Dr says it will never go away

[Chemar]

the immunologist (and also the rheumatologist) we saw did not seem concerned about keeping my dd on Azith. long term (multiple years).

 

I dont have research links, but will try to get them from mrsD or ask her to post about the research...but apparently there is some suggestion from recent studies that antibiotics *MAY* have negative effects on cell mitochondria. I have emphasized the *may* as I dont want to ignite panic. These are early studies I believe. I will try to get the info asap

 

 

 

Does anyone have experience with using SAMe to help protect the liver? Maybe Chemar or Kim would know more... I know it is widely used in veterinary medicine for that (help with liver dz) purpose...don't know if human medicine has caught on yet. Maybe I will ask the immunologist about that if I remember at the next visit.

 

http://www.lef.org/magazine/mag97/june-report972.html

...that is an older article...there may be more recent stuff on SAMe and liver if you google around. SAMe is also supposed to have a beneficial effect on mood...not sure about using it in tourettes or PANDAS. Something to look into I guess.

 

yes, samE is adenosyl methionine...

my son has used it as well as regular methionine for OCD/mood. he actually prefers the regular methionine and as it is so very much lower priced, we stick with that

 

and yes, samE is supposed to be good for liver as well

http://healthlibrary.epnet.com/GetContent....;chunkiid=21460

 

another excellent supp for liver is Milk Thistle aka silymarin

http://healthlibrary.epnet.com/GetContent....;chunkiid=21817

[melanie]

The prozac is for OCD/anxiety from PANDAS. She was put on it last May when PANDAS was very bad (before we discovered Azith.). It may not be totally necessary now but we are keeping her on it as insurance "just in case". Her mood is very good. I also think it helps with some pre-existing (likely non-pandas) social anxiety (nervousness about speaking to adults etc.). I think it keeps her eating better (PANDAS caused anorexia nervosa in dd) when she has these mini-episodes (when sister gets strep, when she got 5th's).

 

when danny tried a med he got a rash all over him including his hands the hospital said he had 5ths or he was allergic to the trileptial med that he tried I thought it could be strept what did your daughters 5th look like

[EAMom]

Thank you for the info. about the milk thistle. My 16-year-old dog is on a a supplement with both SAMe and Silybin in it and I didn't even know what the Silybin was until now!

 

Yes, I think it would be premature to worry much about the mitochondrial issues...and IMO it is likely that only specific antibiotics (eg tetracycline, chloramphenicol), if any, may be found to be problematic. It is ironic that my PANDAS dd was probably on antibiotics only 1-2 x in the first 7.5 years of life. Her sister (non-PANDAS, NT, healthy, no allergies) had loads of abs (ear infections). So, the thought that lots of abs caused immune issues certainly didn't hold true in my household!

[EAMom]

dd had a headache/fever which only lasted for about a day (flu like symptoms)...1.5 weeks later she developed a red "lacework pattern" on her arms and very red flush cheeks (like her face had been slapped). This lasted a few days.

[kim]

Melanie,

 

Could you describe your sons rash? How long did it last?

 

Cheri,

 

Hi Kim

 

I am not seeing grapefruit seed extract in candida clear ingredient list (I know that grapefruit is contraindicated with many meds tho)

Candida Clear has caprylic acid (magnesium caprylate), Pau D'Arco, BlackWalnut, oregano oil as main ingredients and others are cellulose, rice flour, gum arabic, garlic, olive leaf, cats claw root, wormwood, mag stearate

 

 

Melanie, as with all supplements...if taking any medications one should always check with the prescribing doctor as to whether it is safe to take them together

 

 

For the life of me I can't come up with which of those ingredients gave me a bit of concern, especially since Candida Clear is not something that you really stay on long term.

 

I do want to leave this here for others review though. I get concerned when drugs are being used that can be so touchy with variation in absorbtion. This list may not be complete. Read site for more info and disclaimer.

 

 

http://www.mskcc.org/mskcc/html/11917.cfm

 

5. Do any botanicals interfere with the metabolism of drugs?

 

To maintain the proper metabolism of certain drugs by cytochrome p450 (a liver enzyme), patients should discontinue use of the following agents. Increased metabolism of a drug reduces its concentration in the blood and may reduce its effectiveness. Decreased metabolism of a drug increases its concentration in the blood and can lead to toxicity or increased side effects.

 

Essiac: A case of decreased clearance (removal from the blood) of an experimental chemotherapy is reported in a single patient taking Essiac. This may be due to inhibition of cytochrome p450 isoenzymes, hindering their ability to metabolize the chemotherapy agent.

