mythree

Hi HT's mom. I have often wondered about there being a PANDAS connection. Especially when my youngest started to display tics as well, and it was around the same time my oldest daughter started have a flare up of tics and OCD type behaviours. I wondered if they both were harbouring some sort of infection. I brought it up with out traditional pediatrician and she totally brushed it off. The integrative doc we see is going to explore it at the next appt. We tried the candida route last appt, and she did the medication for that - but it had no effect at all. Unfortunately the integrative doc is sick and on medical leave for awhile - so we are kind of left on our own for a bit. The whole family ended up getting sick and then coming down with the stomach flu and feeling bad for awhile. Now we are all better and my oldest is doing really really well again. So is that a tic flare due to an illness? Could that happen -= when their immune system is weakened they have flare ups?

You are not alone. I too often think of packing up the family and living in the country somewhere to hide away from all that may come. I think we all live with that constant anxiety of things are okay now - or not okay now, but what are they going to be like tomorrow. Teasing terrify's me - - these kids getting teased for their tics is such a scary thought. It is wonderful that your son has an interest in Tennis and is good at it. It gives him another outlet and a way to make friends. It is so sad that the outlet that could have been positive was tainted by mean boys and the internet. I agree with the others - keep him off facebook and hopefully he will make friends with some more suitable children. I have no advice. Just hang in there. And I understand how you feel.

Hi, Sorry that your son is having a rough time right now. A good clean multi vitamin is Kirkman's Spectrum complete. We use the powder form and mix it into a drink or applesauce. It is dye/preservative and gluten free. I know that Mommyfor4 (Megan) uses one called Progressive and she has had good results with that one too. Good luck!

Thank you Evol for being so candid and honest about it all. It is interesting (and honestly scary to hear it from a person who has been there before). I really feel for you - and I really wish you wouldn't feel so responsible for your daughters tics. I know I can say to you that you shouldn't feel that way, but as a parent I know we feel responsible for any hardship our kids face. I had asthma all my life and when my daughter had lung issues as a baby I felt awful, like it was all my fault. I know that is nothing compared to what you are going through. I agree if I could take all these tics and struggles that go along with them for my kids I would in a heartbeat. I don't want this for my children. I don't want this to be something they are continually thinking about and trying to control. When I read your post - and how hard it has been for you trying to hide or control your tics all your life, it sounded exhausting. And sad, that you couldn't just sit back and relax and enjoy having a roomate and school life without having to worry about your tics and surpressing them. Don't ever doubt your decision to have had kids, even if they have got this disorder, for along with it comes a wonderful life and a wonderful mother who will be so much more aware and strong to help them go through life. Thanks again for your reply and all your information. Hang in there!

Yes it is like waiting for the other shoe to drop all the time. My 7 year old seems fine right now, but who knows. My 5 year old started crying this morning and asked me why does my mouth keep doing this? I'm not doing it, my mouth is doing it. I acted like I hadn't noticed. I explained it to her like I did to my older daughter when she was younger. I said 'don't worry it will go away' because she kept crying please make it go away. My older DD said 'yep - still waiting for mine to go away too. I've been waiting a long time'. I'm still in that crappy place right now - so that is why I am thinking I am tired of it all. I am tired of only half listening to conversations with other adults for I can see my daughter doing a crazy tic and my heart has frozen for kids are starting to look at her. I'm tired of having to cut conversations short to 'save' my DD and re-direct things. When we go on outings with her team, all the moms are sitting there carefree chatting and so are their kids and I can see my daughter desperately trying to hold her tics in or jumping up from the table and trying to let them out. Yes, my 5 year old was on the multi anyways and I have added in the magnesium and I gave her an Epsom salts bath yesterday. I think I will try an elimination diet with her. She did the dairy free one when we tried for my other DD, but she didn't have tics at the time. So I will try that one first. My 10 year old seems to be doing better again. So that is a really good thing right now. On a positive note! I heard my 10 year old daughter talking to my 5 year old and was giving her a big hug this morning totally unprompted by me. Just quietly saying don't worry about it, and you look so pretty today, and your mouth habit isn't a big deal. Then she was hugging her and said if you need me during the day just come up to my class. So that was really special and I'll hang on to that right now!! Thanks for listening. Don't know what i'd do without the people here. Evol - you said the disorder was passed to your children. Did you have it? If that is too personal please don't answer it. I was just wondering - that your perpective would be different having lived with it all your life and knowing all that goes along with it and then seeing your children with it. sorry if that was a personal question. Megan - do you have all your kids on the dairy free diet?

