more PANDAS Q's

[LisaM]

Hi there,

 

I haven't posted in a while. Have been busy researching and going to different docs etc. Brief sum - my 4 year old daughter had onset of tics a couple of months ago and tested fine for ASO titer but her brother did have strep at time of onset. She has since had strep and now has strep again. Both of these latest times she was virtually strep symptom free. Right now she has a virus and brought her and her bro in because her brother has a rash. The doc tested both of them for strep and she was positive and he was negative for rapid. They will culture it overnight but read it in the morning which will only be 17 hours. I will call in morn and request that they leave them longer per an earlier post saying they should be cultured 72 hours. I am sure they won't do it that long.

 

Moving on, my daughter doesn't have typical or classic signs of OCD that we can tell yet, but she does have many of the behavioral things as described in Dr. Swedo's info and they have been worse I think this week. She seemed pretty hyperactive this evening as well. I got a doc today who had at least heard of PANDAS although I'm not sure he knows about it. But he was willing to put her on zithromax as I told him I had read it was helpful with tics. He only put her on it for 5 days. What do you all think about that? Should it be longer?

 

I wasn't thinking PANDAS there for a while because of the low ASO titer, but now with this round and her behavior - very irritable, demanding, easily frustrated, a slight increasing in ticking, I'm not sure. Can't this all also be symptoms of Tourette's? These kinds of things have been going on for us for a while now leading me to think that strep has been missed in the past because we now know she doesn't show obvious signs.

 

Feeling sick about all of it, Lisa

[kim]

Lisa,

 

Can't this all also be symptoms of Tourette's?

You know, I don't even like the phrase "Tourette Syndrome" anymore. My understanding is that Tourette was simply a Dr. who recognized unusual movements as a physical disorder......not necessarily psychiatric. Now I think of this whole thing as more of a dysregulation of the immune system.

 

 

I wasn't thinking PANDAS there for a while because of the low ASO titer

 

 

I think what Ronnas has been trying to point out with all of her article postings, is that the ASO and antiDnase tests, are only useful when there is a negative throat culture. This type of testing can confirm strep, that was unable to to diagnosed with the culture. It really has nothing to do with a PANDAS diagnosis. This would be made from an increase of symptoms with confirmation of strep, whether that is made with a positive culture, or titers testing at the onset, and again at a later time, in the event of a negative throat culture) and observing a decrease in symptoms with the use of an antibiotics.

 

If your daugter consistently shows an increase in symptoms with confirmed strep, and improves with the use of antibiotics, I think you can assume PANDAS is a resonable assumption.

 

It seems to me, that any illness can flair symptoms in what is thought of as a "PANDAS child." That might not be accurate (I'm thinking of Alisons posts where she talks about her son having an increase in symptoms with a virus in the house?)

 

Also, I think there is an article that has been posted, that talks about an exacerbation of symptoms with a strep infection, suggesting that this is not the cause of TS or ISDS (immune system dysregulation syndrome ) only something that aggravates the situation.

 

Does that help at all?

 

edit

 

this statement "only something that aggravates the situation" is probably not very accurate, as the theory is that there is a specific autoimmune reaction within the basal ganglia? My question is, when are they going to start testing for these autoantibodies? Is there not an accurate test for this yet?

[Ronnas]

But he was willing to put her on zithromax as I told him I had read it was helpful with tics. He only put her on it for 5 days. What do you all think about that? Should it be longer?

 

Five days is the right amount of time for treating strep. Azithromycin is not the same as other antibiotics, it has a very long half life and 5 days of azith. is the same as 10 days on another antibiotic. My concern is that your son is not being treated. Really in my opinion (for what it is worth) is that your son and daughter should be treated at the same time. As well I think the adults in the home should be tested as someone may be a carrier and with a child in the home who shows an increase in symptoms with strep then this would be a reasonable step.

 

At the onset of of discovering my son had PANDAS (meaning by accident we noticed a huge, sudden improvement in his tics when he was started on Keflex for a post op infection) we tested everyone in the family for strep and were completely surprised when it was my one year old daughter who came back positive for strep and she had NO symptoms.

 

I wasn't thinking PANDAS there for a while because of the low ASO titer, but now with this round and her behavior - very irritable, demanding, easily frustrated, a slight increasing in ticking, I'm not sure.

