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Posted

Hello All,

 

We had Neuro appt on Monday and it went very well. This is only 2nd appt with this Neuro and I like him. He is #3 for us since 2008. DS11 is tolerating Prozac 20 mg well- we are going to leave as is...no increase planned. He is on Lamictal for LKS- history of abnormal EEG-that should be considered for weaning at age 15, however, doc picked up on research from 1997 and 1999 that Lamictal can cause drug induced tics in higher doses. Low dose-OK. Higher you go- causes tics. My son is on this for AED purposes and he has had normal EEG's while on it. I told previous neuro I always felt he did better around 75 mg but her target dose was 200mg which we are on now.

 

We are going to wean slowly. I have to be careful as this was not ordered in a vacuum, so to speak. Ordered for abnormal EEG. I must be careful not to go so low as to allow abnormal EEG to return which effects his speech.

 

Anyway, while there I talked to Neuro about Nicotine patches for tics and ADD symptoms- there is a lot of positive research that it can help both without causing addiction and is well tolerated. He said he used it back in the 1990's with good results but it just kinda waned in favor with all the stimulant meds that came out and other alternative meds for ADD/ADHD. My son does not tolerate stimulants and we have run through Intuniv- so, there are not many options left. He had more of an ADD type issue. Not ADHD. He said it may be worthwhile to slap a lowest dose Nicotine patch on him over a weekend and see how he responds.

 

Just wondering if anyone has tried Nicotine patches and if so, what was the response for tics and or attention/focusing. were you able to continue it long term? Thanks for any replies:)

Posted

I don't know a thing about the nicotine patch but wanted to warn you about reducing the lamictal. My DS is currently being weaned off lamictal. He was on 100mg a day (50mgbid)to help reduce anger, irribility and anxiety. I don't think it did a thing for the anxiety. If it did, it was such a small help it went unnoticed. Anyway, back to the point. Pdoc started the reduction at 25mg am and 50mg pm. That did not work well. It caused anger and irritibility in DS. I balanced the dose at 37.5mg bid and he did better. Next reduction was 25mgs bid. More anger and irritibility. I had a talk w/ pdoc and the last reduction, two weeks ago, I took him to 18.75mgs bid. This reduction was smooth and seamless. I don't know if he's now reached a point where the dose is so low as to not be affecting or if the better results is because we didn't jump down so much and went a week longer before reducing.

 

We are going 3wks between reductions now. Pdoc ordered it every 2 but that didn't go well. My experience says go very, very slowly and take a lot of time between reductions. If you are avoiding setting off seizure activity, I'd think you'd want to go even more slowly.

 

My DS developed tics but they came a yr after first major episode and 4 months after starting lamictal. They went away first after starting abx. Came back w/ a small exacerbation. Went away w/ an abx change. Came back after IVIG and then went away and haven't seen them since early July (knock on wood).

Posted

I don't know a thing about the nicotine patch but wanted to warn you about reducing the lamictal. My DS is currently being weaned off lamictal. He was on 100mg a day (50mgbid)to help reduce anger, irribility and anxiety. I don't think it did a thing for the anxiety. If it did, it was such a small help it went unnoticed. Anyway, back to the point. Pdoc started the reduction at 25mg am and 50mg pm. That did not work well. It caused anger and irritibility in DS. I balanced the dose at 37.5mg bid and he did better. Next reduction was 25mgs bid. More anger and irritibility. I had a talk w/ pdoc and the last reduction, two weeks ago, I took him to 18.75mgs bid. This reduction was smooth and seamless. I don't know if he's now reached a point where the dose is so low as to not be affecting or if the better results is because we didn't jump down so much and went a week longer before reducing.

 

We are going 3wks between reductions now. Pdoc ordered it every 2 but that didn't go well. My experience says go very, very slowly and take a lot of time between reductions. If you are avoiding setting off seizure activity, I'd think you'd want to go even more slowly.

 

My DS developed tics but they came a yr after first major episode and 4 months after starting lamictal. They went away first after starting abx. Came back w/ a small exacerbation. Went away w/ an abx change. Came back after IVIG and then went away and haven't seen them since early July (knock on wood).

 

Thanks for the warning. We are going down slowly...50 mg every 4-6 weeks! I don't expect to wean him off- we are just going to lower from 200 to 100- maybe 75 mg- to see if tics diminish. I expect he will have to continue on a AED until age 15 or so due the abnormal EEG. If I don't like what we see going down- can always go back to 200 mg. Thanks for feedback!! We did not have tics all summer then had ?Strep/ear infection 9/14/11 and tics came back. Waning a bit over the last month but not gone.

Posted

I would try the nicotine patch.

 

As a child I was on a penicillian shot every month for five years. My mother was an RN and said she didn't know what was wrong with me but knew I needed that penicillian shot for my unknown infections which were causing high fevers monthly. My symptoms went away when my brother got his tonsils removed for chronic strep. I had strange fears (like couldn't have straws pointed in my direction or it would cause me extreme discomfort). I had other mild OCD. Was it PANDAS? I have no clue. It all went away in college suddenly. Could have to do with growing an inch in college(in the 90's) and I completed my growth or....it could have to do with the smoking thing I did in college. All I can say is thank God there was no internet, facebook or youtube when I was in college. I would have put Lindsay Lohan to shame.

