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We've tried so much to no avail


GL_Lmom
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Hello again everyone

 

I haven't posted here in months, but I regularly check the site when I can. Can anyone remember the thread discussing environmental safeguards for our kids. It discussed things such as which kinds of pots to use in the kitchen, air purifiers, floors and furnishings.

 

While my son is still on meds, I've been searching for alternatives for years. Please don't tell me the problems or dangers with the meds, as I already know. My son was/is severly depressed as a result of his TS and possibly is genetically inclined. Even as an infant, when most babies stare at faces, he seemed uncomfortable or overstimulated with eye contact - who knows. He is the most loving, empathetic person I have ever met. He can't even squash a mosquito! Anyway about the meds, I really believe they have saved his life so far, but I also know that somewhere there is a healthier alternative.

 

What we have done so far:

 

Installed reverse osmosis water filter

stopped using aluminum pans

stopped using perfumes, both bodily and laundry

tried several supplements all to no avail

tested for strep twice - 1st was negative, 2nd positive

antibiotics for 6 weeks

had the Metametrix delayed food allergy test (+casein, gluten, eggs)

went on the casein, gluten and egg free diet for 3 weeks - no change at all

Had the Doctor's Data hair analysis +lead, aluminum, arsenic

Had the SpectrCell nutritional analysis (deficient in ALA, glutathione,B2 and selenium)

No screens for several weeks 4years ago- it helped for 10 days then tics returned

No screens for a week recently - no help, and depression increased

Traveled from Florida to Chicago's Pfeiffer Center - tested borderline on metals, Mg/Zn balance, pyroluric, elevated histamine; yeast not suspected

Began their suppliment suggestions

Continued for three months with no change

 

Then my son got ill from a virus as did my husband and another son. With all three they were sick off and on for three weeks. Luke missed vitamins and meds because of vomiting for approximately two weeks as tics were progressively increasing the entire time. At this time the pediatrician did a throat culture which was negative for strep. Currently the neurologist ordered the blood test for strep. We're waiting for results.

 

Sorry so long - almost finished!

 

My son hasn't been to school in 10 days. He is constantly ticcing with eyes, neck, arms and legs simultaneously, especially when trying to do his homework which is piling up. His behavior has always been exceptional and up until now, he has been a straight a student with a few b+'s - with a LOT of parental participation in keeping focused on homework - this to the point of having no life.

 

Are there any suggestions?

 

Lastly I'm curious about something. The two books that have halped me the most are "Children with Starving Brains" by J. McCandless and "Is This Your Child's World" by Doris Rapp. But these two books don't have any overlap. I had loosely followed the McCandless book in my son's treatment, but Doris Rapp's book has a whole different approach. My question - has anyone gone the environmental allergy testing route with a physician experienced with AS kids and seen some relief. Her description of allergic tension fatigue syndrome sound exactly like my son. The muscle weakness and fatigue not usually associated with pyroluria etc. can be explained with this.

 

Again, I'm sorry about the length of this post, but our entire family is at the end of our rope. Thanks in advance.

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Hi GL&LMOM

 

so sorry your son is having such a bad time with the tics. I know all too well just how stressful it is when the tics are so sever as to overtake every aspect of life!

 

although we ran full spectrum allergy tests, my son only should allergy to dustmite and penicillin, so I dont have much experience with implementing anti allergy programs.

 

If it is any comfort, do take heart that illness really does seem to exascerbate TS symptoms, and, as much anecdotal evidence is suggesting, Spring seems to be a general time for many ailments and disorders to intensify.

 

I do hope things level out for your precious son soon

love and (((hugs))) to you

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Hi again, Chemar,

 

Thanks for the quick (and comforting reply). Did you do anything to reduce exposure to dust mites. I think I remember reading some of your suggestions before, but can't remember details. At the time I didn't think it applied to us because my son has never shown allergic tendencies. My husband sneezes 6 months every year!!

 

Yes, because this all happened in the spring is one reason I became curious about environmental allergies. I really wonder if he's allergic to the air in his school also! Can any illness cause such a severe increase in tics that continue for weeks after becoming well? It could very well be that Pfeiffer's supplements were helping more than I knew and the interruption caused the relapse. I wanted to state for everyone that we really like Pfeiffer. They have been hands on and very available when I've had to call with questions or requests. And they don't think I'm weird for persuing this avenue of treatment. :P

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GL&L mom,

 

Your efforts are amazing--so sorry for your luck so far. You really are doing almost everything that has been discussed. My thoughts:

 

1. I think you meant Cu/Zn balance, not Mg/Zn balance? What exactly were his copper and zinc levels in that Labcorp test? This is apparently a big one.

