I'm just so upset…

[Anonymous]

I know I already posted something in this category, but I just feel so absolutely upset. I’m confused, angry, sad, tired… I’m waiting to bring my son to the GI specialist. That appointment is April 9th! After that appointment, I’m sure it’ll be another good while before we can do the tests. Then, IF he prescribes a PPI, it will take more time to start really working. I wish the pediatrician would have just prescribed a PPI, but the GI specialist told him it would mess up the PH levels for the testing. He is currently on Zantac – wouldn’t that mess up the levels anyway?!

He’s just not doing well. Our switch to Nutrimagen seemed to make him feel 50% better the first few days. Now, his stools are a little more normal than the green diarrhea he was having (now they are greenish/yellow paste) but he no longer feels 50% better. Ugh. Last night, and so far today he has spent most of his time grunting and squeezing and shrieking in sudden pain for no reason. He was able to sort of sleep in his swing last night. I “slept” on the couch next to him and I could hear him refluxing ALL NIGHT LONG!!! He doesn’t love the formula, and he has started to only want 2 or so ounces instead of 4. I’m not too concerned about his weight (he has gained a ton!!), but I’m SO concerned about the pain, his esophagus, his stomach, and our sleep and sanity.

Like an earlier post, I too feel intensely guilty about how my three year old spends the day watching tv. I’m always shushing her or getting upset with her since I’m so on the edge. I just want to have a NORMAL experience with my sweet baby and toddler. NORMAL can include some crying, bad days, etc…but not all the time! It is really wearing on me.

How am I supposed to just sit and watch my son in pain?! All this when I am pretty sure a simple prescription could solve everything!!!!!!!!! I know you all say to fight for it, etc. I feel like I’ve made it very clear, brought in the paper work, etc. I’m not sure what else I can do. I mean, I can’t pay $200 each time I go sample a doctor to see if he’ll prescribe the right meds.

And even when we do get into the doctors, my gut tells me they’re going to try and prescribe a low dose, or something difficult to administer to my almost 5 week old. I just want to try the correct dose of Zegerid. I wish I had a family doctor, or ANYBODY! who would prescribe the meds. I’m usually into trying the natural route and I try to buy organic produce, etc. But for this, I am all about modern medicine. Here in New York City, all the doctors seem to have the same mindset… we don’t give medicine to babies…if we do it’s because it’s FDA approved for babies…how dare you try to tell me anything different because I know everything and here in New York we know ALL!!

UGH!

We’re moving to southern California at the end of May. It will be hard to deal with finding a new doctor, etc…but I believe it will be easier to find a willing doctor there. I just can’t wait that long. I have contemplated flying there (my parents live there too) to go to my parent’s family doctor and get a prescription. I would have to ask him to check out Marci-kids first and let me know if he is even willing to prescribe those doses before I do that. It is so expensive. We’ll be there soon, too….so it is so frustrating. I wish I had frequent flyer miles, or just better doctors.

I don’t know if he has a protein intollerance either. It seems like he might because even with the Nutrimagen he has a lot of stomach issues. I just don’t know what to do or what exactly to fight for.

WHAT SHOULD I DO?!?!?! I can’t just sit around. I have to do SOMETHING!

[Anonymous]

I’m sorry. I know how difficult it is to play the waiting game while you KNOW your baby is in pain, can’t eat well, can’t sleep well, etc. And I understand how difficult it is with an older child too, and the guilty feelings to go along with having to give so much of your attention to the younger sibling.

I had a thought while reading another post. There is a medication called Carafate which essentially coats any irritated or damaged areas in the esophagus and stomach to help protect it from stomach acid, and help it to heal a bit. This is usually only used short-term in infants (for a few weeks) until a PPI can take effect, and it can help with the pain. I know you said the doctor won’t prescribe a PPI yet because they don’t want to mess up their tests (I think that’s rediculous!) but Carafate shouldn’t affect their testing at all, so maybe it would be something they could consider in the meantime??

For infants and children, the recommended dosage of Carafate is 40-80 mg/kg/day divided into 4 daily doses. It can reduce the absorption of other medications, so it is recommended to space it 2 hours from any other meds.

I think it is worth a try perhaps giving your doc a call and see if they would prescribe this to give your little guy (and you) some relief while waiting to see the ped GI.

Let me know if you have any questions (I’m a pharmacist).

[Anonymous]

I know exactly how you feel. My daughter had the same problems when she was that small. I wish I could tell you that the medicines are miraculous, but it takes some time for the esophagus to heal. Have you tried using some Mylanta Cherry Supreme), it was our life saver for awhile. It can cause diarrhea or constipation. All three of my kids had reflux, my oldest one was tough because I didn’t know anything about it. There is 9 years difference between the first two kids. The second one would get constipated if we used to much Mylanta. The youngest is my daughter, and she gets diarrhea. I still use it for them when they have discomfort.

You might also try thickening the formula a little. I still have to thicken my daughters(she is almost 1). I use the Nature’s goodness brand at walmart, because she doesn’t tolerate Gerber at all.

I know it is hard, but hang in there. Just when you don’t think you can handle it, somewhere deep down you find the strength. My two year old lets me know when he needs his time. Most of the time his dad takes care of him, and I take care of her. My oldest (12 years old) has proven to be a HUGE help.

Just stand your ground with your doctor, if you believe he needs medicine then push until you get some. What you might do is when changing doctors you can contact the offices, and request an interview appt. Some docs will cut you a break on office visits for that. I know that is how we found my kids doctor. He is a very good doctor. I don’t always agree with him, but he will at least listen to us.

I wish you the best of luck.

[hellbennt]

what tests? edoscopy? ph probe? if it’s a Upper GI then it 1) won’t necessarily even show reflux & 2) has nothing to do w/ ph level

I would ask the dr WHAT TESTS?

can you fax your parents’ doctor the marci-kids info? maybe have a phone consulation?

it’s so hard!!!

[Author]

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