Does anyone know SCS of Alpha-Stim?

[CZL]

Hi everyone,

 

Does anyone know SCS of Alpha-Stim? This is a prescribing device, I bought it in this Feb. I have been hoping this could help to improve my son's moode problem. So far, I have not seen any obvious effect yet, this is disappointed a little bit, but it is OK, just I don't want to have any side-effect for long term using. Does anybody know this?

 

My goal is to get rid of any meds for my son, right now he still takes Zoloft, haldol and Topiramate as I mentioned in other topic. I understand to decrease dosage very very slow, I do also know this process will be very very hard as well becasue his mouth biting/grinding. I have ordered inositol, vitamins, it is on the way to me ... I believe I will have a very very hard time to go while weaning him off the meds.

 

Thanks,

[CSP]

HI CZL,

 

I have never heard of SCS, what is a prescribing device? Now does it work?

 

I did want to encourage you on the mood issue. I do not remember how old your son is, but my son had the most trouble with moods at 12 and 13.

 

I have to tell you he has had the most wonderful week. He is 15yo now and last week he was granted his 504 plan. All the teachers could not tell me enough how much they like my son. One even pulled me aside and asked if she could buy him something at the post office about the Steelers super bowl win. Maybe a stamp I don't know, but she said, "never has a child touched her like my son has." and that is why she wanted to get him this gift. I was stunned.

 

He also was asked (by a man in his martial arts class) to help him teach some 7 & 8 yo baseball players. The other coaches on the team did not think this was a good idea that my son help out, but they gave him a try. After my son was done teaching these little guys baseball ready, and how to throw the right way ect... The coach who did not think it was a good idea was very apologetic, and thought my son should come to every practice.

 

The last good thing is he has been voluteering at the high school baseball games and my husband and I are so happy to see how well he is interacting with adults and kids.

 

He had his moments when I was so upset at him and his moods. Other times the tics were so bad one almost wished for death. (I don't know how to say that without sounding strange.) Just the wishing God would take all the pain away, and longing for Heaven.

 

With all my fears about the future for him I never thought I would have so much to be proud of.

 

I'm sure for all who are having a bump in the road right now, a year or two sounds long, but I'm sure with a clean diet these moods will pass.

 

 

God Bless all who are having trouble,

CP

[CZL]

CP, Thanks for your reply . What lovely boy and big improvement you have!

 

My son is 11 years old right now. His moods are so bad. Every morning once he wakes up, he will cry. Eveyday when he comes back home from school, once he starts his homework, he will cry. We tell him if he does not want to go to school, he can stay at home, if he does not want to do homework, he can just not do it. We just don't want him have any stress from those as long as he feels good. But he knows he should get up for school which he does not like to go, he knows he should do homework which he does not like to do... He would cry instead of any othe way. We don't understand why. Last year he stayed at home for couple of month, but he still had bad moods. A lot of folks ( Tics parent, not including doctors ) think this is casued by meds, of course some of them is caused by this OCD --- mouth biting, a ulcer in his mouth, it is so painful for a 11 yo kid, hoho..... I don't know what correct way is to improve him, so that's why I want to try to get rid of meds, that will be a big challenge for us because of his mouth biting!

 

the SCS, see their website, http://alpha-stim.com/ . So far I have not seen any obvious improvement yet with SCS, now I just don't know it is good or bad for long term use. Don't want to have side-effect --- I hope there is not.

 

Thanks for all of your help

[CSP]

I'm not sure if this is just me, but I would be worried about putting something on my son that effected his brain. Maybe that is because my son is so tic reactive to just about everything.

 

How is your son's diet? I have some friends who are homeschoolers and they have noticed changes in their children when removing allergies (food) These kids don't have TS just mood issues.

 

Does your son wake up to an alarm, or do you wake him up? I would wake my kids up gentle by scratching their back, and massaging their arms. They looked forward to this and always woke up in good moods. I even warmed their school clothes on the radiator in the winter and always got an "AHHHH" out of them. An alarm clock could jolt them awake and put them in a bad mood.

 

One other thing I did when my son was giving us a hard time about saying the Rosary every evening, was give him a head rub. My oldest DD at first did not like this idea, she thought it was not right to let him lay down while we prayed. I had to have a long talk with her about why she wanted to pray if he was screaming so loud. I asked her what was better, we let him lay down or all of us wanting the prayer to end quickly and not putting much thought in it. I did feel like he got louder just because he did not want to say the Rosary, now he is the one who tells us what time we will pray. I know it is just so he can have a head rub , but I do believe he is getting some graces for trying.

 

Keep trying to find ideas that work for you son.

 

CP

[myrose]

CZL....I know every situation is different and because of this I really shouldn't be putting my two cents in here but.....that to me is quite a drug load for a little boy. I can only imagine what they are doing to his brain alone.

Guessing that the dose on all them were prescribed by a doctor.....its probably high.

