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PANDAS


Guest Elise

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I am new to the board and am the single mom of a an 8 year old boy who has Tourettes and I suspect PANDAS, among other issues (SID, CAPD, chemical sensitivity, dyslexia, visual processing problems, etc). I have a background (retired) as a holistic health professional and have been using alternative methods with him since birth. It was apparent then something was wrong and we identified extensive (universal reactor) allergies at age 6 days and we went from there. It turns out he had mercury toxicity from in utero exposure as well as other issues. I suspect he may have Coxsackie from in utero exposure (haven't tested yet) and I have read this can be implicated in tics. I would be interested in any information anyone might have on a possible connection between this virus and TS.

 

I am very aware of environmental triggers since I have MCS myself and we have done P/N testing, Doris Rapp protocols, etc. We have done Feingold (very important), gfcf diet, DMPS chelation, various supplements, vision therapy, Tomatis, and so forth. We've done all sorts of leaky gut and gut health treatment. He is currently under the care of a DAN! doc. We were not able to successfully complete chelation because of genetic problems with detoxification pathways causing adverse reactions (porphyria).

 

Because of his lip smacking/lip licking tic, my son regularly gets impetigo. After years of treating infections with natural remedies, I finally resorted to antibiotics and have noticed a DRAMATIC improvement in behavioral symptoms and tics. He finished this last round of amoxicillin several days ago and has gone downhill rapidly again since he has been off. He's getting another impetigo infection. To someone who used to be completely opposed to antibiotic use, this is an interesting development.

 

I am interested in specific (as opposed to general) advice/information about alternative treatments for PANDAS. We know my son has immune suppression but so far there hasn't been any way to ameliorate this problem and I am not convinced general strengthening of the immune system is a targeted enough approach at this point.

 

Being very aware of yeast issues, I am somewhat hesitant to embark on daily antibiotics, yet quality of life on them is dramatically improved. My son has severe oppositionality (and cannot attend regular school) that all but disappeared on 500mg bid of amoxicillin. The tics diminished in intensity somewhat as well.

 

Is anyone aware of natural treatments effective against the strep component of PANDAS?

 

Thanks very much.

 

Elise

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Hello Elise-

 

Like you, I was opposed to treating my DS, 10, with antibiotics. But I think the amoxicillin does more to help than any other treatment for PANDAS. There are natural things that kill strep. Garlic is the one I've been consistant with, raw and cooked. I slice up and boil a few cloves of garlic around bedtime and we eat them; he also drinks the water it boiled in, swishing, gargling and swallowing it. Hopefully this kills strep that may lurk in his mouth/gums, throat.

 

We eat fairly natural foods; Feingold was a big step for us 2 years ago; it worked so well we've mostly stuck to it.

 

The supplements calcium, magnesium, zinc , EFAs, B vits etc. help w/tics & OCD a lot,

but we just started on digestive enzymes while I read "Enzymes For Autism" and they're definately helping, but I think we now have to reduce some of the supplements. I wonder which ones.

 

We're afraid of strengthening his immune system to attack strep because those antibodies will also attack his basal ganglia. So, the way I see it, the question is: what kills strep and how? If it provokes him to produce anti-strep antibodies, how can we protect his brain from those antibodies? I'm not a doctor, so this gets way over my head fast. Garlic is kills strep. Now that he's using digestive enzymes, we'll be looking for more strep killers and will keep a close eye on this thread.

 

Good luck,

Frank

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Hi Frank and Eloise,

 

Frank - first I am amazed that your son eats garlic on a regular basis! I had not heard about strep and garlic - interesting. Would you mind telling me a little about your PANDAS experience - or point me to a thread that would give me some info on your situation - I am always interested in hearing how things played out for others with PANDAS, and how their kids are now doing. I have written a lot over the last few months under New Here - am I correct that your son is not on any antibiotics prophylactically? How long had he been on antibiotics? Any info would be appreciated. Any PANDAS outbreaks?

I initially did not want to start any supplements for the same reason you state, for fear of increasing the immune system in a way that would cause the antibodies to attack the basal ganglia. We eventually got desperate when antibiotics were not dong the trick. Now we know that food allergies were playing a huge part in disturbing his immune system. We are thrilled with the progress he has made in large part due to this forum.

