Questions about PANDAS

[ad_ccl]

I really am confused about the titers with my son. When he had the EXPLOSIVE onset his results were about 780 (normal is under 200) we had him re-tested in January when he was close to symptom free so we were shocked that his results were 1200 - we then assumed that it was because they had probably gone up to the 2000 mark and were working themselves down - as the original blood test was just as the explosion was happening. We had him re-tested in August again he was pretty much symptom free but coming down with subtle tics - and a week later a stomach flu/cold. Those results were 780 - and the other blood work showed he was fighting a viral illness at the time. We had him retested last week as we were doing other blood work so we always add in the ASO titers - have not got the results yet. I have read that some kids can end up with high titers but 800 as a normal level seems very high. I have talked to my doctor about doing monthly tests but it does not seem to make sense for us at this time. I do like have the periodic test done when testing other things.

[kim]

ad_ccl,

 

Wow, you guys have been on top of this. I can't imagine my kids Dr. doing any off that. If the culture was negative, I think he'd tell us to come back if they got a fever.

 

Was the virus indicated by low white count?

 

Kim

[SDK]

Cheri, what you say makes great sense to me given our experience. Do you by any chance know where the strep might be in the body other than the throat? Or are you saying that the strep would still be in the throat but that the swab tests only for one type of strain but not for others? SDK

[SDK]

Allison, my understanding is that provided there is no new strep infection, titers should show a down ward trend, although it may take six months for them to return to normal. Our January value was 680, by May it was under 200 (normal level). Then, In July it was up at 500 (so we knew that there was a new infection.

What I do not know is if any infection other than strep can cause ASO titers to rise. What does your doctor say about your son's high titers? SDK

[Chemar]

Cheri, what you say makes great sense to me given our experience. Do you by any chance know where the strep might be in the body other than the throat? Or are you saying that the strep would still be in the throat but that the swab tests only for one type of strain but not for others? SDK

 

 

 

Hi

 

I really am very rusty on this as it is years since we did the PANDAS testing at Shands Clinic (where Dr Tanya Murphy is at the forefront of PANDAS research)

but basically the way I understood it was that

strep throat is caused by type A streptoccocus. it usually but not always shows as a positive culture from a throat swab. however, sometimes a throat swab comes back negative even tho there is strep A infection.

 

certain individuals can show a flareup in tics, OCD and other neuro/psychiatric issues with either clearly diagnosed strep throat or with strep A infection that doesnt necessarily manifest with all the strep throat/rheumatic fever symptoms.

 

There are also other strains of streptococcus( I think that would be type B and C etc) that behave like stealth pathogens in that they lurk in the body, causing a variety of symptoms which may not be associated with strep throat but can still cause illness and tic/OCD and other neurological flareups

 

so when detailed bloodwork is done for PANDAS diagnosis, they would test for ALL the strains of strep, and some also test for other pathogens which may or may not be implicated. and I dont believe it is confined to the throat

 

gosh, I hope I have explained that correctly but that is the gist of how it was outlined to us

[ad_ccl]

Kim - yes it was the white blood cell count and one other thing - can't remember what - that the doctor said indicated that he was fighting a viral infection at the time of the blood work being done.

 

SDK - my doctor is not sure what to think with the high titer tests - he just wants to treat symptoms not the numbers which I agree with - The explosion of tics was in August last year and he was at the 780ish number, in January when we retested he was doing well and has just come off 5 months of full antibiotics - so there should not have been any strep around - he was at 1200 - so as I said maybe it had shot up to the 2000 mark back in August and then been dropping. I had hoped the test we did in August would have shown much lower numbers but it was 750ish - so maybe from January to August it was coming down slowly but surely. I called to see if the new results were in and they are not yet - with hope they are lower, if even just by a little. I will keep you posted. I would SO LOVE for them to be normal. Again, though, my son is doing amazing - no tics at all, looks so healthy, happy, no behavioural issues, sleeping better, handwriting is good. So I am trying to not get too caught up with the numbers. I had just hoped that we could maybe go off the antibiotics and in it's place do monthly blood tests.

We have dramatically decreased the vitamin regimen with no ill effects. We went off them 2 weeks ago to do the blood work, I assumed he would start to fall apart within a week as he usually does - I was reluctant to have him off at all, so am happy that he continues to be doing so well ( knock on wood) He is much happier not having a bowl of vitamins put in front of him at every meal. With hope we will be able to be more on a maintenance dose - just a multi plus a couple others. He is eating SOOOOOO much better than a year ago!!!

 

Marie - are you still reading? How is your little one, and the older one - hope he has recovered from his accident.

[mmazz]

Hey Allison.

 

Yes I do read from time to time but time is the real issue lately. Between work and school and after school activities...I am exhausted. But you know for the first time in a long time this family is functioning normal. My little one has very minor tics and I guess that I am the only ones that actually notices. He continues to drink his juice daily and instead of morning juice I do it in the afternoon. As much as he says he rather not "juice" to everyone else, he drinks it down and smacks his lips. It is amazing to see just how much energy it gives him. So with that in mind he is now doing cross country. He runs 1/2 mile three days a week. He ran his first race Sunday and came in 6th place out of 17 schools running. There must have been over 60 kids there. So he is doing well. He does Cub Scouts and some after school science classes. So he is really busy. My older one is also doing cross country and awaiting full healing of his arm before he can play hockey again. I remember one of your posts that you said that there are more good days then bad and I am so glad for you that this still remains.

