GETTING STARTED

[lukesmom]

HEY, I AM NEW TO THIS SITE AND WOULD APPRECIATE ANY HELP AT ALL.I HAVE AN 11 YEAR OLD SON WHO HAS BEEN DIAGNOSED WITH TOURETTES AND OCD.THE NEUROLIGISTS THAT WE SAW STARTED HIM ON CLONIDINE RIGHT AWAY AND KEPT INCREASING THE DOSAGE UNTIL HE WAS ZOMBIE LIKE BUT IT DIDN'T HELP THE TICS OR OCD AT ALL.WHEN I EXPRESSED MY CONCERN, SHE WANTED TO CHANGE HIM TO A STRONGER DRUG.SHE SENT HIM FOR AN EKG AND TOLD ME WE WOULD HAVE TO HAVE MORE EKG'S IN THE FUTURE BECAUSE THE NEXT DRUG COULD CAUSE HEART PROBLEMS.NEEDLESS TO SAY I LEFT HER OFFICE AND NEVER WENT BACK! I VERY SLOWLY TOOK HIM OFF THE MEDS AND HAD ALMOST ACCEPTED THAT THERE WAS NOTHING THAT COULD BE DONE FOR HIM. BUT THEN I ORDERED THE "TICS AND TOURETTES " BOOK AND STARTED TO HAVE HOPE.I HAVE NOTICED THAT WHEN HE EATS CERTAIN FOODS HE IS MUCH WORSE.BUT I DON'T KNOW HOW TO GET STARTED.THE FOODS ARE OFTEN FOODS LIKE PIZZA OR CEREAL .I KNOW THAT SUGAR HAS A BAD EFFECT ON HIS BEHAVIOR AND ENERGY LEVEL.I WAS WONDERING IF ANYONE HAD ANY SUGGESTIONS ON WHICH FOOD GROUP SHOULD I ELIMINATE FIRST.WHEAT, MILK, ?BY THE WAY THE ONLY INSURANCE WE HAVE IS MEDICAID AND I DON'T THINK IT WILL COVER GOING TO AN ENVIROMENTAL DOCTOR. BUT IF I CAN GET THE NAME OF A GOOD ONE IN OUR AREA I WILL FIND A WAY TO PAY FOR IT.WE LIVE IN KY AND I DON'T THINK THERE ARE ANY IN OUR STATE BUT I CAN GO TO ONE OF THE SURROUNDING STATES IF I CAN FIND ONE.SHOULD I GO AHEAD AND START HIM ON SUPPLEMENTS OR WAIT UNTILL I CAN FIND A DOCTOR? SORRY THIS IS SO LONG BUT I HAVE LOTS OF QUESTIONS. ANY HELP WOULD BE APPRECIATED. THANKS LISA

[faith]

Hello Lukesmom and welcome to you.

You seem to be on the right track. If I had to start somewhere, I would start supplementation with the magnesium product Kid's Calm that many here seem to like. Please see my post below to Lisa M. for some of my suggestions. Read as much as you can from the book, and look further into the things you are interested in. Does your son have obvious allergies? If not, I would try the dietary and supplementation first. If you could afford a naturopathic doctor (most costs, if not all, will be out of pocket) I would call around to see if anyone has experience with that, but if you live in a small town, I don't know if you'll have many options with that. Again, you'll have to read read read and educate yourself. Please don't give up, you will get as much guidance as you need here.

 

May I ask how your son is doing with his symptoms since weaning off meds? Any improvement in any other area, mood, behavior? If you feel certain foods like pizza and cereal set him off, maybe going off wheat/gluten first, then try dairy. There is an elimination diet that you could research and try out. Just takes some time. These are all just suggestions to point you in right direction. Pleasle remember, there is alot of trial and error--everyone's situation is not exactly same.

 

Good Luck

Faith

[lukesmom]

Hello Lukesmom and welcome to you.

You seem to be on the right track. If I had to start somewhere, I would start supplementation with the magnesium product Kid's Calm that many here seem to like. Please see my post below to Lisa M. for some of my suggestions. Read as much as you can from the book, and look further into the things you are interested in. Does your son have obvious allergies? If not, I would try the dietary and supplementation first. If you could afford a naturopathic doctor (most costs, if not all, will be out of pocket) I would call around to see if anyone has experience with that, but if you live in a small town, I don't know if you'll have many options with that. Again, you'll have to read read read and educate yourself. Please don't give up, you will get as much guidance as you need here.

 

May I ask how your son is doing with his symptoms since weaning off meds? Any improvement in any other area, mood, behavior? If you feel certain foods like pizza and cereal set him off, maybe going off wheat/gluten first, then try dairy. There is an elimination diet that you could research and try out. Just takes some time. These are all just suggestions to point you in right direction. Pleasle remember, there is alot of trial and error--everyone's situation is not exactly same.

