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Hello I am hoping that someone will be able to give me some pointers on where to go next - have been reading all the posts on here and am feeling rather confused, but also hopeful that there is something we can do to help my DS.

 

My DS is nine and a half. He has had one or two vocal tics ( throat clearing, humming) since he started school at 4 years old. In the past they have lasted just a couple of months and then disappeared. The doctor just said to ignore them which is what we have been doing. They were low level and noone outside the family noticed them.

 

Just before christmas this year he started a much louder sqeaking tic and at the same time some motor tics ( eye brow raising, left eye blinking). He was very excited about christmas and it seemed to be linked to this since it got steadily worse up to christmas and then slightly better afterwards. Going back to school however it got much worse. The squeak has now got better, but he has developed a new gulping sound and is also touching objects to his head. So overall I the tics are not improving just changing. Is the touching objects OCD or is this a tic? Is the changing tics something that happens in TS?

 

We have been back to the doctors several times and have been referred to a peadiatrician. The peadiatrician has recommended a wait and see approach saying that this might be transient tics. I am not sure what our treatment options are but I am not keen on going down the medication route. I would like to look at alternatives. We have not seen a specialist at this stage - not sure when or if this will happen or who is best to see. We are in the UK. What has been the experience of others in the UK?

 

I found it interesting to read on this forum about dairy allergy, since I have felt for some time that my son may have an intolerance to dairy. I am wondering if I need to speak to the doctors again before trying a dairy free diet, what other treatments/supplements would be suggested. I am worried about his calcium intake if I eliminate all cheese/yogurt since he hardly has any other milk.

 

Not sure if there is a history of TS in the family. My grandmother apparently had a facial tic for about a year at the age of 15 after an illness, but I don't know of anyone else.

 

I don't understand what PANDAS is? Is this something I should be thinking about?

 

I have also read on one website that there can be a link between learning difficulties and TS. My son has problems at school with memory with regard to spellings and maths so this rang bells with me. Has anyone else experienced this?

 

Thanks for any suggestions on next steps.

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Hi and welcome

 

so much of what you write could be describing my own son!

 

we do have a family history of Tourette Syndrome with its associated tourettic OCD

my son first manifest with some learning disabilities (ADD & CAPD) as well as sensory problems at a very young age and progressed to developing a rather dramatic onset of full blown TS/OCD etc just before Christmas 1999, after his 10th birthday

 

I have documented his story in the link you will see in my signature

http://www.latitudes.org/forums/index.php?showtopic=687

and recently updated it as my son is now 20yo and doing great :)

http://www.latitudes.org/forums/index.php?...=687&st=120

 

you will also find helpful threads compiled here

http://www.latitudes.org/forums/index.php?showtopic=2459

 

 

PANDAS is something worth looking into, especially if your child has a history of strep infection, but even if they havent had strep. still worth investigating

 

it is an autoimmune illness, mostly seen in children, where exposure to strep(not just strep throat) can set off an immune problem and brain inflammation, that manifests with tics, OCD,often GIT problems, sometimes rages and moods and other mental/mood/behavior stuff

 

there is also a theory that this can be symptomatic of other microbial infections eg by fungus (see many threads here on candida "yeast" infection) cold, flu, epstein barr, herpes etc viruses, and bacteria like mycoplasma, and those that cause Lyme Disease, staph etc. When I first learned of PANDAS, this other category was known as PITAND(S), to distinguish it from the strep induced ones

 

the current methods of treatment seem to favor longterm antibiotics, IVIG, PEX etc

tho I wonder if my son being on natural antimicrobials for so long has helped contain what I do believe a PITAND aspect to his TS. He had epstein barr, and some doctors believe Crohn's is related to one of the mycoplasma bacteria. He was evaluated for PANDAS by a doctor who was doing research on it, but he has no history of strep, tested low on the antibodies for it and has a genetic family history of TS

 

we have a PANDAS forum here

http://www.latitudes.org/forums/index.php?showforum=17

 

many people also feel vaccinations may have triggered these symptoms in their kids and we also have parents here who have discovered that food allergies (primarily gluten, dairy) have been responsible for the symptoms

 

and then there are the mysterious "transient" tics which likely do have a trigger, but also seem to resolve on their own

 

if I had to give one main suggestion as you start this journey it would be go as pure and anti allergen as you can in diet, supplement magnesium(oral and epsom salts baths) and a good multivitamin/multimineral/trace element, omega 3 and a natural probiotic, and try to keep his environment as clear of irritants or allergens as possible.

 

stress, excitement, exhaustion, anxiety etc are known tic triggers and yes, sometimes in TS the tics and OCD can "morph" into each other, what our doc called tourettic OCD

 

your son is also at that pubertal age where it is believed the hormones affect dopamine levels and so trigger tics in those with TS susceptible genes etc. One of the reasons more boys than girls manifest TS is believed to be that the androgens impact dopamine more.