 

Garlic: May induce the cytochrome p450 3A4 isoenzyme, resulting in enhanced metabolism (and decreased effectiveness) of certain drugs.

 

Ginkgo: Preliminary evidence suggests that ginkgo can affect the cytochrome enzymes 1A2, 2D6, and 3A4. However, data are controversial regarding whether ginkgo induces or inhibits individual enzymes.

 

Ginseng (Siberian): Inhibits metabolism of certain medications, leading to higher medication levels in the blood, possibly by inhibition of cytochrome p450 2C19.

 

Goldenseal: May inhibit the 3A4 isoenzyme resulting in increased blood levels of certain medications.

 

Milk Thistle: Inhibits cytochrome P-450 3A4. Although no interactions have been reported, inhibition of drug metabolism may occur for several constituents (e.g. ketoconazole, itraconazole, erythromycin, triazolam).

 

St. John's Wort: Induces cytochrome isoenzyme 3A4, enhancing metabolism of certain medications and reducing their concentration in the blood.

 

Turmeric: In vitro studies indicate inhibition of cytochrome P450 1A1, which may result in increased blood levels of certain medications.

[melanie]

Melanie,

 

Could you describe your sons rash? How long did it last?

 

Cheri,

 

Hi Kim

 

I am not seeing grapefruit seed extract in candida clear ingredient list (I know that grapefruit is contraindicated with many meds tho)

Candida Clear has caprylic acid (magnesium caprylate), Pau D'Arco, BlackWalnut, oregano oil as main ingredients and others are cellulose, rice flour, gum arabic, garlic, olive leaf, cats claw root, wormwood, mag stearate

 

 

Melanie, as with all supplements...if taking any medications one should always check with the prescribing doctor as to whether it is safe to take them together

 

His rash was not bumpy it was on his chest and on his hands it wasnt itchy I dont think because he wasnt itching it He was very aggitated

 

 

For the life of me I can't come up with which of those ingredients gave me a bit of concern, especially since Candida Clear is not something that you really stay on long term.

 

I do want to leave this here for others review though. I get concerned when drugs are being used that can be so touchy with variation in absorbtion. This list may not be complete. Read site for more info and disclaimer.

 

 

http://www.mskcc.org/mskcc/html/11917.cfm

 

5. Do any botanicals interfere with the metabolism of drugs?

 

To maintain the proper metabolism of certain drugs by cytochrome p450 (a liver enzyme), patients should discontinue use of the following agents. Increased metabolism of a drug reduces its concentration in the blood and may reduce its effectiveness. Decreased metabolism of a drug increases its concentration in the blood and can lead to toxicity or increased side effects.

 

Essiac: A case of decreased clearance (removal from the blood) of an experimental chemotherapy is reported in a single patient taking Essiac. This may be due to inhibition of cytochrome p450 isoenzymes, hindering their ability to metabolize the chemotherapy agent.

 

Garlic: May induce the cytochrome p450 3A4 isoenzyme, resulting in enhanced metabolism (and decreased effectiveness) of certain drugs.

 

Ginkgo: Preliminary evidence suggests that ginkgo can affect the cytochrome enzymes 1A2, 2D6, and 3A4. However, data are controversial regarding whether ginkgo induces or inhibits individual enzymes.

 

Ginseng (Siberian): Inhibits metabolism of certain medications, leading to higher medication levels in the blood, possibly by inhibition of cytochrome p450 2C19.

 

Goldenseal: May inhibit the 3A4 isoenzyme resulting in increased blood levels of certain medications.

 

Milk Thistle: Inhibits cytochrome P-450 3A4. Although no interactions have been reported, inhibition of drug metabolism may occur for several constituents (e.g. ketoconazole, itraconazole, erythromycin, triazolam).

 

St. John's Wort: Induces cytochrome isoenzyme 3A4, enhancing metabolism of certain medications and reducing their concentration in the blood.

 

Turmeric: In vitro studies indicate inhibition of cytochrome P450 1A1, which may result in increased blood levels of certain medications.

[melanie]

Melanie,

 

Could you describe your sons rash? How long did it last?

 

Cheri,

 

Hi Kim

 

I am not seeing grapefruit seed extract in candida clear ingredient list (I know that grapefruit is contraindicated with many meds tho)

Candida Clear has caprylic acid (magnesium caprylate), Pau D'Arco, BlackWalnut, oregano oil as main ingredients and others are cellulose, rice flour, gum arabic, garlic, olive leaf, cats claw root, wormwood, mag stearate

 

 

Melanie, as with all supplements...if taking any medications one should always check with the prescribing doctor as to whether it is safe to take them together

 

His rash was not bumpy it was on his chest and on his hands it wasnt itchy I dont think because he wasnt itching it He was very aggitated

 

 

For the life of me I can't come up with which of those ingredients gave me a bit of concern, especially since Candida Clear is not something that you really stay on long term.

