PANDAS

[Guest Bob]

Hi,

My son (13 yo) had PANDAS and I could give you a lot of info about this.....

If your child has a sudden onset of OCD symptoms following or coinciding with a strep throat, it could mean PANDAS. What actually is happening is the antibodies that the body produces to fight the strep hang out after the strep is gone and attack the basal ganglia (an area of the brain the if not normal can cause OCD).

The doctor will prescribe antibiotics first.

 

This is what happened with our son. He had so many strep infections during his childhood - also diagnosed with ADHD and Tourettes. When he was in 5th grade, the OCD got real bad (coincided with a case of strep) - he couldn't even go to school.

We got the levels of strep antibodies checked in our son's blood. If your doctor doesn't know about this, (and a lot of them don't) check out the web site from NIMH. The two levels to check are : ASO and DNASE B. Our son's levels were extremely elevated.

 

The antibiotics won't actually cure the PANDAS but will keep future strep germs away. He is now on a prophylactic dose.

 

He underwent plasma apheresis which is basically a cleaning out of the plasma. It was a 2 week outpatient procedure - we went in 6 times over the 2 week period. This removed the strep antibodies so they were within normal limits and his symptoms greatly improved.

 

The battle is not over because any virus can cause the levels of strep antibodies to become elevated. Our doctor also recommended a flu shot. Remember, this is a relatively new discovery - PANDAS - and there is still a lot of research going on. If you suspect PANDAS, try to find a child psychiatrist who has had experience treating children with this disorder.

 

Good luck

My son is also 13 years old. He developed OCD overnight. He has hoarding

contanination and counting problems. We had a strep antibody test done

but we don't know how to interpert it. The Anti-Dnase-B Antibody is

480 titer and the reference rance is 170. Do you know what this means?

[Guest LeeAnn Gibson]

Please help me. I live in Redding CA. My daughter has had a sudden onset of OCD symptoms. All that has been done so far is that she has been prescribed risperitol and fluvoxamine. The pharmacist told me that these are not good to take together, so I dropped the risperitol.

 

My child may not be able to continue with school. I wonder if she has pandas as she says she has a sore throat, and she is seven years old. The early onset and suddenness of symptoms seems consistent with that. The pschiatrist will not be able to see her until February!!!!!

 

Help!

[Claire]

Dear Leeann,

 

If you don't get an answer quickly, I suggest you go to this other board and post this question--it is a more active board. PANDAS can result in tics and/or ocd and many parents there have PANDAS kids. The healing treatment is the same, whether it is tics/tourettes or OCD.

 

http://www.latitudes.org/forums/index.php?showforum=1

 

I also suggest that you INSIST/DEMAND a strep culture for your son--it sounds like high odds this is PANDAS, and the sooner you treat it with antibiotics, the better chance of it not being a chronic thing.

 

Claire

[ad_ccl]

Hi LeeAnne,

 

I have not been reading the OCD site but saw the heading PANDAS so read over here. My son has been diagnosed with PANDAS after a sudden explosion of tics - we had to keep him home for several days, tics were literally every second and were both motor and vocal. I was very lucky to have a doctor familiar with PANDAS and he prescribed antibiotics right away, within 48-72 hours tics were 80-90% gone. The strep test and blood work all came back several days later with results consistent with PANDAS. I have posted some info about my story on the tics board and I think on braintalk, so if you want more details the info is there. Or if you have any questions I would be happy to answer as best I can -- although there are so many extremely knowledgeable people on this forum, Ronna seems to know everything there is to know about PANDAS. And Claire and Chemar have a wealth of knowledge on supplements etc. I know how much I searched the posts for a story that was similar to mine. I was also referred to a child psychiatrist who did give me a prescription for Clonidine but felt that if the antibiotics were working the tics should be dealt with that way. I have since been to a neurologist and the infectious disease clinic at our children's hospital. We are currently on prophylactic antibiotics to prevent another infection, we are also now a week into supplements, we are having success but it seems to be a long journey full of ups and downs.

 

Claire is right, you need to get a throat swab and the blood work tested and see if antibiotics make a difference in her symptoms. Each time my son was put on antibiotics his symptoms would drastically improve by day 3 and when the antibiotics would end his symptoms would return within 3-5 days.

[Guest Sherry M.]

