Just need Help Please

[mblack]

My10 year old son has been diagnosed with tourette's. A mild form grant you but TS non the less. Ever since the diagnosis and the doctor saying that it was no cure and the only options we had were with drugs that may or may not work and would have side effects, I have been searching, reading and trying to find everything possible that I could find. I have found so much that I am in a total array of confusion. Alot of what I am reading is that the tics, which he has "unusual eye blinking, rolling of the eyes, neck stretching, touching his chin to his chest, grunting, sniffing, cough, clearing his throat, smelling, talking in his sleep, sleep walking, and so on" are caused by some underlying allergy problem. I have also read about children that have had strep or some other illnesses in childhood and my son had a bad case of Mononucleouses when he was very small. He stayed in the bed for months and was constantly on medication. Anyway I am very unsure on where I should turn next. Do I get him to a allery specialist and if so what test do I seek? Do I seek out a Neurologist or what do I do? I do not know which way to turn right now and I am nearly at the end of my rope. I ordered the ebook "End Your Childs Tics Now" by Steve Driskill and basically he was telling you to stop all diary products and start giving Magnesium and this would solve the problems. I have tryed this for 15 days and the tics seem to be worse not better. Please anyone out there with any idea on helping me help my child please help.

[Dylans_Mom]

I am in no way an expert just a mother with a similar child. In my research there is no one thing that is a magic cure for all children with tics. Each child is different each has a different medical background. I believe in reading posts from several people with tics that most have some kind of sensitivity to either food, chemicals, past illnesses, or immunizations. This common thread led me to look at allergies as a possible cause for my sons problem. I read DS Nambudripad's, "Say Good-bye to Illness" This book explained how to identify your own sensitivities since each person is different in this respect. I have found this book along with NAET treatments to be useful is my son's case. What I liked about this is that the treatments are not the same for everyone they focus on your childs own sensitivities. At least by going through the testing you might learn what these are for your son. By doing so even if you don't go through the treatments you might have a better idea of what he should avoid.

 

Check out NAET.com if you are interested it explains the treatment as well as can help you find a practitioner.

 

Dylan's Mom

[Calicat]

Hey mblack,

You're in the right place! My 5 year old daughter started her second episode of tics only 6 weeks ago (throat clearing and sniffing mostly, a little eye blinking). It was up to around 30 tics a minute at some points. She has been steadily decreasing over the past few weeks, and it is MUCH less noticable now. What I did is: 1. I read through as many posts as I could, and took notes on the things that struck me as important, especially little details that I would likely forget, with an eye toward things that struck me in my daughters situation (such as specific symptoms, etc.). 2. I read Sheila's book... can't remember the exact name, but I think it's Breakthrough Discoveries in Natural Treatments for Tics and Tourettes. 3. I implemented some basic supplements... an additive free multivitamin, magnesium citrate, and multi digestive enzymes with probiotics. 4. I cut out all artificial additives, including artificial flavours, colours, and sugars, as well as chemical preservatives. 5. I started her on NUCCA chiropractic treatments (1 so far), which focuses on the top of the spine and is very gentle. Next, I will be seeing an environmental doctor and getting some testing done, hopefully for viruses, nutrient deficiencies, food sensitivities, and heavy metals. Whether she is better or not by the time that appointment comes up, I think those tests give really important information to guide our future path.

 

Of course, I'm not suggesting you follow the same plan as me, but maybe it will give you an idea.

 

As for some of your questions, lots of people here have gone to a neurologist, but I didn't bother. It seems they offer medications and not a lot else as a general rule. As for an allergy specialist... personally, I'd opt for an environmenal doctor, which does deal with underlying allergies and is open to integrative treatments.

 

From my understanding of reading many MANY posts over the past few weeks since I joined, I've found each tic/TS situation is quite different and responds to different therapies, depending on what the child's underlying issues are... these can be any combination of allergies, food intolerances, genes, triggers, illness including strept, etc. That is why testing is so important. If you know a child has a zinc deficiency, for example, you won't be stabbing in the dark with a variety of supplements.

