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We see the GI doctor tomorrow for a follow up visit. (See 23 months and no hope post). Ds is drinking his Elecare better now and has stopped screaming all day after stopping the Carafate (he was on it a month). I think the Carafate may have helped in that he is drinking now, but also slowed his lower gut (even with the extra Miralax) so much it caused extra pain there. He is still uncomfortable some, more in the evening and some nights are still restless. He does seem to have some good nights (sleeping several hours in a row without screaming), which is a new to us. I think I may have noticed a pattern (testing it again now) of increased restlessness and pain at night when he has his Elecare at 4pm (we cut out the 7pm Elecare) . When I don’t give him formula at that usual evening time (9 oz of liquid) his night seems better. He eats solids at dinner around5:30pm and then maybe some Cheerios around 7 if he is still hungry. Just water with dinner or cheerios.
So, I wonder if it is the extra fluid causing more reflux in the evening/night or if it is the corn in the formula? He has never had soy other than what was in my breastmilk early on before I took that out of my diet. This is the first time we have been doing without Elecare after lunch. So, reflux b/c too much fluid near bedtime (yes he sleeps elevated) OR corn problem OR both. Corn is the one thing I never cut from my diet when breastfeeding or from a formula. He went right from breastmilk to Elecare. I have never tried rice milk with extra fats added b/c rice use to really bother him too.Ds is starting therapies with ECI (speech, feeding, etc) and they recommend a swallow study. I plan to ask the GI. Hope she will do it. They want to make sure he is currently not refluxing so much he could aspirate. He has never had an URInfection.So, is there a way to try ds without corn? Right now he seems to somewhat tolerate 2 1/2 oz of turkeyor beef (stage 1 baby food), pasta about 1/2 cup, 1 cup Cheerios a DAY. If I take away the Elecare what could I use to replace it? Just try to increase solids (in the past has made things worse) or try some soy milk and take away the corn.I am so nervous to try anything since it seems like every time I try something it gets worse.
Can you think of anything I need to ask the GI doctor this go round? Would be nice to know for sure if it is the reflux or the food intolerances that is making him so uncomfortable. I know it may be both. Just want to feel like we are getting somewhere. I don’t think you should have to feel nervous about feeding your child, but sometimes I guess you just do.BlessedMomSorry I have not updated. Trying to get my first born off to Kindergarten!
GI visit was a bust
. She was glad to see he had gain some weight and ht. Said to continue ds Elecare even though I told her corn was the only thing I had never taken out of his diet. Thought that might be important since she keeps saying this is a food intolerance. But here is the thing that mad me so upset–I told her my goal was to have him have less pain during the day and night and get him at least several hours sleep in a row. Not bad goal I thought. I didn’t even say I wanted him pain free and sleeping 8 hours a night. Her response: Well he will out grow this and we are doing all we can do (short version). She didn’t offer any other plan. No “we can try this” or no question about just how much sleep is he getting–even when I said I was pretty sure his speech delays and other issues are caused by his pain. She agreed that could be the case, but don’t worry, these kids usually catch up well. WHAT!!!
How can she agree with that but not offer anything else? I asked her last visit about changing to a different med since he has never been on anything else other than 7.5mg Prevacid twice a day (well other than when I increased his dose for about 1 1/2 weeks)–No, I don’t think he needs a different PPI was her response.I also told her sometimes he seems very uncomfortable during the day (screaming out suddenly, clinching his fist, gritting his teeth off and on) then after this goes on about 20-30 minutes he will have a bowel movement. NOT constipated. GI said, sounds like he has painful parastalstis as things move through his gut and that he will most likely have irritable bowel syndrome when he is older. OK, didn’t she just say he will grow out of this??
So, what do you even say after that. Don’t get me wrong, she was nice about it and said this was all most likely a food intolerance. Did say the most likely next step was an allergist. I told her he had been to two and even had skin prick test (I know not very helpful, but I did it anyway–neg). Basicly she is telling me she has done all she can do. I feel so defeated and mad at the same time
.Anyway, ECI is helping us with speech, feeding therapy, OT is coming and a pedi nurtionist. I am trying to be hopeful. Oh, had a swallow study in which they watched him swallow 2 squirts of contrast from a syringe and 2 cheerios dipped in contrast–results, he swallowed safely, but we couldn’t get a good view of his jawline during swallow, but no aspiration. When I asked about trying again, they said no they saw he swallowed safely.
that’s all I got.BlessedMom0710
hugs! rushing out the door!
did increased prevacid help??if so, do it again???YOU are the mama!if you think it’s corn- do a search on here – go back 6 months & OLDER
you can do this!
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