 

Any information you have to share would be greatly appreciated.

 

Eloise - I am not sure I have any info to offer you but I am sure other's will. I know with my son the antibiotics did work dramatically at first but as time went on they seemed to be less effective - so you are right in searching for other answers to help your son heal. PANDAS has so much to do with the immune system and we have been shocked to discover a very strong allergy to milk that has been contributing to my son's problems. So in the end the answer my be quite simple but the search for it can be a winding road. You have come to the right place! Good Luck.

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Alison-

 

My son is on amoxicillin full time and it works. I worry about whether the antibiotic reaches every place in the body that strep can hide. For example, I've read about it lurking in pitted tonsils.

 

About 2 yrs ago we figured out he has PANDAS and some sensitivities (salicylates, food colors, gasoline & chemical odors, electronic screens) that trigger the tics and bad behaviors. He got antibiotics when he got strep throat, but each time he got strep the tics, emotional lability, etc. was worse. In August, he got strep G (which is usually harmless and totally syptomless in most people) and got his usual tics, poor concentration, etc. so we put him on antibiotics permanently so he won't suffer from strep. Or PANDAS. We can't guess at his long range future, but he's improved a long way in 2 years and we're learning day by day.

 

Frank

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  • 3 weeks later...

Hi Frank,

 

Just another question for you...your son has been on antibiotics for 2 years I think you said. Has he ever had a strep infection during that time? My son is on prophylactic antibiotics and has been since January - prior to that he was on full dose antibiotics for 4 months. This week my son had a high fever, enlarged lymph node on his neck and red and sore throat. He was put on the full dose of antibiotics due to a suspected strep infection. His younger sibling had been quite sick with a high fever and upper respiratory problems 5 days earlier so I suspect they are linked in some way - as the baby has also had a high fever for a few days now. I am guessing that somehow my son is more likely to get strep with an illness. Does your son still have tics with viral illnesses? It seemed that this strep infection caused poor concentration and very subtle tics about 3-4 days before the fever broke. His behaviour has been fine since the fever started and his tics have decreased to pretty much none.

 

Thanks for any info,

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Guest Guest_Sherry

My 10 y/o son developed a tic out of the blue - we went on a family trip last weekend and noticed it. Had never noticed it before and he had not complained of it either. My husband said to take him to the family practice to have it checked out. I thought it was silly - he's under a lot of stress because his best friend just moved out of town and he is having a rough year in school but I did take him to our family practice who promptly had me visit the local pediatric neurologist within 2 days. He also checked my son's throat - he had a very virulent case of strep! Had not complained once of a sore throat or had a fever or rash! Thursday my son saw the neurologist who mentioned PANDAS but did not think that could be it because my son has had absolutely no OCD behavior - he's not had a single behavioral issue at all. He pretty much dismissed PANDAS as not being the culprit and said my son had a moderate case of tic syndrome (on a bell curve) and said to call him back if it gets worse and my son asks for medication. Today we went off on a walk at the mall and my son was rabidly afraid of the escalator! Never had he been quite this afraid of heights - it was all we could do to gently coax him onto the escalator. My husband was shocked and so was I - could this also be a PANDAS symptom? We have seen the neurologist before for one of my other boys - he is a great great doctor who will call us on weekends/after hours and explain everything to us very well. Should I mention this fear to him?

 

With all your experiences with PANDAS does it essentially go away with the use of antibiotics?

 

Thanks for your help!

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Hi Sherry and welcome :wub:

 

I am very surprised that the neurologist suggested that it would only be PANDAS if there was OCD.

 

Many here can attest to PANDAS being the cause of their child's tics, even with no OCD or other behavioural issues.

 

However, what you said about your son suddenly being afraid of the escalator set off a flag for me. OCD is a very broad set of behaviours and can encompass fears and phobias. One of my son's earliest OCD symptoms was a fear of going down the drain in the bathtub..he was around 2-3 at the time and we had no idea then that he had OCD, but later when other fears and phobias surfaced, and then additional symptoms of OCD, it all became clear.

