Confused to say the least..formula issues

[Anonymous]

Okay, so it seems the more I read the more frustrated I get and want to cry. I am so confused. My Dr. has finally referred us to a GI specialist but there is only one in close proximity to us and so we have to wait until Oct 5th to get in..lol…so, we wait…in the meantime, my dr. refuses to prescribe anything other than pepcid, so we are on that. My frustration is with the formula, like most people we were on normal formula until around 3 weeks of age, then due to reflux we went to alimentum, my son tolerated it for a month until this thick white mucus developed in his throat, the dr. told us to give him mucinex and do saline breathing treatments with him…it didn’t go away. My husband and I started talking and wondered if it was the alimentum because the consistency of it is so oily….so…we started him on nutramigen with enflora (because that is all we could find) and the first night he was a different child, no mucus at all and he was smiling….now we are on day 3 and still no mucus in the throat but an hour after feeding he is screaming bloody murder, I mean worse than ever before. My dr. told me to wait it out and give it 2 weeks, but the crying is horrible I mean he is in pain of some sort and the gas that is coming out is sooo loud. So, I gues my question and confusion is do I have to choose between mucus and not breathing or crying and gas so he can eat?? Should I stick with the nutramigen will it get better? Is the mucus and the crying all related to an intolerance or allergy? I just don’t know what to do!!!!! He has also developed cradle cap, but he started developing that on the alimentum and his bottom is a little red especially around the anal area because his stools have been loose since the nutramigen, but they were also loose for a week when we started the alimentum…what is normal anymore?? My dr. mentioned neocate but my insurance refuses to cover it (my insurance will not even cover immunizations, its a joke..) and we really cannot afford it but would if we have to, but the other problem is that there is only one place that carries it around here and that place is an hour away, I would rather this be a last resort…I don’t know..please help..should I stick with the nutramigen a little longer??

[hellbennt]

I don’t like the sounds of your doctor, I’m sorry to say. mucinex and saline??? this is clearly going at the SYMPTOMS and NOT going ‘deeper’ to try to address the UNDERLYING ISSUES.
I am not ‘yelling’ at you, just your doctor.
Can you find a family doctor that will be more open & willing to help as you wait for the ped GI? Can you FAX the ped GI for help in the meantime? That’s what I might do…

Have you looked here?:
Looking for a GI:
https://www.infantreflux.org/forum/forum_posts.asp?TID=660

is baby on maximum dose of pepcid? have I helped you with this?
how much does he weigh?

I would try to stick w/ the nutrimigen? and give mylanta when he is screaming to see if it helps calm him down. <!–
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(sorry for the underlined words )

? try mylanta cherry supreme or any store
brand equivalent, looking at the ingredients to see that you choose the one w/o
any aluminum. it’s the adult kind and safe for even newborns. give 1ml
and see what happens. you can give up to 5mls over the course of the day &
if you see loose stools, just back off some.

hellbennt2010-08-13 08:37:19

[Anonymous]

Thanks so much, you have helped! So, we got into the specialist because of a cancellation and he told me NOTHING I did not already know for myself…So, I am just frustrated…we are sticking with the nutramigen and throughout all of this I have learned that DR’s do not know everything :)..I do have a question for you, I noticed your child had Sandifer’s..we were first diagnosed with torticollis and now they are saying its Sandifer’s we are going to an Occupational therapist because the initial thought was torticollis…I am trying to understand Sandifer’s so here are my questions…

1. What causes it? Is he on the wrong formula and is in pain and so that is why he is jerking and stiffening? If he is on the right formula would it go away?

2. Does occupational therapy help with it? With torticollis they are telling me to watch for facial deformaties and stuff…the right side of his head is flatter now….Can anything help it?

3. It seems to be at its worse right after eating, trying to burp him or in the middle of the night when I hear him making “huuuuh” sounds which makes me think his reflux is acting up…if his reflux is better controlled would it go away?

4. I guess all these questions are to ask…is it anything I can be or am not doing for him??? How I do I treat this? Will it go away or will it cause him issues later in life?

Thank you so much, especially for understanding..this forum has helped so much. It is nice to know that I am not alone in this madness….although I feel like I mad all the time these days 🙂

[hellbennt]

medicine stops the sandifers.
the RIGHT medicine
at the RIGHT dose
in the RIGHT form.

Physical Therapy can help but your baby could be helped by being medicated.

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