 

Good Luck

Faith

Faith, thank you for replying to my post.Please be patient with me ,I am just learning to post on this site so if I send you something twice I am sorry. Now, as for how lucas is doing,after the meds he is back to his old self.He is never tic free . But he is a happy child.He no longer sleepy and easily upset.We have always home-schooled our children so he has never had to face the issues that some kids do.If he is having a really bad day we take a break and come back later.Somedays he can't concentrate at all.As he gets older and is doing more group things it is starting to bother him more.but since he has always been loved just the way he is ,he doesn't have alot of self-esteem issues YET.I live in a very small town.As a matter of fact his primary doctor told me that other than reading a little about it in medical school she had never really heard of TS.I had to insist on the neurologists visit. By that time I already knew it was probably tourettes.But since that didn't turn out so well I am off on a search for more help.I will start him on the supplements you suggested as soon as I can find them.There is one thing in his past that sticks out in my mind and maybe someone can tell me if it happened to them,He used to get sores in his mouth on his tongue.I took him to several doctors but they all would just say not to worry about it,some kids just get canker sores in there mouth.they were very painful for him.They looked awful and were white to yellow color.They would almost always happen in the fall or winter months.Anyway it may have nothing to do with his TS but I don't want to overlook anything Lisa

[Jeff]

Hi Lukesmom, We have had great success reducing tics by eliminating artificial colors and flavors from our diet. For example, if you son eats cereals such as Trix (lots of pretty colors!!) or Lucky Charms, or candies like Twizzlers, M&Ms, Skittles, etc., those are full of artificial colors, like Red #40, Yellow #5, etc. Many people react to those additives in different ways. If we keep those out of our diet, we are virtually tic free. Look at the labels on the foods he's eating, and look for those colors. Try to find all-natural substitutes for any foods with artificial colors (and flavors). There are a lot more choices out there now than there used to be. If you have a Whole Foods nearby, that's a great place to shop for all natural items.

Good luck.

[Cum Passus]

Hi, Luke's mom

 

I just wanted to add he may be going through puberty, and try not to get frustrated if you don't see results right away. I think my son really had a hard time with the TS at 12 because his body could not handle puberty/shots/stress form starting public school.

 

Last year I was taking all the suggestions from this sight, and it seemed not to help at all. I really found that the lab work has helped because I can see what my son needs. I really notice a change when I give him vit. he needs.

 

I don't want to be gross, but I have noticed since my son takes so many epsom salt baths, and he is not shy about walking around me with no clothes on. That his body is showing a lot of hair growth that seems to have sprung up overnight. I don't know if that is helpful, but it just seems like he has made it over a hormone hurdle these last few months. (just something to keep a look out for, or your husband if he is shy)

 

Plese keep us posted I know so many parents with young children would like to hear how your son is fairing through puberty. I'm sure it would give them a good idea of whats coming down the pike in a few years.

 

C.P.

[LisaM]

Hi, Luke's mom

 

I just wanted to add he may be going through puberty, and try not to get frustrated if you don't see results right away. I think my son really had a hard time with the TS at 12 because his body could not handle puberty/shots/stress form starting public school.

 

Last year I was taking all the suggestions from this sight, and it seemed not to help at all. I really found that the lab work has helped because I can see what my son needs. I really notice a change when I give him vit. he needs.

 

I don't want to be gross, but I have noticed since my son takes so many epsom salt baths, and he is not shy about walking around me with no clothes on. That his body is showing a lot of hair growth that seems to have sprung up overnight. I don't know if that is helpful, but it just seems like he has made it over a hormone hurdle these last few months. (just something to keep a look out for, or your husband if he is shy)

 

Plese keep us posted I know so many parents with young children would like to hear how your son is fairing through puberty. I'm sure it would give them a good idea of whats coming down the pike in a few years.

 

C.P.

 

C.P. what lab work do you get done that tells you what vitamins he needs?

 

Lisa

[Cum Passus]

Hi Lisa,

 

SpectraCell labs determined functional deficiencies in B12 and Magnesium. Also antioxidant fuction, he was average in that, but his Dr. wanted a higher percentage.

 

Analytical labs did hair. He was found to be copper toxic, sensitivity to ingestion of carb & sugar. aluminum was high. That test also gave me a dietary profile for him. His metabolic typing is a fast-mixed oxidizer.

 

The test I found most helpful was Metametrix Organix comprehensive profile

 

The test looks something like this.

