Wednesday, October 13, 2010

just say no...

Why do I get so upset and nervous about doctors? Friday is Maddie’s checkup with her doctors…and I have been doing A LOT of lobbing to get Maddie off her most recent addition of medications…so I have my speech ready…and I have a power outfit…and I feel like I am presenting to my boss for a raise! But it is a doctor…a person that should be listening to me…not the other way around…I should not be upset about this…I should just be able to take Maddie off this medication…because I feel the risks out way the benefits…but really this is NOT the way it works…I am not the only advocate for my Maddie…that is what is different about raising my Maddie…everything and anything we do …is a group decision…with doctors, therapists and social workers…and believe me I am SO thankful to have the team I have for my girl…but this time I just want to say no…no to the Reglan…the research and studies I have read have say the longer a child is on it…more likely the side effects will occur…this medication is for short term usage…but that is not he impression I am getting from Maddie’s doctor…so I have been talking with Chad and he wants to keep my feelings out and only good hard data in! He is the scholar in the family! I just want to be honest…I cannot handle another diagnosis of this magnitude…these are the side effects and this medication that has a black box warning…Serious neurologic Reglan drug side effects in children include:
• Tardive dystonia
• cervical dystonia (torticollis)
• Parkinsonian symptoms
• Akathisia
• neuroleptic malignant syndrome
• tardive dyskinesia
So again would you give this to your child?…Maddie is still taking about an hour to eat and is still only eating between 2 to 3 containers of Gerber puree baby food…she intensely dislikes any cereal with her food…so this is where we are at…scared to say to much to the doctor...I do not want another swallow study….and REALLY do not want a higher dosage of this medication…so lets face it … Maddie is not starving…she does not have teeth…they kind of go with the whole eating food thing…I think!

4 comments:

  1. I hope things go well for you on Friday and you can take Maddie off that medication if thats what you think is best...Dont be afraid to tell the Doctors what you think either! Good luck :)

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  2. Mama Gut is a powerful tool. Use it. Own it. Love you.

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  3. Praying you can talk to the doctors clearly and that they will really hear your concerns, and that your "team" can come to a good decision.

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  4. I think the food/meds thing is a hard one. I feel the same about Reglan. Heck Abby is on prevacid and we're uncomfortable about her being on that longterm- so I understand. Maybe ask for a second opinion? Good luck!

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