Posted By Posting
Aug 26, 2010
dcd
Pedi GI Appt
Well, I am feeling really positive about Kylie's appointment with the GI yesterday.

I guess I was just expecting this really sterile, impersonal experience meeting with the specialist at the hospital. But he made me feel like K was his patient, not just another number, right off the bat. He took me seriously and listened to me and it was the most validating experience. Because I've been trying to figure all this out on my own for more than 3 months now, hoping I'm doing the right things. And he actually agreed with my "diagnosis" and current course of treatment. It was nice to hear someone who knows tell me we're doing good. He was even familiar with Marci-Kids and the Buffer Babies suspension!

We do believe Kylie has a milk protein allergy that is PRESENTING as reflux. It's interesting because she's never had any blood in her stools, which is the most common indicator of MSPI. But she does have a grandparent on either side with reflux so I wonder if maybe genetics could be contributing? Anyway she's been on the Nutramigen for a week and a half now and things are much improved in all areas except for her sleep - her nighttime congestion/chronic sinus infections are gone, her eye/facial rash cleared up, her diaper rash cleared up, her nighttime cough has improved, she's not fussing with bottles like she's in pain (though she still sometimes fusses b/c she's not crazy about the taste), and her constant, copious spitting up has definitely slowed.

She is still waking up all night - 5 or 6 times, or every hour or two after a certain point. She doesn't seem to be having any acid pain during the day, so I'm just giving her the Prevacid at night. Something is making her fitful at night, but the PPI doesn't seem to be doing anything for her. The GI said we could try giving her an antacid when she wakes, which may provide more immediate relief and help her settle back to sleep. But it seems to me that the PPI should be doing that already as we are giving her 18 mg right before bed?

As attuned as I have become to her cries and how she's feeling, right now I'm a little lost about what's going on with her at night. I certainly don't want to make any premature conclusions and we'll get up with her all night for as long as we have to until we're 100% sure she's not having pain - but I almost wonder if maybe she's feeling better now but is still waking b/c it's become a habit? Have any of you experienced that once your little ones started getting better?

The GI said these things definitely peak between 4 to 6 months and that he really thinks we're over the hump and now that we're on the Nutramigen and she's getting older we'll see rapid improvement over the next couple months. So it feels like a light at the end of the tunnel. But he also said that if she's regressed in a week, or a month, or whenever, and I feel like we're back at square one to just come back in and we'll reassess. He said he doesn't recommend any testing right now since she seems to be responding to the hypo formula. He had us schedule an appointment for November so he can check up on her and discuss adding dairy back into her diet when she turns a year old.

It was so weird to think that maybe it really will be this simple. We're feeling optimistic for the first time in a while, but since we're still not sleeping I feel like we still have a ways to go. But I'm so happy she seems to be getting some relief - finally! I'm glad we stuck with the Nutramigen. Ultimately she hated everything we added to it (chocolate syrup, strawberry powder, applesauce, Neocate packets...) so we just kept with it, plain. She's getting more used to it and I'm hopeful that before long she'll be taking it like a regular bottle.

The GI said to call with any questions and let him know if I decide to try anything new so we're all on the same page. And that was about it.

I do think we are going to give the cranio therapy a try. It can't hurt. And it might help. Our practitioner seems to think it will enable the NAET to stick, but even if not - Lorenzomama has had success with it helping her son to relax/manage pain/sleep better. So if it can do that for us too that would be more than enough.

Oh, GI also said that we should continue to see improvements on the Nutramigen. That things start to get better at a week, and then two weeks, but that it can really take up to four weeks for the body to totally rid itself of the remnants of the old allergy-inducing milk.

So, we'll see. I will post updates on her progress. Thanks to everyone for all the advice and support!

Aug 26, 2010
kavyamom
So glad to hear that the GI was so supportive! Kavya's sleep pattern is also pretty much the same as you describe even at 20 months. She sleeps from 9pm to around 1am and then the disturbed sleep begins...getting up every hour or two. We have tried zantac at night and are currently trying prevacid in the morning and zantac at night but nothing is really helping much and she has been on Nutramigen since a few months old. Sometimes I also wonder if at least some of the wakings are because of habit but I can't try the cry it out method...it is just not me. I have read various sleep books and tried some of the things (other than cry it out) and nothing has really helped much. Also, I often hear the congested reflux sound when she wakes up so I know she must be having some discomfort. I haven't tried Mylanta when she gets up since just like you I also feel the PPI should be doing the job (and my GI also said not to use the mylanta on a regular basis). She also hiccups frequently during the day (especially when she laughs) and so I know she is still struggling with the silent reflux. Anyway, keep us posted on how the NAET and cranio therapy goes.

