Mother’s instincts vs. GI Wizard

[Anonymous]

Henry had his first appointment with the ped GI today. I feel SO DISCOURAGED. I’m sure you all know how it feels. . .we have dealt with multiple medication changes with the reg pediatrician over 4 months, wait six weeks to get into see the GI, while I keep telling myself, “just hold on until the GI. . .hold on until the GI.” Well, that anticipation was squashed like when Dorothy thought she would get home to Kansas if just she saw the wizard and then found out it was a little man behind the curtain!

Henry is 15.5 pounds and is on prevacid solutabs (7.5 mg twice a day). We already tried liquid prilosec and my insurance will not cover zegerid. So there I am at the office, armed with all my marci-kids stuff. I tell him how Henry is fine in the morning, fine during the night, but screams all afternoon and evening. Perhaps he needs a THIRD dose in the early afternoon (this of course seems freakin obvious to me). He said that he doesn’t do that. And that is just one researcher trying to get published and not what is accepted medical practice. Instead he says I must put Henry on Neocate or Elecare for 3 weeks.

Now to me this is ridiculous. I have already eliminated every tiny minute possible discomfort from my diet and this made NO DIFFERENCE in Henry’s irritability and reflux. I am living on air and water. And furthermore we have given Henry milk formula already and he shows no reaction. . .no difference even after days and days, weeks and weeks. He doesn’t have dry skin, he doesn’t have blood in his stool, he isn’t showing any signs except being a crazy crying baby, which is also true on my eliminate-everything-in-the-whole-wide-world breastmilk. And wouldn’t he cry ALL THE TIME and not just in the afternoon and evening if it were an allergy?

Do I pay $40. a can to put my child on this elecare for 3 weeks when my instincts tell me this is not the problem? I just don’t think if I click my heels and give him the elecare that we will finally be in Kansas.

Lost in Oz,

Ruby

Henry, 4-months old, reflux

Breastfeeding on the eat-nothing-that-you-like-diet

7.5 mg prevacid 2x a day

[Anonymous]

I’m so sorry to hear about your frustrating appointment. When do you give him his Prevacid now? Maybe you can experiment and give him 1/3 of the tablet three times per day. It looks like he shoud be getting 8 – 10 mg 3x’s per day. For now you could try and see if he can get buy on the 5mg 3 times per day.

I’m sorry he wasn’t convinced by the Marci-kids information. Too bad we can’t take our babies to Dr. Phillips since he’s the only one who seems to understand how to treat this maddening condition.

How do you feel about finding another doctor? I’m so lucky I didn’t have to do that, and I really, really feel for you mom’s who are going through this.

I wish I had more advice and I hope things get better for Henry.

[Anonymous]

Has he always been worse in late afternoon/evening? If so could he
possibly have colic in addition to reflux? If so, hopefully he’ll
outgrow that part of it soon (I know they say 3 months for colic but my
niece had it until 5 months).

If its the reflux acting up in late afternoon/evening can you use Mylanta to get him through?

I agree with you – don’t see how Neocate/Elecare would help and would continue to BF if that’s what you want to do.

Sorry it was a bad appointment. Hope Henry feels better soon.

[Anonymous]

Ruby,

I’m so sorry that your GI appointment was such a bust! And believe me when I tell you that I can sympathize with you. I’ve been to many doctors armed with my Marci-kids info, and if any of them have agreed to look at it, they’ve all responded like your GI. In December, we waited 3 months to see a pediatric psychiatrist for Hailey’s feeding and no one would do anything until then- that was a major bust! Then we waited over 3 months to see a new GI (who did nothing) but ordered a scope (for which we are waiting at least another 3 months). And all the time in between I was counting down the days to these appointments hoping they would answer our prayers and help my child. So believe me when I tell you, I understand your frustration and your sadness.

I agree with trying to get a new doctor, though I know it’s not an easy task. I say this because you need someone who will be agressive in terms of treating your child. Don’t make the same mistakes that I did. I waited too long with a doctor who was ultra conservative, and it only compounded our problems to the point we’re at now. I would also be leary of anyone who told you to give up breastfeeding (if you don’t want to) as the answer to solving your sons reflux. This always frustrates me, and I really think it’s just a doctors way to buy some time and get you out of the office. I don’t mean that to be offensive. Many people might disagree with me though. But it just seems crazy to me- breast milk is supposed to be very good for them and I agree with you that if it was an allergy he would likely be cranky all day or around feeding times.

