mythree

Hi Nola, I have no idea, but would be very interested myself in the answer other's may have. Was you doctor specifically testing for PANDAS? Or was he/she test for a recent strep infection? Good luck, Lisa

Hey Chris, This is really interesting. We use Spectrum complete as well and have just started on the new formulation about a month ago. My DD's tics have also gotten worse in the last few weeks to a month. I never thought that it could be the change in her multi. I knew there was a change in the ingredients - but I never thought that maybe one ingredient could have that much of an affect. I will try ordering the GS. Do you give your son the whole 500mg dosage daily? I don't really understand how GS works? I will have to google it (unless you have an easy to understand answer for me! LOL). Thanks for posting! Lisa

Us too. We have had amazing progress over the year. But I have seen an increase in her tics the last two weeks. An old neck stretching rolling one I haven't seen in ages and a breathing tic this week. Last week it was an arm thrusting tic that is so severe that it causes pain. This too is a tic she had years ago. We don't start school until next week - so it isn't school stress I don't think. Pretty much everything else is the same. I had cut back drastically on vitamin D - because she was getting a lot naturally and I wasnt' consistent with her Vitamin E - so I was wondering if the reduction in those two vitamins were the cause. But maybe not if others are seeing the same? Interesting to see how the next few weeks will be for us all.

Thanks Chris for your report. You summarised it so well. I am glad to hear things are going better for your family. We too have noticed a huge improvement in my daughters tics and her ADHD. We stick to a diet free of artifical colours, flavours etc. We avoid milk all together and rotate other dairy. We also use the clean multi, magnesium and a bunch of other supplements - but I think the others help with her ADHD more. We also realised that citrus - I was mixing her vitamins in orange juice - seems to really bother her. When I removed that - a stubborn tic finally went away. We have also noticed an increase of tics this summer. We don't have a pool. I was wondering if it is because we are seeing more of her - but I don't think so - she even mentioned that her tics are worse. I think she thrives on schedule and we are on no schedule right now. She isn't getting her supplements at a consistent time either - like she does in the school year. Who knows why - but it is nice to finally be able to relax and think - that sucks - her tics are worse right now, rather than having that overwhelming feeling of anxiety I've had in the past. Thanks again for your update!

My daughter inhales quickly one after another often. Like she inhales five times before exhaling. She will often lift her fingers to her mouth and inhale, drop her hand and then lift it again to her mouth inhale over and over again. Other times it is like she is sucking in air quickly, like trying to catch her breath. Usually though she puts her fingers to the corners of her mouth as she does it.

Hello, Yes my DD now 11, has breathing tics. It is very alarming and listening to her actually throws my breathing off - where I find myself hyperventilating. I notice it most when she sits quietly and watches tv. She doesn't seem bothered by it. I don't ever notice it except when she is watching tv and especially if it is a stressful type show - like a mystery or something. Good Luck!

Hello, I don't have any answers for you - just to say I understand. It is so hard. That constant anxiety as a parent we have. When the tics are gone - life is good. If the tics come back but they are not really 'bad tics' then life is okay - with that feeling that it could get worse at any moment. Then when your child has the tics that terrify you - like what you are going through - everything is just awful again. All I can say is hang in there. You are at an awful low right now, but you know that it will get better again. I understand your anger - of why does your beautiful child have to go through this. It really is unfair.

We use Kirkman Magnesium glycenate (powder form), My DD is 63 lbs and we use 1/2 - 1 tsp at night

I would get her swabbed for strep. My daughter has had strep and we didn't even really know. Except for an increase in anxiety etc. Just to rule that out. I feel for you. You must be so worried about her. I know 9 is an age where kids go through a 'worry' type stage. Worried about being poisoned, or hurt. Worried something will happen to their parents etc. But your daughter's sounds like it has gone past the normal worry type stuff...... Wish I had something helpful to say. I really hope both of you get it all sorted out soon.

To add to what I wrote above. I just compared the Spectrum Complete Powder -Hypo to the one on the Kirkman website that is Spectrum Complete Powder II-Hypo. It must be their new formulation of the same vitamin powder. I am going to email them and ask. The ingredients are all the same, but they have boosted the amounts on certain ingredients. So nothing seems to be taken out or added in that is new - but there seems to be more of certain vitamins. Nola on the Kirkman website they are listing 454 grms for $49.75. Seems a lot cheaper than the Amazon price....

Hi Nola, No it does not specifically say for children. It is Spectrum Complete Powder. That would be name, but it does say under the name "Hypo Allergenic". It is aslo Casein and Gluten Free - but I think all the Kirkman products are. So from the list you are giving I would say it is Spectrum Complete Powder - Hypo. Hope that helps.

Glad to hear you are seeing some positive results. We use the Kirkman Spectrum Complete powder as well and have seen results. I did not know there is a new formulation? I have a full container now - but would hate to have to switch it. We also use Kirkman Magnesium glycenate at bedtime and see a difference.

My daughter has had a similar type arm tic. No too much shaking, but thrusting it, rolling it, waving it etc etc. She too will say it hurts when I push on a particular part of her body that she is tic'ing. But i often think that is due to overuse of the same muscles over and over and over. It did effect her in school. She was unable to write while she had this type of tic - for she couldn't keep her arm still long enough. Good Luck! I often rub on the magnesium gel if it is a large motor tic like that, on the area that is bothering her. Hang in there!

Glad to hear you are in a good spot right now. Enjoy it!

So far so good here too! We just came out of a rough patch as well - but things are going well here right now. The moon looks beautiful!