 

PANDAS is very difficult to understand, kim's post was perfect, really it is the trend in the titer level that matters not a single isolated number. Some cases of PANDAS are easy to understand in that they are "classic", especially with the sudden, severe onset. Others are not so clear cut. TS and OCD can be the result of many different triggers, some children have more than one, with some kids having a more clear food trigger, environmental tigger, or immune trigger is the case...each child is different and some have several triggers, genetics is a complicated thing.

 

In our situation my son improved alot with antibiotics, but removing milk, corn, eggs, and chocolate and eliminating screens were very helpful, in addition with vitamins and an omega 3/6 combo.

 

I suspect your daughter has several things going on and you can think of strep as one of her "triggers" but not her only trigger, which would mean it is important to do exactly what you are doing, stay on top of the strep, have throat cultures done as needed and treat when positive.

 

Can't this all also be symptoms of Tourette's? These kinds of things have been going on for us for a while now leading me to think that strep has been missed in the past because we now know she doesn't show obvious signs.

 

Is this TS? well really, this is an impossible question. I don't know how to explain this in a post but regardless the "trigger" for tics etc, or the label you want to give it whether it is TS, PANDAS, OCD, transient tics, etc...isn't it all the same thing? Every kid is different, A PANDAS dx does not mean a child does not have a dx of TS, or OCD...for others gluten/casein is a trigger, remove gluten and milk from the diet and the tics improve, does this child have TS? If additives (feingold) and screens are a trigger, and you remove them and the tics improve, does this child have TS ...do you see why there is a controversy with PANDAS and why some do not buy into it...PANDAS is not a separate thing from TS.

 

In the beginning when I first started looking online for answers on braintalk specifically, I only posted on the PANDAS page, I would not even READ the tourette syndrome page because I did not want my son to have TS, PANDAS was MUCH more appealling because how convenient it was for me to explain to everyone that this was a "strep" problem and not TS! It is only with time and acceptance that I came to realize that "tourette syndrome" was ok for me and my son. That is what I mean by time being a great healer, with time all of this does not seem so difficult, everyone grieves and gets to the acceptance part, but for some it may take longer than others, but really we all get there eventually!

 

In our situation, say for instance, if strep did not exist would my son still have tics, etc. Well I suspect he would, his tics etc. were not a result of only "strep", he has an immune system problem (immune system dysregulation syndrome...I like how kim says it better!). The azithromycin works because it is acting as a immune system regulator, as well as preventing a strep infection, which is a trigger for him.

 

Anyways, now I feel like I am rambling and hoping this post made some sense as in the middle of it I was feeding my 2 year old breakfast which ended up on the floor!

 

You are doing the right thing! Take care, Ronna

[Ronnas]

this statement "only something that aggravates the situation" is probably not very accurate, as the theory is that there is a specific autoimmune reaction within the basal ganglia? My question is, when are they going to start testing for these autoantibodies? Is there not an accurate test for this yet?

 

Hi Kim, can you believe after all of this time...I still don't know how to do the quote thing...I think saying "strep is only something that aggravates the situation" is accurate because I think that it is not only strep that is involved, if this was the case then PANDAS would be pretty clear cut and without controversy among doctors. I think strep (and most likely other bacteria or viruses) is involved along with compromised immune systems due to vaccinations, and environmental conditions, and then a genetic susceptibilty.

 

For example, when things started for my son at age 5, in the same summer he had an untreated strep infection, his pre-K immunizations, he was exposed to a pesticide at a lake resort we were staying at, and genetically we have no history of tics but alot of auto immune diseases on both sides of the family. Though really when a family says they have no genetic hx of tics, well who knows, who really knows their family hx enough to say there were no tics, I don't think my dad did, but he died 5 years ago so I can't ask him, my brother and mom and I don't but really my mom's dad died when my mom was a 1 year old...maybe he did?

 

There is a test for autoantibodies...I think this is the D18/17 marker...I don't know much about it and I don't hear much about it, but you are right, we need a test which can show a marker for susceptibility much like the marker for breast cancer...we can only hope!

 

Ronna

[LisaM]

Thank you all for your very detailed and thoughtful responses.

 

Ronna, you are concerned that my son is not being treated... he did test negative for the rapid and I called this morning and the reading of the culture still looked negative and they are keeping the culture until tomorrow morning when the doc on call will stop by the office to read the cultures.

 

Are you saying he could still be positive for strep with a negative throat culture? Is it only the aso titer that can tell for sure? Having other family members tested is a good idea. My husband brought up the idea that maybe someone else has it or is a carrier. I most emphatically don't want to miss one in him as well.

 

Our doc told us that a person who is a carrier will always test positive for strep.

 

Lisa