My daughter is on topamax (very low dose) and even just some vitamins/supplements taken around the same time can have an effect on the topamax....I would be scared to death to put anything else in the mix.

Have you tried diet at all??? and just a good multi with the topamax alone? My opinion just being that anyones state will be altered with a drug mix. I wish you the best and I truly think that weaning off the drugs and changing his diet, adding some mag would make a big difference for him. Everything seems to always get worse before it gets better so please do not get discouraged.

I am in shock and just amazed that a doctor would put an 11 year old child on a mix of three drugs.

Again I probably do not know what I am talking about nor do I know the situation but the three of them together scares me, not to mention the device you are speaking of.

Does your doctor know about the device and is it the same doc who precribed all three meds??

Can you even mix the supplement you are waiting for with the three drugs???

Please be careful and I hope things get better real soon. Maybe everything together is just too much for his system.

[myrose]

CZL....Maybe after you get off the drugs you could try just giving him some melatonin at bed time. Not getting the right amount of sleep or should I say the right quality of sleep (rem mode) may be the cause of the mood issues in the morning. Maybe he is just cranky from being tired? My daughter took melatonin for a very short time and it corrected her restless sleep issues. She was never slept soundly and was all over the bed at night. We stopped the melatonin a short later and she never went back to the way she was.

Her mood was indeed better in the morning. She gets up on her own most mornings now and she also falls right to sleep at night after she gets into bed after a nice relaxing shower.

Just a thought I had regarding the morning moods. My heart is really going out to you here, your post made my mood go from happy to sad after I read it. Goodluck to you.

[abbe]

 

Wendy,

 

I was wondering what supps you give your daughter with the topamax, I give Nicholas acetyl l carnitine, b complex vit. e, acidol/bif/ magnesium and topical glut. cream all had been working well and he was tic free on only 15mg. topamax. He came down with a cold and the neck tick came back but I am still just holding at what was working. He also cheated slightly with dairy. I still feel like the computer sets it off for him though. In any event just wondering what your supps are and also if your daughter changed symptoms at all when she got sick recently

 

 

thanks abbe and sorry to intrude on this thread

[myrose]

hello abbe

 

Glad to hear about your sons improvement on only 15mg! We will be weaning down to 15mg the day after school lets out and then after a week of that we will give none. I really want to see where she is at. I guess my point is that if she is okay off the topamax well then I would rather her not be on it. We will just have to wait and see.

 

Anyhow I do not give her anything (supplements) along with the topamax. We had some issues with certain things a bit back and it was too hard to figure out what was reacting with the topamax and what was not...so I just decided on a regular multi vitamin and give it to her far away from the time she takes her topamax. I also only do the multi every other day instead of everyday. She eats pretty good as well so as long as everything seems to be working I am not changing anything.

As far as sickness its funny you ask that because my daugther never got sick alot at all. The doctors always told me as soon as she hit the kindergarden year that would change but it never did. She has had one cold this year and thats rare for her.

Her nose gets stuffed more than anything around the same time of the year, I attribute this to allergies and Benedryl takes care of that most of the time until its gone.

I was also told that her immune wouldn't be getting stronger if she didn't get sick so it could build and get stronger but so far nothing.

She had strep throat once as far as I know of. Three kids in her class had it while in pre-K so this is what flagged me to take her in. It was positive, although she never displayed any symptoms at all. (scary)

I was also never sick as a child and rarely get sick now either. I had my very first sinus infection when the cold blew through the South this year.

Strangely my daughter has never vomited in her life either. Just one time but it was more like a spit up like from acid reflux than vomit. I too have never vomited aside from younger years when I first explored alcohol LOL

 

So I guess to answer your question, no....when she did have a cold this year it brought on no symptoms as far as tics. Her mood was awful though but I guess everyone is a bit cranky when they are not feeling well.

 

The only thing that pops up once in awhile that related to all the stuff we began with is her sensory issue with clothing. Every once in awhile she will complain that her clothes do not feel right and she gets quite upset. This is short lived unlike before and usually goes away in a short while and she is fine again without having to change clothes like before.

 

We did have her in therapy last year for a few months for sensory issues. But at $350.00 a week we could no longer afford it.

Our insurance compnay also canceled her. She is now on a Florida program called CMS in which pays for everything so I have deceided to put her back in the sensory therapy over the summer time when school is out. I just want to make sure the sensory issues do not pop up again down the line and stick around as they were in the beginning.

 

Hope things stay smooth sailing for you after he rids himself of any sickness. I do hear alot about sickness bringing out tics but from what I have also read they usually go away after the sickness is gone. Everyones situation is so different that its hard to tell I guess.

 

Goodluck and I wish you the best. I am so happy with the effect topamax has with her that I am not sure what I would have done if it didn't work. I really would have not chosen any other drug but being that it came to the point in which we needed to consider them I only was okay with topamax after my research and also only at a low dose.