 

2. Borderline metals in the hair, generally means high metals in the tissues. Both Dr. McC and the DAN consensus paper say that kids with metal issues don't excrete them well, thus the hair readings are very often much lower.

 

3. I do have one thing that comes to mind: Yeast. Pfeiffer doesn't regularly check for it, which suprises me. I am not sure how they can say they don't suspect it. After 6 weeks of antibiotics (known yeast aggravator), and with the food sensitivities showing up, then it sure is a red flag to me. Since you read Dr. McC book, you will know that she says that progress can stop cold if there is a yeast overgrowth. It does a number of things (nutrient absorption, food sensitivities, and interferes with the metals exit from the body as the gut function is impaired). The biggest thing I would suggest for you, it would be the Great Plains OAT urine test. They have a cheaper version that only tests for yeast metabolites. Pfeiffer will order this for you if you push them a bit, they have for others. In my links thread, I posted a compelling article that Chemar found on a case study on yeast and TS.

 

4. Are you using manganese in the Pfeiffer supplement (their Primer contains it.) The doctors there don't seem to agree on whether this is too much for kids with tic syndromes. It can be an aggravator. We only do 1 mg a day vs their 7.5 mg.

 

5. What are you doing for the low Glutathione? Oral glutathione does not usually get absorbed and it can aggravate yeast as it supposedly can break down into cysteine, known to feed yeast. This will be key to long term healing. Glutathione lotion is now standard protocol in getting rid of metals. Oral glutathione did nothing for us for a year of it.

 

6. What supplements exactly were you giving? I love Pfeiffer but believe they WAY overdo it with B6/P5P for what many kids need sometimes. I am sure it varies with the doctor...What were the pyroluria levels? How much B6/P5P do they recommend? My doctor says B6 feeds yeast, and even Pfeiffer say B6 can make some kids hyper, which to me means tics can be aggravated. (And yes, if the supplements were helping with pyroluria, going off can make things worse.

 

7. Your comments on the eye contact--does it still exist? I ask because on the enzymes board I mention, the enzymes really seem to help with that. If you are no longer doing diet modification, I strongly recommend trying them for 3 weeks. Houston Nutriceuticals AFP Peptizade and Zyne Prime for overall absorption and no-Fenol for use with any antifungal. You need to do one at a time though, for a couple of weeks to ensure no reactions.

 

8. For the fatigue and depression, I would consider either an amino test test (Great Plains urine, $200) or an Adrenal Stress test (Diagnos-techs saliva $99). Caz posted a site once, and through it I read that people can mistake adrenal exhaustion for depression, and supplements for adrenal exhaustion and more sleep can really help. While you wait for testing, or if you choose not to test, I suggest trying to get your son to bed an hour or two earlier and see if it makes a difference. Even anemia can create the exhaustion, and Pfeiffer's standard test doesn't include this.

 

9. Edited: I just saw Chemar's Dr. Weil post and it reminded me about probiotics, good point.

 

My top 4:

-check out the B6 levels

-check out glutathione lotion vs oral if you are not already doing it

-check out yeast. (and a probiotic)

-check out adrenal exhaustion

 

Hope things get better. And yes illness can be a factor, but it sounds like there were issues before the illness also... God bless, I know how hard this can be.

 

Claire

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Hi all

 

Thanks, Claire, for the great suggestions. I'll try to answer all your questions.

 

Yes, I meant to say copper/zinc imbalance rather than Mg/Zn. My son's serum Cu level (Labcorp) was 65, Zn 92 while the hair analysis of the same metals were 46Cu and 150 Zn. The lead didn't show up in the blood while the hair analysis value for lead was only 1.1 this time ( 8 months previously it was 3.1)

 

I can't believe that yeast didn't even occur to me this time! I had consulted with a DAN environmental doctor about 1.5 years ago and he told me that it didn't sound as if my son had a yeast problem. So when I asked at Pfeiffer and they said the same, I quit worrying about this one. They did say they'd order the test if and when I ever wanted to. I will ask for one in the near future.