 

I do want to leave this here for others review though. I get concerned when drugs are being used that can be so touchy with variation in absorbtion. This list may not be complete. Read site for more info and disclaimer.

 

 

http://www.mskcc.org/mskcc/html/11917.cfm

 

5. Do any botanicals interfere with the metabolism of drugs?

 

To maintain the proper metabolism of certain drugs by cytochrome p450 (a liver enzyme), patients should discontinue use of the following agents. Increased metabolism of a drug reduces its concentration in the blood and may reduce its effectiveness. Decreased metabolism of a drug increases its concentration in the blood and can lead to toxicity or increased side effects.

 

Essiac: A case of decreased clearance (removal from the blood) of an experimental chemotherapy is reported in a single patient taking Essiac. This may be due to inhibition of cytochrome p450 isoenzymes, hindering their ability to metabolize the chemotherapy agent.

 

Garlic: May induce the cytochrome p450 3A4 isoenzyme, resulting in enhanced metabolism (and decreased effectiveness) of certain drugs.

 

Ginkgo: Preliminary evidence suggests that ginkgo can affect the cytochrome enzymes 1A2, 2D6, and 3A4. However, data are controversial regarding whether ginkgo induces or inhibits individual enzymes.

 

Ginseng (Siberian): Inhibits metabolism of certain medications, leading to higher medication levels in the blood, possibly by inhibition of cytochrome p450 2C19.

 

Goldenseal: May inhibit the 3A4 isoenzyme resulting in increased blood levels of certain medications.

 

Milk Thistle: Inhibits cytochrome P-450 3A4. Although no interactions have been reported, inhibition of drug metabolism may occur for several constituents (e.g. ketoconazole, itraconazole, erythromycin, triazolam).

 

St. John's Wort: Induces cytochrome isoenzyme 3A4, enhancing metabolism of certain medications and reducing their concentration in the blood.

 

Turmeric: In vitro studies indicate inhibition of cytochrome P450 1A1, which may result in increased blood levels of certain medications.

 

 

 

 

 

 

 

 

His rash was not bumpy it was on his chest and on his hands it wasnt itchy I dont think because he wasnt itching it He was very aggitated it lastedabout 2 days I took him to the hyospital I wasnt sure if it was an allergic reaction

[melanie]

Melanie,

 

Could you describe your sons rash? How long did it last?

 

Cheri,

 

Hi Kim

 

I am not seeing grapefruit seed extract in candida clear ingredient list (I know that grapefruit is contraindicated with many meds tho)

Candida Clear has caprylic acid (magnesium caprylate), Pau D'Arco, BlackWalnut, oregano oil as main ingredients and others are cellulose, rice flour, gum arabic, garlic, olive leaf, cats claw root, wormwood, mag stearate

 

 

Melanie, as with all supplements...if taking any medications one should always check with the prescribing doctor as to whether it is safe to take them together

 

His rash was not bumpy it was on his chest and on his hands it wasnt itchy I dont think because he wasnt itching it He was very aggitated

 

 

For the life of me I can't come up with which of those ingredients gave me a bit of concern, especially since Candida Clear is not something that you really stay on long term.

 

I do want to leave this here for others review though. I get concerned when drugs are being used that can be so touchy with variation in absorbtion. This list may not be complete. Read site for more info and disclaimer.

 

why?

http://www.mskcc.org/mskcc/html/11917.cfm

 

5. Do any botanicals interfere with the metabolism of drugs?

 

To maintain the proper metabolism of certain drugs by cytochrome p450 (a liver enzyme), patients should discontinue use of the following agents. Increased metabolism of a drug reduces its concentration in the blood and may reduce its effectiveness. Decreased metabolism of a drug increases its concentration in the blood and can lead to toxicity or increased side effects.

 

Essiac: A case of decreased clearance (removal from the blood) of an experimental chemotherapy is reported in a single patient taking Essiac. This may be due to inhibition of cytochrome p450 isoenzymes, hindering their ability to metabolize the chemotherapy agent.

 

Garlic: May induce the cytochrome p450 3A4 isoenzyme, resulting in enhanced metabolism (and decreased effectiveness) of certain drugs.

 

Ginkgo: Preliminary evidence suggests that ginkgo can affect the cytochrome enzymes 1A2, 2D6, and 3A4. However, data are controversial regarding whether ginkgo induces or inhibits individual enzymes.