 

well, I have rambled on!! ^_^

hope that helps a bit to get you started and that you will ask as many questions as you need to. We are all here to help and learn together. :)

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elizabeth, welcom,

Chemar has given you good advice, and it seems your son's symtoms have been mild till now? I think the first thing I would try is a dairy free diet for a couple of weeks. just my feeling that milk and dairy creates mucious which could contribute to the vocals. I actually read that in the book "Is This Your Child" by Doris Rapp, its a book about allergies and food sensitivities being found to be the cause of some kids' neuro symtoms, such as ADHD (sort of on the idea of the Feingold Diet).... It mentioned that a child had a 'mmm' sound and when they took out dairy, it went away. that always stuck with me and I can tell you that when I tried it several years back, it did help, altho over time, we did have vocal problems again despite trying to be dairy free. So what I'm saying is that its worth a try. I'd be interested to see if it had a beneficial effect. One never really knows what could help.

 

Also, could I ask if your son had any recent shots? flu shot of any kind? any vaccines?

 

Thanks

Faith

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Welcome,

 

I was going to say the same thing Faith said about going dairy free for about 3 weeks to see if there is a change. You should be able to notice something as soon as you reintroduce the milk if he is allergic.

 

I'm glad you are here and I hope you can fine great Dr. in the UK.

 

God Bless,

CP

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Thanks for the welcome.

 

Yes I will look at trying a dairy free diet - I have booked to chat to our GP about this tomorrow - we are not due to see the pediatrician again for another three months. It would be good to get DS tested generally for allergies. Not sure if they can do this for dairy.

 

I am also starting to wonder about ADHD - DS is very very impulsive - always has been. If he has some money he has to spend it - it doesn't matter on what. He cannot wait. Does this sound like an ADHD symptom? He finds it hard to bring himself to concentrate on mental tasks that require some effort. Maybe his difficulties at school are down to ADHD rather than memory problems?

 

The whole area is very confusing - I would have thought that the medical profession would have more understanding of these problems - but the attitude is one of just wait and see. Also they see the educational difficulties as being the school's problem - not a medical one.

 

It would be interesting to hear how others in the UK have found the system here, and any hints on how to progress.

 

Many thanks for your help and prayers for everyone.

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Hello Elizabeth,

 

I'm from the UK also, and it is a wait and see game if you have the transient tics. If you need help with Drs who are aware of tests for strep etc then please let me know.

 

As for the milk issue, I agree with Faith and CSP, but we went GF also. I did reintroduce milk and with a week our DD started with a mild stammer. It stopped when we went DF again.

 

Keep his diet E number and chemical free as possible - very hard in this country, and you need to start all meals from scratch (even down to stock).

All the things that Cheri suggested had a massive positive impact on my dd, and if you try Lloyds chemist they stock salts in big bags and makes it much cheaper!

 

If you need any help at all with the UK issue, then please do not hesitate to contact me. I do wish you the best and please ask as many questions as possible. I have had so much help here which makes total common sense, but very little help in the UK. Try and keep a diary to of things that you think are tiggers so you can look back on them.

 

Take good care

Jules

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  • 2 weeks later...

Hi again. Thanks for your support.

 

My DS has been on dairy free for just over a week now. I have not noticed any improvement yet, infact if anything the touching head tic is worse. His vocals are about the same. How long before we should notice any change if this is going to make a difference?

 

I have been giving him soya milk instead of cows milk and I wonder if he has a reaction to that. His rash actually seems worse on the diary free than before - I was hoping it would disappear - and he has developed a new red rash behind the knees.

 

We also discovered at a dental check up that he has an infection under one of his teeth. Its not hurting him - but could this be a contributing factor towards the tics? Not sure if we should go to teh doctor for antibiotics - the dentist just suggested leaving it unless it started to hurt.

 

Any suggestions/advice welcome?

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Hi Elizabeth

 

if a food allergy is causing the tics, you should be noticing improvement by now. It may not be dairy. And yes, soy intolerance is very common!! You may want to stop the soy as from what you are describing there seems to be a reaction

 

and yes, absolutely a tooth infection can be a tic trigger. If you notice a dramatic improvement on antibiotics for the tooth infection, you may really want to look into a possible PANDAS/PITAND link to the tics etc

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Thanks chemar

 

Have just had reults of my sons RAST blood tests for allergy to milk, egg, gluten and soya. My DS is coming out as weakly positive to milk and soya. Would a weak positive have an effect on tics? It looks like the next step is to try cutting out the soya as well as the milk.

 

An allergy to soya would explain why the new rash has appeared. Now I am looking very closely at labels I see that soya is in lots of products.

 

How do you compensate for calcium in the diet when cutting out both milk and soya products?

 

Not sure if the stress of enforcing a new diet can contribute to an increase in tics too? I am trying to cut down the amount of sugar DS is consuming in addition to the dairy but this is causing tears and anger.

 

Prayers for all.

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Hi Elizabeth

 

we found that switching from refined sugar to using a little turbinado (raw) sugar, and things like honey and stevia made significant difference.

 

there are other sources of calcium, and it is a good idea to also supplement it if you feel there isnt enough in the diet

http://dairyfreecooking.about.com/od/dairy...alciumFoods.htm

 

 

Rice milk or almond milk may be a good alternative for you to try

 

 

and yes, if he is stressed out about the changes, it can contribute to the tics

 

I would be very interested to hear if an antibiotic for the tooth infection has a dramatic improvement on things for him

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