PANDAS vs. TS -- Supplements

[emma1]

I would love to know what supplements are being used by those who have children diagnosed with PANDAS -- especially those who are using antibiotics long-term. Do the same things work for those with TS and PANDAS? I have been guided by Bonnie's protocal and Chemar's posts, as well as many of the posts citing Dr. Murphy (thanks, Michele!). I am sure this is all somewhere in the achives, but while I was searching, I realized some of you have 50 or so pages of posts!

 

I am asking because my daughter did well for about a week off of antibiotics (she'd been on them for 20 days), but on day 7 -- pretty much back to square one! Started back on antibiotics, and within an hour (seriously!), things improved again. She is much better now again, but not totally tic-free.

 

But it makes me wonder whether any of the other things I am doing (cleaning up the diet, cleaning up her environment, supplements) matter at all (OK -- I am ever so slightly bummed right now).

 

Any help would be appreciated.

[michele]

There is a yahoo group for PANDAS. One of the posters responded to using Immune Factor Five to help with the PANDAS immune trouble. You might want to check out the Yahoo groups board on OCD where there are also PANDAS posts. Also check out some of the books mentioned on this board. Some of them discuss PANDAS and treatments. Mitzi Walsh Tics and Tourettes for sure.

Michele

 

I would love to know what supplements are being used by those who have children diagnosed with PANDAS -- especially those who are using antibiotics long-term. Do the same things work for those with TS and PANDAS? I have been guided by Bonnie's protocal and Chemar's posts, as well as many of the posts citing Dr. Murphy (thanks, Michele!). I am sure this is all somewhere in the achives, but while I was searching, I realized some of you have 50 or so pages of posts!

 

I am asking because my daughter did well for about a week off of antibiotics (she'd been on them for 20 days), but on day 7 -- pretty much back to square one! Started back on antibiotics, and within an hour (seriously!), things improved again. She is much better now again, but not totally tic-free.

 

But it makes me wonder whether any of the other things I am doing (cleaning up the diet, cleaning up her environment, supplements) matter at all (OK -- I am ever so slightly bummed right now).

 

Any help would be appreciated.

[michele]

I found another PANDAS forum site for you. http://www.careplace.com/forum/topic?id=6026&fs=0

It is here that she talks about immunefactor5. Best wishes. These forums are not as active as ACN.

Michele

 

I would love to know what supplements are being used by those who have children diagnosed with PANDAS -- especially those who are using antibiotics long-term. Do the same things work for those with TS and PANDAS? I have been guided by Bonnie's protocal and Chemar's posts, as well as many of the posts citing Dr. Murphy (thanks, Michele!). I am sure this is all somewhere in the achives, but while I was searching, I realized some of you have 50 or so pages of posts!

 

I am asking because my daughter did well for about a week off of antibiotics (she'd been on them for 20 days), but on day 7 -- pretty much back to square one! Started back on antibiotics, and within an hour (seriously!), things improved again. She is much better now again, but not totally tic-free.

 

But it makes me wonder whether any of the other things I am doing (cleaning up the diet, cleaning up her environment, supplements) matter at all (OK -- I am ever so slightly bummed right now).

 

Any help would be appreciated.

[michele]

Sorry for the post again but I wanted to give you the link to immunefactor5. This is taken from the caringplace forum.

 

 

Have you looked into Amy Yasko's protocol? Chisolm Labs has an immune

factor for STREP that worked pretty well for us.

_http://www.naturalhealthconsult.com/Monographs/immunfactor.html_

(http://www.naturalhealthconsult.com/Monographs/immunfactor.html)

 

 

I would love to know what supplements are being used by those who have children diagnosed with PANDAS -- especially those who are using antibiotics long-term. Do the same things work for those with TS and PANDAS? I have been guided by Bonnie's protocal and Chemar's posts, as well as many of the posts citing Dr. Murphy (thanks, Michele!). I am sure this is all somewhere in the achives, but while I was searching, I realized some of you have 50 or so pages of posts!

 

I am asking because my daughter did well for about a week off of antibiotics (she'd been on them for 20 days), but on day 7 -- pretty much back to square one! Started back on antibiotics, and within an hour (seriously!), things improved again. She is much better now again, but not totally tic-free.

 

But it makes me wonder whether any of the other things I am doing (cleaning up the diet, cleaning up her environment, supplements) matter at all (OK -- I am ever so slightly bummed right now).

 

Any help would be appreciated.

