from bad to worse

[Anonymous]

Sorry to post another boo hoo, but things are going from bad to worse. Hailey has refused all meds by vomitting them up and/or refusing them if put in her milk. She hasn’t had a correct dose in over a week now, and I’m at a loss of what to do. We saw a new doc today, and he said that the fact that she is still showing so much Sandifer’s means that she likely has severe esophagitis, and he would like to arrange a scope but she needs it done at the children’s hospital which means that she has to wait first until we see the doc in a month’s time, and then probably another month until they can schedule it. That’s the way our twisted health care system works and there’s no way around it. I’m so upset right now. I don’t know how we got to this point. Hailey can barely eat. She’s moaning and crying and arching, and it really breaks my heart that my poor little baby should have to suffer like this. The new doctor that we saw today was so nice and is willing to work hard to help us (which is certainly worthy of a hip-hip-hooray), but recognizes the challenge in that we can’t get any meds into her. We might have to admit her to the hospital to have meds infused through IV and then continue the drip at home until she’ll take them orally again. We’re now trying prevacid, but we only get capsules and Hailey can’t tolerate the texture without vomitting. It’s such a nightmare. Watching her suffer like this still is honestly more than I can bear. I feel so defeated. Thanks for listening.

[Anonymous]

Lori I really feel for you. Something has to start going right soon!

Have you researched the customs requirements to import medications? In Australia we can import 90 days worth of medicines as long as they are not on a prohibited list. Maybe you could get the solutabs?

Can your ped call the childrens hospital and get you seen any earlier?

It must be so frustrating for you. Did your doctor suggest a Neocate trial at all? Might be worth trying if she isnt really taking any formula anyway. I honestly dont know what state Tyler would be in right now if we hadnt switched formulas.

At least if she gets admitted to hospital for the IV they might take things a bit more seriously and maybe push for testing while she is in there.

Hang in there.

[Anonymous]

ohhh poor Hailey…keep pushing them, good that you found a doc that is finally willing to do thier best to get you help..it is horrible that it might take that long..how can they make kids suffer like that..totally unfair…I agree with Amber, maybe if she does end up having to be admitted it can push things forward faster??? Stay strong Lori, I’ll keep Hailey in my prayers…

[Anonymous]

Oh Lori – I’m so sorry to hear this. I am glad that you at least found
a new doctor who listens and realizes there is a problem and is trying
to arrange a scope. There is no way he can push to have the Children’s
Hospital do it sooner?

Do you have any friends in America that can get the Solutabs for you and you or your husband drive here to get them?

I wish Hailey would take a different formula. I do think the Good Start
may be contributing to the problems – with her chronic constipation and
reflux sounds like she could be somewhat MSPI – but even if not, being
on Neocate or Elecare would give her system a chance to heal. Do you
think she’d take it if sweetened and/or with Simply Thick?

[Anonymous]

Poooor Hailey

I remember reading your post on another board because I remembered

our kids are relatively close in age

I so wish I had some great insight for you

I’m so happy you found a Dr that recognizes the problem and is willing to

help

I just can’t believe your poor dd needs to wait 1 mnth for testing…that is

INSANE that she should suffer that long

i also agree that her reflux might be worse due to an allergy and a trial of

neo or elecare may be worth a shot!

I have 2 refluxers and my ds hated his meds but in the am we would

make him take the spoonful of pears etc before getting out of his

crib….sounds mean, I know, but it worked and he got the hang of it

pretty quickly

BUT he did not vomit or have texture issues…

GOOD LUCK

Kim

Zachary and Ava’s mom

[Anonymous]

Thank you everyone. I did just try neocate and she wouldn’t go near even half an ounce mixed into her regular formula. This morning we held her down and forced the meds into her. She screamed so hard, and then she immediately vomitted the whole thing up. Thanks for the heads up re: customs Amber…I’m going to call on Monday and find out. Thank you all again for caring.

[Anonymous]

Oh Lori, just read this…. it is the never ending story, is it? I do pray that things get better for you and Hailey really soon

[Anonymous]

Lori, I’m so sorry. I don’t have much advice. I hope you can get the meds into her really soon. Have you tried giving the medicine to her in something different, for example if you usually give it in a dropper how about try a spoon? I like Amber’s idea, see if you can import some in – surely that has to be an option!

[Anonymous]

I am glad that they are finally going to get some tests done but at the same time i hate that it will take that long for it to happen! The prevacid solutabs has the little balls in them too. Isaac has texture issues and hated the little balls. I will be praying for you!

[Anonymous]

I think the reason that the Solutab will be better is that you’ll be able to plunk it right in her mouth and let it dissolve. Hailey had huge issues with texture too (vomited frequently from certain things) but took to the Solutab in her mouth rather quickly – I think it was at around 8 months or so.

[Anonymous]

Ugh….sorry to hear about the neo experience

When we switched my ds from b/m to alimentum he puked the entire first

bottle then it was a rough 2 weeks, BUT he did get used to the taste

What formula is she on now…a hypo?

I really think PART of the problem could be an intolerance/allergy which

is making eating SOOOO painful

I hope things get better soon

(((HUGS))))

Kim

Zachary and Ava’s mom

[Anonymous]

Lori, I am so sorry you and Hailey and the rest of the family are going through this. Hailey is lucky to have sich a caring, dedicated mom. I will keep you guys in my prayers.

[Anonymous]

Oh Lori – just saw this post. I’m sorry you and Hailey are still
having such a horrible time. Sounds like you have a doctor now
that hopefully will help you get some answers. Maybe he can push
the hospital a little? Hopefully she can get some tests done soon
so that she is more comfortable and you can enjoy your little
one. Hugs from Zach and I – we’ll keep you in our prayers!

[hellbennt]

I just saw this post too!

Please know we are all here for you!

A Big Hug for Hailey and you and your daughter and you dh and everyone!!!

[Anonymous]

Lori, so sorry to hear whats going on. I have some left over solutabs we can’t use because Ryann is mspi. I would be happy to send them up real fast so Hailey doesn’t have to suffer any more. Don’t know anything about losec, but i do go to compounding pharmacies and get the prevacid compounded when we are having issues like that. Also, we are having infant’s gaviscon shipped to us from a friend in england to coat her esophagus and we use something called carafate, which is used to treat and heal ulcers that helps a bunch.

When i need a test really fast , i go to childrens hospital and whine until they admit her, then they have to do the test there. Just made the neocate switch too, had to gradually do it by adding a tiny bit in with the old formula each day. Lots of hugs and prayers from us.

[Author]

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