 

So, I certainly would suggest that with a strep infection, manifested tics and now a sudden fear.........hmmmmm sounds like PANDAS to me.

 

We have never personally dealt withg PANDAS and so I hesitate to offer any more input, but I know that others here have much knowledge and experience on the subject and will certainly offer you all the info and support they have.

 

Ronna has a wealth of info on this and also important info re the best antibiotics for PANDAS

 

You are on the right path to be checking into this further and are sure to find many answers here.

 

:wub:

 

edited to add

 

Do be very cautious of medications for the tic......there are many other alternatives and if this is PANDAS, the antibiotics should help enormously all round. But the generally prescribed tic and OCD meds really are very strong for kids and bring a bunch of nasty side effects that are often far worse than the tics!

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Thank you so much, Chemar! My husband and I are both alarmed after today because my little one is ticcing a lot today - to the point that he even starts running in circles when it gets really bad. How can he go to school like this? He is in a class that mainstreams kids with health/handicap issues so they haven't really noticed anything but if he is running in circles the kids are going to really pick on him!

 

The neurologist did mention the side effects of anti-tic medicines. He said they will either make him a zombie or make him gain weight so he didn't want to try anything unless the tics got severe.

 

I am going to call the neurologist tomorrow and mention the running in circles and fear of the escalator to him. He said that no matter what the diagnosis is we were to treat the strep very aggressively and have him tested when he finishes the first round of Amxocillin to make sure the strep was gone.

 

Thank you so much for your feedback! This is rather scary - even if he is our youngest and we thought we had seen everything when it comes to parenting since he is also our third boy and we have been living through teenage boys!

Sherry

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Hi Sherry and welcome.

 

So sorry to hear what you are going through. My son was diagnosed with Pandas in August - I have written a lot about our experience in my New Here thread so will not repeat it all. To make a long story short, ultimately for us antibiotics were not the final answer. They initially reduced the symptoms to 99% gone but each time we stopped the antibiotics the symptoms would return anywhere from 3-5 days later. Our first round of antibiotics was for 10 days and part of me thinks it should have been a little longer, but who knows. In the end we were on full doses of antibiotics for 4 months, - minus a few times off them for a few days, trying a few different types, each time he started new antibiotics his symptoms would decrease dramatically but eventually we found we had to look more at the root cause of this illness which is the auto immune system. My son had a history of many ear and throat infections as a child. We have found that through giving him supplements ( he was a terrible eater) eliminating tv initially then switching to LCD tv ( photosensitivity became a problem - now I think that probably came from all the antibiotic use) and ultimately doing a food sensitivity test and finding he was allergic to milk and wheat,( two things he lived on) that his symptoms decreased to become essentially non existent. When I first started researching PANDAS I kept looking for stories of a quick and easy answer to the problem and really hoped it was the antibiotics. And you may be lucky that that is all your son will need to return to his normal self. I know how horrifying it is to see your child change before your eyes overnight. We did end up having to keep my son home for a few days as his tics were so severe - but within 72 hours they were 80% gone. I know Ronna has had an experience where her PANDAS son did not respond to amoxycillin. I assume your son is currently still on the amoxycillin - I would suggest that if your son is showing more symptoms rather than less symptoms that you may want to ask for an alternative antibiotic. I believe Ronna's son responded to clindamycin.(sp) My son was on Biaxin for a while and responded well to that.

 

Good Luck. You are lucky to have doctors who are aware of PANDAS.

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Thanks, Allison for your encouragement. Geoff has been on antibiotics since Tuesday and the tics are getting worse. He also has always been a terrible eater but has not had a history of many strep infections and had virtually no ear infections ( unlike my other 2 boys!) I am allergic to everything and in order to lose weight a few years ago I literally went off all dairy and all grains. It was tough but I also felt better than I had ever felt. Geoff is such a picky eater that I don't know what to eliminate because he won't eat very much - was born a picky eater! I also take a lot of supplements and we have an excellent holistic medical doctor in town who I have seen. I'm wondering what supplements work for this because I do not want to use the medications the neurologist suggested - Clonidine and anti-hypertensive meds. He said the anti-hypertensive meds would work for Geoff but since he already has low blood pressure the meds would turn him into a zombified couch potato.

