[Blood test results]

Yes he does have an unusual amount of uncommon metals in his blood labs for heavy metals. Plus he does have an overgrowth of yeast showing in his labs plus daily functions like he is kind of odd or drunk like. I am giving probiotics but he must need more which is the call for Nystatin I suppose. I have heard of dye off and am worried about the yeast coming out and causing worse behaviors then we are already seeing. We do the GF CF diet but seem to still have some odd behaviors like the constant cracking of hands and feet and OCD symptoms. Starting tomorrow I will add more supplements . I just could beat myself for ever giving him the flu shot in the past and the vaccines after the initial PANDAS. Now I have a nine month old girl that I am freaked out about giving another immunization with his past history and my autoimmune disorder. Thanks for your response about the DO. I think I am becomming obsessed with finding a treatment that works.

 

Michele

Hi Michele,

 

Our kids have special needs and it can be a scary place to be. However, being scared can be a good thing in that you will be more prune to ask questions, research etc to be convinced that the treatment being suggested is the right one for your child. Basically, I think if we find ourselves feeling uncomfortable or with more questions than answers then is the time to put up the stop sign.

 

To answer your question about the DO, the simple answer is that a DO is an Ostopathic Doctor. If you visit the following website you can learn more:

http://www.osteopathic.org/index.cfm?PageID=ost_omed but the following is a quote from the site for ease of reference:

 

" .... You are more than just the sum of your body parts. That’s why doctors of osteopathic medicine (D.O.s) practice a “whole person” approach to health care. Instead of just treating specific symptoms, osteopathic physicians concentrate on treating you as a whole.

 

Osteopathic physicians understand how all the body’s systems are interconnected and how each one affects the others. They focus special attention on the musculoskeletal system, which reflects and influences the condition of all other body systems.

 

This system of bones and muscles makes up about twothirds of the body’s mass, and a routine part of the examination D.O.s give patients is a careful evaluation of these important structures. D.O.s know that the body’s structure plays a critical role in its ability to function. They can use their eyes and hands to identify structural problems and to support the body’s natural tendency toward health and self-healing.

 

Osteopathic physicians also use their ears to listen to you and your health concerns. D.O.s help patients develop attitudes and lifestyles that don’t just fight illness but also help prevent it. Millions of Americans prefer this concerned and compassionate care and have made D.O.s their physicians for life.

 

Hope that helps to give a better understanding of what DO's are all about.

 

No, nystatin was not prescribed for my daughter and is usually used to treat yeast type infections. We did have amino acids and vitamins compounded specific to her needs, based on the results of the spectracell test and her symptoms. We also did allergy testing and administered a short series of allergy shots, also based on the results of those tests.

 

Did the DAN identify a problem with metals in your son's system? I'm not very familiar with chelation therapy and no my daughter hasn't had it.

 

If I can be of any other assistance feel free to post!

 

Sherry

 

 

 

 

Hi All,

I am kinda new here, but, keeping it short, my almost 5 year old developed sudden onset vocal tics and OCD this past July. My older son, 7, then developed two mild motor tics suddenly this past summer too, both shortly after a strep infection. My older son has shown no other symptoms, and his tics only come out when under a lot of stress. My younger son is a different story. OCD/Anxiety/Tics/separation anxiety, etc. It was a terrible couple of weeks, I didn't eat, sleep, etc. and had no idea what the heck was happeneing to my kids, we were so scared. After much research, we finally found out about PANDAS, it fit to a T. Now we are looking for treatments. My son is almost symptom free now, still mild ocd/tics, soooooo much better than he was. We had blood work done for the titers, both negative, but this wasn't done until 3 months after symptoms, so, the fact that he is almost asymptomatic now, with normal titers makes sense and does not rule out PANDAS. What I want to know is why haven't I heard of anyone considering IVIG? This procedure can actually take care of the problem FOR GOOD! It works either way your system needs it, by modulating it. My research indicated a one-time treatment , given over a two day period, with only 1 year of preventative antibiotic, is likely to take care of the problem for good, even in the event of strep again. We are considering this for our son, to catch this early and prevent recurrences and future problems. There are many documented dramatic success stories with PANDAS kids and IVIG. I guess I don't understand why I don't see it mentioned anywhere in these posts, has anyone looked into it or considered it (besides PANDAS Denmark)? Please let me know your thoughts!

