Reporting on something that is helping us

[trggirl]

Hi, after a rough 6 months we are having some success and I wanted to let everyone know in case it can help someone. Brief background info. ........daughter started ticcing 3 years ago after strep. She had some OCD, anxiety, scary thoughts, etc, but the thing that disrupted her life the most was focus and a racing mind. We ended up having to pull her from school because she was nonfunctional. To get her to do her work, someone had to stand over her ALL THE TIME. We had her CamK tested and it was 237 and most of the time her bloodwork had mildly elevated lymphocytes, low Vit D, low B12 and some other abnormalities. She has been negative on Lyme twice. Positive on Mycoplasma.

 

The first time we tried Augmentin, it was like a miracle. She stopped ticcing, had focus, and her mind just seemed to relax. But then she developed Clostridium so we had to stop. Since then we have been on other rounds of Augmentin and Cefdinir with success but it is hard for her to tolerate with her stomach so life is constantly up and down.

 

Starting this fall, My dd started to spiral downward a bit. Besides the ticcing and other symptoms, she became oppositional on a regular basis which was a new symptom for us. I thought it might be hormones and age but I wasn't sure. I just know she became very "stuck" and argued about everything. We made the decision to try some of the more powerful drugs. We tried Ritalin, Focalin, Depakote, Trileptal, All were a disaster.

 

Finally, last month the doctor prescribed Minocycline. Within two days her personality was sweet and loving again and you could definitely see a reduction in her tics although they were still there. We still had huge focus problems though. I then went to another doctor and she suggested trying Amantadine. Amantadine is an antiviral with some dopamine properties and some anti-glutamate properties. I also read in some Lyme forums that it can affect pH. It is talked about in the book "Driven to Distraction". This drug has been wonderful for her. The first five days, she was like a different child. She had her work done quickly and happily without me having to say a word. Since then, the effect has lessened a bit but she is still able to get the work done with a few reminders. And I just have to point out that this was impossible before the med. No amount of rewards or consequences helped. Her mind was just running and she could not help it.

 

One last thing, I also noticed this weekend that her tics are pretty much gone. I don't know if it is because she has been on the Minocycline for a longer period of time or it is the addition of the Amantadine, but at the moment, the tics are gone.

 

I hope this helps someone. I know things can change quickly and I have no doubt in my mind that the minute she is hit by another bug or virus, things will go down. But these last three weeks have been miraculous and have given me hope for the future.

[EAMom]

wow,Amantadine is something I would like to try. It is supposed to be anti-viral and modulate glutamate.

 

I have posted on it in the past re amantadine and anorexia

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3061844/

We found the amantadine abolished symptoms of anorexia nervosa from the first oral dose onwards. Normalization of autonomic and cardiovascular parameters was demonstrated within the early days of therapy. Abrupt and sustained increases in the plasma noradrenaline:adrenaline ratio and disappearance of abnormal plasma glucose elevation were registered throughout the three-month duration of the trial. Significant and sustained increases in body weight were documented in all cases. No relapses were observed.

 

 

it is also used for parkinsons (another basal ganglia disorder)

http://alexandria.healthlibrary.ca/documents/notes/bom/unit_8b/L-31%20Drugs%20used%20to%20treat%20basal%20ganglia%20disorders.xml

Edited April 30, 2012 by EAMom

[fightingmom]

 

Finally, last month the doctor prescribed Minocycline. Within two days her personality was sweet and loving again and you could definitely see a reduction in her tics although they were still there. We still had huge focus problems though. I then went to another doctor and she suggested trying Amantadine. Amantadine is an antiviral with some dopamine properties and some anti-glutamate properties. I also read in some Lyme forums that it can affect pH. It is talked about in the book "Driven to Distraction". This drug has been wonderful for her. The first five days, she was like a different child. She had her work done quickly and happily without me having to say a word. Since then, the effect has lessened a bit but she is still able to get the work done with a few reminders. And I just have to point out that this was impossible before the med. No amount of rewards or consequences helped. Her mind was just running and she could not help it.

 

This is VERY helpful to me, because I have been convinced that dopamine levels are the major neurotransmitter issue for my son.

May I ask, how long have you been on the Amandtadine and what type of doctor prescribed it for you?

I'm headed down the path to methylation...which coincidentally the goals will involve reducing glutatmate and increasing production of dopamine to normal levels. I think this drug may be able to offer me some clues and maybe I can figure out what recepters its involved with and work my way backwards a bit.

