Question re: PANDAS

[justinekno]

This is my first time posting under the PANDAS board but I have posted on the tics board. My youngest son has had tics since 3 yrs old and after many tests and treatment for gut issues, we are exploring the possibility of PANDAS. Our dr has ran the bloodwork for strep and felt he was borderline so it made sense to do a round of antibiotics. We just started three days ago.

 

My question is - can PANDAS cause constant tics and ocd tendencies or does it have to come in waves? At what point do you confidently say it's not PANDAS and move on?

 

Thank you so much for all of your stories that you share. It's very comforting to know we're not alone

 

Justine

[peglem]

My question is - can PANDAS cause constant tics and ocd tendencies or does it have to come in waves? At what point do you confidently say it's not PANDAS and move on?

 

For my child (problems started in infancy) the movements and OCD are constant features, but we have episodes of severe intensity vs milder, more manageable periods. Her strep appears to be chronic (carrier state) so the milder periods tend to happen when she is on abx. PenVK did not work for us and she tested positive for strep while on it (with severe symptom emergence).

As far as how to know its not PANDAS, I would say when you've found another for sure cause. I firmly believe that the tics and OCD are symptoms of some underlying disease process and if PANDAS is not the cause-SOMETHING is.

[thereishope]

Welcome.

 

It's important to remember that what works for one child, may not work for another. The first step is trying antibiotics to clear the infection. Once the infection is cleared , healing can begin. But antibiotics isn't as easy as it sounds. One has to find the right antibiotic for your child. It seems most on this board have had most success with Zithromax and higher dose Augmentin. I have also heard a handful with Keflex. Some kids may clear on amoxicillan and penicillan, but that's seems to be on oddity/rarity.

 

Here is one article that explains how pen and amox may not clear strep

http://www.entrepreneur.com/tradejournals/.../169459644.html

 

Finding the right antibiotic for your child, unfortunately, is a lot of trial and eror.

 

There is also a research study going on that is the closest thig there is to a diagnostic test. It is being done a Dr Cuningham. You send for a kit, have blood drawn, send it back. The results will tell you if your child falls into a PANDAS range. However, one has to remember that it is still in reasearch phase and it currently costs $400 since funding was lost.

 

Something else is that strep for many children is the original trigger, but they then have oterh triggers like viruses, allergies, etc. Also strep can hide in the sinuses, gut, anal strep, and for girls, vaginal strep. So what symptoms that seen to "just be there" w/o going away could actually be caused by hidden strep that the antibiotic did not erradicate. Alos, get all family members tested for strep. Some kids will have PANDAS symptoms surface from exposure only. One does not need to have a fever or sore throat to have strep.

 

Personally, your family history alone would send up red flags for me.

[justinekno]

Thank you both for the replies. I was looking through some labwork that we had done for gastro issues and I noticed that he was at the high mid-range for alpha & gamma haemolytic streptococcus. Is either the same "strep" that is at the root of PANDAS? He is also very deficient in zinc but I'm not sure if that plays any part in a diagnosis other than the sensitivity to light that I read about on the PANDAS website. We will have the rest of the family tested for strep too.

[peglem]

Thank you both for the replies. I was looking through some labwork that we had done for gastro issues and I noticed that he was at the high mid-range for alpha & gamma haemolytic streptococcus. Is either the same "strep" that is at the root of PANDAS? He is also very deficient in zinc but I'm not sure if that plays any part in a diagnosis other than the sensitivity to light that I read about on the PANDAS website. We will have the rest of the family tested for strep too.

Your zinc comment sent me searching....take a look at these-you may be onto something:

 

http://www.ncbi.nlm.nih.gov/pubmed/3896271...ogdbfrom=pubmed

 

http://www.ncbi.nlm.nih.gov/pubmed/1969150...mp;ordinalpos=4

 

http://www.ncbi.nlm.nih.gov/pubmed/1951946...mp;ordinalpos=7

[GatsMom]

Thank you both for the replies. I was looking through some labwork that we had done for gastro issues and I noticed that he was at the high mid-range for alpha & gamma haemolytic streptococcus. Is either the same "strep" that is at the root of PANDAS? He is also very deficient in zinc but I'm not sure if that plays any part in a diagnosis other than the sensitivity to light that I read about on the PANDAS website. We will have the rest of the family tested for strep too.

