Paige Update – where do we go from here?

[Anonymous]

Hi Everyone,

I haven’t been on here much in the last few months, but thought I would give a bit of an update on Paige and seek some advice and support. Paige is now 8 & 1/2 months old and growing well (nearly 20 pounds) and she is still taking Prevacid 15 mg twice a day. She cannot tolerate any solids whatsoever, so she is on Neocate exclusively. We have tried Beechnut brand oatmeal twice, and sweet potatoes fairly recently, each time with disasterous results. Her sleep is still terrible, even worse lately as she is still recovering from the sweet potato trial from 2 weeks ago. Lately I think she has been having a few Sandifer’s symptoms again, and today she vomited twice, which she hasn’t done in a while as she had been mostly a silent refluxer over the last few months. I am getting so terribly run down, I’m exhausted, frustrated, depressed, anxious, you name it. I was hoping and praying that things would be getting easier by this age. I remember with Ben he showed a lot of improvement between the ages of 7-9 months, but then again Paige has always been much worse than him. I honestly don’t know how to keep this up. Other than my incredible husband, I have literally no support and nobody seems to really understand (I’m sure you all know what that is like).

Where do I go from here? I am not going to do another solids trial for at least another couple of months – I’m not going to put her (or us) through that again. I guess I should re-examine her Prevacid dose to see if it may need to be increased, but I guess I’m more concerned about her inability to tolerate anything other than Neocate. Even Maalox (like Mylanta) makes her stools mucousy. Do I ask for some tests like an endoscopy with biopsies? What would they be trying to diagnose or rule out? And even if they did show inflammation, or something like that, would the treatment be any different than what we are already doing? I’m not sure what to do. Just keep going with the Neocate and Prevacid and avoid all solids and wait for things to improve? I just don’t know how much longer we can keep going with the stress and sleep deprivation. And it’s not fair for my poor little Ben as well. His Mommy and Daddy are so stressed and tired that we can’t be the best kind of parents for him either.

Thanks so much for listening, it feels good to get this all out. Any input and advice is greatly appreciated!!

[Anonymous]

I can help a little. Colton couldn’t tolerate any solids until he was 15 months and then all of a sudden he did fine. We still have some foods he doesn’t do well with. We did a trial every month until he turned 15 months. So don’t feel bad that she is having problems with solids. She may just take a little longer than others but I bet she will pick it up all of a sudden like Colt. We also can’t use mylanta. I think if she seems miserable testing could be a good option just to rule out any thing serious. I think if you are willing for her to have the test done then you should talk to her doctor. Did you make your own solids or did you use jarred baby food? I ask this because Colt couldn’t handle any jarred food so I started making my own and he did so much better. Hope things get better soon.

[Anonymous]

Hi Sheri,

I really sympathize. I’ll give you some of what happened to us so that you can hopefully feel like you’re not the only one. Also, things started shifting around for us around 8 months of age, because I finally pushed for htings to change. My son is nearly three and at Paige’s age was sleeping horribly….and I mean it was horrific– and I had introduced solids but then cut them out again at age 8 months and began exclusively nursing again because I could control my diet and it was easier to tell about foods, etc. So we formally reintroduced solids around 11 months and he was okay with certain ones, and wasn’t that far behind the curve and eats fully normally now aside from his dietary restrictions. We changed docs around that time, and upped his meds, switched to zegerid and by age ten months he was having a ph probe and endoscopy to rule out other things. We used all sort of meds cocktails….the ped rxed carafate at night to help but it can interfere with the ppi meds, so we tried spacing that out a bit. It seemed to help a tiny bit but anything was better than nothing. I was hallucinating from lack of sleep and everything felt like it was falling apart. I was truly miserable. I sympathize. He also spit up like crazy….way more than the average refluxer. In our tests we found a hiatal hernia, which although rare, was the cause of his reflux. This explained the 100+ spit ups daily and the complete inability to sleep. We also discovered that taking out the dairy, soy and eventually gluten from my diet helped things tremendously. So, you may find that she takes to solids or tolerates them much later than other kids, but I feel like that’s fine. If you could get her sleeping, it wouldn’t much matter if she was eating solids or not at this point, right? I know Dr. Phillips with Reflux Solutions always suggested the ppi be given three times a day in severe cases. Have you had success with prevacid but it seems to be going worse now? Would you be willing to change meds to see if that would help? Some babies respond better to other meds. My son changed around dramatically when we switched to zegerid, and you also don’t have to worry about timing of meds and eating with zegerid which was a real blessing for us. I feel like some options for you would include changing doses (upping the dose– you’ve probably already checked http://www.marci-kids.com but they have dosing charts) of her meds, changing ppi meds altogether, taking ppi meds three times daily instead of two, and maybe even having some testing done.

