Jeter weight check again

KateVA · March 2014

So sorry, this is stressing me out, I can't imagine what you are going through. I feel like this baby should be hospitalized for monitoring. I agree that a second opinion is needed

Yankees0623 · March 2014

Thank you all. I will def call my insurance about getting a second opinion. He has a referral for an allergist. I have to call Monday as they are closed today.

We've tried soy and allimentum. There is one formula we haven't tried (idk the name) but it has to be special ordered by a doctor (they are working on this).

The more research I do based on the blood work the more I am leaning toward thyroid issue or gluten sensitivity.

Surgery was a success as he had follow up ultrasounds.

His next blood work will be a CBC with Diff with Plt, a comprehensive metabolic panel, T4, TSH, celiac disease profile, and GGT

His official dx is failure to thrive and elevated liver enzymes

74dragonfly · March 2014

I am so sorry you still have no clear answers. I am sending more prayers your way. And a big virtual hug!

KFED103 · March 2014

I'm so sorry you are going through this. I truly hope you get answers soon

liz429 · March 2014

That has to be terrible to deal with. I hope they find answers very soon and your baby boy flourishes. T & Ps for you

Mac2588 · March 2014

Yankees0623 said:
Does anyone know...

Is it even possible for him to have CF? Wouldn't Mirabella have it too then, since they have the same set of parents?

I believe both parents have to be carriers and then each child would have a 25% of having it. My friend's middle son had it, oldest and youngest don't, same parents.
Best wishes for you guys, I can't imagine what you are going through.

KFiori1 · March 2014

so sorry!!! praying for you guys!

Yankees0623 · March 2014

Ok, I know I'm not a carrier as I've tested negative in each pregnancy (I opted out with Jeter because the previous 4 were neg).

Based on his skin (see photo) I'm thinking celiac.

Yankees0623 · March 2014

This pic was taken just now while he's eating.

gcama85 · March 2014

Sending positive thoughts your way!

RanFan28 · March 2014

I'm so sorry LB! Feel free to email if you need to vent. Praying, praying, praying for you and sweet Jeter.

Kelamz · March 2014

I am thinking and praying for you both! I know you are doing everything you can and are being a great mom. You'll figure this out.

Yankees0623 · March 2014

Thank you all so very much! The prayers and thoughts and support system we have make us happy.

frankierokx · March 2014

So, so sorry for you poor little man. I really hope you get some answers soon. You and Jeter are in my prayers tonight.

Kermode61581 · March 2014

I hope you get some answers soon so you can get your little man on the road to recovery.

playball13 · March 2014

I hope you get some answers soon, thoughts and prayers are with you.

lifesaverz · March 2014

So sad for your poor little guy! I read all your updates, definitely sending T&Ps your way!

notthecheat · March 2014

So sorry! I have been thinking of you. I will have to work a little harder on my well wishes!

*hugs*

jaykay627 · March 2014

I've been praying for you all since you first told us about Jeter's weight gain issues, and I will continue to do so. Hang in there, Mama.

kbart82 · March 2014

So sorry you, your family and LO have to go through this. Sending thoughts and prayers your way. I pray you get answers soon and are able to help LO get better.

I second getting a second opinion. Two weeks seems like along time and it must feel like an eternity for you. Sending creepy hugs your way.

BootsOrHearts · March 2014

I agree the symptoms look like celiac but formula doesn't have gluten so hard to imagine how that's happening unless you were giving cereal to help with reflux or something? Another idea is to try donated breastmilk to eliminate any other allergens that might be in formula. Has he ever had breastmilk and that did that help? Also did you say you had tried neocate formula?

Just trying to think of anything that might help, if you've already tried these things feel free to ignore!

Yankees0623 · March 2014

BootsOrHearts said:
I agree the symptoms look like celiac but formula doesn't have gluten so hard to imagine how that's happening unless you were giving cereal to help with reflux or something? Another idea is to try donated breastmilk to eliminate any other allergens that might be in formula. Has he ever had breastmilk and that did that help? Also did you say you had tried neocate formula?

Just trying to think of anything that might help, if you've already tried these things feel free to ignore!

He has not tried neocate. He's on enfamil AR but no rice cereal. He's been on regular enfamil, regular similac, similac soy, similac sensitive, Alimentum, and enfamil AR.

He was breastfed partially until he was 1 month old. Hard to say if there was a difference because that's when he had pyloric stenosis.