 

My son's supplements don't contain any Manganese. While he was taking the Primer, our Pfeiffer practitioner warned us that it could cause a problem, but it seemed ok. The following were recommended:

 

Vit. C - 500 mg

Pyridoxine (vit B6) -200 mg

Pyridoxal-5-phosphate - 50mg

TMG - 175 mg

Biotin - 400 mcg

methyl B12 - 4000 mcg

Calcium carbonate - 500 mg

Mg. oxide - 250 mg.

vit D -200 IU

fish oil - we had to stop this one - obvious ocd increase

vit c - another 500 mg

Zn picolinate - 50 mg

vit E - 300 IU

TMG - another 175 mg

biotin - another 400 mcg

taurine - 325 mg

AFP peptizyde - 1 cap 3X/day with meals

acidophilus

 

in addition, they just suggested no-fenol and inositol. We're waiting to receive them by mail. I probably could have purchased them in town, but I've had trouble finding supplements with no coloring.

 

Unless I'm overlooking it, Pfeiffer didn't address the glutathione issue. That showed up in a test I had previously requested (begged and tolerated being patronized for!)

 

As for eye contact, he has no problem with people he's comfortable with, but he doesn't look his teachers or strangers in the eye. I think this is a self esteem issue rather than ts

 

I have not heard of the adrenal stress test or adrenal exhaustion. Which specific amino acids does the Great Plains test measure? Our spectracell test last year, tested for a few -all which were ok.

 

Again, thanks for all the suggestions and even more for the understanding. We'll definitely request the tests you suggested. Those who post here are such an inspiration.

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I am glad to see Pfeiffer encouraging more of the enzymes.

 

The thing with low antioxidants and metals: If you don't raise the antioxidant level (in this case likely glutathione), the metals continue to accumulate. This means that symptoms don't get better, if anything they can get worse. Your son minimally has lead, aluminum and arsenic, and a negative hair test doesn't rule out mercury. We have threads discussing tests for metals, there isn't one best one, but certainly the Great Smokies elemental analysis blood test has no side effects that a urine challenge can have, so I would start there. If negative, then reassess...if you are doing antioxidants, it will deal with them anyway. Though I think your current program doesn't address it nearly to the same degree as I have seen, and I think that is worth a second look.

 

For lead detox, I know Pfeiffer likes calcium, so good to see they have that there.

 

But the glutatathione is probably the biggest antioxidant in the detox mechanism. Most here that tested were deficient. Standard DAN protocol to remove metals now has the lotion (Kirkman has it if your doctor agrees). Pfeiffer agreed I should use it for my metals (I went myself to Pfeiffer 2 weeks ago). They were also going to put me on an antifungal but I will use our DAN doctor. He is for the glutathione lotion also. Pretty universally accepted, though as always, consult your doctor and watch your child carefully.

 

I am surprised Pfeiffer didn't supplement selenium for the metals, they did for us.

 

Oral Methyl B12? Not to well absorbed. When I mentioned this to Pfeiffer they said to do the sublingual instead. We did the Solaray gum and now Natural Sources sublingual tablet to put under the tongue (nice taste). B12 deficiency can cause anemia and fatigue, but I imagine that would have shown on the Spectracell test, so you are probably okay.

 

Good to know the eye contact isn't an issue with people he is comfortable with, I misunderstood or mis "extrapolated" your comment on him as a baby.

 

The serum copper/zinc copper was .707, and .70+ is normal, per Pfeiffer. So the very low end of normal, not really so bad. And the zinc itself is okay. Actually, the copper shows below the ref range of 70-155, did they comment on this? I ask because in researching adrenal issues, you do want copper to at least be in range. I worry about this with my son with our recent zinc supplementation and am anxiously awaiting Pfeiffer's latest tests.

 

Here is the number for the adrenal stress test. I can't remember the exact URL. (425) 251-0596 It is Diagnos-Techs I think, but they can tell you. The site isn't so informative, but you can search on adrenal stress or adrenal exhaustion and find a lot of info. I strongly recommend this one for depression--it has its own requirements to be addressed. First there is adrenal stress (I imagine a ton of tic syndrome kids have this, just by the nature of the overwrought nervous system), then adrenal exhaustion.

 

As for Great Plains, go to this link: http://www.greatplainslaboratory.com/yeast.html

 

On the right they list:

Organic Acid Test (has the candida/yeast albicans metabolites--ie the yeast test)

Amino Acids

 

Both can be done in one morning urine test. We did Spectracell also, but this amino acid profile is different, only some small overlap. We just started a balanced free form amino acid tonight, wish me luck with it helping my son's fatigue, my fingers are crossed big time. Ironically, after all the testing and finding just certain ones deficient, Pfeiffer's recommendation was to get a generally balanced free form amino acid, and more protein supplement, and add Houston Nutriceuticals Zyne Prime to the mix. I am also ordering some protein mixes (Robin's recommended brands), they come tomorrow.

