Ready To GIve Up

[kimwal]

My son age 10 has severe Ts. ADHD, and OCd.

We have tried almost every med. and every alternative treatment I know of. These natural treatments we have done are

different vitamins, minerals, Bonnie Gr. Ts plus , chelation, treated for leaky gut,

did a sugar casein /gluten free diet for about 2-3 mos.

lets see what else.....magnesium, zinc, cleaned up his diet, and nothing worked to help him.. The meds don;t work hardly either. He has severe vocal tics, and he is just sooo hyper. He is also starting to loose friends

We are currently trying something called Ambrotose by Mannatech. He ahs been doing this for about 2 mos...no change in that either. Ambrotose is a blend of special sugars(good not bad) that cover and repair cells helping them to communicate and function in a healthy way. Also, antioxidant, probiotics and enzyme blend

We have done the vitamin mineral testing nothing really significant showed up.

I am ready to give up on all this natural stuff. I know that it works for others but why won;t any that I've done help my son?? Why else is there to do, that might help...of course pray, and I do that every day too.

Whats left??????

[Frank_Sm1th]

kimwal-

 

Do you know if your son has P.A.N.D.A.S. ?

 

Frank

[kimwal]

my sons doctor thought so... his tics started after strep... we felt so sure it was... after a very long and prayful consideration and testing that showed that there was still strep antibodies(something like that) anyway after alot of consulting, testing , praying our doctor suggested the treatment they had used for pandas oh gosh , its late and I cannot think now I;m so tired, but you know the drip you have to go into the hospital to receive the one the nimh was doing, it did not help either. This was a very hard decision to have to make because I know that it is still not used or guaranteed It was not the plasma exchange but the other one...

....I just feel like quiting meds, since there not helping him either and all the natural stuff too.... Maybe I jsut need to quit trying and just except this.......I just hate seeing him suffer so much.....

Do you still think it could be pandas??

My sons doctor still thinks there is an association.... he wants to work on building my sons immune system...

I 'm just so very tired, and feeling hopeless...

[Guest Guest_efgh]

Kimwal

 

Do you have a family history of TS? At what age was your son diagnosed ADHD? did you try any ADHD medications then since ADHD medicines sometimes TRIGGERS tics?

What are his vocal tics that are severe? does he have motor tics too?

 

Please don't give up. You will definitely find a solution soon.

 

goodluck.

efgh

[Claire]

Kimwal,

 

You have done a lot of diagnostics so far, which is great. Can you provide more information:

 

1. Did you do thorough IgG (not IgE) food allergy testing, e.g. of the 120/150 items. If your child is still being exposed to things he is allergic too, his gut won't heal fully and his immune system will be suppressed. Gluten and Casein are great choices to elminate, but other Foods can exacerbate tics and ADHD.

 

2. What about testing for and treating for yeast? You don't call that out specifically. Dr. McCandless says that yeast issues can stop progress with this type of issue

 

3. Comments on the vitamin test and the antioxidant blend. What type of vitamin and mineral test? Our DAN doctor used the Spectracell test, which tests at the cell functional level both for vitamins and antioxidants. It uncovered deficiencies/issues that another test showed as normal. As for the antioxidants, do you know if it is the right mix for your child? e.g. did you do testing for which antioxidants he was low in? The way my doctor explained it, they are so interrelated that if you don't have enough of the one you are deficient in, you either can't make the others or they don't function properly.

 

4. What probiotics do you supplement with? For example, I always looked at acidophilus, but after testing, my DAN doctor found my son and I were low in Bifidus.

 

I think it is tough to do all the other treatments with your son on meds because in some cases the meds themselves are causing problems. I am not sure what kind of naturopath or doctor you see. Did you look at the list that Sheila provided at the top of this forum? I recognize your name, but don't remember how you found your doctor.

 

I have also bumped the list of tests that we had run, so that you might compare to what you did.

 

Good luck. By the way everyone, I am leaving town for almost a week (mostly business). I will see you when I return.

 

Claire

[Chemar]

hi kimwal

 

I am so sorry to hear of your stress right now.

 

I have just a few pointers that may help....

 

PANDAs is usually treated with antibiotics

I am not sure what the "drip" treatment is in hospital that you refer to.

Ronna is our PANDAs person and if you like I can put you in direct contact with her.

 

 

Also,

it is generally found that, even tho a vitamin/supplement routine is always good, the benefits are DRASTICALLY reduced if the person is still taking meds.

This could well be why you arent seeing much improvement with the supplements, if you are still on meds.

 

I notice that you only refer to your child's vocal tic and hyper behaviour...are there motor tics too?

 

Have you had any testing done for heavy metals, especially Mercury?

 

 

Is your son on any of the stimulant medications for hyperactivity

as efgh has pointed out, the meds used to treat ADHD frequently CAUSE TICS!

 

Finally

have you had your son tested for pyroluria?

Often this can be the underlying cause of tics and other problems.

 

 

kimwal....please dont give up!

your solution is probably at hand...it just needs a bit of refinement.

 

We have found that the natural treatment we are using with such amazing results is truly holistic, in that it is important to maintain health in all areas.

 

All the supps in the world arent going to help enough if my son still eats artifical junk

or has a yeast flareup

or infections like strep

or heavy metal buildup

or if any of the other things that are known tic triggers are impacting his wellbeing.

