Is it Tourette syndrome?

[mi_sarah]

Hi

When my daughter was about 2 she suffered from night terrors, this continued until she was about 3 1/2 and was replaced by winking/blinking every now and then. The blinking and winking has continued throughout and is now almost constant. At about 4 to about 5 she would often clear her throat. Since starting year 2 in September she has developed more facial movements and a new vocal which sounds a bit like someone agreeing with you when they hum "hmm hmm".

She also stretches her fingers a lot, I am really unsure as to when this one started because I up until recently I hadn't thought anything of it. It wasn't until the humming thing started that I 'really' noticed any of these things and now all of a sudden everything kind of pieces together.

I have read that Tourette Syndrome is hereditory but niether of us has it, although I also read that it is connected to ADHD which my husband has and is also in my family but I do not have it.

I have also read that many people with TS also have OCD which I am concerned about, My daughter is very bright and confident but she is also quite a perfectionist and gets very cross with herself if things don't work out like she meant them to, also her teacher said she is in the top 3 of her class but says that it is always a struggle to get her to finish anything because she does everything so slowly, I spoke to my daughter about this and she explained it as "I just can't think what I am going to write next until I finish the bit I am writing now"

The other thing worrying me is that for the past week or so she has been unable to sit still, kind of like she has ants in her pants or something.

 

I am wondering what people with experience of TS think the likelihood of her being diagnosed with TS is? And if you think it sounds like OCD or something else? I really don't want to seem paranoid or over protective or anything but I am concerned for her and don't know how to answer her questions about it all and I don't even know if it is likely to get worse?

 

Please help

Michelle

[faith]

hello michele,

I'm wondering what if any things you have tried to slow this down. sometimes some changes in diet, junk foods with artificial colors/flavors can have a beneficial effect. Have you given supplements, many here like a product called "Natural Calm" or "kids calm" which is a magnesium powdered drink that alot of kids seem to be deficient in. What type doctors have you seen? what type of illnesses has your dd had since a baby? really there is alot to look into. If you're dd is struggling in school, it may be beneficial to just have her diagnosed with tics and anxiety and try to get a 504 plan for her at least to give her some help and not have the teachers be on your back about her inattention. this is kept confidential, you don't have to advertise it. many of us here believe that we don't care what this is all called, we just address the symptoms. but if they need something formal, it could help level her playing field with extra time to do work, and other accomodations that could help. I have this for my son for the last three years. he is now 10. I got a letter from the neurologist that said he was diagnosed with tic/ocd/anxiety. Have you seen a neurologist?

 

Faith

[mi_sarah]

Hi

I have only seen our own doctor so far and am awaiting an appointment with a 'specialist' but not sure what that means.

She has not had many ilnessess, chicken pox and colds is all really.

She isn't struggling at school it's just that the teacher is concerned about how slowly she works, obviously this could become an issue as she gets older but at the moment she is only 6.

Michelle

[sf_mom]

Michelle...

 

You really need to check into Pandas. I suspect your daughter is neither Tourette's or OCD but has cross-reactive antibodies that are attacking her brain. THERE IS NO TEST YOUR Pediatrician can provide that will tell you if your daughter has PANDAS or NOT. Most PANDAS children ASOs and ANTI-DNAse-B are negative and suffer greatly due to misdiagnoses.

 

You can send a blood sample to Madeleine Cunningham who was involved in the original Swedo Study and they can test CaM Kinase Protein levels that are activated by the cross reactive antibodies. I suggest you become very knowledgeable on PANDAS through reading PANDASNetwork.org. Read the website at least 3 times 'and all the study links' and understand the science. Also please, post in the PANDAS section for additional advice. I would hate for your daughter to suffer years of misdiagnoses without exploring PANDAS first.

[Chemar]

Hi Michelle and welcome

 

it is good that you are checking into possible causes for the tics as the earlier one can start correcting things that can be corrected, the better

 

we arent doctors here, so none of us can make diagnosis, whether for TS or PANDAS or any of the many things that can trigger tics, but we try to share our experience in the hope that it can help others

 

usually Tourette runs in families and so if there is no family history it would be wise to consider the other possible causes. Even for those with a genetic predisposition, many other things can trigger the tics/OCD etc

 

do be aware that "specialists" and neurologists and most conventional doctors tend to be either quick to give a TS diagnosis or say that it is likely "transient tics" and will probably go away and tell you to come back in a year for a TS diagnosis so dont be alarmed if that is the outcome of your visit

 

there are so many issues that can cause tics, that it would be important for these things to be investigated fully

 

we have had parents here whose children have manifest like yours who have found that food allergies are at the root of the symptoms and other have found it to be PANDAS/strep, others who feel childhood vaccinations were a trigger etc etc

 

many things to look at

 

it is a good idea to try to find a doctor who is clued up about all these other factors and begin testing and checking

 

we are all here to offer as much help as we can.

 

all the best

[dee45]

Hello,

I read your posts and alot sounds similar to what has taken place with our son Anthony. I felt after tons of research and reading that he fit the PANDAS category but it took me a year and a half to finally find a doctor who would eventaully validate this. so read everything don't leave any stone unturned. you have found a great site with tons of info and awesome people who are always willing to help. best of luck .

 

Deanna

[momofgirls]

Please check into PANDAS. My daughters symptoms did not sound like classic pandas and all strep tests were negative! We thought she had TS and ocd for over a year. Recently we found an immunologist who thought it was pandas and said there is no way to know for sure unless we treat her with antibiotics. She has been on a high dose of augmentin for 6 wks and is almost symptom free her tics were pretty bad. Also be aware that it takes time to see a difference. I saw no improvement for 3 wks and then it was dramatic. Look up Dr Kovacevic in chicago. He answers emails. Please check it out.