BTW what was your GI's opinion on the buffer babies? Does he feel it is ok to use it long term?

Aug 26, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Either of you guys have the heads of their beds elevated? I have 4 inch blocks under the legs of the head of the crib and a 1 inch wedge under the mattress cover. Just an idea if you havent tried that yet.
Aug 27, 2010
dcd
Sounds like Kylie and Kavya are very similar in terms of sleep. Kylie goes down around 6:30 or 7 every night - her choice, not ours. If we try to keep her up later she just gets fussy. She will usually sleep soundly, or maybe stir only once, between 7 and 11. After that, we never know what will happen. Sometimes she'll wake up only once or twice more, but most often it goes something like this: 11:00 stir, midnight stir, 2 a.m. stir, 3:30 a.m. bottle, 4:15 a.m. stir, 5 a.m. stir, 6-6:30 a.m. ready to get up.

I don't know that I'd ever have it in me to do the cry-it-out thing, but certainly not now that she's had all these issues with pain. I can't stand the possibility of leaving her in her crib to cry alone, thinking she's just doing it out of habit, when really she's uncomfortable. And how would I ever know for sure? Usually it seems like things change from day to day.

For instance, this morning she woke up with a running nose and some congestion. I don't THINK it's reflux-related - I think it may just be a bit of a cold since I noticed a little runny nose yesterday during the daytime - but how do I know for sure? Also, the rash under her eye is back, as of this morning. Not as bad as it was, but I thought for sure the rash was related to her old formula when it cleared up after a week on the Nutramigen. Now I don't know what to attribute it to! Are we dealing with a separate environmental or food allergy here now too???

I am such an all-or-nothing person, I feel elated when it seems things are improving and devastated when it seems like we're taking a step backwards. I KNOW that this kind of outlook is counterproductive when dealing with these types of issues. But the sleep deprivation is really starting to get to me and I can't really focus or concentrate; at work I feel like I'm wading through mud.

Anyway, yes Kylie's crib mattress is elevated, 5-6 inches or 30 degrees. I do think that has probably helped her congestion. We use the Tucker Sling to keep her from constantly sliding to the bottom end and it's great. I think the sling also keeps her from waking up even more than she does already - before we had it she would roll all over her crib and now the sling kind of holds her in.

Aug 27, 2010
dcd
ps. The GI was familiar with the Buffer Babies and seemed to have no problem with it at all. I said, "Also, I don't know if you're familiar with the Midwest Acid Reflux Children's Institute at the University of Missouri..." and he said, "Yes, so you're using the suspension then?" I said yes and told him about their dosing recommendation for Kylie (9 mg three times a day) and he said, "Good." But then we also discussed that I'm not giving her that much because I feel like she's really only having pain at night, so I'm just doing a double dose at night. He said people respond differently, so it's a lot of trial and error whether someone will do better on a double dose at night, splitting the dose, giving it three times a day, etc.

That's when he said that if I feel like the PPI is not working at night, I could take her off of it and try an antacid for when she wakes up, just to see if she responds to it. But you're right in that this is not a long term solution. And you can't give both a PPI and an antacid.

Just wish I knew what was really going on with her at night...

Aug 27, 2010
kavyamom
And Kavya only goes to bed around 9 or 9.30pm these days. I have tried to get her to sleep earlier but she just won't. So, she only gets one 3 or 4 hour strech between 9.30 and 1am and then it is all distrubed after that. And even this 3 or 4 hour stretch only happens with a very limited diet of 10 foods and she is 20 months old. We have tried a number of other foods and with that she will start getting up every hour or even every 1/2 hour from the beginning of her sleep itself. Also, whenever she is teething (which seems most of the time) it will also be very disturbed from the beginning.

We have our crib elevated only by 3 inches. I will post another email about that ...I had some questions.

Check with your
doctor first!