 

It is so very important to maintain this balance.

 

Something is clearly a major factor in causing your son to have such a poor response to the good things you are doing for him....so the important thing to find out is what.

 

have you read Sheila's article on tic triggers?

here is the link

http://latitudes.org/articles/finding_triggers.htm

 

These are just some thoughts I had while reading your post.

 

I will be praying for you kimwal....that God will shine light on the areas that need to be taken care of to help your precious son

 

please stay in touch!

it is so important to have an outlet like this for your feelings and frustrations

God Bless

Cheri

[Guest Guest_efgh]

Chemar,

 

I am really moved by the contents of your post. I guess we are all lucky to have found latitudes since it contains JUST CARING, LOVING AND SUPPORTIVE PEOPLE. KEEP IT UP AND KEEP SPREADING SUCH ENCOURAGING WORDS.

 

God bless.

 

Kimwal, please keep in touch and we all are praying for your son!

 

efgh

[Jennifer]

Kimwal,

 

I'm on the forum briefly this morning and onl have a couple of seconds so this post will be short, I'll get back on later this afternoon, but has your son been tested for an amino acid deficiency? Amino acids can be very critical with neurological disorders. Also, how long have you given natural supplements a try? We didn't see big results with our son until about after a year. It can take quite a while to correct nutritional imbalances.

 

Like Chemar said your protocol may just need some refinement. Also if gluten and yeast are an issue, the stomach takes a while to heal so that it can assimilate the supplements and nutrients you are giving your child. If the stomach doesn't work right the whole body suffers.

 

Hang in there!!!!

 

Jennifer

 

P.S. Make sure there isn't any aspartic acid used in any of the supplements you are using. Our son had a relapse about a month ago and then I realized his iron conatained asparic acid, a BIG NO NO for tics!!!!!!

[Guest Guest_efgh]

Jennifer

 

That is interesting about aspartic acid ... Never knew supplements had it and that its a big no no for tics. What about stearic acid which is there in SO many supplements?? Which iron supplement had aspartic acid?

 

some of the supplements that I give my son has stearic acid, cellulose , etc and was hence concerned.

 

thanks.

[Ronnas]

Kimwal,

 

Feel free to e-mail me if you want to talk. I have talked to other parents on the phone as well if you need someone to talk to.

 

The IV drip you are talking about is IVIG treatment. I know some other parents who have had success with Plasma Exchange. Have you talked to your doctors about this? When you treated your son for strep did he show some improvement? What was the antibiotic used? For my son he responded well to Keflex and Clindamycin but had no response to Pen Vk.

 

I understand your frustration. Last fall I felt so overwhelmed and just completely done, not to mention EXHAUSTED.

 

So last Novemberish with the help of our pediatrician we stopped Kurt's meds...this took about 2 months. Believe me there were plenty of times I wanted to go back to the meds back but we stuck it out. I feel like it was January before we had a good "picture" of where Kurt was at. With school finishing it may be a good time to go med free if this is what you and your doctor decide. Then I did a food elimination diet. Not just casein and gluten. We discovered that milk, eggs, corn and chocolate were a problem. The corn surprised the heck out of us and it is in EVERYTHING.

 

Then I started adding vitamins one at a time so I could tell if my son was having a bad reaction to something etc. For example, about 8 months prior to this I had tried giving bonnie's vitamins and the fish oil to Kurt and something about it seemed to set Kurt off behaviorally so I quit. When I added everything one at a time I realized it was the fish oil Kurt was reacting to. So now he does very well on bonnie's vitamins and a different EFA which is low in fish oil.

 

Then after a few months of the vitamins/diet we started dealing with yeast and gut issues.

 

I will tell you a year ago it was like I was running around like a chicken with my head cut off looking for answers. It was not until I took a deep breath and did everything one at a time did we start seeing improvement.

 

I will tell you what I have done for myself in the last six months which has made a BIG, BIG difference.

 

1. The most important thing was that I started getting a minimum of 8 hours of sleep a night. ie. I got off the computer at a decent time. I am a changed person and seriously I was extremently sleep deprived for about 2 years...this is not good for you and last fall I was feeling crazy and absolutely terrible. I use to be up on the computer till 1:00-2:00 AM each night and then up with the kids about 6:30 AM. Although I still have moments when I wish I had more time for the computer and my search for answers...we have all done just fine.

 

2. I started eating really healthy. I really like the south Beach diet. It is heart healthy which is important to me. I have eliminated carbs and I feel so much better and I have way less PMS.

 

3. I started taking some vitamins etc.

 

4. The last few years have been very stressful for my husband and I and our marriage has suffered because of it. We have begun to rebuild our marriage and family life and I will tell you it is the best thing we could have done for our kids...they are much more relaxed the more they see us relaxed. Basically I needed to start spending time with my husband...ie. he did not want to look at the back of my head anymore as I typed away on the computer or watched TV.

 

I know all of this is hard! It is time to take a deep breath and start over with the priority being to take care of yourself before you try any more treatments for your son. Once you are rested then it is so much easier to focus on making the right decisions for your son.

 

I still have rough days but nothing compared to a year ago. Even this morning I was completely exasperated with my son but because I react to it all differently now and I am not so overwhelmed things are pretty calm and my son does better because of it.

 

Take Care,

Ronna