Your zinc comment sent me searching....take a look at these-you may be onto something:

 

http://www.ncbi.nlm.nih.gov/pubmed/3896271...ogdbfrom=pubmed

 

http://www.ncbi.nlm.nih.gov/pubmed/1969150...mp;ordinalpos=4

 

http://www.ncbi.nlm.nih.gov/pubmed/1951946...mp;ordinalpos=7

 

Good reading! Our DAN! always insisted my son be on a zinc supplement. Not ridiculous quantities but a boost everyday. In my quest to keep his daily pills down, I've back-burnered zinc thinking that because he's home he's not needing it to help ward off opportunistic stuff prevalent in school. I'll bring it back on again, at least 50mg for my 150lb'er. If anyone else is supp'ing zinc, be sure not to use it at the same time as any calcium supps as it will block their action.

[laurenjohnsonsmom]

Hi Justine,

 

My daughter started sneezing 10-12x a day, literally overnight. It increased to 25x a minute, nonstop, in less than a week. That is more than 20,000 a day! So I can attest to a "constant tic" Did I say she NEVER stopped (except in deep sleep).

 

Although she has responded very well to antibiotics and steroids, and at times, while only on high dose steroids, we saw 20 minute pauses (it was my Christmas present as it happened on Christmas Eve), she has NEVER stopped completely! The "trend" in PANDAS is that motor/vocal tics are the hardest symptom to get rid of 100%, sigh...

 

I can only speak to what relates to our daughter but I believe some children will stop ticing on antibiotic and/or steroids and that it has come back with either being exposed to strep or other infection, after vaccines, etc.. I'm sure many will share their stories with you.

 

PANDAS can manifest in many ways, it has a very broad spectrum. As Dr. K just told me..."Please be aware of the following: the real "trick" in PANDAS is establishing the diagnosis and choosing the appropriate treatment, NOT GIVING the treatment".

 

He is a wise man.

 

In regard to your question.."WHen do you move on"? I would say that if you find no rise in your daughters ASO/AntiDnASeB titers or any other family members (our daughter never got an ASO rise as she is one of the 37% that does not), if she does not respond well to antibiotics (sometimes you have to try more than one to find the one that works) and/or steroids, I might look into other possibilities.

 

My best piece of advice to you would be to consult with one of the PANDAS docs that are trying to help. Good luck.

 

Lynn

 

This is my first time posting under the PANDAS board but I have posted on the tics board. My youngest son (10 tomorrow!) has had tics since 3 yrs old and after many tests and treatment for gut issues, we are exploring the possibility of PANDAS. Our dr has ran the bloodwork for strep and felt he was borderline so it made sense to do a round of antibiotics (we live in N.E. and are trying 500 mg of Penn VK twice a day). We just started three days ago.

 

We have a family history of scarlet fever (me as a child and my older son when he was a child - also have a history of rheumatic fever from my husband's uncle many many years ago). My youngest son has had strep twice that I know of but as a child he had several fevers of unknown origin - one that led to febrile sezures at age 15 months.

 

My question is - can PANDAS cause constant tics and ocd tendencies or does it have to come in waves? At what point do you confidently say it's not PANDAS and move on?

 

Thank you so much for all of your stories that you share. It's very comforting to know we're not alone

 

Justine

[laurenjohnsonsmom]

Vickie,

 

You ALWAYS impress me with your quick and knowledge packed replies (I forgot to mention having Madeline's test, in my reply).

 

When I am rich (i will have to win the lottery and I don't even play, so don't hold your breath). I will establish a gigantic PANDAS research lab and information network and YOU will be the first person on staff!

 

You ALSO just earned my honorary degree of NERDYNESS! (SF mom was "pinned on", last week)!

 

You're the best!

 

Lynn

 

Welcome.

 

It's important to remember that what works for one child, may not work for another. The first step is trying antibiotics to clear the infection. Once the infection is cleared , healing can begin. But antibiotics isn't as easy as it sounds. One has to find the right antibiotic for your child. It seems most on this board have had most success with Zithromax and higher dose Augmentin. I have also heard a handful with Keflex. Some kids may clear on amoxicillan and penicillan, but that's seems to be on oddity/rarity.

 

Here is one article that explains how pen and amox may not clear strep

http://www.entrepreneur.com/tradejournals/.../169459644.html

 

Finding the right antibiotic for your child, unfortunately, is a lot of trial and eror.

 

There is also a research study going on that is the closest thig there is to a diagnostic test. It is being done a Dr Cuningham. You send for a kit, have blood drawn, send it back. The results will tell you if your child falls into a PANDAS range. However, one has to remember that it is still in reasearch phase and it currently costs $400 since funding was lost.

 

Something else is that strep for many children is the original trigger, but they then have oterh triggers like viruses, allergies, etc. Also strep can hide in the sinuses, gut, anal strep, and for girls, vaginal strep. So what symptoms that seen to "just be there" w/o going away could actually be caused by hidden strep that the antibiotic did not erradicate. Alos, get all family members tested for strep. Some kids will have PANDAS symptoms surface from exposure only. One does not need to have a fever or sore throat to have strep.