Thanks..God Bless.

kelly

[overwhelmed with diet- is it worth it?]

Hi DKRESmith

 

if you click on the link in my signature, you'll find some details on my son's treatment.

 

His earliest tics that I recall were vocal clucking sounds and then lots of eye tics...rolling, blinking etc. The list is long from those days, including head/chin banging to whiplashing to screeching.

In the early days they were very severe and caused him injury, to the point of hospitalization. He was diagnosed at age 10, tho we now realize his tics started when he was tiny, we just didnt know what they were.

 

Most of his tics seem to be head/neck/shoulder and vocals.

 

My husband now has a formal TS dx, but it wasnt until my son was dx that my husband realized what he and his dad had. My husband was punished and ridiculed and bullied as a child for his "weird habits" which we now know were tics and OCD. My husband still shows mild tics, and OCD

 

My son is almost 18 yo now and is doing very well. From age 10-11 he was on medications which did more harm than good. We saw immediate and dramatic improvement as soon as we started the supplement program, cleaned up diet, detoxed from mercury and candida, and began acupuncture, resonance biofeedback, reflexology etc and chiropracty. He went from having totally debilitating TS/OCD to it now being a very mild situation. The intensity, frequency and duration of his waxing phases has reduced, and it was evident within days of us starting the natural treatment program and has maintained these past 7 years.

 

Sadly he also has Crohn's Disease, which has been far worse than the TS ever was, but again he is using specialized diet and supps for this (no meds) and his latest blood tests show he is doing very well. He hasnt had a flare up of the Crohn's in months.

 

hope that answers your questions

Cheri

 

 

 

Hi Chemar,

Thanks for your help! How do you go about detoxifying from heavy metals? I am especially interested in checking for yeast overgrowth in my son, for I suspect it. Do I go to a doctor or allergist? How do I check for yeast and how do I treat it? Thanks again!

 

Kelly

 

 

Oh, I forgot, is is okay to give Taurine and Magnesium, two sep. supps. together, or should I get Mag. Taurate? Was your son's Crohn's related to his TS?

Kelly

[overwhelmed with diet- is it worth it?]

Hi DKRESmith

 

if you click on the link in my signature, you'll find some details on my son's treatment.

 

His earliest tics that I recall were vocal clucking sounds and then lots of eye tics...rolling, blinking etc. The list is long from those days, including head/chin banging to whiplashing to screeching.

In the early days they were very severe and caused him injury, to the point of hospitalization. He was diagnosed at age 10, tho we now realize his tics started when he was tiny, we just didnt know what they were.

 

Most of his tics seem to be head/neck/shoulder and vocals.

 

My husband now has a formal TS dx, but it wasnt until my son was dx that my husband realized what he and his dad had. My husband was punished and ridiculed and bullied as a child for his "weird habits" which we now know were tics and OCD. My husband still shows mild tics, and OCD

 

My son is almost 18 yo now and is doing very well. From age 10-11 he was on medications which did more harm than good. We saw immediate and dramatic improvement as soon as we started the supplement program, cleaned up diet, detoxed from mercury and candida, and began acupuncture, resonance biofeedback, reflexology etc and chiropracty. He went from having totally debilitating TS/OCD to it now being a very mild situation. The intensity, frequency and duration of his waxing phases has reduced, and it was evident within days of us starting the natural treatment program and has maintained these past 7 years.

 

Sadly he also has Crohn's Disease, which has been far worse than the TS ever was, but again he is using specialized diet and supps for this (no meds) and his latest blood tests show he is doing very well. He hasnt had a flare up of the Crohn's in months.

