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Thanks girls!
You certainly gave me the confidence to do this and I am SO GLAD! This is what I sent to the doctor in my coversheet. Michelle,
I know you were going to talk to Dr. Purman about Anika’s visit yesterday and I wanted to send over some information. I wasn’t completely right when I said that I thought Anika should be on 30 mg’s of Prevacid a day but based on this information that my husband and I read more closely last night, we DO feel as though she is under-medicated and in pain.
I would appreciate you reviewing this information. It is from the Midwest Acid Reflux Children’s Institute (Marci-kids) that is affiliated with the University of Missouri. Not only do the doctors seem highly reputable but the research sites articles in The Journal of Pediatrics and the American Journal of Gastroenterology. It is based on research in children, not the information provided by the drug manufacturers.
The site that referred me to the Marci-kids site is an infant reflux website where many parents have experienced great results with a higher dosing of PPI’s. Knowing this and how reputable the attached research is, it is extremely difficult to see our child in pain when we know it can be prevented. We went through months of this with our son and feel as though he had long lasting damage because of it. It was traumatic to say the least.
We would like to propose we use our current prescription but give Anika 7.5 mg three times a day instead of twice a day. This seems to fit in the middle range of the recommended dose for Anika’s age/ weight (see the chart in the 2nd to last page). Then we will make an appointment to come in and review how that dose is working for us and at that time possibly discuss a new prescription (for insurance purposes).
Again, please review the attached information and call me. I have quite a few meetings today so if you miss me, leave a message and tell me a good time to call back. Also, if you have any questions, many parents on the infant reflux site have said that Dr. Phillips and the Marci-kids staff have spoken to their pediatricians so please call them!
Thank you.
Michelle is actually the physicians assistant that we saw yesterday. She is actually quite good (not an over-inflated ego like some doctors and she has a young child – I feel as though she listens and doesn’t judge). There was also that nurse practitioner from Children’s Hospital Gastroenterology (Detroit) that was there yesterday who also said we were “maxed out” but I’m ignoring that.
I didn’t tell them/ threaten leaving their office but that’s exactly what I will do if we have to. I’d hope that maybe Dr. Phillips could tell me the name of a pediatrician in the Detroit Metro area that would help us but yeah, if not I’ll fly Anika and I to Missouri. I’ve traveled there and back in one day on business before so I could probably get my boss to agree to let me consider it a business trip…
Whatever. I’ll let you know what happens. I already called the doctor’s office to confirm they got the fax and ask them to give it to Michelle right away.
Maxon&AnikaMom2006-10-12 9:56:35
I love your letter. Good job.
I’m keeping my fingers crossed for you and Anika.
They won’t do it!!! They said it was beyond their comfort zone and they are buying the dribble that the nurse from Children’s Hospital pediatric GI says…I’ve e-mailed Dr. Phillips asking for a pediatrician recommendation but he just e-mailed me back with what would be a proper Zegrid dose for us…
Well I guess post partem hormones and crying WILL get you someplace.
After talking with me Michelle knew that she was giving me a dead end… she KNEW that the GI would not do anything different. So, she went to the main pediatrician at the office and a group of them discussed it and he agreed to let us try the 7.5 mg three times a day but that he wanted us back in ten days to review it. PERFECT. That’s 10/24 and I’m off that day with other appointments!
I KNOW! I’m so excited! Who knows if she really knew I was crying but I was SOBBING after I hung up with her. She had to know I was upset and I did play the “seeing your child in pain” card because I know she has a son around 2 years old (we saw them at the fair one day last spring).
This morning I told my boss what was going on and she told me to find a new pediatrician. When she walked up and saw me sobbing she said we would schedule a trip to St.Louis that required an overnight stay and that her dh (now retired) would go along and watch Anika for whatever 2 hour meeting we say we needed in St. Louis… I’ve got a GREAT boss!
Now I’m crying in HAPPINESS because I just *know* it is going to work for her! I’m actually going to start it today! See… it seemed as though one 15 mg dose was giving us slightly less traumatic of an evening than the two 7.5’s so that’s what I gave her this AM. And I also pushed her to go until 5:30 before she gets the dose. But now when I pick her up I’ll give her another 7.5!
That is so cool – I said a little prayer after I read your first post about them not wanting to go along with what you asked and it must have helped
. I was too upset to type a response at that point. Why won’t they listen? Babies SHOULDN’T be in pain. I personally believe that doctors who allow babies to be in pain should be charged with abuse. Maybe that is harsh but it is how I feel. It is so insensitive and cruel to the littlest, most innocent humans. Hopefully this will be the magical solution for you and Anika. I’ll get praying again 
Keep thinking positive!!Robin
– -more tears of happiness… THANK YOU for the prayer Robin! I’m sure it helped. 
Just you getting mad in support of us helps!I’m so happy for you!! The proper dose of Prevacid was the miracle cure for Myles. I sure hope it will be for your little sweetie, too.Let us all know how she’s doing on the new dose.
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