I hope this doesn’t discourage you, but on top of her reflux, Hailey was an inconsolable screaming mess for the first 6 months of her life and needed to be held 24 hours a day. It was very challenging, to say the least, and what made me so mad was that docs were quick to dismiss her behaviour as colic until she was over 6 months.

In the meantime, could you get someone to prescribe you a dose of Zantac or something for breakthrough relief in the afternoon? I also hate to admit this, but I increased Hailey’s dose myself, and then when I went to my new doc, I told him that this was her dose and could he write me a repeat. Well he did. I sincerely hope that you get some relief for your son. Until then, hang in there. We all know what you’re going through.

s&h’s mum2006-4-7 15:29:41

[Anonymous]

I would call him back and make him give you enough samples to get you through a 2 week trial. Possible it could help, helped us alot, but if he wanted to switch to neocate or elecare, then why is the baby still on the solutabs which can cause irritability because of the lactose and something else in them? We pour the capsules into a bit of applesauce, since 4 months old.

[hellbennt]

are you breastfeeding?

how DARE this doctor recommend you stop when you clearly do not think it is a milk issue!!!!

I breastfed jonah, I did the elimination diet, and after that I did not believe it was a ‘milk’ issue – he never showed any of the signs (he always had ‘regular’ breast fed baby stools – no blood, no mucous, no rash, no nothing) of mspi or allergy

thank goodness my ped gi was totally supportive of my breastfeeding !!!

so to sum up my own humble opinion:

keep breastfeeding & find another doctor!!!!!

ps: I just calculated for you a conservative dose of prevacid & it’s 21mgs per day total not 15!!!!

hellbennt2006-4-7 17:23:52

[Anonymous]

i agree with everyone here. find a new dr. sounds like he may need a 3rd dose. we’re suffering too and i feel your pain. best of uck.

[Anonymous]

I agree with everyone too! If he is not showing any milk allergy issues then why quit and switch to neocate? Also you may want to try mylanta in the afternoon in the waiting period until you can get a second opinion!

[Anonymous]

I also concur with these other moms, and am so sorry you have a doc unwilling to listen

I want to offer some of what’s happened to us with food issues. I hope I’m not repeating myself as I know I’ve responded to you in the recent past!

Lucas is MSPI. His MSPI seemed to involve mucousy spit ups– like egg-white looking spit ups only they were white instead of clear– fussiness day or night, but he never had blood in stools or mucous in stools or ezcema or any other signs of MSPI besides fussiness and these mucousy spit ups. BUT, when I removed dairy, he spit up less and the mucousy spit ups were gone. I’ve recently removed gluten from our diets to determine if this would change any of his night waking patterns and it has (and I’m talking a very strong pattern for over a year). I’m only saying this because he has great days for the most part, and horrible nights. And you think, if this is an allergy or even intolerance, why at night and not during the day? My husband has asked me this question several times. I don’t know the full answer, but part of it is that night wakings are a symptom of food allergies, and when babies are laying down (naptime, or nighttime) the situation for reflux is completely different– and the other part is that babies can be distracted from their discomfort during the day while they are feeling good–but it’s hard to be distracted from pain at night– or when you’re not in a great mood. And it’s pretty classic that babies are fussier in the afternoon/evening, when they are melting down from the day, [OR when they have metabolized their last (low) dose of ppi drug HOURS prior and can’t get comfortable…..]

Do you notice a correlation between his fussy times and the timing of the meds? LIke is he always pretty good for 3-4 hours after the ppi, and then horrible? There is the mylanta and zantac for breakthrough acid, but there is also a drug called carafate, you could ask your new ped gi about that. He might be up for it as it’s a pretty old school med (been around a long time) and sometimes it can do a great job with the breakthrough acid. The marci-kids site isn’t a huge fan of carafate, but I and several other moms have used it quite successfully for periods of time to get through the breakthrough acid periods.

I FULLY support breastfeeding, and understand the job of living on “air and water” to figure out what is bothering your lo while bfeeding– WAY TO GO! I also think your gut instincts are probably something to listen to….but just wanted to let you know the little we’ve learned about food issues and the presentation of symptoms in our child. You won’t necessarily see symptoms day and night for food to be an issue– at least it was that way for us– and we may be the exception rather than the rule, but it’s good to know. I just wanted to let you know, to add to what you know about the realm of possibility with food problems.

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