[Dedee]

Emma,

 

I am so sorry to hear that your daughter started to have symptoms again. You have reason to be bummed. I know what you mean about all the rest of the stuff. I do believe it probably makes a difference, but for us the huge thing was the antibiotics. I have such great respect for the mothers who go to such lengths to clean up the diet and enviornment. We have done alot of enviornmental factors due to the asthma of my middle son, but I must admit that I was hit with such resistance from my son with PANDAS when I attempted to change his diet that I backed off. His OCD was so strong at the time and he would only eat under certain situations and only certain foods and I just didn't have the energy to address that issue at the time. I know I am weak, but we pick out battles and I was so down trodden at the time, I couldn't face it. Well, now he is so much better that I haven't really needed to. It isn't like he doesn't eat anything decent. Only that he still drinks alot of milk and does have some sugar, that sort of thing. Again, I don't have the answer. I just know you have to do what works for your family. I just stand in awe of those who do the total diet change and get those great results. Really amazing.

 

Anyway, what my son takes is the following: Amoxicillin 250mg twice daily, multivitamin, cal / mag twice daily (drinks alot of milk), probiotic 30billion multi strains once daily, fish oil 1,000mg 2 in morning & 2 at night. Sometimes I add a epsom salt bath if he starts having flare ups or I may increase his cal/mag if I notice more tics. Also, I always buy the milk with acidophilus (sp?) to aid in probiotic cultures because he often forgets his probiotics since it is given seperate from the other meds. By the way, I have taken my son off of antibiotics three times and his symptoms came back within 48 hours. No kidding, you could set your calendar by it. Then within 24 hours of starting them back he would start to get better and by the second day they would be mostly gone. I just want to say to anyone who doesn't believe in PANDAS to please come live in my house. It is the most amazing thing you have ever seen (and I'm a nurse). Never in your life would you be able to convince most neurologist that an antibiotic could stop severe OCD and Tics. At least not the ones we saw. Oh well, I'll get off my soap box now. All I can say is thank God for Dr. Murphy. Hope things get better for your daughter. Keep us updated on her progress. Keep the hope!

 

Dedee

[emma1]

I just wanted to say, that because my daughter is older, I still had some questions about how and if the strep actually played into all this. Within 24 hours of going off antibiotics, I noticed a difference. The symptoms were still mild, but more pronounced. Exactly one week off, and suddenly, it just went back to symptoms as bad as we've had.

 

If I still had any doubt -- within an hour or two of taking the antibiotic, everything calmed down again.

 

I am so grateful for the antibiotic -- but it sure does make me wonder about all the other supplements I am "making" my child take (it really bothers her taking a handful of pills).

 

Michele, I am going right now to check out those websites. Thank you so much.

 

Dedee, I am so with you -- how much do you push and when do you back off? I thought these supplements were really helping, but without the antibiotic -- well, we would be a mess, I'm afraid.

[Chemar]

Emma

 

if your child has PANDAS but not TS as well, then the supplement protocol should not be the same exactly as that for TS

 

because PANDAS is autoimmune, for example Omega 6 should be avoided and Omega 3 upped, and immuno modulators rather than immune booster supps should be used

 

Until the PANDAS is better controlled (which usually means prophylactic use of antibiotics) then supplements can be limited to those specifically needed rather than the broader spectrum used to treat TS. Some PANDAS kids do have TS as well, but in many there is no TS, and tics are related to the strep effect rather than the neurological/biochemical mechanisms involved in TS

 

This is where specific testing for needed supps/dietary changes are so valuable

 

ps azithromycin/zithromax seems to be the antibiotic being most effective for many of the PANDAS cases we hear of here.

[emma1]

Chemar, Thank you so very much for the information. I so appreciate your help. I do have two questions. First, could you tell me what an immuno modulator is -- I believe zithromax is suposed to do that, but my doctor is opposed to using that right now.

 

Also, could you tell me the types of tests that would beneficial.

 

Again, I thank you so much.

[Dedee]

Emma,

 

I am so glad that Chemar responded to explain about the Omega 6 issue. Chemar, someone in a recent post was asking about that and I really could not give an educated answer on why PANDAS patients should avoid the Omega 6's, except for the dietary imbalance but I knew there was a inflammatory issue as well. Maybe sometime when you have more time you could post the full explanation on that. I know it was very informative / helpful to me in one of your long ago posts when you went through it all.

 

Emma, In regards to the antibiotics, Dr. Murphy wanted my son to stay on Amoxicillin as long as he could while it was working so well for him and save some of the stronger antibiotics in case we need them later. I really agree. As long as he is doing well, I will hold out till we need the others. Now, if he were still struggling while on antibiotics, I would be insisting on something different. She said they build up less resistance to the Amoxicillin than to anything else. Sort of a don't rock the boat while it's sailing smoothly kind of thing. She did say that the EPA and DHA from the fish oil would help the injured area of the brain heal and assist in stabilizing some of the mood issues, etc. Although his moods are pretty stable while on antibiotics, I understand the concept and feel I should do everything I can to correct any damage done by the antibodies.

