Miracle Drug, Methylphenadate (Ritalin)

involves demyelination in the spinal cord and in the brain. The demyelination in the brain is different than a demyelinating attack from MS; the lesions are scattered and do not appear in the same pattern as those from an MS attack.

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Miracle Drug, Methylphenadate (Ritalin)

Postby Trentsmom » Sat Jan 17, 2009 7:37 am

My 12 month old son had an acute episode on ADEM almost two years ago. (our full story is somewhere in this forum) As a result of this episode he completely regressed to a Pre-newborn state. Severe Neuro-motor regression. Over the last 24 months he has steadily regained his lost milestones. He will be three next week. He is still about 18-24 months behind in all areas of development. Gross motor, fine motor. He understands what we say but has not developed speech. Our neuro in the US last week told us that he will most likely have life long physical and cognative impairments. We recently returned from a trip to Mexico from a visit with our second opinion Neuro. He put my son on a very low dose of Methylphenadate. 5mg a day. All I can say is WOW! We have seen dramatic, profound improvements!!! Physical and cognative. The Neuro had also mentioned Amoxitine and Piracetam were other choices for treatment. He predicts that he will keep him on it for maybe a year if all continues to go well. When I told the Neuro in the US about his recent developments she dismissed it as anedotal and referred us on the the Neurodevelopmental/birthdefects clinic for some more PT. His Opthalmologist suggested that his recent improvements would have happened anyway and said, where are the studies? Yeah! Where are the studies?? Just because something has not been studied yet in the US does not mean it does not work. Methyliphenadate is a Central Nervous Stimulant. His DX is a demylinating disease of the central nervous system. It's not a stretch of the imagination that a CNS could help. Needless to say our Neurologist in Mexico is now our first opinion. He said please trust me. I have treated many cases this way and they have responded like your sons. In six months you will be amazed. Its been six weeks and I'm already blown away. I am sharing this in hopes that it can help others that are recovering from ADEM. Although, if you live in the US I think you will be hard pressed to find a Doctor to support you in with this course of treatment. Has anyone else used a CNS to stimulate recovery??

Alison, Trents mom
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Re: Miracle Drug, Methylphenadate (Ritalin)

Postby Shirley » Sat Jan 17, 2009 1:52 pm

Hello trentsmom,
It's a funny old world isn't it!! If your Neuro in the the US hasn't tried it, they hate others giving the treatment a go. When you are at your wits end, looking at your son every day and seeing his lack of improvement, you'll give anything a try, I know I would.
Go with your instincts, if in your heart you know you are following the right path to getting your son back, go for it.
Keep us in the loop so we can follow Trents journey, back to us.

Cheers
Keep well



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Re: Miracle Drug, Methylphenadate (Ritalin)

Postby Trentsmom » Sun Jan 18, 2009 10:56 am

Thank you for the words of support. One of the important things I've learned from this journey is to trust my instincts. I see you are from New Zealand. We also have been going for treatments called Neurolink developed by Dr Philips in New Zealand. We continue to go based on results and also it is an opportunity to look at this from more than just an alopathic medical perspective. My hats off to you New Zealanders for some fresh perspective.

About our former Neuro in the US. She actually politely let us go...."come back and see me in a year." She practiced Neurology in Brazil before coming to the US. When I asked if she was familiar with this course of treatment (methylphenadate) she said that it was prescribed in Brazil but had not seen the results as it was to expensive for patients to use. Therefore.....it didn't work and she could/would not write a perscription for it. Logical????

As for the studies. I think there is more money/customers in using it for ADHD than those with a brain injury. I doubt there will every be studies. Not enough customers!

We are so fortunate that we have crossed paths with this other Neurologist that looks at our son like one of his own. He is looking for the best possible outcome. Unfortunately, his office is 3000 miles away. It is so tragic that there is not some collaboration with the doctors here. So for now, we know that we need to find a way to get back and forth twice a year for consults and follow up. I have faith. This child has a guardian angel, I sure of it.