Also, in our case, teething was the source of so much misery. Is she teething or has she just started teething? Our docs okayed us to take the reflux meds, Hylands Teething Tablets (which I gave at much higher dosages than teh bottle suggests), motrin, and benedryl round the clock for a few days while severe teething was going on. You just make sure that the motrin and benedryl don’t have any overlapping ingrediants, so make sure the motrin is just for pain relief and the benedryl is just for the antihistime benefits, etc.

I’m sure you have her sleeping upright, but have you tried other options for her sleeping? Lucas seemed to sleep best with my arm wedged under his back, almost like it arched his back for him in his sleep. You might try different pillow arrangements or different inclines or tummy sleeping. We co-slept at that point and he often slept on top of me or inclined against me. It was miserable, but it got the job done and I could nurse him and roll right over to sleep for another hour.

I can’t think right now of what else….but for us time was the magic answer. Time and getting bigger. My son, like your daughter, also always had great weight gain so often we weren’t taken as seriously in the beginning. I think you are ahead of the game with her on Neocate, at this stage I was just beginning to experiment with taking out foods from my diet and that experimental phase lasted from 8 months to 18 months when we finally removed gluten. So, you at least know you’ve cleared her system of ANYthing that could be bothering her tummy that way.Have you had anything else checked, like ears? I read on here about ears being a real problem for so many refluxers so I had the ped check his ears just so we could rule that out as a problem. The tests he had again were the ph probe, endoscopy and upper gi, although the upper gi didn’t seem to do much except for convince the docs of everything I was already saying– that he had reflux. The ph probe and endoscopy were very telling, difficult to get through –but definitely worth the distress.

Looking back I wish I had begged for help, or asked my mother to fly in– we also don’t have any family close by. I would try if you can to get away even if it’s only for 30 minutes. I should have asked a friend to come stay over while I took a nap or something. There are things you can do, it’s just the asking and teh setting up that is sometimes awkward or just hard to do. But you have to take care of yourself and what you are going through is very intense. Can anyone in your family afford the time and the plane ticket to come help for a weekend or a week? Hopefully, your situation won’t stretch on like it did for us, but at age 8 months, we were just scratching the surface of true sleep deprivation. That’s why I’m saying to ask for help now, for as much as you can get. Or whatever you can afford.

Oh, the other things we did were begin probiotics — you can find infant powder that is free of everything and mixes right into formula–(Nature’s Way Primodophilus for Infants was our brand), also I used liquid organic aloe vera drops for a while, and we took him to a chiropractor specializing in infants and babies. She helped tremendously. One day after a visit he slept for 7 hours straight for the first time. He was 11 months old. It was insane. I went for the alternative medicine after our western medicine optoins ran out. I’m really glad I did these things in addition to the others. So, I hope there’s some small idea in here that might be useful to you. I hope things get better soon!!!

[Anonymous]

I don’t have any suggestions, but I wanted to give you a big . And tell you that you are doing the best you can and you are a great mommy. I wish I had great words of wisdom, but I don’t. Hang in there.

[Anonymous]

BIG HUGS! I am sorry that I don’t have any words of wisdom either…just sympathy. If it would make you feel better, you could always have tests run. Peace of mind is invaluable sometimes! Hang in there and know you’re doing everything you can!!!

[Anonymous]

I’m sorry things are still so hard. I wish I had some advice. There’s a mom on the board who’s daugher (Addy) was on Neocate and nothing else for a very long time and she fianlly began eating real foods recently. Does anyone remember her username? Mabye you can pm her for some advice and support.

[Anonymous]

Oh, here it is.

https://www.infantreflux.org/forum/forum_posts.asp?TID=8413&KW=addy

[Anonymous]

I’m so sorry that things are so hard. It seems that when weight gain is good, the doctors just leave things and hope that they’ll outgrow it. Given Ben’s history, I would get a ped GI if you don’t have one already, and maybe see if they’d do a scope with biopsies. I found this really helpful. It would be able to tell you if she has any damage (so you’d know if her dose of PPI is high enough or if you need to go higher), and if she has allergic esophagitis/EE. There are other things that the scope can see as well. Knowing this may change her course of treatment in that you might raise her dose of PPI or know the cause of her problems. You might also want to get an allergist if she doesn’t have one, maybe they can help you as well. Like with Anne’s situation with Lucas, Hailey was absolutely HORRIBLE at that age, and the sleep deprivation and feeding problems were going to do me in, I thought. I know that you have no help, but if there’s someone who can watch the kids for even half an hour so you can get a break, it makes a big difference. I also had a really hard time coping. It’s hard having two kids so close in age, and even harder when you’re not getting any sleep for such a long period of time. I also felt terrible for my older one, but you do the best that you can. Good luck. I hope that things turn around for you soon.