Thanks for your replies. It is so nice to be able to come here for support from people who 'get it'. Megan - I know that I am further ahead then I was with my first child for I have done so much research. But when my older daughter had her set back over Christmas it really made me realise that all I can really do is control these tics. I really wanted for her to be cured, but I dunno... I will take 95% control anyday - that is where we were before Christmas. My youngest is so like her too. Except she is so much more aware. My heart broke tonight when I went up to dance class and she was having her break in the lunch room and she was eating and she kept doing the mouth stretching thing and the other kids were saying 'gross and sick you are showing us the food in your mouth, keep your mouth shut while you are eating.' Of course the more they said it the more she got anxious and the more she did it. I had to step in and distract everyone. Cloudy my other daughter has had some OCD type flare ups in the past. However, she is becoming much better at talking about them. I am surprised at how much this kid holds inside and hides from everyone. The flare up seems to have calmed down. It seems overtired, over stressed and artificial colours/sweeteners really set her off. Thanks again for your support.

I have been dealing with my 10 yr old daughter and tics since she was about 5. We have had her on a very tight regime of supplements/vitamins and eliminated artificial dyes / colours. She had been doing amazing - I almost started to relax and forget about it. I was really enjoying life again. But then she had a bad flare up before Christmas. She also started to have some OCD type behaviour. I am sure it is because she was eating lots of 'junk' food at Christmas parties at school, dance etc without us knowing. Plus the change in routine, excitement, anxiety etc. But now, over Christmas my other daughter who is 5 started a constant throat clearing. She had previously had a cold so we boiled it down to her being sick before (even though in my heart I could tell it was a tic by its pattern. I just couldn't let my mind go down that path again. Well that tic did pass, but now the last few days she has started to open her mouth wide like a goldfish. Over and over again. I feel completely deflated. I don't even feel like I have the energy to do this all again, while still trying to get my other daughter back on track. She is the baby of the family too - and I know the long road ahead of us. I guess this is more of a vent then anything. UGH!!

Yes my daughter has had the cough tic a few times before. Often after she has had a real cough. Then a cough tic would follow. She also has had it in the past without a cough first. I think if you can see a pattern to the coughing and it stops when he is sleeping or engrossed in something else - than it probably it is a tic. I hope it isn't and it just passes. Good luck!

All the best with your peronnal issues. Thank you for all your support and advice. You'll be missed! Lisa

Hello, Does anyone have any experience with Krill Oil? My daughter who has tics also has inattentive ADHD. I noticed - what I thought was an increase in tics when I had her on fish oils. So I took her off. I have looked into Flax Oil and Hemp oil - but they don't seem to have the high EPA that is required for ADHD. I'd really like to get her on omega 3's for the ADHD - but I am scared the fish oil will exasperate her tics - that is why I wanted to try the Krill Oil. Anyone with experience with Krill Oil? Or Flax or Hemp oil in terms of focus and attention for ADHD, that didnt' cause an increase in tics? Thanks! Lisa

HI Megan, Glad to hear things are going well for your son. That is so exciting to hear! Lisa

Hi, We use 'Enzym-Complete/DPP-IV' made by Kirkman. My daugher is 10 and about 60lbs. She was told to take a capsule with each meal. Since she can't swallow capsules we have to open them and mix them into her food/drink. So that usually means she only gets about two a day, breakfast and dinner. I wish she could swallow them - for then I could send them to school with her too.

We took our daughter to see a 3D movie on the weekend. She has been pretty much tic free for a bit now. The movie started up and she started throwing her back against the seat over and over. Kind of freaked me out. Thankfully it seemed to be gone the next day. I won't be doing a 3D movie again anytime soon.

At our latest IEP meeting they discussed what med's she was on. I said she isn't on any meds. They said they were asking because she has been doing so so much better - with tics and adhd. When I told them she was on natural treatments and supplements - they were really not interested. They all just smiled a condescending smile and changed the subject. In the past - they had suggested medication. And so did a teacher. I was kind of shocked by it.

Hi, Not here. I actually noticed a decrease in tics when I started my daughter on it. After a week or more. She went on vitamin E as well, for her integrative doctor said if you are low in D you are also likely low in E. Good luck!