 

Personally, your family history alone would send up red flags for me.

[justinekno]

My concern with trying to peg this as PANDAS is that he has had this eye tic since he was 3yrs old. We have seen a neurologists for the past 7 yrs and was just told that he will outgrow it. After doing alot of research I got to thinking that there has to be some reason for it so we went down the road of seeing an integrative dr who brought up the idea of PANDAS after ruling out some other things.

 

We do have days where the tic is less than others but nothing more than days. It was so long ago that it started it's hard to remember if it was an "overnight" thing. He definitely meets all of the other PANDAS symptoms so I think it is worth exploring. If this antibiotic doesn't work, I think I will ask my dr at our visit in March if could consult with one of the PANDAS dr's.

 

Thank you for the advice. It is so hard to travel this road - I feel like all I do is research but if it will help my son then it will all be worth it.

Edited March 26, 2010 by justinekno

[thereishope]

I think alpha & gamma haemolytic streptococcus is group B strep. Maybe someone else will chime in about this? Group A is what is normally associated with PANDAS. However, many wonder whether Group B can cause exacerbations as well and there have been threads devoted to this. You can search for those on the bottom left. I mean if so many other things (viruses, allergies, vaccines) can cause an excaerbation, why should one believe group B strep cannot?

 

I completely forgot to mention that there are other PANDAS kids with unexplained fevers.

 

In regards to outgrowing it, I have heard the same about OCD too. But if you at all think it may be PANDAS, you owe it to your child to just not "wait it out". Afterall, if it is PANDAS, it could worsen and then you will have to deal with the "what ifs" and guilt.

 

Can your child take Ibuprofen? Some have found it eases some of the PANDAS symptoms. It's just a temp bandaid and does not replace trying to get to the root of the problem, but it is somethng to try. Now, not all PANDAS kids will see improvemnt with Ibuprofen, but if you do see some it is an indicator that something is going on. The Ibuprofen may take down enough swelling off teh basal ganglia that the child's PANDAS symptoms ease up.

 

And, Lynn, thanks for the compliment. There are so many others on here who know so much more than I do, but I really appreciate what you said.

[justinekno]

Here's another strange thing - whenever my son gets sick, a fever or a stomach bug, the tics go away - completely. That led us to believe that it was perhaps food related since when he's sick, he doesn't eat much. Now I'm wondering if there's something else to it. Hmmm. So much to understand.

 

He can take ibuprofen so we could try that "experiment" but to be honest, he's been on the antibiotic for four days and the tics have lessened quite a bit. More to understand. No wonder I'm always so tired!!

[thereishope]

If the tics are lessening on the antibiotic, that's a good sign of PANDAS! And, yes, some have said that while their child is sick, symptoms actually lessen at first. The calm before the storm. Like when their child has a fever, the child appears fine. Then....BAM!

[justinekno]

I apologize for seeming ignorant but I am trying to wrap my brain around this and boy it's overwhelming. From what I have read on the PANDAS Network "there will have been a strep event up to 4 to 6 months prior to onset" then does that mean that since my son's symptoms allegedly started at age 3 - and have continued for the past seven years with no major wax and wane (other than when he is sick), that his initial strep exposure would have been when he was 3?

 

I do know he has had strep twice (positive culture) - at age 5 and age 8 - but the tics have always been there.

 

If the tics are lessening on the antibiotic, that's a good sign of PANDAS! And, yes, some have said that while their child is sick, symptoms actually lessen at first. The calm before the storm. Like when their child has a fever, the child appears fine. Then....BAM!

[peglem]

then does that mean that since my son's symptoms allegedly started at age 3 - and have continued for the past seven years with no major wax and wane (other than when he is sick), that his initial strep exposure would have been when he was 3?

 

Probably. My daughter doesn't have medical proof of strep before age 10, but I think she started in the 1st year of life- certainly by the time she began walking..

[thereishope]

Unfortunately, if it is PANDAS (and by the response to abx it sounds likely), something happened at that 3 years of age. I know it sounds scary to think that was the case and you never knew he was sick. With strep, a person does not have to have a sore thraot, fever, etc to have strep. None of my kids get symptoms. Strep can occur in other places than the throat. Even some diaper rashes can be strep. Also, other things may cause PANDAS. Example, Mycroplasma P seems to be the culprit for some. Staph for others. mycroplasma Pneumonia is something you could request your doctor to test for. That would only be resolved through an antibiotic like Zithromax. Penicillan would not clear that up. If you flip through past threads, you'll see Mycroplasma has been a hot topic on here lately.

 

Has your child ever had a negative strep test?