what’s next

[Anonymous]

so, we had our upper gi with maggie today. nothing. at least that they could see. she started to flux and choke in the hospital parking lot but couldn’t do it on the table *sigh* should have known. Cecilia didn’t do it either. am not sure what the next step is. she hardly slept at all today..was uncomfortable and hollering no matter where she was placed (in my arms, in bed, in swing, etc). After about hrs she passed out with hubby rocking her. I was crying in the shower. for cecilia, the switch to nutramigen and a month on zantac fixed most of her problems. she would only have a few “episodes” after that. I’m not sure what is going on with maggie now. Is is really just reflux? Maybe she has a slow bowel..she only goes every three to four days and screams for hours beforehand. I am going to request things from the ped, but am not sure all that I should ask for. Any suggestions? I am thinking a lower scope would be a good idea to rule that out. I just don’t want to throw her on reglan if I don’t have to and that is all that the ped here in small town america seems to know to do…zantac then reglan. but even he is loathe to put her on it. I am going to mention the ppi (any one recommend one over the other?) and take the dosing chart in with me. ugh..just get so tired of walking him thru all this. It was bad enough doing it for Cecilia’s allergies. How can I find out if maybe Maggie has allergies severe enough for something other than alimentum? I even asked the ped if there was something to try after that (meaning neocate/elacare) and he said no. My dad wants me to get a second opinion, but there is no one else in town and we aren’t moving until some time in Feb. *sigh* I’d just rather have all the testing done I can to make sure we didn’t miss something before they stick her under the umbrella diagnosis of “colic” w/some reflux. Thanks for any ideas or just letting me vent.

[Anonymous]

I live in small town America, too and when I was going through this nightmare with Myles I was ready to drive 5 hours to take him to a specialist. However, with much persistance I was finally able to convince his doctor (our family doc) to put Myles on the marci-kids recommended dose of Prevacid, and within 10 days he was a new baby!!

If you don’t think you can work with this GI, maybe your family doctor would be helpful. Either way (family doc, or GI) have you tried printing the http://www.marci-kids.com information on PPI dosing to share with them? That’s what finally convinced our family doctor to try the high dose.

Also you can order Neocate from a pharmacy and pay out of pocket for it without a prescription. It’s very expensive but perhaps if you tried it and it worked you could talk the doctor into a prescription, or just ask him for one now. Maybe he’s never heard of it (why, I don’t know, but these docs never cease to amaze me!).

The slow bowel problem could be due to DGE. Have you asked for a test for that? And there are other meds for DGE besides Reglan…..Erythromyocin and I think Motililium. Maybe do some research on these and if you feel more comfortable with one of them you can ask to try it instead of Reglan.

Constipation can also be a symptom of MSPI…..so a specialty formula like Neocate may help with that.

I know it’s enough to make your head spin. I remember how horrible it was trying to figure out what was wrong with Myles. I hope you find answers and solutions soon.

[Anonymous]

sarah, we drive 2 1/2 hours to see our ped gi. it is a pain, but it sure made a difference.

[Anonymous]

I truly like our ped..I was so prepared to go in swinging (since I remembered our previous ped giving me the run around with cecilia) and lo and behold, they called this morning to say that he wants us to try the neocate for two/three weeks. I was surprised. Knowing that I didn’t mention it at the last appt let’s me know that he is doing his homework! 🙂 I am hoping that this works (since allergies seem to be the main reason for flux in the family). I will be keeping up the zantac for the two weeks also (good idea?) and if that doesn’t help or it does but not 100%, I’m going to ask for the PPI. keeping my fingers crossed. will be hunting about for info on neocate..thanks so much!
kevieb-nine kiddies? that’s great! I want five and hubby thinks I am nuts!

[Anonymous]

Good news! I hope the Neocate helps. It’s must feel great to have reason to trust your doctor. It does sound like he’s doing his homework like you said.

Good luck and keep us posted.

[Anonymous]

If you’ve already started on Neocate, you might have already determined this yourself, but Neocate can cause constipation. Since Maggie already has slow bowel issues, you might want to talk to your ped about ways to proactively keep her regular – juice? meds? something else?

Dianne

[Author]

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