 

My typical disclaimer (not for you but for nonposters whom I don't know): Amino acids definitely need a doctor's supervision! They are known to feed yeast, and balances are important.

 

Fatigue/Depression can also be a blood sugar thing. My son's fatigue may be a blood sugar thing too so we are looking at Glutamine (he was just on the border there).

 

If money is a factor (depends all on your ins coverage I guess), I would rank the yeast test and adrenal stress tests as first priority. Both can be factors with the depression (yeast is exhausting), and I know as a mother that the child's happiness is the thing that is our biggest weight. You should be able to get medical input on glutathione without further testing since he was already positive, though the Great Plains OAT test will check this from another angle.

 

No one can guarantee what tests will show, but at the very least you can rule certain things out. My point is mostly that you haven't hit a dead end at all. There is a good chance that metals and/or yeast are likely factors.

 

God bless, and I especially wish you well on the happier kid part in the short term.

 

Claire

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GL and L Mom, One thing I didn't see on the list of things you have tried is eliminating artificial colors and flavors from your son's diet. Have you tried that yet? We have found (for about 5 years now), that it makes all the difference for us. I tic myself, and I know that those additives directly affect my tic level. Just some examples - if he eats colored cereals, or colored candies like Twizzlers or Skttles, colored drinks like Kool-Aid, any of those types of colored/flavored foods - that could be a big factor in his tics.

We follow the Feingold program (feingold.org), which eliminates the artificial colors and flavors, and preservatives BHA, BHT, and TBHQ. Those have been found to trigger behavioral and other problems in many people, and eliminating them has been miraculously effective.

We noticed a big difference after only a couple of weeks. Others can take less time or more time to see the change.

If you want more info, please ask, or check out the web site. There are others on this board who have found success with Feingold.

Good luck.

Jeff

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Jeff,

 

I forgot to mention it, but I did cut out the artificial colors and flavors when we tried the GF/CF diet. I didn't cut out the preservatives however. It didn't even occur to me at the time, which was careless because I react to MSG almost immediately after eating something with it. I definitely will give the Feingold site another look. Do they give you a specific diet plan if you join, or are you just told to avoid certain things? I would like to try it on the whole family. My 3 year old just started having tics in the last two months. :(

 

Claire,

 

I am going to call Pfeiffer Monday and ask about the glutathione cream. I may ask if they'll erder the yeast test, or just let me try some nystatin. I've read that it is extremely safe. Did Pfeiffer test you for a glutathione deficiency or was it prescribed because of the metal issue? They didn't seem concerned about my son's metal levels because they were borderline, as were all the crucial tests. They rated him as Cu/Zn imbalanced and borderline pyroluric even though his values were in the normal range - as you noticed. That is why your yeast idea has such merit to me. It makes sense and explains what the tests don't.

 

I'm still wondering about environmental allergies as well because when I review his history, there is always something there. His symptoms first got out of hand 5 yrs. ago when he started kindergarten. We had just moved into a new house with new carpets, paint, etc. as well. In September, our city was devastated by hurricane Ivan. There is so much mold and debris now that even normally healthy people are having severe problems. He's been getting worse all year. Our home was ok, but many places were flooded including his school, the grocery stores etc. Our yard was flooded with salt water, downed trees and debris from neighbors, but we had it cleared after about two months. It makes me wonder. Why is he getting worse right now - what else has changed?

 

My comment on his poor eye contact as a baby was just a way of saying that I recognized a difference early on even before the tics, add and ocd started.

 

Thank-you for the information on adrenal stress and exhaustion. This is something I haven't researched yet. I admire you, Chemar and the others so much for how much knowledge you gain through sheer determination!! You and everyone else on this forum are in my prayers that you continue to do so well. Your kids are very lucky. :)

 

Chemar,

 

Thanks for the Dr. Weil website suggestion. From reading it, I know I need to inquire about an omega 3 - fatty acid replacement for the fish oil which my son cannot tolerate. I wish I had your (and many others on this forum's) confidence. I just am to afraid to try anything without someone with more knowledge telling me it's ok. ;)

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GL&L

 

Great Plains showed me having a glutathione deficiency. Again, no prescription is needed if you use Kirkman's, but I know you want doctor authorization, as did I. This is a big factor. I can't believe that they are ruling out metals due to a borderline hair test. The entire DAN community discusses false negatives on those, even Dr. Walsh commented on it earlier this month when I saw him speak and he is the thought leader for Pfeiffer. I would question this and ask both about the lotion and selenium (the daily adult RDA for selenium is 50 mg I think, so maybe you can ask if there is any harm in supplementing it).