Posted (edited)

All I can say is thank God there was no internet, facebook or youtube when I was in college. I would have put Lindsay Lohan to shame.

 

:lol:

 

You and me, both! All the behavioral stuff sounds very familiar, though I was pretty much "hyper-immune" and never caught anything while my sister was the walking Typhoid Mary in my house . . . and constant strep! So I was definitely exposed, too. My titers were probably on the roof, but who knew to check back then?

 

I've told DH any number of times I think I may have had PANS on some level, myself. In my case, I didn't really smoke in college, but immediately upon getting out and moving half-way across the country for my first job, smoking OP's (other people's) pretty much every weekend when we were out dancing and having a few drinks definitely became a pattern. And that's about the time I began to feel "normal" for the first time in my life, too.

 

Hmmmmmmmm . . . . :blink:

Edited by MomWithOCDSon
Posted

Ok, just going to throw something out here wild and crazy. I am semi-sorta certain that acetylcholine boosters help my daughter. A person's body has nicotinic receptors and muscarinic receptors that stimulate acetylcholine. Would the nicotine help boost acetylcholine and therefore help with pandas symptoms????? I wish someone would step in and do some studies on acetylcholine and pandas.

Posted

I would try the nicotine patch.

 

As a child I was on a penicillian shot every month for five years. My mother was an RN and said she didn't know what was wrong with me but knew I needed that penicillian shot for my unknown infections which were causing high fevers monthly. My symptoms went away when my brother got his tonsils removed for chronic strep. I had strange fears (like couldn't have straws pointed in my direction or it would cause me extreme discomfort). I had other mild OCD. Was it PANDAS? I have no clue. It all went away in college suddenly. Could have to do with growing an inch in college(in the 90's) and I completed my growth or....it could have to do with the smoking thing I did in college. All I can say is thank God there was no internet, facebook or youtube when I was in college. I would have put Lindsay Lohan to shame.

 

Thanks, PhillyPA- enjoyed your post. I am of the same opinion. Slap a patch on him and see what happens. Neuro already gave me his blessing:)

Posted

Thanks, PhillyPA- enjoyed your post. I am of the same opinion. Slap a patch on him and see what happens. Neuro already gave me his blessing:)

 

Please let us know how your DS fares! Very interesting!

  • 2 weeks later...
Posted

Ok, just going to throw something out here wild and crazy. I am semi-sorta certain that acetylcholine boosters help my daughter. A person's body has nicotinic receptors and muscarinic receptors that stimulate acetylcholine. Would the nicotine help boost acetylcholine and therefore help with pandas symptoms????? I wish someone would step in and do some studies on acetylcholine and pandas.

Nicotine blocks nicotinic acetylcholine receptors. We've had some success off and on with bethanechol, a muscarinic acetylcholinergic agonist, which stimulates the parasympathetic nervous system.

Posted

Are you sure Peg? I thought Nicotine was an agonist? But I did think that long term exposure of nicotine could lead to desensitization of the receptors?? I readily admit that I can get confused quickly though so you could be right> :wacko:

 

We have had some minor success with focus and motor and vocal tics with DMAE (another acetylcholine producing agent). The problem is it doesn't last.

 

I am definitely going to ask about bethanechol on the next visit.

 

How is the riboflavin going ? We just started a trial of it again yesterday. I am hoping we don't have a rash come up again.

Posted

Are you sure Peg? I thought Nicotine was an agonist? But I did think that long term exposure of nicotine could lead to desensitization of the receptors?? I readily admit that I can get confused quickly though so you could be right> :wacko:

 

We have had some minor success with focus and motor and vocal tics with DMAE (another acetylcholine producing agent). The problem is it doesn't last.

 

I am definitely going to ask about bethanechol on the next visit.

 

How is the riboflavin going ? We just started a trial of it again yesterday. I am hoping we don't have a rash come up again.

Wow, I was sure enough to post that w/out checking! Looking now, I see that nicotine is an agonist. Hmmm. I could have sworn the muscarinic/nicotinic receptors were named because those substances blocked the receptors.

 

For us, bethanechol, after priming with cod liver oil (vitamin A), seems to trigger recovery of appetite, sleep cycles, brain clarity, and even enhances eye-hand coordination. But, giving it chronically, the effect diminishes over time. So, I tend to use it for a week or so during crisis, then let it go. The 1st time we ever used it was amazing!

 

The riboflavin(B2) has really improved overall mood and reduced spiking pain episodes. To clarify for others, as recommended by the neurologist, we are using a product called Migrilief, which contains gigantic ammounts of riboflavin, some magnesium, and feverfew. We do give additional magnesium. W/in 48 hours of use we noticed a dramatic improvement. As luck would have it, the PBSkids website that my daughter loves and uses all the time, went down. Instead of her typical hysterical meltdown w/ rages and severe aggression, she just cried. Okay, it was an overreaction- heartbroken sobs, but still, I looked at my hub in amazement...she's JUST crying! And headaches have been much fewer- have only needed to do 1 imitrex rescue/week. But, she had dental work (pulpectomy in 1 tooth) a few days ago, and now we are seeing an increase in behaviors and headachey meltdowns. I don't know if that is because of the tooth infection or medications used to do dental work- nitrous oxide, halcion, fluoride treatment...

Posted

Peg is that OTC migrilief?

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