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Feeding Issues and Aversions
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blessedmom07
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Quote blessedmom07 Replybullet Topic: Doctors can't seem to help, anyone else ds in pain
    Posted: 31 December 2011 at 12:16am
I am sorry it this is long, but I need help.  Please read and see if you know any reason this is happening.  If you can't help, do you know a doctor or someone who can?? PLEASE
My ds is 17 MONTHS old today.  He has had arching, gulping etc and dx with silent reflux since about 2 months old.  He has always and still to this day, stiffens out when drinking his bottle.  You can not bend him to a forward at all (not that I want to, just describing).  He has seen 3 different pedi GI providers and now 1 pedi surgeon (to rule out malrotation--redundant duodenum was seen on Upper GI-they said it was a normal abnormality).  Dx with MSPI.  At birth he was in the 50% by 4 months was in 25% then 10% then 5%.  Now my primary pedi (who is great and trying hard to help) just writes less than 5%. DS had an edoscopy and colonoscopy that were both normal (path reports also neg)
 
What I feel I do know is yes he has reflux.  I can hear him gulping.  He has lots of gas, bloated belly (still looks like he just had a huge meal even though it has been hours since his last bottle). No blood or mucous I can see in most diapers. AND the worst part EVERY TIME I TRY SOLID FOOD (no dairy, soy, egg or nut), HE IS IN A GREAT DEAL OF PAIN!!  Now I am NOT talking chicken strips here.  Anything, not just this fruit or this veggie.  He had been on just Elecare for 1 1/2 weeks (Elecare is his main food source).  Doing pretty well, even would say great for 4 days.  Then even with just formula, the amounts started to decrease an ounce here, two oz that feeding and so on.  So, since yet another doctor said he was fine, I started giving him about 1 ounce of stage one peaches just once a day for 3 days.  Then 1 ounce stage one pears for 2days.  Over those days, he was a little more fussy each day.  Worse today, no BM for two days until tonight.  Very fussy this evening, still drinking bottle well (thank God) and tonight he Poops.  It is painful, he strains, and cries.  The stool was mostly mussy with one more solid but soft piece (trying to use Bristol Stool chart terms).  Now he is alseep, but keeps waking repeatly-crying.  When I pick him up to comfort he passes gas (90% of the time) or grunting like he is trying to poop, but doesn't.
 
What I described above has gone on for so many months now.  He has had Zantac, Prevacid (current), Bethanechol, EES, Miralax and on and on.  I was breastfeeding until 9 months old, did the TED.  He went to just Elecare.  Try this solid food or that.  Nothing really helps!!!Cry  He gets better for a few days and I will think, oh maybe that is helping....no. I know I am most likely leaving out something, so please ask any question.
 
WHY is this happening. 
 
DS does has an airway Hemangioma, but he is on Propranolol and no breathing problems since he started it at 3 weeks old
 
Thanks for ANY Help
Blessed Mom
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ds-7/29/10 silent reflux, MSPI on Elecare,bloating,painful gas, Prevacid,(no sucess w/Axid, Bethanechol,Levsin,EES)
dd 2007)
silent reflux, poor wt gain possible MSPI now age 4 off med
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Rachel_Neocate
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Quote Rachel_Neocate Replybullet Posted: 01 January 2012 at 8:08pm
Wow! It sounds like you and your LO have been through so much :( My LO is 17 months old as well and has MSPI, but we're able to control his symptoms with my diet (he's BF'd) and his diet.

I may be way off base here, but has anyone every thought about Eosinophilic Esophagitis or EoE? It has some similar symptoms associated with it like you're describing. You could do a Google search and read about it, and there's some info here too:

http://www.neocate.com/blog/ask-the-nutritionist-eosinophilic-esophagitis/

I hope you're able to find some relief soon for your LO. Hang in there, it sounds like you're doing everything you can to help your LO.
Rachel
Mom to 3 boys!
Augustboy02 - Sensational Sensory Kid
Decemberboy04 - former reflux baby
Augustboy10 - MSPI baby
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blessedmom07
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Quote blessedmom07 Replybullet Posted: 01 January 2012 at 9:03pm
Thanks for your time. 
 
DS had an endoscopy and no Esinophils noted so I guess no EE.
 
The last thing the GI doctor said was to go to an allergist, but DS would have to be allergic to every food out there.  I have tried different veggies, friuts and chicken.  Same pattern happens.  I only has ecezema type stuff in the winter and no "allegric" type stuff like face swelling or trouble breathing. 
 
I have thought of just going to the allergist anyway, but don't want to put DS through skin prick testing if no other signs point to this, including nothing on biopsy of scopes.  Then again I don't remember how much stuff he had to eat before his scopes, maybe that is why no changes on the biopsy reports
 
I am at a loss Cry
Blessed Mom
ds-7/29/10 silent reflux, MSPI on Elecare,bloating,painful gas, Prevacid,(no sucess w/Axid, Bethanechol,Levsin,EES)
dd 2007)
silent reflux, poor wt gain possible MSPI now age 4 off med
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Rachel_Neocate
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Quote Rachel_Neocate Replybullet Posted: 03 January 2012 at 11:48am
I'm glad you've already ruled out EoE.
I took my LO to an allergist and he's had the skin prick test twice. It didn't really seem to bother him? But every baby is different, so I'm not sure how your LO would do with it? Allergy testing is debatable in children under 2, but I think as a mother it does help me to feel like I've covered my bases, YKWIM?
My LO also doesn't have the typical allergic reaction symptoms, his are all mainly GI, behavioral, and skin related.
I wish I had better advice. Hang in there.

Edited by Rachel_Neocate - 03 January 2012 at 11:49am
Rachel
Mom to 3 boys!
Augustboy02 - Sensational Sensory Kid
Decemberboy04 - former reflux baby
Augustboy10 - MSPI baby
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blessedmom07
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Quote blessedmom07 Replybullet Posted: 03 January 2012 at 1:58pm
Rachel are you saying your baby was positive on the skin prick test or just that you beleive he is allergic based on his symptoms or "intolerant" based on his symptoms??  Just trying to decicde if going to the allergist is worth the trip.
 
Thanks for your support
Blessed Mom
ds-7/29/10 silent reflux, MSPI on Elecare,bloating,painful gas, Prevacid,(no sucess w/Axid, Bethanechol,Levsin,EES)
dd 2007)
silent reflux, poor wt gain possible MSPI now age 4 off med
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Rachel_Neocate
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Quote Rachel_Neocate Replybullet Posted: 04 January 2012 at 11:47am
Sorry, I guess my answer was sort of unclear! The skin prick tests were negative both times. They tested him for the top 8 and oats both times. So that would indicate, based on the skin prick, that more than likely he is
just "intolerant" and that hopefully he'll grow out of it.

We just recently did a cooked dairy challenge where he and I were both eating things made with dairy and soy, at first I thought he was handling them fine, but after a few days he started screaming ALL the time, night-waking, and finally bad gas and bad diapers. I do think that it was worse when he was an infant so I'm hopeful that in another six months we can try again.

Anyway, now I'm rambling!!! Good luck in whatever you decide to do!

Edited by Rachel_Neocate - 04 January 2012 at 11:48am
Rachel
Mom to 3 boys!
Augustboy02 - Sensational Sensory Kid
Decemberboy04 - former reflux baby
Augustboy10 - MSPI baby
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