Sinemet ?

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

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Sinemet ?

Postby joeysmom » Fri Sep 21, 2007 1:12 pm

Hi all, my son Joey, has been dx with severe periodic leg movement disorder. He had a sleep study last week because of his poor sleeping. We were thinking apnea, but that was not the case. A little background: He has CM, SM with decompression 12/06. My research on PLMD shows that it can go hand and hand with both CM and SM and is related to restless legs syndrome (RLS) however he does not have this as of yet. So my question is, has any one had their child on Sinemet? I am more than a bit concerned since this drug messes with the chemicals of the brain (mainly raising the dopamine levels). It is a drug used to treat Parkinsons. I am concerned because I have not found much research on this drug in children. Our NL is concerned about his lack of sleep and said that his sleep study was alarming due to the number of movements and number of arousal episodes. I am so Thankful that it isn't apnea, but this is a bit concerning as well. Any advice would be helpful.
Tonya
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Postby willsmom » Sun Sep 23, 2007 12:31 pm

I would be concerned and reluctant to put my child on a drug that hasn't been tested much on children. We had a horrible experience about 5 years ao when we tried Paxil on one of our children to help with his depression. This was before the news came out that many of these antidepressants were not tested on kids. Anyway, long story short, he began to go nuts with horrible symptoms, terrible behavioral episodes, etc. We almost had to put him away until we all figured out it was the Paxil, not the depression causing all of this.

So, my opinion is if a drug has not been tested and approved for use in children, no way am I going to let my child take it!
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Postby joeysmom » Mon Sep 24, 2007 3:37 pm

Willsmom,
Thank you for your reply. I agree that medications are scary and I am sorry to hear about your son's reaction. I just don't know what to do, here. My son needs to sleep, yet at what cost? I know his body can't do the healing it needs to do unless he is getting good sleep. We know he isn't. I guess I just want that magic ball to tell me what to do...
Thanks for listening.
Tonya
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Location: DFW, Texas

Postby willsmom » Mon Sep 24, 2007 3:55 pm

Hi Tonya. I'm sorry you are faced with such a horrible dilemma. Have you tried contacting the manufacturer of the drug? Are there no other possible alternatives to this one? I will keep you both in my prayers.

Yvette
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Postby joeysmom » Mon Sep 24, 2007 4:13 pm

Yvette,
I have a call into the nl to try to get something else. I have done some research and I think we might try 5-HTP since it also raises dopamine levels (which is what sinemet does). He had to come home from school today due to leg pain. It started Friday morning and has progressively gotten worse. We started this drug on Thursday night. I don't believe in coincidence, so I don't think I will give it to him tonight. I have really been praying for some answers here.
I didn't think of calling the drug maker. If the doctor says there is no other alternative, then I will do that. I am thinking we have some other options since I have done some research now. I just wish I had never heard of chiari or syringomyelia or now, PLMD!!
Thanks again.
Tonya
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Location: DFW, Texas

Postby willsmom » Mon Sep 24, 2007 5:52 pm

I totally understand about wishing you had never heard the word Chiari! My 14 yr. old son was only diagnosed about 2 weeks ago. We see our neurosurgeon for the first time tomorrow. Will has a 10 mm wide syrinx that goes from C1 to at least T4. The MRI didn't go below that level b/c it was only a cervical MRI. He also has a 7-8 mm CM.

The heart break in this is that Will is a football player who just started high school. And high school football is a HUGE deal here in Texas. We've been told he can never play again b/c the risk of paralysis is too high. Will is beyond devastated!

He said he has prayed more in the past week than he ever has in his life. When I asked him what he was praying for he said that he can play football again. Broke my heart.

But we are lucky the docs found it early. If he had continued to play and gotten hit really hard . . . Well, you know what could have happened.

Good luck, Tonya. Keep me informed!

Yvette
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Postby joeysmom » Mon Sep 24, 2007 6:55 pm

Yvette,
My son had to give up soccer. Not so much for the injury risk, since he is still young, but because he does not have the endurance or energy to play. I can't even imagine what your son is going through because this has been so hard for my kido. He has gotten so sad to see his 2 brothers play. It must be so hard at 14, and yes, I know about football in Texas! I just updated my profile to show that, I, too, live in the Dallas area. My son had his surgery at Cook Children's last December.
I know my son (and me too) do a lot of praying. I pray for pain-free days for these boys! I am so saddened to hear how large you son's sm is. My son has 3 syringes/syrinxes but his are thin, the widest being only 4mm. We are so fortunate there. His CM was pretty bad so I think we caught it all very early. It is so stressful though, isn't it?
I will pray you have a wonderful and informative meeting with the NS tomorrow. Keep us posted.
Tonya
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Location: DFW, Texas

Postby willsmom » Mon Sep 24, 2007 7:27 pm

Ah! A fellow Texan! You know, I feel really lucky that we live in a large metroplex area where we can get access to the best doctors! Just think if we lived in some small town.

We live in Plano. You?

Take care, Tonya, and I'll let you know how it goes tomorrow.

Yvette
Yvette
This too shall pass.
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Postby Beverley » Sun Feb 24, 2008 12:34 am

I take Sinemet for another rare condition called Dopa-Responsive Dystonia (DRD). DRD is different than Parkinson in that the Muscle cramp, twists, spasms, etc respond to the Dopamine in relaxing and moving correctly. DRD is a neuro-transmitter condition where the message from say the brain to feet gets mixed up and the muscle does not react as it should. Many times a trial of sinemet is tried as the most effective way of determiing if a child has DRD. Unlike Parkinsions disease people with DRD can continue to take sinemet for many years with good a affect.

I have just recently found out that I also have CM1 and just had decompress surgery on the 8th of February 08 at the age of 44. So I can tell you from personal experience that you can have both CM and Dystonia. It is probably not the norm but it can happen. Having this form of dystonia is probably alot better than the other types that do not respond to Dopamine because the other types can be very hard to treat.

If you want more information on DRD check out the web site DRDcentral.com. There a quite a few children on this site that have DRD and some adults that have had it since they were children. Of late the site has seemed slow but the are quite a few people on there that can answer questions.

Beverley
Decompression Surgery Feb 8, 2008 w/Duraplasty & Laminectomy C-1&2
Cervical Disc Fusion 11/08 C5&6/6&7- Mild Disc Bulge L2-Focal Hemangioma
L2-L5-Lipoma 3mm L4&L5-Disc Bulge T11&T12-DDD
Dopa-Responsive Dystonia (DRD)
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