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Not sure where to post, since this is an all encompassing quandry I have thought myself into………Thats what happens at 3:00AM I reckon.
I will write my book then ask your thoughts.When Carson was born I knew he had major GI trouble-spitting entire bottles of formula through his nose and mouthsour facesmajor gas and crampsfeeding aversionswhat I now know to be Sandifers Syndromemajor constipationnever slept unless it was a cat nap in the swingthe list goes on….I forgot major man sized BURPS when you can get them outI breastfed for 3 weeks…..thats all I could take of the gagging and choking-we started Similac Advance with no improvement. Ped switched him to Alimentum-some lower GI improvement best I can remember, at least he could poop on his own.4 months go by with no relief- we go through coumtless peds and 2 Ped GI’sIn June, we see the 3rd GI and he puts him on Enfamil AR, Nexium and does endoscopy as well as a swallow study. Turns out he aspirates thin liquids, hence no luck BF’ing and by now my supply was gone. So for the past 4 months hes been on Enfamil AR thickened further with rice cereal. Reflux is under control but he still has major lower GI issues.He did blood allergy testing and it showed no allergy to 27 common foods? After the past 2 weeks with symptoms getting worse, I am wondering if I need to go back to Alimentum or give the probiotics a shot. At first I thought it was the mega dose of Nexium, but have ruled that out by stopping Nexium for a few days. That was
! I am wondering if it is an intolerance that wouldnt show on an allergy panel. He has had 3 negative hemocults and only has mucus in his stool 2-3 times per month, which the MD said was normal. I use about 4-6 glycerine supp. a week on him. If he doesn’t poop everyday it’s miserable around here. What ever MD started the lie that they only need to go once every 10 days needs to be drawn and quartered!He only sleeps 4 hours at a time and his naps during the day are only 30-45 mins long. This is killing us all. I haven’t even considered CIO because of the ongoing issues.My thoughts are that I need to try the Alimentum once again but I question how I will know if I need to go a step further to an elemental if there is no improvement, other than normal BM’s with Alimentum. Or are there other issues and what are they.I tend to think the lower GI issues got pushed aside at first b/c his reflux was so bad. He has been on 80mg of simethicome with every bottle since 2 months old. If not, you can not stay in the same house with him and forget a car….Did I mention we could have bought a summer home in The Hamptons on what I have spent for toot juice!
Ok – for the questions1. How I will know if I need to go a step further to an elemental if there is no improvement, other than normal BM’s with Alimentum?2. If there are other issues, what could they be?3. I have to thicken his feedings, but all cereals constipate, as well as, simply thick and the likes. Are there any other means to thicken out there?4. Is it normal to have a small amount of mucus in a stool infrequently?5. Am I fooling myself thinking this is going to get better before he goes to college?Any help is greatly appreciated ladies. I have had about enough of playing doctor for one day. My cranium is splitting….I forgot to mention he was 6 weeks early and a c-section baby as a result of PIH.One other thing that may be relative to intolerance- I dont drink milk- EVER not even when I was pregnant- not allergic- just Repulsed. I eat a lot of other dairy though.thanksCarsons_MomKM 2008-09-16 11:38:47 I feel you completely. I always run myself into the ground thinking and thinking about everything my DD is going through. To answer some of your questions…
1. My DD was switched from alimentum to elecare b/c there was NO improvement w/her refluxing. Arching, pulling off the bottle, eating poorly(miraculously gaining weight though). She never had any BM issues w/the alimentum so not sure there.2. It probably is a MSPI/MFPI issue. Meaning INTOLERANCE & not allergy. It really sucks that they can’t test for those b/c I think that’s my DDs biggest issue.3. Not sure of any thickeners. But have you tried diluted juice(pear) or plain water to help w/constipation? Meaning add the oatmeal and just also add in some juices throughout the day?!?! Not sure…4. I wonder this very same thing. My DD has been having them even on elecare!!! I have to ask her GI today. I’ll keep you posted.5. No, they’ll get through this WAAAYYY before college, like senior year in HS.
lol Seriously, we have too many mommies on here who have previous refluxers that are happy toddlers. So, it has to be true! 