My son is a 10 y/o who suddenly developed a fascial tic with head shaking just out of the blue. We went on a family trip and noticed it! My husband had me take him to our family doctor although I just thought it was stress- his best friend just left town and he has the teacher from ###### this year! The doctor sent us to a pediatric neurologist here in town - my older son had seen him for something else a few years ago and we thought he was great! Anyway the family doctor took one look at his throat also - he had a very bad case of strep. My son never complained once of having a sore throat!

 

The neurologist saw him 2 days later and mentioned PANDAS. He said he didn't think it was PANDAS because my son was not having any OCD symptoms whatsoever, just the constant tic. Is it possible to have PANDAS without OCD symptoms? The neurologist said my son had moderate tic syndrome on a bell shaped scale.

 

We have seen some symptoms of abnormal fears that he's never expressed before - for instance, being deathly afraid of the escalator at the mall we went to today.

 

Will the PANDAS go away when the strep does? We are aggressively treating the strep and the neurologist mentioned to get him retested and make sure it is gone.

[mychildatnine]

Dear Michael,

 

We have something in common. Questions. I need answers too. I have the same questions written down. My biggest fear is that the damage to the basal ganglia is permanent. My child does not have Autism, but does have OCD. No rituals her is mild and seems to be more the not eating route, saving (hoarding) items, picks at her skin. I cry everytime I start to thin about this whole issue.

 

She too has had many strep infections with one URI. Her ASO was also high and we are awaiting for the other antibody tests. She would often have sore throats but by the time we got to the doctor her culture would end up negative. I feel like a clueless parent, but even then I was convinced she was a carrier. We thought her symptoms were because of a major move-not the case. I've learned a lot reading your posts and I'm anxious to read more.

 

Thank you,

 

Allison

[Guest brandi]

hi ! im sitting here searching for anything to help my son ben . he has been diagnosed with pandas and i dont know what else to do we have been blessed by only having the tics but thay are so bad i dont know what to do for my baby he said last night kids are calling him a freak so needless to say im not having a good day!1 he has been on amoxacillian for a year and a half with no help we have a doctor appt on fri is thair anything i can suggest to his doctor for more help ? is thair a stop to these antibodys or not? i just pray for all who are on this page i truly know how your feeling if your feeling as bad as i do

[ad_ccl]

Hi Brandi,

 

I am so sorry you are having such a difficult time, I know the feeling well. My son was diagnosed with PANDAS in August - and was on full dose antibiotics for 5 months, every time he went off them within days the tics would return. During that time he had constant tics, but very up and down and the bad days coincided with viral illnesses. I am so thankful that we found this site - I post on the tics board here - I have a thread called New Here (Pandas) which outlines what we have been going through - ultimately the antibiotics were not the answer for us in terms of clearing up the tics ( we also only had tics) ultimately we did several things that have resulted in my son being tic free or close to most of the time. Supplements were important to boost his immune system, reducing/eliminating TV helped as well, ultimately we now know the flicker on tv was a problem, and he can watch LCD with no problem. Probably the biggest change has been discovering he had food allergies - we at first did an elimination of milk after I read several threads where this seemed to be common with kids with tics, we then did blood work, Elisa Test - a delayed sensitivity test - and found he was highly allergic to milk, as well as gluten, soy and eggs - all things he ate daily, especially milk - he lived on diary - once off the food it was like a miracle, the tics literally started to disappear, he became so much happier, his focus at school improved and his sleep patterns changed for the better. I would NEVER have guessed milk could have been causing or contributing to his tics. I always assumed allergies to food caused upset stomachs and hives, not tics. To put it very basically I think his immune system was under attack after the strep infection and then never managed to settle out as he ate foods daily that were also causing an immune reaction. We are thrilled with how he is doing. He is still on prophylactic antibiotics but we do hope to take him off that sometime sooner rather than later. He is currently sick with a cold and he has had very minimal increase in tics - nothing anyone would notice. His tics at their worst were very noticeable, although we are lucky that he was only 6 and somehow the kids in his class did not make fun of him or call him names, I am sorry your son is going through this. I would guess he may be a little older, I imagine even a year older would make such a difference in what the other kids would say. Please know there is hope, I was completely lost in November and December, I had hoped the 'medical community" could cure my son, ultimately it was the research that I did and the WONDERFUL people on the tic/tourette board who have put me on the right path to change my sons life for the better. We also started to see a naturopath to assist on supplements etc - many main stream doctors will dismiss the idea that the foods/vitamins make a difference. If you read over on the tic board you will see that many people have found great success. If you have any questions please ask...I check the tic board daily and it is a very active board so if you post there you will be sure to get many valuable responses and much support.

