other folks here. Does he sleep with you? If so, maybe it would be easier if he started sleeping away from you so it is not so readily available. My cousin who is nursing (her son is 15 mos) was also cosleeping, and waking several times a night still to nurse. In the past month she has been putting him to sleep next to their bed instead of in it and he has been sleeping thru the night! Maybe the parents' movements in the bed were waking him or something. HTH, good to see you again
Aug 30, 2008
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.
Hope you guys had a great vacation! I'm glad the Prilosec is working somewhat with Seamus. So I can't understand why your GI would want to wean? I feel that babies with AR need to be on PPI's for a while in order for their esophagus' to heal from all the damage. The damaged caused poses a far greater threat to our babies health in the long run than does taking meds for months, or even years. I would be hesitant to stop the meds now. When he is eating well for several months, and sleeping better, again for several months, then maybe consider it....Just my opinion.

I will say this about his night wakings though......Jazzy did the same thing as Seamus...woke up all the time to conmfort feed, refluxed more often when she cried, which made me want to comfort her more and faster (ie. BF). I was exhausted...DONE! So I stopped BFing her and went straight to a soft spouted sippy with Milk, which I offered anytime of the night when she woke. I was terrified to do this because BFing was my only tool for comfort. Well, she fought me the first night a LOT, and then a little the second night. But by the third night, my baby girl who woke up ALL the time was sleeping from 7:45 until about 3:30!!! Only then did I go into her room (she sleeps on a double bed on the floor), I gave her her sippy cup of milk, she drank half of it and slept with me until 7:00 a/m. This is pretty much her patteren now. I wouldn't believe it if it didn't happen to me.

I am all for BFing, trust me I did it until she was 18 months. But I was exhausted. But some babies will wake all the time to BF because they can. Maybe Seamus is one of those nightime nurslings like Jazz?

Also, just a side note, approx. 85% of reflux babies have some form of lactose intoleranace in their first year of life...and breast milk is full of lactose.

I'm just throwing all of this out there. Hopefully he is not in pain anymore and you two will be able to find something that works. HTH...welcome back!

Aug 31, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Hey Seamus' mama! Nice to "see" you again on here! I hope you enjoyed your vacations & that your hubby is doing a bit better these days. Where did you end up going? I am JEALOUS!!!

Great news about Seamus and his eating! He is really growing up! Did he ever have problems after your family gave him milk and soy? I hope not!!

I can't write much now on sleep - S is waking from his nap - but I'll post later. I really do think you should try the book Healthy Sleep Habits, Happy Child by Dr. Weissbluth. More later!

Aug 31, 2008
seamus mama
Seamus was diagnosed with Silent Reflux at 3 weeks. Now he is 14 months, on Prilosec and avoiding dairy,soy,egg. Still nursing. A lot !!!
In response to your responses, the GI wants to wean or reduce the PPI because she thinks that Seamus is doing so well that he might not need as much medication as he is receiving..I dont know if she isnt taking us very seriously because Seamus is a silent refluxer and it is harder to properly diagnose them without testing or what. I am trusting the GIs judgement when it comes to meds..I am keeping a very watchful eye on the guy. She wants to drop meds within two weeks if he hasnt shown negative reactions to taking half as much. I am scared of doing that.I would like to see how he does for at least a month..As far as sleeping goes, we need to do some more sleep training. I like the idea of giving Seamus water..I know he will be really pissed of but maybe if I hold him close?He deinitely does not need to nurse during the night. Lasdt night he was finished nursing, and he pushed my breast away and climbed down into his crib, then fell asleep! It was amazing! We have the crib opened on one side and pushed against our mattress.. I have been nursing him to sleep and putting him in the crib for naps and for the first half of the night. I pushed the crib thing way to fast when we did CIO and he was frightened of it for a long time. I am easing him into the crib, then eventually I intend to put up the side and do more sleep training. Uggh.During the day I mainly nurse him for naps/bedtime with a couple milkey snacks.He is eating lots except for acid reflux culprits, dairy, egg, and soy. I am still avoiding the same stuff although I enjoy wine or a splash of coffee every now and then. I would like to introduce dairy, soy, or egg to him either through my breastmilk or directly..Any ideas in regards to that?He is attacking the computer .Must go. Cheers and thanks for the support. Have a beautiful day!
Aug 31, 2008
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.
Hey!!!! Welcome back! I'm so glad Seamus is waking only every 2 hours or so, instead of his previous wacky schedule! I want to tell you about Lorenzo's sleep study results, but he is driving a wooden car up my pant leg at the moment.... If you get a chance, drop me an email (cristina@mothersupportnetwork.com), and I'll tell you all about it. It was very interesting, and some of the things I learned may apply to Seamus as well.

How're things going with your DH? I hope you are all feeling a bit more happy and relaxed after vacation.... Cristina

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