Carsons_MomKM wrote:
1. How I will know if I need to go a step further to an elemental if there is no improvement, other than normal BM’s with Alimentum?I would get off teh cereals and go to Simply Thick used with a hypoallergenic formula. Also poos on Alimentum will be mushy soft and green, that is ALL normal for that formula. I have known tons of kiddos on it and all their(jedd included) have green mush poos on it.2. If there are other issues, what could they be?Have you had an EDG and did it show any damage and what were the results of the biopses.3. I have to thicken his feedings, but all cereals constipate, as well as, simply thick and the likes. Are there any other means to thicken out there?You can use Sumply Thick and Thick It. Those are commercial thickening agents. One is a powder and the other is a thck liquid. I forget which is which, we never used them. I *think* the liquid one (simoply thick) works better if I am remembering correctly. We did use one packet of simply thickand it was pretty good. Again, if I am remember right, the thick it will continue ot thicken the longer it sits, Simply Thick won’t do that. I didn’t for us at least and I sat it in the fridge overnight.4. Is it normal to have a small amount of mucus in a stool infrequently?I wouldn’t think mucous in stool woudl be normal. JMHO…I would t hink it would be caused by some type of allergic reactin to something.5. Am I fooling myself thinking this is going to get better before he goes to college?It will get better I promise. By all mens DON’T DO CIO not right now. IMHO CIO is for healthy babies and I personally do NOT consider gerdlings heathy babies. We never did CIO and Jedd sleeps like a rock for 11 hours straight now.Please don’t throw rocks at me…LOL We paid our dues…I promise….I went for almost 18 months with NO sleep working a full time job. I FEEL your pain, I do.
Any help is greatly appreciated ladies. I have had about enough of playing doctor for one day. My cranium is splitting….I forgot to mention he was 6 weeks early and a c-section baby as a result of PIH.One other thing that may be relative to intolerance- I dont drink milk- EVER not even when I was pregnant- not allergic- just Repulsed. I eat a lot of other dairy though.thanksHave you ever thougth of having a Colonoscopy done to see what is going on in that end. They can take biospese and test for HD disease. (I *think* it’s spelt, hirschurngs disease I think I butchered that spelling BTW)Also have they don’t an x-ray to see f there is a blockage present. Some kiddos who have diareah can still have a blockage called an obstruction.Just something else to look into.LOL…I meant to add the cereal to his formula. Not just cereal by itself.
Maybe you could add a little pear juice to his formula? Never tried it, so I don’t know. Just running thoughts through my head straight to the keyboard. As far as the choking and gagging…Have they done a swallow study? That may help you a great deal. They are able to tell you if he’s aspirating and to what thickness his formula needs to be? Nevermind, I just saw you’ve had a swallow study. Hmmm??? I hope someone w/more experience chimes in cuz I’m at a loss.Question about the sandifers…Have you noticed a decrease in the symptoms w/your med dose or no? My DD was just diagnosed today w/it and she’s on a high dose of prevacid. I thought the meds were working until the diagnosis. Not sure where to go from here.Kelly,
First, thanks for not throwing rocks!!!! LOLNot sure where you are located but if the issues withpooing are too bad have you thoguht about seeing a motiliyt specialist or at lest having them look at the records for you. Some of them will order tests to be done at your hospital IF they are availiable and then will have the results sent to them and then hlep that way. For a fee of course.That way you coudl get some help gettign a good bowel regimine going. I know afew who use miralax and other things daily to rpduce a bowel movinment.Also if the bowel movemetns are bad enough the motiltiy specialst can order up an Anal-rectol Manometry test. That test will basically test the contractions throught the rectum and colon area/ lower intestines to see if the body is contracting well enough to have bowel movements. This will allow them to see if that is the issue.BTW a child who backs up on that end normally has issues with Reflux….LOL It’s true. Somekids can back up soo bad it affects the whoel GI tract and not much can move because of it.
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