 

I am also concerned about using suplements on a child who is only 10.

Sherry

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Sherry

 

supplements are basically vitamins and minerals and so are generally very safe for children, provided they are given at the appropriate dose for age and weight.

 

Many have found it beneficial to check for vitamin /mineral deficiencies first and then supplement accordingly. A good naturopath can give you much guidance in this.

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Hi Sherry,

 

Chlonidine was also the medication that was recommended to us and we did not take it. We have had tremendous success as I have said with diet change, tv reduction, and vitamins. I was also worried about using vitamins and actually did not start until the end of December, somehow I felt more comfortable trying all kinds of antibiotics than trying the vitamins. I was also looking into Plasma exhange and IVIG - crazy that I felt that was somehow safer than vitamins. I have come along way!! As I have said before I was not really into the alternative medicine. With the guidance of a naturopath I felt comfortable starting with vitamins. We started slowly ( actually too fast, then slowly) by giving 1/3 of a vitamin for a few days then building up. My son is 6. The key vitamins seem to be EFA, Bcomplex, Cal/Mag, and a good multivitamin. Even if you start with a really good multivitamin if you are not already. Chemar has outlined the vitamins she has used and I found her list very helpful - there is a thread - I think it is called - things that helped my son.

From all that I have read the biggest trigger seems to be dairy so if you are thinking of doing an elimination diet this may be a good start. You should see a change within 3-7 days. My son did not eat much so elimination diets did not make much sense to us so we did the ELISA food sensitivity testing. When we first eliminated milk as a trial before the test, we just stopped giving him cows milk to drink - but did not stop all milk products - ie in processed foods etc. We gave him limited soy - 2 cups a day - he had been having about 6 glasses of milk a day. We ultimately found out he was allergic to soy as well so I am glad we limited it or we may not have seen the results we did.

My son was very sick with infections from 1-2 years but since the age of 2 he had not been sick once. Although he did have a chronic cough that we were told was probably environmental allergies - the cough is now gone.

One other thing to keep in mind which was brought to my attention - although did not seem to be a factor for me, is there are colorings in the amoxicillin and that could be a problem for some kids. One poster, (Heather - I think) had a child with PANDAS who got so much worse on the antibiotic and in the end she felt her son had a reaction to the antibiotic. Just something to keep in mind if he has not been on that medication before.

With PANDAS, when on the correct antibiotic, tics should not be getting worse. They should be getting better - so I would really look into trying another kind.

 

Marie, (mmazz) has been writing about juicing - so that may be a good way of getting vitamins etc in to your son if you are stills concerned about the vitamins. We have only seen positive results from using vitamins, my son looks healthier than he ever has, his hair is so shiny, and he sleeps 2 extra hours a night, that started within a few days of starting the Cal/Mag supplement. He takes that with dinner, and the B complex with breakfast - many find B as a stimulant so better to take it in the am.

 

Good luck, you are on a good path, and you are lucky to already have a holistic doctor who you trust. Look forward to an update.

 

 

 

PS - I also have three boys, but younger than yours, 6, 3, 1. I can only imagine what the teenage years will be like. YIKES.

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Alison,

 

Your post really caught my attention. Your case sounds similiar to my youngest son. I'm really interested to know, since you said your son doesn't eat much, if that was the way he always was, or if he started eliminating foods in his diet one by one. My son was a very good eater until somewhere around 13-15mos? I have looked at his immunization record and have also talked to other parents of so called "picky eaters" Do a lot of kids stop eating after their 3rd dose of immun.? This appears to be a pretty common age, when parents start to think back. The foods left in my son's diet are mostly all high in sugar and dairy.

 

I think the yeast problem is a real possibility. A am so tempted to try the Threelac.

They claim you don't have to follow the sugar restrictions, but like every parent I am so skeptical of doing anything without a Dr. supervision. Both the Ped. and the Neuro. have acted like I'm an idiot and strongly recommended I not give vitamins. I am in the process of looking for an Envir. Dr. or an alternative Med. Dr. to help. It is perfectly clear to me neither Dr. has hardly any knowlege of this disorder. I didn't myself until about 3 weeks ago and many hours reading the posts of the wonderful people here and on Braintalk. One of Threelacs ingredients is Streptococcus Faecalis. Does anyone have experience with this product?