[fightingmom]

New study shows it's being effectively used to reduce traumatic brain injury!

http://www.spauldingrehab.org/news/newsdetails,id=1430

[Dedee]

Thank you for sharing your experience. My daughter also has resistant Myco p. Her physician had her take Minocycline for a few months and was really hopeful that it would help. She said it crosses the blood brain barrier and so usually helps with neuro symptoms. We didn't actually get that much help but we were fighting strep also, so we ended up with Biaxin which covers both. I am so glad you are getting relief. I know how draining the constant battle can be. Best of luck.

 

Dedee

[trggirl]

EAMom, that's interesting. My dd has not had eating issues yet, but I find it interesting that symptoms and medications for this disorder overlap so much. To be quite honest, I really did not expect this to work. We had tried NAC for the glutamate modulating properties and it caused my daughter to become extremely angry and oppositional. We tried Ritalin and Focalin hoping the dopamine stimulation would help and instead it caused my daughter to become manic. So when I saw all these properties included in the mechanism of action of Amantadine, I really felt like it would be a disaster. I am still pleasantly amazed! I have no idea what it's doing that is helping though. Wish I could figure it out.

 

Fightingmom, the doctor is an MD that does Autism clinics. My daughter is not Autistic. In fact, she goes in the other direction, almost too social. She talks and jumps from subject to subject and never meets a stranger. Not quite what I would call manic but she can get there. I chose to go to this doctor because I had heard good things about her and she did a lot of the vitamin and mineral testing which was what I was after. The Amantadine suggestion was a complete surprise and I had to go home and research it before I decided to give it a try. I ultimately decided that it would be quick and worth a shot and even if it didn't work out, it would give us more clues as to what is going on in her body.

 

Dedee, thank you! It is draining and heartbreaking. For all of us on this forum. I feel like the answers are so close to being discovered yet just out of our reach. Hopefully time and dedicated doctors will provide the answers we are all so desperately seeking. I am so happy Biaxin is helping!

[trggirl]

Fightingmom, oops, I forgot, we have been on the Amantadine for almost 3 weeks now.

[EAMom]

I should add that a parent on a FB groups (don't remember which one) mentioned that their child was doing well on anti-virals...I think amantadine was the drug mentioned. Of course, we don't know if it was the anti-viral part of amantadine or the other properties that were so helpful.

 

I should add that we also tried NAC...probably didn't give it a fair shot. We only did it 1x daily ('cause all our other meds are 1x daily!). At 1000mg/day no obvious improvement, on 1500 mg/kg dd said it made her "thinking fuzzy." To be fair, we should have divided the dose into 2 or 3x daily.

Edited April 30, 2012 by EAMom

[smartyjones]

trg -- just wanted to clarify -- are you happiest about the the Amantadine for focus issues? it was the minocycline that curbed the oppositional attitudes? thanks.

 

 

glad to hear you are having good results!

Edited April 30, 2012 by smartyjones

[trggirl]

smartyjones, I am thrilled about both! It just seems that the focus has been the the most long-lasting, disruptive to her life, and hardest to treat symptom so finding something that helps is wonderful.

[smartyjones]

so -- do you think the Amantadine helped at all with the opposiiton, or mainly the focus?

[trggirl]

We started on the Minocycline first and saw improvements in behavior (arguing, defiance), but no improvement with focus. She still could not sit down and do her work on her own. We then started on the Amantadine and for the first time in several years, she sat down, got to work, and did not get up or say a word until her work was done.

[trggirl]

When I think about it though, it's possible that the Amantadine also helped with the attitude because she started saying "yes ma'am and no ma'am" last week out of the blue. We have always worked on having her do this but have never been very successful. She just started doing this on her own.

[tpotter]

I'm so glad for you that these 2 things are helping. I just want to point out, though, that mycoP can be a co-infection of lyme (that was my primary symptom, and I'm still fighting it). Also, minocycline is used to treat lyme and co-infections (our LLMD has used it with us when we couldn't tolerate doxy.) So, it is possible that you may also be dealing with lyme. it is a clinical dx, so even if the blood tests are negative, that doesn't mean you aren't dealing with Lyme.

 

But, again, whatever works is all that matters, and I'm thrilled that you are getting relief.

[trggirl]

Thanks tpotter!!!! I'm definitely not going to rule out anything until she is at 100% and staying there. I will keep Lyme on my mind!!