Alison- Trents mom
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Re: Miracle Drug, Methylphenadate (Ritalin)

Postby Shirley » Sun Jan 18, 2009 3:25 pm

Hi Alison,
Try and get there twice a year, it sounds as tho you have a lot of faith in this Neuro. How is Trent doing?
I'm 5.5yrs post onset, and it's really only been in the last months that my bowel and bladder issues are managable. I work 3 days a week drawing blood for a community lab. It's extremely busy and I find 8hrs on my feet extremely tiring. It makes me feel like giving up. I have a son and family that live in th UK, so that keeps me working.

Cheers Alison
Keep well



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Re: Miracle Drug, Methylphenadate (Ritalin)

Postby tkeys1 » Thu Apr 16, 2009 9:46 am

I was recently diagnosed with ADEM (Feb. of this year). My neurologist just prescribed me to Provigil, another stimulant, last week. It has been great and made so many of my symptoms diminished. My mom is a nurse and a big supporter of stimulants for ADEM now.
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Re: Miracle Drug, Methylphenadate (Ritalin)

Postby Jenny Hill » Fri May 22, 2009 1:27 pm

Hi,

Are Ritalin and Provigil for fatigue. My Neurologist didn't prescibe my anything. It wasn't until I was referred to a Neurophysio that I got put on Amantadine. I used to take 2 x100mg tablets a day but it has since been increased to 4x 100mg's a day. Unfortunately though I am still extremely fatigued.
I just don't know whether to stick with them or see if I can try something else.

Jenny
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Re: Miracle Drug, Methylphenadate (Ritalin)

Postby tkeys » Sun Jun 14, 2009 9:49 am

I am on 200 mg of Provigil twice a day. It is used a lot for fatigue in MS patients and works really well. I was actually started on it because I was having cataplexia (moment where I lost muscle tone) because my brain stem was affected and it also happens in narcalepsy. I have had great effects with this medicine. When I started it, I was so tired, having loss of muscle tone, forcing me to use a walker, and having severe muscle spasms. I can't attribute all my recover to it, but in the passed two months, I am walking independently, no muscle spasms or cataplexia, not taking naps frequently and even driving a bit. It has worked miracles for me. If you want anymore info on it, let me know. I'm a big advocate now!!
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Re: Miracle Drug, Methylphenadate (Ritalin)

Postby Trentsmom » Tue Jun 30, 2009 5:14 am

Wow, I am so excited that there are others out there that have tried this. Adults that can actually describe to me what it is like. Trent is now three and a half, and has not expressive language so he can not tell me what the Methylphenadate does for him. Even if he could talk, I don't think he could describe what it is. He has now been on 5mg extended release 1 time a day for 6 months. He also started a developmental pre-school in late January. His balance and co-ordination have improved tremendously. He can now go up four or five stairs, upright. And come down one or two, upright. It is scary to watch....but I've got to let him try. He can now race around on various riding toys. We are working on pedaling. Before he could barely stay on without falling off so pedaling was not even an option. He gets the motion of pedaling but does not have strength or stamina to follow through or continue for more than one round. He has even less hand and arm strength. He cannot manipulate playdoe. I think the Meth has increased his concentration. In this last month he is starting to say "words". He understands everything we say. He has some signs but gets confused which ones to use.

We fly back to Mexico in August for a check up. Lets see what the good Neuro will do. There was talk of taking him off seizure meds and switching him to Piracitam a nootropil. Not USDA approved ,but not illegal either. We would have to bring it in from Mexico or order it on the internet. He has not had any side effects from the methylphandate. Maybe he will just stick with it. If it ain't broke...don't fix it.