For me this journey has taught me to be a better mother to my children. A tired, thinner, grayer mother but a better one nontheless. This site was/is a blessing and for all that read it take the advise of the elders here. Although your childs program will not mimick to an exact to anyone here, but the blend of programs, the knowledge of testing and the much needed support will be yours for the reading. I thank this site for all it has done for me and my family. And Allison....you go girl!

 

Be Well

 

Marie

[ad_ccl]

Hi Marie,

 

So glad that things are going so well for you and your boys. I hear you on the grey hair. Seems it shows up overnight. Sudden onset trauma of my own!

Things are good here - I really think we are over the worst part and things will keep getting better.

Many good things have come out of this as I have said before. Silver linings are often hidden at the beginning!

I find I am less obsessed with the research etc as things are so much better. I do still try and check in daily as there is always something to learn. Life if busy here as well. The baby is giving me a run for my money. He was perfect for so long - thank goodness as I needed the perfect baby with all that we were going through. As things stabilized he became more of a handful...I guess his way of getting some much needed attention! I look back over the last year and am not really sure how I kept my head above water at times. It is amazing where you get strength when you need it.

I am so grateful for the three perfectly imperfect boys of mine. I do hope the two younger one's do not get PANDAS in the future but feel if they do I will be so much better prepared. I read a quote recently and it really stuck with me. With children, the days are long but the years are short. I am trying to appreciate every day, even those riddled with frustration.

 

Thank you for all the support you have given me and so many others. I remember back to the early e-mails when we were both so new at this...what a long way we have both come - and I know it shows in the tone of your more recent e-mails.

 

Happy Fall.

[eli]

Hi, my name is Eli.

 

I have 2 sons. My oldest son... was diagnosed with Tourette's, ADHD, and OCD at the age of 8. We have experienced ALL the symptoms that I have read in the columns, .. and more! He would hold his breath for 3 minutes at a time, continually throughout the day, and in a few instances, he would collapse from doing so... He would rub his head, in the same spot so much, and so hard, that he would pull his hair out along with it. He experienced spitting, blinking, twitching, phobias, and at school, he could never complete any of his work. He has been under a doctor's care since the age 8 and is on a regular prescription, of Prozac and Seryquill. He is now 22 years old, and I'm proud to say, that he is doing extremely well, attending Sheridan college, for computer engineering. Although, he's still suffers with OCD and phobias, mentally, his tics have however, subsided.

 

I just want to say, don't get discouraged, there is light at the end of the tunnel. With perseverance, support, and hard work, they can be wonderful contributors to society.

[Guest Deirdre]

Hi CFinEP,

 

Just wanted to add to what Ronna has already told you. My son was also diagnosed a year ago with PANDAS after a sudden and explosive onset of tics. Antibiotics did initially clear things up but each time we went off antibiotics the tics returned. To make a looooong story shorter...and to give you some hope...my son is doing very well - he is on prophylactic antibiotics to try and prevent another strep infection ( I still have mixed feelings on this), he does have ups and downs, nothing like the first few months though. He does get tics and the emotional laibility, poor handwriting, ADHD type behaviour before an onset - but these episodes are getting less and less - tics are quite subtle now and only last a couple of days. We are no longer having complex motor and vocal tics. He did have a chronic cough for several years prior to the PANDAS - interestingly this cough did not go away on antibiotics, but did go away when we took him off dairy. He also had eye blinking a few times prior to the PANDAS and that would go away on antihistimine drops.

What we find now, is tics can increase with any infection, viral or bacterial. The immune system is the key - we have been building his immune system by taking a variety of vitamins. We also did the food allergy testing and took him off all the foods he showed a sensitivity to, this was when we saw a big difference. We are also able to recognize some triggers, lighting, tv, excitement, all of these are improving over time.

I also have two younger sons and share your concern about what is in store for them. My PANDAS child had chronic infections as a child, and I think that probably weakened his immune system. I think so many variables are at play - we did do the ELISA testing on the other two and have been more careful about the foods they get, and we make sure to give them multivitamins.

 

Regarding tics associated with PANDAS. When my son has the overnight sudden onset, I am not sure a tic existed that he did not have. He literally ticced every second and the tics were both motor and vocal - and complex. It was crazy - I could not believe anyone's body could do what his was doing, no actor could imitate him. Tics included eye rolling, shoulder shrugging, sniffing, coughing, twirling his hair, arm jerks, leg jerks, etc etc etc, many at the same time. It was horrific to watch. Luckily we have never had tics to this same degree as the first onset. Last week he had a stomach upset and we had very little emotional stuff and minor blinking, this lasted about 3 days - he is pretty much 100% now. We did keep him home from school for a few days. We are now taking the approach that if he is ticcing, he is fighting something, so it is best for him to rest.

 

Regarding the question of whether PANDAS goes away - I am of the belief that it does. I have seen such dramatic improvements already, we also now think my older brother may have had PANDAS as a child, not as severe as my son. He is 100% fine now.

 

Good Luck

[Guest Deirdre]

I hope I am doing this right--my son suddenly began ticcing after he got off the bus on the first day of school--he started with complex vocal and motor tics--I was beside myself to say the least. his blood work came back negative for active strep--a throat culture was also negative-his titer came back at 480. The peditrition said this just shows that he has had a strep infection in the past--but just to be on the safe side treat with a course of antibiotics. Now the neurologist said not to treat. In the mean time I came started treating him with magnesium and had fantastic results!!! He was virtually tic free for 2 months-suddenly they are back with a vengence. Now I am thinking 1.-due to going off the Feingold diet at school with hlloween candy and/or I should have treated with antibiotics. I don't really have much faith in the dr's and am going to a new reccomended by Bonnie Grimaldi next thurs. Any ideas/suggestions out there?