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  1. I would recommend trying the natural route as we did that first as well. However, after exploring all testing and avenues we had to do something as our son was having difficulty in school because of the tics. We put him on Topamax and I am happy to say it has been good for him. I would only recommend the brand and not the generic because we had problems with the generic.
  2. Hello all- We had my son tested with IGG and IGE. We were told by the integrative doctor that one tested a true allergy and one tested a sensitivity. These tests were done via a blood test. My son came up highly sensitive and mildly allergic to dairy- we eliminated dairy totally from his diet. Previous to starting the diet we put him on Topamax because the tics were affecting his school work and life. We did the testing with the thought if something shows up we can start an elimination diet and then reduce the meds. He started experiencing daily headaches which we thought might be from the med- so we started to decrease the med- that was a huge mistake. Tics came back full force and he was miserable- could hardly function at school. I started to research and found something similar to what someone else posted on here. The generic form of the Topamax was what I think was causing the problem. We put him back on the brand and after several weeks we saw a huge improvement. Then we wondered if the diet was doing anything at all. We reintroduced dairy without any problems. The elimination diet didn't change anything- it was the Topamax that was helping.
  3. How is he doing on the chlonidine? We are currently on Topamax which was doing a good job but I lowered the dose in July and I think that may be why we are seeing an increase. I am thinking of trying the chlonidine if when I increase the topamax again he gets the side effects- makes his eyes sore. Hope is is giving your son some relief. It is so hard to medicate and I am still looking for alternatives, but sometimes it must be done in order for them to function. I wish you the best. Leslie
  4. I saw a few of you posted a few weeks ago about an increase in tics in your childeren. My son has been doing really well since about March and the last few weeks has been REALLY bad. He was so upset last night saying he is tired of dealing with tics and when are they going to go away. It is so heartbreaking. I really think it is environmental allergies but not sure what to do about it. Has anyone had any luck with allergy shots? For those of you that noticed an increase, are you still seeing an increase or have things settled. Any insight is appreciated. Thanks so much. Leslie
  5. Hi there- I just wanted to say that I totally understand where you are. My son started facial tics last summer and it was so hard to see him struggle. We tried the magnesium and the epson salt baths but I really did not see a difference. It got so bad it was interferring with his school work. We went o a nuerologist ( 2 actually) neither of which I really like but they are the only 2 pediatric nuerologists in my area. Anyway, after trying Tenex (seem to make things worse inculding anxiety) we tried Topamax. Things were great for about a month and then they came back. We went to Dr. Robbins- he is mentioned on this board. He did allergy testing and found an intolerance to dairy (my son LOVES dairy) also to dusmites and mold. So we now have him on a dairy free diet. We are in a much better place than last year but the knot in my stomach is ALWAYS there. Two weeks ago he complained that he was blinking and I just freaked out. I am so afraid it will go back to how is was. But after doing so much research on the internet so many parents say they wasted so much time waiting for things to get worse and they did not enjoy that time with their child. I try to focus on that but it is so hard. It consumes your life. Maybe you should go to an environmental doctor and ask to be allergy tested. I hope that things will settle down for you and your son. Leslie
  6. We have not had any side effects from topamax other than dry eyes- sometimes a little sore. I researched this and apparently this can be helped by drinking more water. I am going to make sure he drinks water even when he is not thirsty. No cognitive difficulties at all- like Mary my son has been straight A's honors courses. We initially tried Tenex but that was a disaster- did nothing for the tics actually think it made it worse and the anxiety was horrible. Leslie
  7. Hi Mary So glad to hear things are going so well. Just wanted to know how long your son has been on Topamax and if you do any diet/allergy elimination? My son has been on Topamax since October. Did really great on the 25 mg then it stopped. We upped it to 50mg and then had him allergy tested. He showed a sensitivity to dairy. Took him off dairy and in about 2 months we saw a reduction in the tics. Not sure if it is the topamax or the diet but I am too afraid at this point to change anything to find out. He still has a few tics now and again like your son but he is in a much better place. If you do decide to reduce the topamax please keep us imformed. Wishing you continued good health Leslie