 

That's just my personal experience. Everybody has different experiences with different results. Let me know how things go.

 

Dedee

[Chemar]

rushing by...sorry

basically, the short version of a complex biochemical mechanism is that omega 6 stimulates the inflammatory response via the prostaglandins...great in people who have a balanced inflamation system but not good for those with autoimune illnesses where inflammation is usually a primary factor. Omega 3 dampens the inflammatory response so good for autoimmune people.

 

Immuno modulating substances, of which zithromax appears to be one, are those that return balance to the immune system, which is hyperactive in those with autoimmunity. So one is neither boosting nor damping it with these but rather keeping it at a modulated level. Anti-inflammatory drugs (eg steroids) tend to supress or damp the immune system. Modulators keep it at an even keel.

[emma1]

Dedee, I was going to have her stay on amoxicillin, but had tried to cut out artificial colors and preservatives. The amoxil we had were pink.

 

Is your child taking a tablet, and is it pink? My husband said he was certain that there were capsules. At the time we were on 875 mg twice a day -- I am assuming she would be on much less as my doctor said the long term dose would be low dose.

 

I remember the Omega 6 discussion too -- Michele was asking about it -- her child has PANDAS and pyroluria.

 

Thanks so for your information.

[CarolynN]

I am just wondering, regarding PANDAs, if anyone has tried the below for treatment of the strep. My son does not have PANDAs but has had strep, as you will read, and this treatment was very effective in clearing the strep.

 

My middle son had a severe case of something called perianal strep over a year ago. Basically it is where strep starts growing in your intestional area and then comes out on your bottom. It is VERY uncomfortable. We had him on several anti-biotics to no avail. I started doing research on the internet and found out about a product called colloidal silver. It was amazing how quickly it worked. I sprayed it on his bottom and gave it to him internally and it went a way within days. Now with that said, it did come back a few weeks later. I then spoke to my naturopathic doctor and she told me to give him grapefruit seed extract, a probiotic, and colloidal silver two times a day for 10 days. It cleared up and never came back. The three products together are extremely effective against strep. I tested it out again about two months ago when, the same son, came down with strep throat. I did the exact same remedy with the exact same results.

 

So with all that said, I wonder if this would even close to being a possibility for someone with PANDA's without having to be on anti-biotics?

 

In regard to the colloidal silver I don't know how this would effect someone who has heavy metal problems already. It literally is made of silver so I know this can certainly be an issue for some people. That would have to be run by a naturopathic doctor. My children do not have issues with heavy metals so I have not been too concerned and I use it on a very short term basis.

 

For the colloidal silver I personally use a product called Sovereign Silver because it is supposed to be the "safest" silver product because of the size of its particals. You can do research on colloidal silver on the internet. From what I have learned it seems to be safe, but again I would not use it on a long term basis.

 

I also wanted to mention that colloidal silver has been around for years and years. The way they USE to make it, to sell it, was if you took it in very high levels your skin could actually turn a silver shade. People today actually make collodial silver from home but I would NEVER do this because you could run the risk of the silver discoloration of the skin. But the way the majority of the colloidal companies now manufacture it it takes this risk away when you take it in the correct doseages. If you do the reading and testimonials on the internet, I think you will be surprised at how effective it seems to be in combating many things including strep.

 

The grapefruit seed exact is also very powerful in fighting bacterial infections such as strep. It is also very effective in getting rid of candida in the body. If there is an allergy to citrus, then you might want to research whether this product can be used.

 

Anyhow, with so many people battling PANDA's and knowing this worked for us with strep I just thought I would throw it out there to see if anyone had any thoughts as to why this might or might not work for PANDA's.

 

Carolyn N.

[Dedee]

Emma,

 

The dose we give is 250mg twice daily and it is a capsule. However, when he had strep he took Augmentin for two weeks then switched to the amoxcillin. I am not sure if there are other ways to package amoxicillin, obviously there is. May be that you doctor wants the higher dose till the symptoms settle down then decrease the dose.

 

Carolyn, I do seem to have a vague memory of hearing someone else talking about that type of treament for intestinal strept. Many PANDAS patients will carry strept in the anal cavity and that is why it is often missed on diagnosis because doctors are only doing a throat swab and the child continues to have behavior problems because the strept is in the system and not treated. There are some medications, and I can not remember off the top of my head what they are, that can not be given with grapefruit juice and extracts. It is great to have other alternatives for our children. Thanks for reminding us of this.

 

Dedee