Thanks Kevin for the link to the foods with salicylate's in them. My daughters have been doing well - and I went out and bought two tubs of rasberries ( I hadn't thought of the salicylate connection). They have been eating tons, and I have noticed my older daughters breathing tics have increased and she has started a wrist snap. My younger daughter is rubbing/picking her nose constantly. I never would have thought of the rasberries possibly being the culprit - thanks!!

Hello, Is it a deliberate type shake - as in more of a motion? Any tic behaviour I have witnessed it is a deliberate pattern type behaviour. Or is it shaking like a trembling shake? The leg that it happens to, is it on the same side of the body as the arm shake? If you were to put your arm on her or if you were to ask her about it, does the shaking stop? Sorry I don't have any answers. Most of my kid's tics you can say - oh yeah that is a tic, for there is a pattern or a motion to it. My daughter has had arm and leg ones as well, but again - it wasn't a shake, it was a purposeful movement. If it was a shake, like a tremor - I personally would get it checked out. I can understand why you are upset. However, I do know people that shake their leg all the time, especially when anxious - I don't know if that is a tic or a nervous habit. Sorry I haven't been much help. Hang in there, and if you are worried than no harm can come from taking her to the doctors. Good luck!

It is fine to give it on its own, but best to be taken with the meal which contains the most fats. This increases the absorbtion.

I dont' know , but I'd love to know as well. I have been thinking of trying it for my children. Hopefully someone who knows a bit about it will give their opinion.

Sorry, sounds like my reply offended you. I thought your post had said from parents who had home-schooled or who had tried public instead. I didn't' realise that you only wanted homeschooling parents. You didn't mention anything in your first post about his ADHD so I didn't realise that was your main concern about not sending him to the public system and considering homeschooling. I too have done tons of research on homeschooling, for my child also has had severe tics, ADHD and a learning disability so I know where you are coming from. She started when she was 5 years old. I have researched it in case teasing got bad at school or in case her ADHD prevented her from having a positive learning experience, that way I would be able to pull her out of the system and teach her at home. She is also highly artistic so she has auditioned for arts schools as well, to have that lined up in case the typical public system doesn't work for her. Like you I will not medicate at this time. I have spent a lot of money and countless hours investigating every alternative there is. I have found amazing results with the diet/supplement route that we are using and it has all been worth every penny and minute. I did not mean to imply that you were doing the homeschooling for your sake and not your child or that you were wrapping him in bubble wrap. I was just talking from my experience. When I said I'd pull my daughter out (for my sake) I meant that because she herself is not complaining about school or teasing issues, it was for me who is terrified it will start and she will have irreversible self esteem issues. If she was to get teased and be uspet about it, then like I said above, I have considered all the options. Sorry if I said something that ruffled your feathers. It was not intended.

My daughter who is 10 is in the public system. Our youngest in SK who has started displaying motor tics is also in the public system. I have thought of pulling them out (for my sake LOL) to wrap them in bubble wrap and protect them. But sadly since they may always have this or at least for part of their lives, they will need to learn to live with it in daily life. We have not encountered major teasing, no more than any child unfortunately experiences about having something different about them. My children will 'tic' before a birthday party when they are excited, while watching a movie, when playing, so I would be unable to remove them from all situations, for in reality tic'ing is part of them - for right now. I know where you are coming from, but as tempting as it is, our kids need to learn to live and thrive with what they have. It doesn't define them it is just something they have. I am not sure if you are considering homeschooling for the whole duration of his school years, but if not, it may be a lot more stressful for him to start in a later grade, after everyone has already made friends and know each other. Then if he still has tics (and I really hope he doesn't) he has to start as the new kid, with these tics. Starting him off in kindergarden, he will be new with everyone, and they will get to know him and perhaps his tics, and hopefully just get used to them. Good luck with your decision. All the best to your little boy too. Lisa

Yes, I totally understand. You think you are on to something and you start to cruise along, and then it all flares up again. I find it very odd. Especially when you can't pinpoint the cause - it can be mind boggling. But, I guess just enjoy the good times and hopefully they will last longer and longer!

Hi Nola, So sorry to hear you and your son are going through such a hard time. How long has he been on the L-carnatine? We noticed a difference with my daughters vocal tics when we started that supplement. Also, I agree with the others about the good multi-vitamin. Also, eliminating artificial dye's or colours or preservatives seem to be a big one for my daughter too. We didn't notice any difference when eliminating dairy (mind you - we hardly eat any dairy now - pretty much just a bit of cheese and sometimes yogurt.) We are all still on the rice milk. Good luck and hang in there. Lisa

Ha! Get used to overanalyzing everything!! LOL. My decision making skills are becoming so bad for I second guess everything I expose my kids to - food, activities, elmination diets, supplements etc etc. But I guess you kind of get used to it all. I can totally see why Feb would be a hard month. I can't remember if you said this or not - but is your son on a vit D supplement? My daughter was severely depleted in Vit D, and the winter months it would get even worse. She is on high levels of Vit D now. That seems to have made a big difference. With her focus and attention span as well. Good luck. I hope he has a good day - and you too!

Hang in there. I remember when my daughter was younger there was way more time between tic flare ups. She'd be very tic'y and then we'd have months or entire summer tic free etc. But as she has gotten older (10) there is not so much time between now. We have periods of very very minimal tics - where I've forgotten she even has them (well not really - I could never forget LOL) - they are that good, but then they will often flare. I am noticing that they seem to flare up before she gets sick, even if we keep her on her diets and supplements, if she has a flare up, she'll often be sick the following week. something to consider???