  8. Hi- yes, I thought the same thing when I started my son on Tenex. He was having eye blinking at the time and shortly after starting the Tenex he started with some other tics. He was also extremely anxious and very whiney. We tried it for a month and took him off. We are on a dairy free diet now (not sure if that is doing anything) and a low dose of Topamax. The first few weeks on the Topamax the tics went completely away. Then after about 2 months they came back. We upped the dose and it got better but they have not completely gone away. Dr. wanted to add Intuniv but I wouldn't go for it because of all the side effects with the Tenex. Good luck. Leslie
  9. Just wanted to let you know that I had my son on Tenex for his tics in August and I noticed it made his anxiety WAY worse. He became very whiney as well. We ended up taking him off the tenex because it was not helping to tics anyways and his anxiety went away (at least back to the minimal normal level) I wish you all the best. Leslie
  10. When we were doing gluten free (no longer since we found out he is sensitive to dairy) the only place we ate out was Outback. They have a menu online and they were so nice when we questioned a few things. They will allow you to bring in your own bun if you would like to order a hamburger. I found they had a really great selection of gluten free items. Best of luck. Leslie
  11. Philamon- Thanks for your input on the Ther-biotic. The multi by Allergy Research is MVM-A. Leslie
  12. Hi Heather- I totally understand your feelings of this consuming your life. I am there too. My son is currently on Topamax- and it started off really great- pretty much took away the tics- but now they are back so we are trying dairy free since he tested positive for a sensitivity to it. I am keeping him on the Topamax bacause like you, I feel it will get worse. We tried Tenex, which is like Intuniv but as I understand it Intuniv stays in your system longer. My doctor just advised us to add Intuniv as well because sometimes the combination of 2 medications seems to work better. I am holding off on the Intuniv until I give the dairy free a chance to work. Have you had your son allergy tested? Hang in there, I know how difficult it is. Leslie
  13. Well we got back our IgG and IgE results. The IgG showed a severe (+5) reaction to milk, moderate (+3) reaction to caesin- the IgE showed mild reaction to milk (+1) and moderate for tuna (+2). So I think we have a sensitivity to dairy which I suspected because my son loves dairy. So we have started on an elimination of dairy. We were currently doing gluten but we are going to stop because tests did not show anything and we have not seen any results with gluten removal. Doctor started my son on a multi vitamin by Allergy Research Group and Nortic Naturals Pro DHA(haven't given him this yet). Anyhow, doctor recommended a probiotic from Klaire Labs called Ther-Biotic. I think Chemar posted she prefers Kefir but since we are eliminating dairy I did find Culturned coconut milk and cultured coconut yogurt from Turtle Mountain. Would this be sufficient? Which one would be better? I would prefer the milk because it has less sugar than the yogurt but not sure if one as more probiotics than the other. This is all so overwhelming. Also, I was told that gluten could take months to get out of your system so any change in tics could take a while. Is this the same with dairy??? Any help is soo appreciated. Thanks so much. Leslie
  14. Thank you everyone for your replies. We did start the GF and I am going to keep a log of what he eats. I did get Sheila's book and by reading it realized that one of the Doctors mentioned in the book and on line here is in my area. I have made an appt. in a couple of weeks for allergy testing and all that stuff. I atleast feel a little better in that I will have someone to guide me through all the possible tests, information, etc. It is so overwhelming. For those that have done GF- am I correct in that it will take atleast 4 weeks to see any change?? Thanks so much for your help! Leslie
  15. Hello everyone, this is my first post, although I have been getting info from this forum since July. A little background- my son has had a few tics over the years- nothing noticeable to anyone other than his parents- mostly sniffing fingers, widening his eyes. Over the summer he started blinking- but he winks his left eye, then right eye then left and right, etc. We tried the Magnesium and epson salts over the summer- we thought we were on the something and then right before middle school started (6th grade) they got really bad. I am sure the stress caused it. He is VERY anxious. Anyhow, it got to were he could not even do his school work. Went to the neurologist and started Tenex- did nothing. We are now on Topamax. That was going great until Dec. 10th he went to a school dance- lots of srtobe lights- came home ticcing badly. Has improved only slightly since then. Anyhow, a friend of mine suggested trying gluten free= her son is midly autistic with motor tics- she has seen a big improvement. She told me that you have to get all new utensils, toasters, pans, etc. so you do not cross contaminate= this seems a bit much. Is this the case. I already went to Whole foods and have to say I am really overwhelmed- things you would assume are not Gluten have gluten- I guess you have to check everything unless it says GF. This is the hardest thing for me. I am so afraid- it is so hard not to cry all day. I do get hope from reading the posts, but it is very scary for me. Any info is truly appreciated. Leslie
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