 

Summary Of abnormal results:

 

Nurtient Markers Findings Intervention options common Metabolic association

 

FATTY ACID

Adipate high Carnitine, B2 Fatty acid oxidation

 

 

B-COMPLEX VIT

Xanthurenate high B6 Impaired Trypotophan metabolism

 

 

Cell regulation

NEUROTRANSMITTER

Quinolinate high magnesium support Receptor agonist

 

 

Yeast/Fungal

no abnormality found

 

 

There was alot more, but just gave you an idea on what it said. This on really helped me understand the neurotransmitter markers and even though my son was not deficient in B6 his body needed more then the daily rec.

Hope that helps,

 

C.P.

[Cum Passus]

Lisa when I added the post it did not put it in the form I typed it out.

 

I'll try to show you in a different way

 

Fatty acid (adipate) findings (high) intervention options (carnitine, B2) common metabolic association (Fatty acid oxidation)

 

B-complex (Xanthurenate) findings (High) intervention options (B6) Common metabolic association (Imparied trypophan metabolism)

 

Neurotransmitter metabolism markers (Quinolinate) findings (High) intervention options (magnesium Support)

Common metabolic association (receptor agonist)

 

Yeast/Fungal (no abnormality found)

 

Hope that was easier to understand.

C.P.

[LisaM]

Hi again C.P

 

Thanks for all that detailed info! Could you tell me where to start with all that? Where/who do I go to for all that testing?

Lisa

[Cum Passus]

Lisa,

His Intergrative Dr. ran all these tests. The tests were really not that much money, I think it was around $500 total for all three. We had all three done at the same time, so I got all the results on the same day.

 

She was talked with me for over an hour to help me understand what I was reading, but to tell you the truth I was helped by the people on this forum more. So keep asking questions someone here will help you if I didn't get it right.

 

I believe it was money well spent.

 

Take notes maybe someone else has a good lab co. that did theirs, and you can take all that info to your Dr. too.

 

C.P.

[LisaM]

Hey C.P.

 

Thanks for being so patient with me. I am sorry to be so thick about this but when you say Integrative doc, I mean, do I do a search under Integrative docs? My chiro gave me a name of an MD who is also holistic- is that what you mean? I guess I just need to know how to find a doc who will run tests. I've learned of an environmental doc and a naturopath.......

 

Lisa

[Cum Passus]

Lisa,

 

I know what you mean. That was part of my problem I didn't know where to start or fine Drs. His Dr. fell into my lap. I was at the health food store and they gave me her card.

 

I just looked in my phone book and could not find her under any health or well being medicine. In fact there was no one listed. She is not in under her last name either.

 

Could someone else jump in hear and help Lisa with this question.

 

If you have a health food store or stores close to you ask if they know of a good Dr. It did help me because they really liked this Dr. And she is very very sweet, my son loves her. She is the one who gave us the name of the farm for raw milk, gave us restaurants in the erea to eat at. Books to read, and websites.

 

I hope that was alittle helpful. It sometimes feels like pulling teeth to find Drs.

 

C.P.

[Chemar]

Hi Lisa

 

an Integrative doctor is one who is a regular MD who has gone on to specialise in alternative medicine

 

I think they usually have MD PA on their name

 

naturopaths and homeopaths may but are not always also MDs

 

Other docs who sometimes can help are DAN (Defeat Autism Now) as well as Environmental Doctors and DO's

 

finding them is hard and sometimes searching specifically for the doctor type on google can be the best way

[patty]

Welcome Lisa,

 

I agree finding a dr. is very challenging. As CP pointed out, some of them aren't even listed. CP is right, one of the places to go for referral is at your local vitamin stores.

 

As for me, i use the computer and alternative practioners for referral. For instance, if you know of a good acunpuncturist or chiropractor..., they might know of a good alternative doctor. There seem to be a network of these doctors that are not listed in your local phone book. Also, there is a publication called "Natural Pages" that i believe Faith had mention is another good source.

 

Good luck! It may take awhile, but you will find a doctor.

 

Patty

[lukesmom]

Welcome Lisa,

 

I agree finding a dr. is very challenging. As CP pointed out, some of them aren't even listed. CP is right, one of the places to go for referral is at your local vitamin stores.

 

As for me, i use the computer and alternative practioners for referral. For instance, if you know of a good acunpuncturist or chiropractor..., they might know of a good alternative doctor. There seem to be a network of these doctors that are not listed in your local phone book. Also, there is a publication called "Natural Pages" that i believe Faith had mention is another good source.

 

Good luck! It may take awhile, but you will find a doctor.

 

Patty

Hi, I was wondering if someone could explain the purpose of the epsom salt bath.I can not find any info on it. thanks. lukesmom