 

My 12 yr. old son is currently taking the Bontec basic program. If anyone would like to know how that's going I would be happy to share. The B's generating too much enery has been a bit of a problem, had to scale back.

 

Thanks to all for the info. and support, especially the ones who are past the crisis feeling part, and continue to help the rest of us.

 

Also, both of my boys were on soy formula, just because the hospital recommened it and they did very well on it. I wonder if it could have contributed, or helped (I would have to say they are both mild, although who knows what is to come with my 8 yr old.) My older son does not have any food issues. Maybe no relationship at all. I keep wondering if there is a milk allergy, if possibly I could have been dealing with Autism instead of mild/moderate at times tic's.

 

Kim

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Guest Guest_Heather

Hi Kim,

 

We are regular users of Threelac (my 8 year old son, 10 year old daughter and myself). My son had severe tics last winter and they are completely under control now. My naturopath did okay the use of the Threelac for the yeast. She wanted him to use Candicin (from Genestra) but he would not swallow capsules at the time so I did my own research and found the Threelac. I just sprinkle a bit of powder on their food before eating. We have had no formal yeast testing with urine or blood work, however, my naturopath uses electra dermal testing to test for balancing the digestive system. The Threelac cleared all three of us and as I mentioned, my son's tics are under control now. They were so severe last winter that he was out of school for 2 months (both vocal and motor). It took 2-3 months of using Threelac to clear the yeast for both of my kids.

 

I do feel it is important to use these supplements under the guidance of a naturopath, however it is sometimes difficult to find one that you can trust. I know my son's body now soooooo well and all of his reactions that I am working out my own treatments but getting the okay from my naturopath. I have also done hours and hours of research.

 

If I had listened to the medical doctors' advice, it is scary to think where we might be right now as they all thought I was crazy.

 

If you have any questions about the Threelac, just post them. I am hardling posting anymore simply because I started a new job and just don't have time but I try to keep up with reading the posts as much as I can.

 

Heather

Heather

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Kim,

 

You ask an interesting question about whether my son was always a picky eater. He was in many ways but I think part of his early problem was that his tonsils were so enlarged they touched so he had trouble swallowing. He was never a great eater of baby foods, cereals, baby cookies. He used to turn away and cry when I was feeding him. He was a terrible eater leading up to the surgery, he would only eat baby cereal and minigos. No finger foods. After the surgery he was still quite fussy and when he was about 4 literally went about 4 months only eating ketchup sandwiches - bfast, lunch and dinner. I would sneak cream cheese on ( thinking I was doing a good thing) He started to eat a bit better over the last year, but in reality was still a really poor eater. Mostly canned pasta - pokemon, sponge bob, mac and cheese, and hot dogs, and grapes. This was such an improvement for him. Tonight for dinner he had a pork chop, spinach salad, pineapple, and nachos. What an incredible improvement!!!

I found it interesting when Claire pointed out many kids with tics are poor eaters which makes so much sense as their immune systems would not be the greatest. I had many concerns about my sons eating - and did try all different ways of getting him to eat, all without success. Whenever I brought it up with the doctor he would check his iron, which was always low, and then he would have an iron supplement for a few months. He is one of the tallest kids in his class and has always gained weight appropriately so I was always told just not to worry.

 

Your comment about the yeast was one of many I have read in recent days - perhaps it is a sign from somewhere??? Anyway - I have been reading about it but not thinking much about it as we did the spit test in December and it was fine - all this talk about yeast and the success people have had treating it made me do another spit test tonight - his spit was much different than in december and had lots of stringy clumps right away - if I recall the test should be done in the a.m. - so I am not sure if the results are correct at the end of the day so I will read up on that tonight and try it again tomorrow. Threelac is the treatment I keep hearing about. I think if his shows positive tomorrow I may go ahead with it.

 

 

Heather - I imagine I may be posting some questions for you about Threelac once I start looking into it.

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