[Anonymous]

i’d ask to have tests done.

[Anonymous]

Well our latest trouble, as I’ve mentioned in another thread, is ongoing constipation. (Great, another thing to add to the list of problems) The few remedies we were trying like brown sugar added to bottles and lactulose only seemed to make her so much more irritable and uncomfortable. The last week has been such a struggle. She has been so unsettled that the only way we could get her to sleep for the last two nights is on my or my husbands chest while we semi-prop ourselves up on the couch. Not a very restful sleep to say the least when you have a 20 pound child tossing and turning on your chest all night!

Today I took her to see our ped and he wonders if maybe Paige has a sugar sensitivity/intolerance as well, and that would explain why the brown sugar and lactulose only seemed to aggravate her system. So now we’ve started her on a motility drug called Motilium (or domperidone) to see if we can get her GI tract moving a little better. I didn’t want to try Reglan (metoclopramide) just yet if there were other options, and I also wanted to avoid Erythromycin for fear of it upsetting the balance of “good” bacteria in her gut. We follow up with the ped in about 2 weeks, and if I don’t see much improvement I think I will get in touch with the ped GI and look at doing some tests. I really hope the Motilium will be of some benefit. We could sure use a few steps in the right direction instead of always feeling like we are taking steps backwards.

[Anonymous]

Have you tried probiotics for her yet? They may help with the constipation. They also boost the immune system and help keep all the good bacteria levels high. We used Nature’s Way Primodophilus for Infants, it was a powder that can mix right into water and can be given via syringe, or added to formula. I truly hope things improve soon.

I know what you mean about not sleeping with the baby inclined on top of you all night! We did a little pillow pile in a queen sized bed with him right next to me but propped up at around her age. another option we tried was the lazyboy chair recliner option. Just not a lot of wiggle room if you are in it with her. I wondered if he woujld sleep good there by himself if I used pillows strategically, but never did it regularly because I still had to get to him to nurse. I was most comfortable with him next to me and used boppies and pillows and myself– to try to keep him inclined.

[Anonymous]

Sorry you are dealing with this. It is really hard on siblings and spouses also. Hang in there – really it will get better. really.

[Anonymous]

have you asked about Miralax? Joe needs it because the Zegerid constipated him. it’s been a life saver. he is sooo much happier now that he can digest his food

[Anonymous]

Landen also takes Miralax. I thought it bothered him once, but it was thrush that he had that made his reflux awful and not a reaction to the Miralax. I’ve found that constipation makes his reflux just horrible, as well as any other illness. Right now he has RSV and his reflux is HORRENDOUS.

In regard to solids, Landen cannot tolerate any baby food from a jar. I started him at around 5 mos and stopped and we never re-started. I plan to try again around 7 mos but this time I’ll be making my own. Until then, we do Neocate only and just Beech-Nut soy free Oatmeal 2x daily and a few puffed rice that we practice picking up (learning the pincer grasp)

I would suggest making your own food the next time you trial if you haven’t done that, and if she still reacts, maybe try Neocate only. If she’s gaining well, she may just need more time. Believe me, I know how hard it is when they can’t eat and seem like they need more. landen’s daycare thought he was SOOO behind in eating and thought I was NUTS for not bringing food in for him when all of the babies were eating stage 3 jars of food in his class!

Huge hugs to you! It has to get better!

[Anonymous]

I just wanted to say sorry for all your are still going through.. and that i to have heard of moms on here that have to do neocate only well into toddler hood.. but i hope in your case that isnt so. I also wanted to say that i think Shane is sensitive to sugar too! Any added vanilla/sugary flavoring in foods makes his reflux flare up too! I havnt “proven” this yet.. but i am heading there 😉 . We did a trial of vanilla elecare and he puked afterwards. Is your neocate flavored?

We have had success w/probiotics too.. but can only give them every couple days because they really do loosen things up 😉

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