Hi, I started my daughter on all of her supplements pretty much at the same time. We started with a pre/probiotic. I noticed however that when we ran out of them and didn't replace them right away, her tics seemed to decrease somewhat. I'd like to introduce them again -- for I think she has candida issues etc, but i was a bit scared to, since she is doing really well now. But like Chris, perhaps i was just searching for a reason and blamed it on the probiotics. Perhaps it was because we had her on the other supplements for quite awhile by that time and they were starting to work. I am going to try them again and see what happens. I also want to try fish oil again. Good luck!

Hello, Like Chris said, we use 'Spectrum complete' powder made by Kirkman. We have found it very beneficial. I have all my kids on it now (even the two who do not have tics). I just use a lower dose for them.

I was actually wondering about this -- getting the tree out of the damp garage where it has been sitting for a year. I was wondering about the effect of the dust and molds etc - hmmmm more to think about now. Why is the wrapping paper contaminated with mold spores? Is it because you've stored it away? Or is all wrapping paper contaminated? Thanks!

Thank you Kiley Ann, That was such a great post to read. It is very uplifting to hear it from a persons point of view who has grown up with this and had done fantastic. Thank you for posting this. It was very nice to read this perspective. thanks! Lisa

Yes, I often feel that way - would love to wake up and it is all gone. No more investigating, worrying, second guessing everything. I don't know if you have other children, but when I was young - I had bad asthma. My parents tried everything, and then wondered if it was our dog that was causing me to be so ill all the time. We had our dog put down (she was too old - and nobody wanted her), and I felt so guilty like it was my fault. My whole family really felt the loss of the dog and they would break down in tears all the time. Although no one really said it, I always felt like my siblings were mad at me, and felt that getting rid of the dog was all my fault. I come from a very supportive family - but these were all my feelings at 12 years old. After the dog was gone I would still have bad asthma episodes but I would try to hide in my room and take my puffers without anyone knowing, I would hide how uncomfortable my breathing was all the time - for I didn't want anyone to know that getting rid of the dog didn't help and be even more upset with me! I look back now and realise how silly I was - but the guilt and anxiety I felt about getting rid of that dog for the sake of me was huge! And I think the guilt and anxiety also made my asthma worse. I guess what I am saying is that anxiety etc seems to be so bad for tics too. When I read your post it brought back all those memories about our dog and getting rid of her for my health. If you do have to get rid of your dog - maybe try to spin it like you have to get rid of the dog because it is old and getting sick. Make it a totally seperate thing than about your son's tics. You'd hate him to feel responsible when everyone is feelng sad about the dog being gone. Anwyay....just my trip down memory lane LOL! have a nice day. Lisa

Oh, that is a tough one. I don't have any ideas or thoughts on it - but I just wanted to comment that my daughters tics are usually worse at home then anywhere else. I was told that is because she can just let them all out at home and doesn't have to worry about holding them in. I guess she is the most relaxed at home and feels totally free to tic away. Thoughts are with you - I know how the dog really does become part of the family. Lisa

That is amazing news!! So nice when someone else notices it too.

My daughter has to take this as well. We haven't started it yet for she is getting over another illness and chickenpox. However, her dosage is only for a weekend? He said to expect that she will feel awful when the die off effect happens. That she would not be able to take it and then go to school or anything - so to do it on a weekend. I wonder why your son is on it for 6 weeks?

Thanks I will spend some time on that forum. I thought there was a sudden onset of tics - when it came to PANDAS. I don't remember that type of thing - such as going to bed 'normal' and waking up the next day with a ton of tics and OCD behaviours. She did just start having tics one day - but at the time I didn't realise they were tics. Not until I looked back over the years. I will research it some more. Thanks for steering me in that direction.

Thank you! I have read about Pandas but I am not familiar with PITAND. I will do some searches on the website to find out more info. The die off with the biaxin makes sense. She loves honey, but I have never tried coconuts with her. I will give that a try too. She is so prone to Strep, she gets it a lot. When my husband took her to the clinic, they said a chest infection and to go on Biaxin. He mentioned strep, and they said there was no reason to test for it, since the Biaxin would work for that too. He didn't really think to push it and get her tested anyway. I was disappointed. Thank you for your reply. Lisa