DebbieC

We did neurofeedback for our son - he liked going and really liked the therapist. We took him from Aug. to Mar. of this year when he lost medical coverage. I didn't see any changes really, though the dr. said it could take many, many sessions. My son had some tics, but not extreme. Didn't seem to make them worse, and his vocal tics started with the med changes. I think I would take him back for neurofeedback if he would get coverage again. The dr. said he had some good results with decreasing tics. Debbie

Hi Cheri, Thanks for the reply. I just found it today - having a bit of trouble navigating the posts. I'm sitting here ready to cry again - my son came home from a youth party last night (he took his own food) with an addition to his vocal tic - now he has added a laugh to it. He has been doing it almost nonstop - a breath, a blow, a honk, a laugh, etc. I read about other moms and their sons tics and I feel like I can hardly complain - he has no aggression, anger, anything like that. But this is driving me crazy. He will be off his Zoloft in 3 more days, but still on the Clonidine, which doesn't seem to be doing anything - although some of his other tics seem to be gone or decreased. He just changes one tic for another. I find the vocal tics to be the hardest to deal with. I guess maybe the Risperdal he was on before was covering them up for the most part, tho he did have a number of other tics that would come and go. The Clonidine just seems to make him tired. I am going to ask the dr. to wean him off of that one as well, then maybe we can start over or do something more as far as finding triggers. One thing that could have increased the vocal tic - he did have grape juice with seltzer water last night. I knew the other kids would be having pop so I sent some with him. The last time he restarted the vocal tics was when he had grapes (not concord, though) as well as some other things he hadn't had in a while - cinnamon being one. I suppose it could be the grape juice. It is really bad today and I just want to cry! He just came in from mowing the lawn and he is now sounding like a maniac with the laugh. I'm not sure if that's his way of dealing with it or if it is part of the tic. "Nyah, nyah, nyah" over and over. Right now he is taking Natural Calm 1/2 tsp/day. When we increased it he had very "wet" gas! He is also on Cal/Mag 1000/400. He is taking Carlson's cod liver oil, 5000 mg Vit C (for years), digest gold enzymes, probiotics, zinc and milk thistle. I had him on GSE for a month or so, took him off and put him on some Nystatin I had in the fridge. Made it into capsules and decided to give it to him for 10 days. I have a parasite cleanse I was going to give him, but I had a blood test done on him and it didn't show parasites (darkfield microscopy). I may end up doing it anyway. I wonder sometimes if the antifungals increase the tics. I told him he needed to do an epsom salts bath and he was not happy about that. But I don't have any right now and can't make a trip to the store today.He will complain, but he will do it if I tell him to. I do get some of the supp from iherb. He has had blood tests for food and mold allergies as well as a skin prick test for the common allergens and molds in our area and everything came back negative. He had IGg food allergy tests done of a few foods (insurance paid for 14) and he reacted very mildly to almost everything - but not much to anything. Normal was <2 and he was 2-3 on most and 5-7 on a few that he doesn't eat now. I was under the impression that they can change over time anyway. We had the blood tests to check for celiacs and that was negative. I have had him on the specific carbohydrate diet for 4 mo. so he is off of grains. He is not dairy free - he eats the 24 hr yogurt and some cheddar, provolone, and parmesan, but not very often. When I was weaning him off of Risperdal a couple years ago he was GF/CF free and we didn't see any changes. When he got down to the lowest dose, he started having a lot of vigorous head turning, so I concluded (wrong or right, I don't know) that it couldn't be the dairy causing the tic because he hadn't had any at all for over 5 mo. I'm at a loss as to where to go next. I suppose the elimination diet, which I find so difficult (do I need a little cheese with my whine??). I am a lousy detective when it comes to what is causing what symptom. I have great difficulty when I try it on myself, and a much harder time with my son. Right now he eats eggs, beef, chicken, ground turkey, yogurt w/honey and vanilla, veggies (gr. beans, spinach, zucchini, limas, peas, occas. broccoli),almond popovers made with blueberries., some plain applesauce, apples, apple cider, bananas, and sometimes a pear. I sent a health history in to Pfieffer treatment center in IL to see if they think they can help him (of course they will say yes) but it is so expensive. It might be worth it, tho. I also found there is an environmental allergist at University Hospital in Cleveland, but we don't have insurance right now, so that is out unless we can get financial assistance. He had state assistance until last month, when they said we made too much money. My husband is self employed and hasn't been able to pay us anything since Dec. - he has had so many expenses. That's not what they look at, tho. So we've applied for a state hearing, but that won't be until next month. Okay, guess I'm done whining for now. I know God has a plan for him and wants to get the glory from all this. It could be so much worse! DebbieC

Hi Chemar, I got your info from Caryn. So here is another mother reduced to tears! My 17 yr old has Asperger's, a few processing disorders, OCD, anxiety (I guess - he used to pray 24/7 because he was losing his salvation), and now has developed a vocal tic that is reducing my husband and me both to tears! He was on Risperdal and Lexapro for about 5 yrs. Just went to a new pediatric neurologist who checked his labs (first time - the psych dr. never did) and found his liver enzymes, A1C, and prolactin all elevated. So we began the process of weaning him off and replacing with other meds. We also started the Specific Carbohydrate diet at about the same time. He has been taking Clonidine 3 mg/day and Zoloft. When he stopped the Risperdal and started the Zoloft he started with vocal tics. I thought it was because of going off the Risperdal - he had had a lot of head turning when we tried to wean him off when we were doing GF/CF and supplements, which didn't seem to help. The only time he had ever had vocal tics before was when he was on a stimulant for a week. He had tics before, even on the Risperdal, at least the behavior therapist thought they were tics. Not sure if tics or OCD - probably a combination. Anyway, the dr. kept increasing the Zoloft and the vocal tics have come and gone (this started in Jan.), and she decreased the Zoloft. But since last week they are back with a vengeance. So we are weaning him off the Zoloft. His praying has pretty much been under control, so we are hoping that doesn't come back in full force when he goes off the Zoloft. He is doing some self therapy to help with that. His vocal tics are just about continuous now (when awake - tho I heard one at 5 this a.m.). We have been doing supplements, but not all the ones you have on your list. I just added some zinc and milk thistle because of the liver stuff. I just want them to stop! It is so hard to listen to him. He has Ohio Envirothon tomorrow with our homeschool group and there are some new teen girls going - I suppose they will just think he is weird. I am hoping we can take him off of the Clonidine as well as off the Zoloft. It doesn't seem to do anything but make him tired. I have not tried the epsom salts baths, but think I will try that. Before when he was on meds we did a foot cleanse that was supposed to help detox, but it pulled the meds out of his system and he had more problems. We are scheduled for an ETA scan the end of next month and I'm hoping that will give us some help. We are considering going to the Pfieffer Treatment Center in Ill. - not sure if we can afford to keep up with all the supps, etc. Have been on one part time income for quite a while. This is long - I needed an understanding shoulder to cry on! One more thing, I read you went dairy free, but then you talked about yogurt. So he is not completely dairy free? Caleb has been pretty much dairy free except for the 24 hr yogurt that's legal on the Specific Carbohydrate diet. He does have a little of the legal cheeses occasionally. He wouldn't complain about giving them up, I don't think. Caryn said your son went off of Clonidine and I was curious about that. Was he on any other meds? DebbieC