Good Luck.

[Claire]

Brandi,

 

There is LOTS of help for your son. The information is on the Tics and Tourette's forum here:

 

http://www.latitudes.org/forums/index.php?showforum=1

 

You can read some of the info there and post questions.

 

PANDAS is an immune issue and the tics board here is mostly 'immune issue' driven. A number have PANDAS and have seen substantial improvement--for some the tics are very minor now. As Alison mentioned, she started a thread on PANDAS there which discusses her path to success (a major improvement for her child). Here is her thread:

 

http://www.latitudes.org/forums/index.php?...p?showtopic=973

 

 

One path is to find an alternative doctor who focused on the immune system. They do tests and supplements to support the immune system so that the antibiotics don't need to go on forever. In fact, they can cause yeast issues very often, so you may need to treat that too.

 

 

Here is a list:

http://www.latitudes.org/forums/index.php?...p?showtopic=565

 

Again, the best advice I can give is to go to the tics board and read and ask questions. It is more active than here. To me, it doesn't matter if it is tics or OCD, the way to healing for PANDAS is through the immune system.

 

Claire

[Guest Guest]

My 12 year old son had been diagnosed with PANDAS when he was 8. Since that time his tics have minimized and he sometimes doesn't tic for months. His tics are mainly facial, jaw movements. Not really noticeble, unless you are watching. We have noticed that he seems to tic more when he is in a growth spurt, has anyone else experienced this?

[Claire]

One possibility:

 

Zinc is depleted during growth spurts. Zinc is an important part of the nutritional/immune balance.

 

If you are not doing so, you might want to ensure that he is getting his daily allowance of zinc.

 

Also, www.labcorp.com does a blood test for zinc deficiency among other things. Zinc deficiencies seem to be common in this group.

 

Claire

[Guest Falon]

My name is Falon and I am 16 yrs old. In the beginning of this year i was diagnosed with PANDAS. The tics come constantly and there is no way to predict them or stop them once the come. For four years I was in and out of hospitals and doctors offices trying to figure out what was wrong. About two years ago I want to a nuerologist. he gave me a have dose of anti-depressents he told my mother it was all in my head. To make a long story short I nearly died from it because the dose was to high for my body. The drug wasn't out of my system by the time i had to take the next pill. Causing an uneccisary over dose. When the flushed it out of my body I was addicted because Claunopan or something thta sounds like it is very addicting. Well it supressed the tics for bout a year then they came back worse. It was like it had been feeding it. And when i was taken off that med it was trying to recharge after loseing its mane energy sorce.

My problem now a days is that when i find a doc who knows about PANDAS they wont take me because Im only 16 and not 18. Most docs who will treat me because of my age are not really all that knowlwegable in the PANDAS field.

 

Any advise? Suggestions?

 

p.s. NEVER LET A DOCTOR TELL YOU ITS ALL IN YOUR HEAD OR YOUR CHILDS HEAD. GET A SECOND OPINION .PREFERABLY FROM A FEMALE DOC. THEY WONT PUT YOU ON MEDS SO QUICKLY. IF YOUR CHILD MIGHT HAVE PANDAS DON'T GO STRAIGHT TO HEAVY ANTI- DEPRESS- ANTI-PHSYCOTIC MEDS. NO ONE DESERVES THE PAIN, FEAR, AND STRESS ME AND MY FAMILY HAD TO GO THROUGH.

[Claire]

Falon

 

There is help for you. But the active community for tic treatments is on this other forum on this site. People with PANDAS and no PANDAS, most of the treatments are the same, and the focus is alternative treatments (no prescription drugs). We have had great success. You can repost your post there...plus we have lots of threads. I will bump a newcomer thread for you right now.

 

 

http://www.latitudes.org/forums/index.php?showforum=1

 

Good luck!

 

Claire

[LorraineP]

Does anyone have any idea - what if a child is allergic to Penicillin and Amoxycillin - how could you get rid of the Strep remnants? If anyone has any idea please post!