Infantreflux.org | What else should we do?

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June 2, 2007 at 3:49 pm #35391

Anonymous
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I posted else where on here about Maggie getting worst with the reflux. She was hospitalized on Thursday. We are home for the weekend and still have no answers. We came home because the rest of the test need to do for Maggie cannot be done until Monday unless we transfer to another hospital.

Luckily I printed off all about the correct dosage for Prevacid for Maggie before her dr. apt on Thursday so we got that fixed. When we arrived at the dr. Maggie was running a low grade fever but they have done urine and blood test to rule out infection. Maggie has lost even more weight and is now below her birth weights again at 1 month old. She eats like a trooper but is now projectile vomits as well as spitting. They have tested her for food allergies and we are waiting for her to be tested for an allergy to a protein and too see if she has colitis. I am quite worried because of the weight loss. I just want my baby gaining weight and not in pain…anything else we should have tested or be doing or talking to the dr. about. I cannot tell you how scared I am having a baby that is a month old who is not her birth weight.

June 2, 2007 at 4:20 pm #35394

Anonymous
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I am so sorry about this. It must be terrifying about her weight. I just cannot imagine what your family is going through. I am sending a prayer up for Maggie. Please keep us posted.

June 2, 2007 at 4:29 pm #35396

Anonymous
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The infection worries me and throws another wrench into the whole reflux thing. If ANYTHING else is going on with Carson, his reflux is so very, very bad. With the tests needing to come back, that will take a little while. I would suggest, as a mom’s opinion, to stop all milk and soy (for you if you are BF or ask about switching her formula to Nutramagin – Neocate if any tests show milk/soy allergy).

I very much know how scared you are about weight. We have been doing this for 22 months with Carson. We take it day by day. When your tests come back, you can get a plan and then, at that time, once you start with your plan, it may take a while for her little system to settle down -get out the proteins she can’t have, etc-.

I am so sorry you are going through this. Keep posting and look through the past posts by searching for words that you think may apply. It is a great source of information from moms who *know and been there*.

Keep your chin up. Keep your baby’s chin up (elevate crib) and let’s pray for fast test results.

June 2, 2007 at 5:19 pm #35404

Anonymous
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I’m so sorry Heidi. I know how scary it is when they start losing weight. If she’s vomiting so much that she’s not gaining, then I would ask your doctor about testing her for delayed gastric emptying (DGE). This is what Bryce has. He also used to vomit so much that he could not gain weight, and at one point he started losing. Once he started taking erythromycin for his DGE, the vomiting decreased dramatically and he finally started gaining weight well. That’s just one idea. I sure hope you and the doctors can figure out what’s wrong soon and little Maggie can start to thrive.

June 2, 2007 at 5:29 pm #35405

Anonymous
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Maggie, you and your family are in my prayers

Always go with your gut feeling and if you get nervous this weekend, I would go to the other hospital. When Leah was at the height of having silent reflux episodes (choking and not breathing), we had to take her 1 1/2 hr. away to a hospital that would know better how to help us than our local one. We stayed there for five days and it was definitely worth it.

June 2, 2007 at 6:17 pm #35408

Anonymous
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Oh my goodness,

I can’t imagine what you are going through. It’s the hardest thing in the world, in my humble opinion, to be a mama and watch your sweet baby in pain. You and your family will be in my thoughts and prayers tonight.

June 2, 2007 at 7:48 pm #35412

Anonymous
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Oh my, I’m so sorry. i sure know how worry one can get when your child is not gaining wt, is vomiting and in pain. Hang in there. I pray those results would come back soon and you can have some anwers and work out solutions.

June 3, 2007 at 5:34 am #35424

Anonymous
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Goodluck with all the investigations. I hope they find something to help little Maggie soon.

June 3, 2007 at 9:43 am #35437

Anonymous
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So sorry to hear about these new changes. Try to stay positive. I know how hard/scary this is. I will keep you guys in my prayers.

June 3, 2007 at 10:21 am #35445

Anonymous
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Poor sweetie. And poor mommy. I hope and pray the doctors find a solution quickly to help her start gaining some weight. That’s good news about her higher PPI dose! I hope that is at least part of the answer. (So what dose is she on now?).

I think Heather may be right. If she’s throwing up so much that she can’t gain weight she should probably be tested for DGE and perhaps be started on some motility meds to help her keep her food down.

Please keep us posted.

June 3, 2007 at 11:19 am #35450

Anonymous
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I am so sorry to hear about everything that is going on with Maggie. Did they do a spinal tap on her due to the fever? I’ll be keeping you in my thoughts! Hope you get some answers soon!

June 3, 2007 at 12:32 pm #35454

Anonymous
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Thanks everyone for your support. I will definetly ask tomorrow about DGE. We were fortunate enough that Maggie was 29 days old the first day she was hospitalized. The hospital policy is any baby who has a fever 28 days and less gets a spinal tap. At first the dr. was we want to do a spinal tap but my gut said it was not an infection, so the dr. said we just squeeked in to get an automatic spinal tap so we could wait until the first round of urine and blood test came back and take it from there.

June 4, 2007 at 5:37 pm #35598

Anonymous
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We just got back from the dr. Good news is Miss Maggie weighs 7 pounds 7 ounces now. WOO HOO. She is in the 3% for weight and 10% for height. She has gained and/or lost in the last 5 days 10 ounces which is a lot.
He medication was upped but will not be ready until tomorrow. We go Wed to see occupational therapy at Children’s to have wedges made. We have a swallow study scheduled for the 19th and we see our dr. again on the 20th. We are also waiting for a bunch of lab test to come back.

June 4, 2007 at 6:44 pm #35600

Anonymous
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Good news about the weight gain! I’m glad to hear they upped her meds and I hope that helps.

What are the wedges for?

The swallow study is a good idea. Good luck and please keep us posted.

June 5, 2007 at 5:20 pm #35696

Anonymous
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The wedge is like the tucker sling but they make them at the hospital. The other wedge is for the car seat.
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