I'll keep ya'll informed

Alison
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Re: Miracle Drug, Methylphenadate (Ritalin)

Postby tkeys » Wed Jul 01, 2009 7:09 pm

Trents Mom,
My neuro had mentioned ritalin, but said Provigil actually works on a specific part of the brain not like a regular stimulant that just gives your more energy or concentration, it apparently helps your brain function in other ways better. I'm obviously not sure how to explain it, but I'm sure a neurologist could. I'm not sure if it's used for children. Just an idea :) I hope all goes well in Mexico and he keeps up his great progress! God bless!
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Re: Miracle Drug, Methylphenadate (Ritalin)

Postby Trentsmom » Wed Aug 05, 2009 7:09 am

We leave for Mexico next weekfor our 6, now 9 month check in. I will ask him about the Provenil. He started on Metadate CD just one month before his third birthday. It is not approved for children under three. It also is an extended release. Not all brands do. We also have seizure meds to contend with. I will have my list of questions for sure. I am usually much more excited about the progress than he is. We are so grateful for even the tiniest improvement. The nice thing is, is that he is realistic and positive.

It has been so helpful to hear you all describe your experience with ADEM. It helps me monitor progress and understand his fatigue. I have many more questions. Perhaps I should start a new post. Sensory awareness, hot/cold, wet/dry, vision, task sequencing.

My best to you all. Please keep sharing

Alison
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Re: Miracle Drug, Methylphenadate (Ritalin)

Postby Trentsmom » Fri Aug 28, 2009 5:27 am

Well, we just returned from Mexico for another EEG and Neuro follow up. We now have three EEG's about nine months apart to document recovery. In the last nine months since Trent started on the Metadate CD his overall brain activity has more than doubled. He went from 2-3 waves per second to 7. The hemispheres are syncronized and organized like never before. Hurray! We are on the right path. We have not had any seizures or side effects from this combination of meds. An EEG is such a great tool. I don't know why Doc's here do not utilize them more. I had better not get started on that subject. Trent will remain on the same dose for the next 6-9 month, until the next follow-up. Also in the new plan. Neuromuscular electrical stimulation for his arms and hands. Trent, now three-and-a-half, has no strength or dexterity in his hands and arms. He can not open a cap on a bottle, pull pants up and down, dress himself, slide arms through car seat harness, color a picture....the list goes on. He holds his arms up to his sides really tight. He does not reach outstreached with his arms. We have seen little to no improvement in this area for more than a year. Dr Mercado has seen much success with the electrostimulation. He says if the brain is not connecting to the muscles in his arms and hands, we'll try it in reverse. Send signals from the hands to his brain. He thinks we should see some major improvement in about 14 days of therapy. Now the challenge will be to find someone experienced, with children to perform it and hopefully the insurance to pay for it. I am expecting an uphill battle. Who knows? Maybe I'm wrong and the school district OT will be a specialist in electric stimulation and perform it as part of his IEP. LOL!
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Re: Miracle Drug, Methylphenadate (Ritalin)

Postby marieke » Fri Aug 28, 2009 8:49 am

Just a side note as to cost of an NMES. I got one for $300 from a company that sells re-furbished or excess stock of medical equipment. Mine was new and worth $800 but got it cheaper as it was excess stock sell-off.
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Re: Miracle Drug, Methylphenadate (Ritalin)

Postby Trentsmom » Fri Aug 28, 2009 6:50 pm

Thanks for the info. Today I found a Children's therapy group close to home that is familiar and comfortable with ESTIM. They also have several therapist that speak Spanish and can read the reports and consult with the Neuro and Rehab Doctors in Mexico. It sounds like we have several options to explore and some limited insurance coverage. What a great day it has been. They also gave me a couple of local Neurologists that might be a better fit for us. After doing several google searches, I was pleasantly surprised to see that ESTIM has been successful for a variety of neurological dysfunctions. Speech, swallowing, bowel and bladder issues to. There is hope. Maybe we can be diaper free some day.

Alison

BTW: I read the What it feels like to have TM on your blogspot. Thanks for posting it. It helps me understand what he feels like some times.
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Re: Miracle Drug, Methylphenadate (Ritalin)

Postby marieke » Sat Aug 29, 2009 7:28 am

Glad that you got some good help from people. Hope it works out :)

Also, the Spoon Theory will give you insight to the fatigue he may feel...
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