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Raising Special Needs Kids Raising Special Needs Kids

Nervous...**updated**

Posted by on Dec. 4, 2012 at 12:02 PM
  • 15 Replies
1 mom liked this
Today I have an appointment with Lion's neurologist, (the ONLY doctor that is backing up his mom in all this), so the guardian ad litem is coming too.... And I'm going to be firmly, but politely requesting that we begin weaning him off of some of his medications. In my opinion, he could function a LOT better if he was so severely medicated. He's on high doses of Keppra and Depakote, but turns out hasn't had a seizure since 2008! (Another thing I was lied to about) and his last 4 EEGs came back clean- so WHY keep him on those AWFUL meds?? Elijah could barely function when he was on multiple seizure meds! :(

He's also on Prozac?? He's the LEAST depressed kid I've ever met!

And the baclofen (for spasticity) is making him so tired and not really helping, so I'm going to ask about Botox instead...

He also doesn't heal when he gets sores on his feet, they just stay weeping and open. :( so I need to ask about that and about his edema...

Anyways, with MY kid, I would be putting my foot down and insisting that we change this!! But, I don't really know how much power I have to dig my heals in, and this doctor's ego is at risk since admitting to prescribing unnecessary meds to a mom who's accused of munchausen by proxy.... Yikes, so I have to be really polite and calm and pragmatic and help him see this as his idea... Lol (ugh, neurologists!)

*****UPDATE

It went GREAT. He was very receptive and respectful of my experience with my own son's neurological problems. He explained Lion's diagnoses in great detail and explained things I needed to look out for and things that were within the range of normal. He listened to all of my concerns and answered all of my questions, and agreed to stop one medication today, and start weaning another by the end of the week, (after bloodwork comes back)! We will revisit a third medication in 2 months that I would like to try weaning, and I got a referral to the rehab team to discuss stopping the baclofen and trying a less systemic approach to his tone issues.

I feel like we accomplished a LOT! I've had bigger fights than that to get my son off just one med. :)

The GAL said I was amazing (which made me feel good. Lol)

YAY
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by on Dec. 4, 2012 at 12:02 PM
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Replies (1-10):
natesmom1228
by on Dec. 4, 2012 at 12:29 PM

Good luck!! Keep us informed.

I am feeling the same way about Nathan being on Clondine. I am going to ask that it be reduced to one pill a night instead of 2. I just want to see if it makes a difference. There is no harm in voicing our opinions.

mandee1503
by Amanda on Dec. 4, 2012 at 12:33 PM
Good luck! Let us know how it goes!
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sammygrl77
by on Dec. 4, 2012 at 1:05 PM
Good luck! I think you can dig your heels in for Lion. He's lucky to have you on his side.
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willysmama
by on Dec. 4, 2012 at 2:31 PM

Good Luck!

mandee1503
by Amanda on Dec. 4, 2012 at 4:26 PM

Woo hoo! That's great the dr was so receptive of your concerns!

jjamom
by Michele on Dec. 4, 2012 at 4:36 PM

Awesome!  I am so glad Lion has you in his life!

sammygrl77
by on Dec. 4, 2012 at 5:50 PM
Wonderful!!
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sweetmissy_05
by Member on Dec. 4, 2012 at 5:50 PM

Glad it went well!!

willysmama
by on Dec. 4, 2012 at 8:36 PM

wonderful!


gma12.1
by on Dec. 4, 2012 at 10:14 PM

 Fantastic! Wonderful news.

My Second time around & loving it!
boy n girl     toddler girlLina

The Twins

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