 

hope that answers your questions

Cheri

 

 

 

Hi Chemar,

Thanks for your help! How do you go about detoxifying from heavy metals? I am especially interested in checking for yeast overgrowth in my son, for I suspect it. Do I go to a doctor or allergist? How do I check for yeast and how do I treat it? Thanks again!

 

Kelly

[overwhelmed with diet- is it worth it?]

Hi again

 

if there is delayed sensitivity to foods (which is a form of allergy) then it can, from my understanding, be just as undermining to the immune system as a full blown allergy. Just takes a while longer to manifest.

And, as with all allergies, when the body is fighting the allergen it will usually be manifesting the effect in other ways, eg with increased tics, negative mood, behavior, respiratory and digestive maladies etc

 

so I am truly not suggesting one ignore alergies or even sensitivities, just that one need to take a balanced approach and, if there arent serious food reactivities, then maybe try the enzymes and see if that helps with those that there is mild to moderate sensitivity to.

 

we did not do many of the tests that are available now when my son first started with his alternative/natural treatments, and so I am by no means as clued up on these as most of you.

 

just adding my 2c worth on taking a balanced approach to all this and take it a day at a time. Sometimes we just wear ourselves out by trying too much all at once, and so we sometimes need to just stick to the basics that work and slowly work on the rest, a small step at a time.

 

hope you have a peaceful and relaxing weekend away.

 

 

Hi Chemar,

I was wondering about your son, how his TS manifested? Just curious to have something to compare PANDAS onset and inherited TS onset. You said your husband and his father had TS. Were they offically diagnosed with this? Does your husband still have symptoms? Also, how did your son start to show symptoms and at what age? How old is he now and how is he doing? I know, a lot of questions, this is new to us and I feel overwhelmed? Thanks for your help!

 

Kelly

[Blood test results]

Our DAN Dr. also believes exactly what you are saying. The immunizations put them over the edge when they already have a predisposition for tics and immune problems. My question to you is did you give all the supplements the DO suggested for mineral difficiency? My son has the same with yeast overgrowth and metabolic problems. Well the DAN wants him on so many supplements that it is overwhelming. Plus he is talking chelation and Nystatin and amino acids. I think it is alot for a five year old. Isn't it odd that the DAN is the only Dr. suggesting any treatment plan involving meds or supplements? Thank you for sharing your story too. It is wonderful if you share your plan. I think the kindergarten and flu vaccines are what put my son over the edge too.

Michele

 

I think Sunflower has hit on something here. My daughter, now 14, has been experiencing a neck tic (nodding motion) since August as well, having been given her MMR booster in July. It went away for a few weeks in September after putting her on magnesium and Vit B supps but returned again in Oct. I truly believe that many of our children are much too sensitive for vaccinations and hence the symptoms they experience afterwards. It is very upsetting to me that we are legally forced to give vaccines. However, I agree with Sunflower that you should find a good DAN doctor who I am sure will be able to help.

 

If it is any consolation, my daughter started having excessive eye blinking around the age of 6/7 and after much prayers and research I found a wonderful doctor (DO)who tested and treated her for allergies and vit/mineral deficiencies at age 11. After a short while the symptoms went away and she had been fine since, until the MMR booster vaccination this summer. We are now consulting with her doctor and I will share results on this forum.

 

In the meantime, I am so grateful to have the support of this wonderful community of caring individuals with the common goal of "our children's wellness".

 

God bless

 

Sherry

 

 

 

Hi,

I am kinda new here, first, can someone please tell me what a DAN doctor is? I would REALLY appreciate it!

Thanks!

Kelly

[IVIGtreatment]

Hi -

 

I am the mother of a 7year old boy, diagnosed with PANDAS.

 

My son was treated with IVIG/immunoglobulin half a year ago.

 

The result was amazing – both his tics and OCD improving dramatically.