 

Yes, our DAN doctor says Nystatin doesn't cross into the bloodstream and is safe, unlike Diflucan and others where liver tests before and after are needed. If you do test, please do the Great Plains metabolites test vs any stool test--the stool test gives so many false negatives cuz yeast clumps, so hard to get a sample. We had a Great Plains stool negative and urine super super highly positive in the same test.

 

Mold is a huge thing and could actually be a big culprit for your child. I didn't see a HEPA air filter on your list but I recommend it from what you described. You might do a mold sensitivity test at some point. What a terrible consequence of the weather, one I hadn't thought of.

 

Good luck.

 

Claire

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GL&L,

When you join Feingold, they send you a manual full of info about the program. This is a reference that one should hold onto. In addition, you receive the annual Food Guide, which lists thousands of products (specific brand names) which have been researched and approved by the Feingold volunteers. You also receive the monthly newsletter which provides news articles and updates to the Food Guide. Members also have access to the Bulletin Board, which is a very active forum similar to this one where members share experiences, food ideas, food discoveries, etc. Membership is about $75 the first year, then about $45 for subsequent years.

Hope this helps!

Jeff

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Thank you Jeff and Claire,

 

Claire, I've added glutathione and selenium to my ever increasing list of questions for Pfeiffer. I plan to call them today.

 

Just a curiosity. My son absolutely refused to take his suppliments (and the loathed prescriptions) Sunday night and Monday morning. By Monday afternoon he was much like his old self. His tics while still pretty bad were nowhere nearly as continuous as he had been experiencing for the last 2 weeks. He laughed and smiled and hugged so much that I almost cried. He was responsive to everyone around him. I hadn't realized how long (months) it had been since I had seen him show happiness. He was even able to do some homework. His tics had been so bad that he couldn't hold a pencil for almost 2 weeks. I hope I don't set him back by allowing a break in supplements, but I see this as a way to start over slowly and with no meds. I'd like to experiment with diet and screen limitation again as well. My 3 year old is starting to show symptoms so this may help him, too. It's curious to me that the little brother starts showing symptoms at the same time Luke's skyrocketed. I just have to be missing something that triggered it.

 

Has anyone here had experience with a severe worsening of symptoms five months into starting a new supplement program? I don't think it could be a detox issue because we aren't really addressing the yeast or metals yet. It could have been the meds but the timing of his worsening tics didn't correspond to starting the medicine.

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GL&L

 

The tricky part is that you stopped both supplements and prescription meds at the same time--tough to know which it was? (I think the prescriptions are for tics?). The impact of meds can be cumulative. It also could be a specific supplement or two.

 

Yes, I would reintroduce slowly one at a time and see whether I noticed a worsening of mood and tics. Wait 3 days between each new supplement. (This is why I am not big on compounding initially). Maybe talk to a doctor about the meds? Don't know if cold turkey is okay--no experience there...

 

In any case, I would take this positive change seriously and try to assess what did it. (Were there any other changes?) Maybe continue for a few days (again, I can't comment on the stopping of prescription meds) and see if it continues.

 

Good luck and I hope this is the key for you.

 

Claire

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Claire

 

 

That is a good point. I was concerned about completely stopping the meds without permission from the doctor, but the change is so enormous that I decided that I'd watch for problems myself before calling. Our neurologist doesn't support our alternative efforts. He shows a bit of impatience when we show resistance to medication. I know he'd tell me to keep my son on the meds. Also, it is very hard to get a timely appt. with him. He has been working us in weekly for the last couple of weeks. I'm not ready to jeopardize that yet, just in case. Yes the meds are for tics-and depression.

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GL&L Mom,

 

I was just wondering if your son is taking Clonidine/Catapress? I have started cutting back on this and out of the blue the other night, I realized that I had been spending so much time on the vit/supp. issues, that I really did'nt know about reducing/eliminating clonidine...so I did some reading and decided I was reducing too quickly. There isn't a lot available about weaning, but if your son has been taking it for any period of time, you MUST reduce slowly. I read one account of very painful headache at base of skull. This mom said she really thought her son was having a stroke. My oldest son has been taking clonidine for about 2 years. Over a month or more or we are now down to 1/2 of the dose he was taking, and I am going to reduce this amount slowly also. Don't have any other experience with meds for this condition, but please be careful and check it out if he is going to stay off for any extended period. I suspect abruptly stopping may be harmful or too shocking to the system with others also. Clonidine effects blood pressure and this is the main problem with eliminating, avoiding spike in blood pressure. Forgive me if this is all common knowledge to you. Just thought I would share-just in case.

 

Kim

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