 

Ginseng (Siberian): Inhibits metabolism of certain medications, leading to higher medication levels in the blood, possibly by inhibition of cytochrome p450 2C19.

 

Goldenseal: May inhibit the 3A4 isoenzyme resulting in increased blood levels of certain medications.

 

Milk Thistle: Inhibits cytochrome P-450 3A4. Although no interactions have been reported, inhibition of drug metabolism may occur for several constituents (e.g. ketoconazole, itraconazole, erythromycin, triazolam).

 

St. John's Wort: Induces cytochrome isoenzyme 3A4, enhancing metabolism of certain medications and reducing their concentration in the blood.

 

Turmeric: In vitro studies indicate inhibition of cytochrome P450 1A1, which may result in increased blood levels of certain medications.

 

 

 

 

 

 

 

 

His rash was not bumpy it was on his chest and on his hands it wasnt itchy I dont think because he wasnt itching it He was very aggitated it lastedabout 2 days I took him to the hyospital I wasnt sure if it was an allergic reaction

[Ronnas]

Hi Melanie,

 

I am not on here as much as I use to be but do try to pop in when I can. I do agree that threre is no "cure" for TS, but with time and the appropraite treatments there is lots of hope for your son. Really each child is so different and it takes time to find the right combination of things that are helpful.

 

My son is a PANDAS kid and has been on 500 mg azithromycin once a week for 4 years now. At present we are not needing to use supplements anymore. He eats very healthy and he is a active, healthy 12 year old (almost 13) and it has been at least 2 years since he has ticced, other than some very, very slight tics when he is very tired or ill.

 

My son's tics at one point were severe and debilitating, especially from the ages of 6-9 years old. It was a long road but here we are and he is doing well.

 

Don't put too much emphasis on one comment made by an insensitive doctor.

 

From your posts it looks like you are on the right track. Hang in there and with time this all gets much easier.

 

Ronna

[lmcgill]

Hi Melanie,

 

I am not on here as much as I use to be but do try to pop in when I can. I do agree that threre is no "cure" for TS, but with time and the appropraite treatments there is lots of hope for your son. Really each child is so different and it takes time to find the right combination of things that are helpful.

 

My son is a PANDAS kid and has been on 500 mg azithromycin once a week for 4 years now. At present we are not needing to use supplements anymore. He eats very healthy and he is a active, healthy 12 year old (almost 13) and it has been at least 2 years since he has ticced, other than some very, very slight tics when he is very tired or ill.

 

My son's tics at one point were severe and debilitating, especially from the ages of 6-9 years old. It was a long road but here we are and he is doing well.

 

Don't put too much emphasis on one comment made by an insensitive doctor.

 

From your posts it looks like you are on the right track. Hang in there and with time this all gets much easier.

 

Ronna

 

Just had to tell you this post has hit home to me. Our son turned 10 in Febuary and his tics were the bad when he was 7-9. His last tic (eye blinking) was fairly bad in January when his class had their late Christmas concert. Since then he has been tic free.

You can read my previous posts, but he is gluten free along with no artificial things plus he takes Bonnies Sups and Natural calm. So far it works, but this has been a long journey for me and we are still on it. It is so nice to hear these types of stories....gives everyone some real hope.

[Olivia]

Dear Melanie,

 

I just saw your post today and wanted to write. Don't listen to that doctor, there are a variety of ways to help your child. Having a doctor like that is so demoralizing, she is not supportive and encouraging. Anyway, if you go to the website:

Alternative mental health/Safe Harbor, you can find some alternative professionals who will help you with this.

 

My son developed his tics from Risperdal, a neuroleptic. There are many great supplements and methods to help your child that won't be as hard and potentially as harmful to him. I believe that brain research is fairly new and there is more knowledge all the time that will bring answers and solutions. Unfortunately I met with many doctors like yours and became very frustrated. There are wonderful people out there who will be helpful and have ideas that can really help.

 

All the best,

Olivia

 

 

 

 

 

quote name='melanie' date='Mar 23 2009, 04:08 PM' post='31249']

Hi everyone thanks for reading my post and for being here im sad today

 

Well I called the dr to ask about the tenex she raised the dossage to 3mg daily she says thats even a low dose and I should try a neuroleptic again any way I asked her when will this get a little better and she said never i ALMOST DIED i thought this would at some point get a little better should i continue with a dr whho has no hope or listen to drs who have me try a million different things maybe I dshould start him on a different diet I need instructions exactly what to do Should i have him allergy tested he has a dan dr good one should he be testing for something or should I just give into tourettes and the cursing and anger what should I do I am not any further with this then i was 1 yr ago maybe worse

 

Melanie

[Andy]

It may never go away but see a good Dan doctor for my son has been treated by us since he was two and Dan doctors since he was five and every year we have seen improvement where now most days people would never know whereas when he was around four we were told to think about home schooling or special ed classes by a neurologist,

As for Dan doctors I would recommend Dr. Berger out of Tampa. We hardly see him in person for everything is based upon test and treatment results and phone conferences. Our treatments were not to mask the tics with hard core drugs but try to find out what is causing them and to work on that.

