Neurontin Experiences?

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Neurontin Experiences?

Postby JenandLuli » Wed Oct 20, 2010 1:11 am

HI All!
Well, Luli is on Neurontin now... she was happy for 2 days then it was back like before. So they have upped her dose. I'm not seeing a change yet... but I'm not sure how long it takes to start working. She did say that she felt hot after the last 2 doses. Not sure if that is a side effect or not.

Luli has been having alot of pain lately... and a few more bladder issues. :cry:

Her NS at Childrens wants to wait until Jan get another MRI and see if it is getting worse. And then we will go from there... I hope we can get thru these 3 months!
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Re: Neurontin Experiences?

Postby razzle » Wed Oct 20, 2010 5:25 am

teh only thing I experienced is weight gain . so I quit taking
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Neurontin Experiences?

Postby BeThereMom » Wed Oct 20, 2010 4:06 pm

It takes up to 2 weeks to build up and feel the effects of Neurotin also known as Gabopentin as we recently just found out. Good to know when docs talk about pain meds.
Cindy
Mom of 11yr. old daughter, Elaina
idiopathic syringomyelia, large syrinx at t5-t7
permanent shunt since 12-22-09
My girl is one tough cookie, people believe her smile through the pain.
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Re: Neurontin Experiences?

Postby youngwife » Thu Oct 21, 2010 12:35 am

Rachael has seen improvement in her nerve pain...like in her shoulders and maybe neck. But her head pain (Chiari- bone like pain) is not helped with Neurontin. So, I guess it depends on what type of pain she is having.

I am so very sorry that you'all will have to wait until January to move forward!! ((((HUGS))))

Prayers for you all,

Rebecca
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: Neurontin Experiences?

Postby JenandLuli » Sat Oct 23, 2010 12:57 am

Thank you for your responses. :-) I appreciate you all taking your time to give me any kind of real life experiences!!! :D

Luli's incontinence is getting worse... and it seems to be very fast! She has had daily accidents this week, even in her sleep, and since surgery she hasn't had any prior to this month. :shock:

Her Neuro and NS said we should call her NS at childrens... so I will be on monday. :cry:
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Re: Neurontin Experiences?

Postby drummergrl » Mon Oct 25, 2010 5:00 pm

I too feel hot after taking Neurontin- I get flushed and just feel uncomfortably warm for an hour or so after I take it. Other than that, though, I've had no major issues.

Hopefully you can get her in to see her doctor soon- I know how frustrating the wait can be. By the way, you have a beautiful family!
CM, SM, Scoliosis
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