 

However : Shortly after the treatment my son (at that time treated with Pencillin V) was having numerous infections, and his tics and OCD was back as strong as ever :-(.

 

I have been told, that IVIG/immunoglobulin can help only on an ongoing autoimmune proces, and that is why my son reacted the way he did : With a new autoimmune proces leading to new symptoms, when he was infected again.

 

Since then my sons penicillinprofylaxis is changed (from Penicillin V to Amoxicillin – and latest to Azithromycin).

 

When my son was treated with IVIG/immunoglobulin, the doctors told me, that I was to expect, that the treatment was to be repeated with 6-8 weeks interval.

 

Since the first treatment however it has been impossible for me to get the doctors to repeat the treatment.

 

All of a sudden they say, that there is no evidence, that this treatment help on PANDASchildren. I believe, that is not a question of evidence, but a question of money !

 

I am told to, that I will simply have to accept, that my son is having a cronical (and evolving) disease.

 

I know that my son is having PANDAS, and that PANDAS is a cronical disease. But I cannot accept, that my son isn´t getting the treatment, that might help him.

 

As such I am trying to find a doctor/a hospical/a clinic, that is willing and qualified to treat my son with IVIG (very well knowing, that this is very expensive, and that I will have to pay myself).

 

Does any of you know such a doctor/hospital/clinic, I would be so very thankfull, if you would share this knowledge with me.

 

I life with my son in Denmark (Scandinavia), but I am willing to travel around the world, if this might help my son in any way.

 

Sincerely -

PANDAS_Denmark

 

 

 

 

Hi PANDAS Denmark,

DKRESmith here, wondering if you received my reply to you? Have you made any progress? Please let me know, I am wondering how you and your son are doing? What is your story with your son and how did you get the first dose of IVIG initially?

 

Sincerely,

DKRESmith

[What about IVIG?]

Hello Everyone.

I am new to this post, I finally came across it today after months of research on PANDAS. My son,5, had sudden onset of vocal tics/ocd this past August and I was a mess for about a month over it, still kinda am. He and his brother, 7, had strep at the time and when I came across PANDAS, wow, that was him. He went on the typical antibiotic course, actually 2 courses, and during the second course is when it all exploded.?? During the ensuing 2 months, everything calmed down considerably, with just very minimal ocd and a minimal vocal clearing of the throat left today, no one would notice a thing. I don't know where to go from here. What is amazing is my older son suddenly develpoed 2 motor tics a couple of weeks after, and I am wondering if it could be the same thing. But, my older sons behavior did not change like my younger sons did VERY much so. My older son only tics when under stress and it is mild, he is going in for tonsillectomy this Thurs. for airway obstruction with his adenoids and they will just take out everything. I am curious to see if his mild tics go away as I have read tonsillectomy can significantly help PANDAS kids, if he is even one. But, back to my younger son, who I have no question has PANDAS. We are waiting test (blood) results right now, then what do I do? I am torn because I have read much about IVIG, and PEX, and know they have been proven to put these kids in complete and lasting remission. PEX removes antibodies, IVIG blocks. I have found a doc who has vast experience and success with IVIG and PANDAS, and he says a complete and lasting cure should and can be expected after IVIG is administered, even in the event of strep, the child should remain symptom free. To test effectiveness of IVIG, steriod burst is administered, which is an anti-inflamatory, immune suppresent, just what PANDAS needs, and if SIGNIFICANT improvement in your child symptoms is noticed, then IVIG can be considreed as the next step. So, I am wondering, should I put my child on preventative antibiotic, or just go for the IVIG and take care of it altogether? IVIG is considered invasive and carries some risks. I spoke with a MOM whose daughter had severe OCD/PANDAS, and after she had PEX, it was totally gone. Does anyone have any input or experience with IVIG? I was surprised to not find it mentioned anywhere in these posts. By the way, what is a DAN doctor? I appreciate advice form all you PANDAS parents, I am confused as to which step to take next. Thanks.

Kelly