[melanie]

Things are a little better The rages have pretty much stopped Its funny you just go day to day with ts . its hard for him I know it is and I complain about his behavior and how I feel . Im off this week so I can make some needed # to the numerous mds . Im sure the buspar is helping the rages along with the zith for the infections his ears dont hurt and ive noticed theres no wax (gross) he usually has a ton but since hes been on the zith none hummm I would love to get rid of the ocd and the cursing all together i am tring to get rid of some of the wheats I have found a bread he likes (good for school) pasta so I think i can do this do you have to do it all the way? for it to work? Hes also on sparaliacte from his dan dr any one else using it?

 

Melanie

[Caryn]

Melanie,

 

You really ought to get testing done to see what the underlying cause is-- whether it is yeast or wheat. If you can't afford testing you could try a simple technique to see if your son has an IgE allergy to wheat. Just rub wheat on your son's arm. Be sure to do it vigorously. Wait 10 minutes. If he develops a rash or hives you will know there is a wheat allergy and this would lead me to suspect there would also be gluten intolerance (inability to digest the proteins found in wheat). If nothing happens there still could be gluten intolerance/celiac (which you would find by doing a stool test, blood test, genetic test, or biopsy). Eating it could also cause an itchy mouth, swollen tongue, a tingling sensation in the mouth, a runny nose. These are all obvious signs of an IgE wheat allergy. (Not to be mistaken for gluten intolerance or an IgG food intolerance response). If your child has the above symptoms then it is quite possible they are also gluten intolerant.

 

Yeast overgrowth and gluten intolerance both have similar symptoms. Gluten intolerance can cause yeast overgrowth, but yeast overgrowth is not ALWAYS caused by gluten intolerance. If your child has gluten intolerance the treatment is 100% avoidance of gluten-- found in wheat, barley, rye, and spelt-- even oats that have not been properly tested gluten free.

 

In some cases even a little bit is problematic. For instance, I have never been tested for celiac but I know I am severely gluten intolerant. I still take regular communion instead of the low gluten (except when I feel I am under the weather and then I abstain). Yesterday the host gave me swollen glands. Today I feel better. I have always been pretty healthy, unlike my dxd son who had terrible digestive issues. He is now in recovery and we are in the process of checking his antibodies after 2 years on a strict gluten free diet. I believe the levels have gone way down based on his reactions. The doctors will tell you that it takes years to get them to go down to the normal range. So to answer your question, NO, it has to be all or nothing when you have a very reactive child whose immune system is out of whack. Your goal is to reduce the antibody levels and this takes time. Every ingestion of gluten keeps the levels elevated and this will also cause digestive and neurological symptoms. If you get consultation from doctors like Kenneth Fine of Enterolab they will tell you that lifelong abstinence is the only cure-- even in the absence of a Celiac diagnosis-- if the patient has gluten intolerant/celiac genes. These folks do not produce the enzymes necessary to properly digest gluten and it just moves around the body reeking havoc in the skin, brain, joints, etc....

 

Caryn

 

I hope my response is clear and not too confusing.

[Chemar]

the immunologist (and also the rheumatologist) we saw did not seem concerned about keeping my dd on Azith. long term (multiple years).

 

I dont have research links, but will try to get them from mrsD or ask her to post about the research...but apparently there is some suggestion from recent studies that antibiotics *MAY* have negative effects on cell mitochondria. I have emphasized the *may* as I dont want to ignite panic. These are early studies I believe. I will try to get the info asap

 

 

 

 

 

 

I wanted to follow up on this re antibiotics and mitochondria damage with the links mrsD posted at NeuroTalk

 

and what she commented

This makes more sense to me because what is coming out of the new research is that ANTIBIOTICS and other drugs (like statins), can damage mitochondria. The autism community has some interesting new studies showing vaccines may do this and antibiotic treatment for ear infections or other things that happen to little kids, often precede the appearance of autism.

The mitochondria in our cells are basically similar and actually derived FROM bacteria. So agents that KILL bacteria, may kill our mitochondria too.

 

http://www.autism.com/medical/research/adv...antibiotics.htm

 

http://www.sciencenews.org/view/feature/id...ondria_Gone_Bad