 

Dairy may not be an issue at all for YOUR child, which is why it may not be working. Magnesium seems to be pretty good across the board, but is not an answer all by itself.

 

Check out PANDAS information-- strept infection can trigger tics. Also, although less discussed, PITANDS, which is a more general thing... illness triggering tics.

 

My best advice so far: go slowly with changes so you can track what's working and not, but also give things a bit of time to work (days to weeks). And have hope... many here have had great success!

 

Peace,

Calicat

[mblack]

Thanks Dylan's Mom and Calicat, Please understand that I am so confused right now that I can hardly remember what is what. How do I get the book "Say Goodbye To Illness"? Are you saying that you need to read this book and this is the testing that tells you what sensitivities your child has? or what test are you talking about that I need to have done to my child? Cailcat - where do I get Sheli's book?Where do I find an Environmental Doctor and what is the difference in him verses a allergy specialist? Please I am grasping a straws here trying to decide what to do and how to go about it. I have read so many things in the post from differnt parents doing a wide array of treatments that it is all very confusing. You are saying that Number 1 I try to find a Environmental doctor and make an appointment with him right? He will know what test that we should be doing right? What is PANDS and PITANDS and where do I find information on them?

[Chemar]

hi mblack and welcome

 

firstly

if you want to read an accurate book that isnt filled with hype or promises of overnight miracle "cures" then I would highly recommend Sheila's book which is available right here on Latitudes/ACN http://www.latitudes.org/book.html

 

It can also be accessed, along with very valuable info and articles on TS and tics etc, from the homepage at http://www.latitudes.org as well as pinned to the top of this forum

 

We discussed that Driskill book here before with not much complimentary to say. He is making money off gullible and desperate parents by just copying stuff he finds here and elsewhere and then claiming this miraculous treatment.

 

Just as has been commented above, be very careful of anyone who tried to tell you that there is ONE sure way to stop tics. It is a careful and individually customed treatment protocol that works best, not some one supp quick fix!!

 

Magnesium has been found to be important, but it is essential that it be supplemented in the right form, right dose and with the correct balance with other minerals, especially calcium.

 

If your child is not allergic or sensitive to dairy products there is no need to stop giving them, especially as you are giving magnesium and therefore your child NEEDS the calcium sources

 

yes, a large % of PANDAS cases are later dx even tho strep remained undx. Seem the things with PANDAS is that the strep infection doesnt always show as a strep throat. It is only once the strep titres are measured that one can see whether strep exposure has taken place and whether there are still high levels of strep antibodies in the system. Routine throat swabs wont always show this

 

I am astonished that your doctor wont "allow" allergy testing..........but then I guess I shouldnt be surprised anymore that most mainstream doctors remain clueless about the whole aspect of TS/tics/PANDAS etc and essential nutritional health. They are stuck in a dx time warp

 

Although an allergist will be able to determine if your child has food or environmental allergies, I too would recommend that you try to find an Integrative doctor (one qualified conventional medicine but also specialized in alternative med) The DAN docs (Defeat Autism Now) also frequently have experience in treating TS tics and PANDAS, as do some Environmental docs and also some DOs Even a clued up ND (naturopath) can often be very on the ball with all this

 

We have a pinned thread here that Sheila put up to try to help members find this kind of medical help http://www.latitudes.org/forums/index.php?showtopic=565

 

I would recommend that you slowly start working thru the many threads here and gathering as much knowledge and info as you can to take to the new doc, as it seems you wont get far with your current pediatrician on looking outside the conventional box for dx and treatment)

 

and keep asking questions here...we will all try to help you gather the info you need to help your child

 

best advice I can give you is ONE DAY AT A TIME and keep focussed on the light at the end of the tunnel rather than the scary darkness in the tunnel (((hugs))) to you and your child