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So Frustrating!

Posted by on Feb. 9, 2011 at 2:21 PM
mel
  • 8 Replies

Another f/u with GI and they continue to push the meds(Ciproheptadine). They state its not an option. I chose not to give her pediasure/heavy creamer/extra butter. (extreme family histrory super morbid obesity{hubby was 400lb+ MIL 600lb+}  my personal decision that it would be potentially setting her up for failure) She's now 17.12lb   28 3/4 inches. She has to go back in 2 months, pedi is suportive that wtv me and hubby are comfortable with(concening the meds) to do, but she also said we have to continue going to GI until they discharge her. I'm worried if we go back in two months and she hasn't been on the meds they may open a cps case? I just want to cry! We think shes fine meeting all her milestones, were just stuck between a rock and a hard place.

by on Feb. 9, 2011 at 2:21 PM
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Replies (1-8):
gdiamante
by Gina on Feb. 9, 2011 at 4:13 PM

Seek out kittymeri. She's the expert on this; she HAD a CPS case opened. She will tell you to do whatever they say. ANd if CPS really is that much a concern, I'm inclined to agree. If the meds DON'T work, at least they cannot make that complaint.

melindabelcher
by mel on Feb. 10, 2011 at 8:20 AM

They haven't mentioned CPS yet and theres no other contributing factors. Overall she's gained around 2lbs in 6 months. 1 lb every 3 months. I'm seriously thinking about canceling the appointment and just not going back. I hope they won't notice. Seing pedi for 15month physical today and hopefully she agrees. How do I find someone?

catholicmamamia
by on Feb. 11, 2011 at 2:59 AM

If you feel this GI is not giving good medical advice, would it be possible for your daughter to see a different doctor? That way you do not have to choose medical treatment that you feel is not in your child's best interest, and a CPS case should not be opened because you are merely seeking a second opinion and not withholding medical care.


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melindabelcher
by mel on Feb. 11, 2011 at 11:35 AM

Thank you thats a great idea, I had to cancel her physical yesterday because i was stuck in trafic(love Boston grrr) however i rescheduled it for tuesday and i'll ask the dr which other hospital she would like her to be seen by. I think last time we were having issues with childrens hospital GI the pedi mentioned trying Mass General if the issues continued.

tabi_cat1023
by Group Admin -Tabitha on Feb. 11, 2011 at 11:52 AM

I had this drug given to me for my guy too, though he was not struggling quite as bad you are LO with weight.  I totally refused because of side effects, I informed the doctor that this was why.  This drug was not approved by the FDA for use to increase appetitie its for allergies.  So they can not call CPS on you for  not using it against labeled use.  Well they can try but when you show that its not FDA approved for appetite use but for allergies so they are telling you to use a drug for one side effect which in turn means the others could happen too...they should back off. CPS scares the crap out of me!! They really do.  But the side effects of this drug scare me too, so I would make sure the doctors know I am doing everything in my power to help my child...going to appts allowing testing, doing other things to raise weight, etc.

Start keeping a feeding journal, how much and when your LO eats that way you can prove to anyone that even before asked about it you KNOW how much your child is eatting and when.

melindabelcher
by mel on Feb. 11, 2011 at 12:01 PM

Wow! good point! I new it was an off label use. But i didn't connect that would be ammo for me in case of a cps case. I also am terrified of cps i've heard horror stories about them! I've been advised by many people to not give her the meds including 3 pharmacists. I just want to click my heels three times and make all the dr drama go away.

tabi_cat1023
by Group Admin -Tabitha on Feb. 11, 2011 at 12:23 PM

I would medicate if it came down to lose my child or medicate....then if my child had a side effect I would sue both the doctors and CPS

melindabelcher
by mel on Feb. 11, 2011 at 1:03 PM

I definetly agree I would never push one issue until cps took my child then i would have loads of issues that i would have NO say on.

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