If I can help with anything else please let me know, have a great day

[momaw]

Hello,

I have a 12 year old daughter with tics (although with diet changes she is doing WONDERFULLLY now), and an 18 year old daughter who struggled with OCD and extreme mood swings from age 3 until just two years ago. I just wanted to share with you some encouragement on the road to non-medication for mood disorders. For several years we tried different medications for our daughter with OCD. The side effects were awful--lethargy, ugly meltdowns of rage and tears, etc. When we decided to get her off of meds, the huge rage meltdowns vanished overnight, though she still of course had severe OCD and mood swings. From the time she was three, I would dread hearing her footsteps on the stairs in the morning, as she was "loaded for bear" from the moment she got up. When we got her off the meds at about age 13, we immediately started high doses of a high quality (Standard Process) Inositol, and fish oil. She improved by about 50 percent, she showed more improvement than she ever did on the meds, but she still struggled, alot. About two years ago, we had her tested for food allergies, and found that she was allergic to dairy, gluten, and a few other things. Once we took her off of these things (I think the dairy and gluten affected her the most), we started seeing improvement, gradual, though immediate, and she continued to improve for about 8 months, until which time she showed total remission. I have to say that we also renovated our whole eating lifestyle, and at this time eat virtually no processed food. I buy whole, basic, unprocessed food, clean and organic (we also raise our own organic beef and chickens), and fix it from scratch at home. We seldom ever eat out, as there is very little food out there without additives. Even the french fries at most restaurants are often dipped in milk or have some type of seasoning with gluten--you have to check EVERYTHING. We pack our food usually if we are going to be gone over mealtime. We bought a juicer and use it for vegetables in addition to the large amount of veggies we consume. We homeschool, which certainly helps the issue of control over what is eaten.

Anyway, this is a child who struggled with severe OCD for 13 years, who can now drive (and has more courage than experience!) when she was way too afraid before as she feared she might hurt someone, attends college, and is now happy, happy, happy--she has the most joyful, even temperament than anyone in the family (seven of us)! She also has a very profound sense of compassion for those suffering.

It has been a very long road with years of tears and prays for my baby. The changes were not easy, but certainly a lot easier than living with this crippling condition. She fought the food changes at first, but she was old enough that when she saw the changes that were happening, she owned the diet 100%.

I know what a HARD time this is. The answer is not as "easy" as diet changes for most people, but we tried many, many things, and so I just want to encourage you to not give up, no matter how many road blocks you encounter, and pray!

[abbe]

 

Wendy,

 

So good to hear from you. Well today is Wed. and nicks neck tic seems to be dying down a little each day. This is making really think about his computer and the video game (call of duty) he plays on it being the culprit. I only allow him computer time and video game time every other weekend. It seems to me that it could be a trigger. He wants to see that 3 d movie out monsters...but I am petrified to take him. Last movie he saw hotel for dogs he went in with a neck tic that turned into a neck jerk and scared the life out of me. One of the reasons I have been so leary about increasing the topamax is the 15mg enabled him to be tic free and if not tic free very, very mild tics the kind I could try and live with as well as him. I wanted to still be able to see his triggers and figure this whole "mess" out while giving him the extra support that the topamax has provided with 0 symptoms. I have no regrets at all that I put him on this med. Funny how you know as a mom what you need to do for your kids. My other two had issues with add and ocd both of which I never even considered medication. It was different with Nicholas with the tics went the tic settled in his stomach and he told me he couldn't eat and lifted up his shirt and said something is in my belly and I can't make it stop I wanted to die. really...I was losing my sanity. Now I feel in control again.

 

Next week I am taking him for the dried blood test to take my supplements and program to the next level. I do not know what I would have done without the support of this board.

 

Please, please keep me posted when you go off the topamax. I can tell you that nicky wasn't tic free on it until I increased his b complex so I think the b vitamins have made a big impact.

 

 

abbe

[CZL]

Hi Everyone,

thank you so much for the information and encouragement, I won't give up for sure.

 

all meds were given by his doctor, actuatlly they suggested high dosage to control his mouth biting and mood issues. We were just so scared not to follow this. this was not we did not listen to the doctor, we did tried the dosage they prescripted for a long enough time, the result was totally unacceptable. At that time I even wanted to take those meds in person to try -- I wanted to feel those meds myself as little kid hard to tell what was wrong. But the doctor stopped my "stupide" idea. To put him on SCS is my own idea. I consulted this with some people, they don't trust this, but they don't think there would be side effect. I did not have my son to wear this evey day, but I wear it on evey day as I want to know what that is. So far for myself I have not found anything wrong. For my son, have not seen obvious effect. Maybe just like meds, different people has different result.

we did try the Topiramate(topamax) alone, the dose was not low, up to 100mg gradually, No, it did not work.

Anyway, I am decreasing my son's meds vey slowly. Those meds are real drugs for my son. I hope I will be able to get rid of meds finally and use some natural ways for him to try.

 

Thank you, CP, myrose, momaw And thanks Chemar for all of your help,