1 Year follow up doctors visit tomorrow! No improvement

[Vanessa2]

I have never posted but I have been reading ALL your posts for the last year...which is when my 6 year old son started his tics. I feel like I am back at the beginning again...feeling all the same emotions that comes with this all over again! Yuck

 

For the most part of the beginning I was looking for information. Last May we went to a holstic nutritionist. For the past 4-5 months we have been wheat, dairy, soy and corn free. We have always been aware of processed food and food dyes\additives so that was never an issue and we eat organic. My son completed an 8 week program of dietary supplements in what I would say were at the mega detox dosages. He was on a detox factor, ZMA, Quercetin, homeopathic drops, probiotics and psyllium (i may be forgetting some). At times just taking the supplements alone caused him a great deal of stress.

 

So needless to say we are at the one year mark for what I feel was the beginning of his tics and they are no better. I can't say we have ever really seen an improvement in his tics. I would say they have changed in there manifestations. However, family has mentioned at times that they don't notice them but of course I am like a hawk and know what to look for. Also, I have not been able to find a specific connection to any particular food. However, he has consistently had symptoms while eating as well as bedtime stories and in the car at times.

 

We had a blood and urine test almost one year ago which found low Vit D, mercury 10.0 nmo\L (0.0-18.0), high Urea and AST, Albumin 51 G\L (35-50), IgE high 132 (norm less than 75 KU\L), lead o.10umol\L.

 

So...I am scambling (got a cancellation appointment for tomorrow) to get together another list of tests to have my alternative MD do for us as well as repeat what was already done. We did not test for strep so that was at the top of my list (at one time he seemed to have to pee a lot...but that seems to have subsided), would that be to late? Soooo sorry for the time crunch but any information would be great!

Thank you.

[lurker]

Vanessa,

 

I don't have much to contribute, but maybe test for food allergies. I see you eliminated the most likely culprits, but maybe your kid has an undetected citrus or banana allergy? Maybe something you are feeding him more of now that you have removed all those other foods.

 

The eating/bedtime story/car seat has come up here several times. That seems common to me; that's when I saw them the most. My thought on that is that all three activities require our hyperkinetic kids to come to a near stop and settle down, usually after a period of high activity. This certainly isn't a cure, only an observation, but giving my son gum in the car stopped it, and giving him crushed ice during story time stopped it. It gave him something to do to keep busy during the transition.

[Chemar]

Hi Vanessa

just wanted to encourage you that the one year mark really is just a loose parameter set by the med profession as a guideline

 

detox itself can also be a tic trigger until the yuck stuff is out of the system

 

I did not see magnesium in that supp lineup? most people find it to be THE main tic reducing supplement, especially for Tourette tics.

 

my son has genetic TS and the only foods that trigger more tics for him are chemical/artificial food additives.

He does have many environmental triggers tho

 

 

 

I hope you will persevere with nutritional supplements and maybe try adding magnesium to the mix and see if you notice improvement. How about epsom salts tubs, footbaths or creams? have you tried those? Acupuncture?

 

praying you will not lose hope and keep searching for that light at the end of the tunnel

[Vanessa2]

HI Chemar

Thanks so much for your reply, you and I actually corresponding last year via email when I was feeling so much despair.

 

We are really quite diligent about keeping the chemical\artifical foods away. So they may be a possible trigger but I don't think they are now. We have used epsom salt baths and a for a short while kids calm but not consistently. Actually, both the detox factor and the ZMA contain magnesium. Our first go at my sister-in-laws TCM clinic had him in tears as soon as the first adn only needle went in. So we have not re-visited acupuncture again. I will often adjust his upper cervicals as I find there is a lot going on between the occiput and C1-C2. I often wonder if what I find in his neck is due to all his tics that seem to come from the nose and throat.

 

In terms of environmental triggers, he seems to wake up with a stuffy nose (one of his tics is snorting). Maybe there is a dust allergy.

Yes, I am totally sticking with this and only wish I had done all the tests besides the standard blood\urine...so now I will be sending out to immunolabs and such.

thanks again!

[Caryn]

Vanessa,

Ditto on Tami's thoughts as far as food allergies go. It took a good nine months for us to see an improvement in my son and much of that is due to my learning about his severe corn allergies and all the foods that corn manifests itself in. (Like powdered sugar, dusted on cheeses, sprayed on fresh fruits, included in toothpastes, in vegetable glycerins (vanilla flavoring), as an ingredient in most citric acid, and as a food substance for xanthan gum.)

You may not be dealing with a food allergy, but if you are you may have to get pretty strict for a while until the immune system calms down. My son can now tolerate minimal doses of corn byproducts without a reaction but at his worst he was very reactive to the slightest dose of anything. I used to feel that if the wind blew up the corn fields near our house that he would tic. Not so anymore. It is that 'bucket theory" again.

Definitely rule out the strep.

Also read up on the metals issues. In our case that wasn't a factor (save the copper issue).

Vitamin D deficiency is a biggie and can lead to an immune system problem so it is good you found that out and are treating for it.

Magnesium is great, as Chemar says, but tryptophan may also be missing component as you are doing dairy free. I read about that a while back and it clicked with me. We now supplement with it and my son is doing fantastic.

Caryn

[lurker]

Caryn,

 

Have you ever researched local honey? It's supposed to be like nature's version of an allergy shot. I only mention it because you live close to corn fields.

[ilovedogs]

One of the mom's on here got relief for her child by cutting out salicylates like tomatoes, citrus, and other fruits/juices. Look these up online and compare them with your child's diet. Just another suggestion I remember seeing helping a member. We saw no help from cutting these things out but I know it's part of Feingold and I thought I'd suggest it.

B

[Vanessa2]

Thank you all for your responses. I have read about the salicylates, gluten intolerance and night shades...probably most of the issues we have all become aware of through this fourm and researching. I think I was feeling somewhat defeated as we saw no real changes. Before I decided to get carried away with something like eliminating gluten, I decided to take a step back and get some more tests done that are not conventionally available. Soooo, I spoke to immunolabs today and am looking forward to making use of there IgG and IgE tests and will take it from there. I suppose the only downside is that for the purpose of testing we have to allow the wheat and dairy etc...

Here is an interesting site, it is based on canines and the GFCF diet...he takes about viruses being the cause of various illnesses\ autoimmune and otherwise. http://dogtorj.tripod.com/id107.html

thanks again and any info is always welcome!