With the Alimentum his skin was decent but he threw up after every bottle.

Here is a picture of the backs of his knees.

notkateanymore · March 2014

Is there a way you can get a second opinion without having to go through the insurance? Like the emergency room or something? Poor babe! His skin looks so painful. Hang in there, momma. I hope you have answers soon.

amberpro · March 2014

Oh my goodness! That poor thing! Have you called? Praying and sending hugs! Hopeful they'll figure it all out and get him on a treatment path.

Yankees0623 · March 2014

KateMW said:
Is there a way you can get a second opinion without having to go through the insurance? Like the emergency room or something? Poor babe! His skin looks so painful. Hang in there, momma. I hope you have answers soon.

Not if I want ins to cover it. We have to use a pcp unless it's a true emergency. I'm calling first thing Monday morning though.

notkateanymore · March 2014

Yankees0623 said:

Is there a way you can get a second opinion without having to go through the insurance? Like the emergency room or something? Poor babe! His skin looks so painful. Hang in there, momma. I hope you have answers soon.
Not if I want ins to cover it. We have to use a pcp unless it's a true emergency. I'm calling first thing Monday morning though.

Oh well. Good luck Monday! Don't take no for an answer!

Yankees0623 · March 2014

KateMW said:

Yankees0623 said:

KateMW said:
Is there a way you can get a second opinion without having to go through the insurance? Like the emergency room or something? Poor babe! His skin looks so painful. Hang in there, momma. I hope you have answers soon.
Not if I want ins to cover it. We have to use a pcp unless it's a true emergency. I'm calling first thing Monday morning though.

Oh well. Good luck Monday! Don't take no for an answer!

He's very alert today which I'm loving usually he just wants to eat and sleep.

Kelamz · March 2014

My friend, a nurse, wondered if you have tried changing your water (bottled v tap), or changing the filter on your fridge? Also: allergies to detergent or mold?

Just thoughts. I know you will find the answer. I just can't stop thinking of you and Jeter.

Eta: posted too soon

Yankees0623 · March 2014

We use water from our Brita. Filter changed every month. He'll have allergy testing soon as well.

My daughter is allergic to egg whites, egg yolk, peanuts, tree nuts, avocado, mustard, cinnamon, and tomato. She grew out of allergies to milk, soy, and wheat.

insertclevername · March 2014

Oh my. My heart goes out to you and Jeter. Based on that photo it definitely looks like some sort of allergy or intolerance. That is what DS1's skin looked like before we got his MSPI under control. When will they start testing for Celiac's? I am so sorry you are going through this.

insertclevername · March 2014

I would try neocate or elecare. Your pediatrician should have samples.

Yankees0623 · March 2014

NYMama1 said:
I would try neocate or elecare. Your pediatrician should have samples.

There is some type of formula she wants to try, I can't remember the name of it, but it has to be specially ordered by the doctor.

He will have his testing on Friday. They are rechecking his thyroid, CBC, and liver as well as testing for celiac.

Kelamz · March 2014

I am glad to hear the allergy testing and new formula. Keep us posted - new news or not- we are here to listen and support.

Yankees0623 · March 2014

He will also see a GI dr and I have to call the allergist on Monday.

lynngotts · March 2014

Hoping for the best for you and Jeter! I agree with all above...really looks like an allergic response. I hope you get some answers ASAP!

Kelamz · March 2014

Amy g is right. It is necessary

Stffhappns · March 2014

I've got to second the squeaky wheel comment. IMHO you should either demand that the pediatrician admit him to the hospital to begin testing immediately, or go to the ER. I know we got plenty of infants coming in whose parents thought they just "weren't acting right", or they hadn't peed in more than 8 hours and we gladly saw every single one of those babies. Again, but that's just my personal opinion since I'm no doctor.

swirl25 · March 2014

More prayers for your LO and your family. I am so sorry you have to go through this...so scary and sad.

I hope the testing turns up some definitive answers.

megzz1984 · March 2014

Did you try the ready to feed allimentium? I just learned that it is different then the powdered version. The ready to feed has no corn in it.

Yankees0623 · March 2014

megzz1984 said:
Did you try the ready to feed allimentium? I just learned that it is different then the powdered version. The ready to feed has no corn in it.

No, I haven't. I haven't even seen that in stores. The reason they took him off allimentum was because he was throwing it all up. He projectiled at the dr office so they finally got to see just how much it was.

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