Trying to figure out PANDAS

[LisaM]

Hello everyone,

 

A few of you may remember me from early summer. My then 4 year old started with eye blinking and shoulder shrugging. Her brother had strep at the time but we did not test her because she did not have "classic" symptoms but did have a very bad upper respiratory virus. About 10 days after onset of tics an ASO titer was run which came back normal so from what I read here and other places we put PANDAS out of our minds. Then she got a very minor sore throat and we brought her in right away and she was positive for strep. It happened again the following month with just a long lasting cough. I gained so much information from this site and began the Bontech vitamins for my daughter. As far as we know, she has been strep free since with numerous swabs throughout the months. Her tics went away when we started Bontech (which was slso the same time she had ended zithromax) and things have been ok.

 

I come back to this group to learn more and perhaps contribute...

 

With her having had those two bouts of strep without any classic symptoms I cannot get out of my mind that I am sure we missed strep in the past. In fact, she had some really bad nights of screaming, for which I am painfully, painfully sorry I didn't take her to a doctor - and following that time she is a different child - oppositional behavior, anger, major sibling jealousy, sleeping issues, all of which seemed to wax and wane - but some of the very difficult periods were long. Recently she has had some extreme separation anxiety and I feel like I keep trying to put the pieces of the puzzle together. We tested her for strep at the time of the separation anxiety and was negative.

 

I really feel now that this could be more of a PANDAS type situation even though she tested negative recently with the separation anxiety. Perhaps the onset of tics in the spring was due to the viral infection she had which I have heard can be a trigger. Untreated Strep may very well have triggered this whole thing from the beginning. Recently we think her possible lip puckering has come back, although she has developed this chronic nose congestion that really bugs her. But her behavior is a bit angry again, and she has dark circles under her eyes. She has had some candy since Halloween, which we never eat...

 

I have since learned that it is much more accurate to run both the ASO titer and the anti-DNAse titer at the same time. We have never done that and I think we should.

 

I know that if her titers are normal our current peds would probalby not give antibiotics. if we are ever in the situation where the tics/behavior more strongly return could I find a doctor who would be willing to try.... Would a DAN! doctor??

 

Aren't there any other tests that can rule PANDAS either out or in? I've read about certain markers and interferon gamma things???

 

I know several of you have seen Dr. Murphy. What tests does she run exactly? Has anyone seen Dr. Swedo?

 

My concerns are that of all you parents, is this progressive? Do the people with extreme tics/behaviors in young adulthood have it that bad because it was not known how to treat it as a young child? Or the root cause was never found? If the root cause is strep, should antibiotics always be tried at least during an exacerbation or flare up?

 

Can anyone help with separation anxiety?

 

Thanks so much

 

Lisa

[amy1]

It's scary to read your post as it sounds like we have the same child!

i wrote you earlier, but dr murphy's extensive bloodwork looked at things like toxins, liver function, etc. i do believe that DAN doctors do that other testing but am not sure. i do know that dr murphy and her partners combed my child's peds records and found every infection she had, lots of ear infections, strep, eczema, constipation, etc. They diagnose her with most likely pandas, ts, ocd and adhd although right now i think she's pretty mild and doesn't present with significant tics. our issue is mostly the sep anxiety and the attention disorder. the tics i can live with, it's the disorders that come with it! check out that book i suggested. also, sheila rodgers' book is most helpful!

[LisaM]

It's scary to read your post as it sounds like we have the same child!

i wrote you earlier, but dr murphy's extensive bloodwork looked at things like toxins, liver function, etc. i do believe that DAN doctors do that other testing but am not sure. i do know that dr murphy and her partners combed my child's peds records and found every infection she had, lots of ear infections, strep, eczema, constipation, etc. They diagnose her with most likely pandas, ts, ocd and adhd although right now i think she's pretty mild and doesn't present with significant tics. our issue is mostly the sep anxiety and the attention disorder. the tics i can live with, it's the disorders that come with it! check out that book i suggested. also, sheila rodgers' book is most helpful!

 

I will! Thanks Amy. We have the Sheila Rodgers book. We are seriously considering going to Florida! I do wonder about trying antibiotics for flare ups. I worry about progressive damage.

[tlkinser]

Hi LisaM,

I am in the same boat, as I have a 5 yr old who began ticcing nearly overnight last spring. (He was then 4, like your daughter.) After I spent two weeks crying, not sleeping, not eating and watching his every move, it was discovered that he had strep (throat swab was -, but blood was +). The neurologist dx him with Sydenham's Chorea, but my pediatrician thought it was more like PANDAS. His tics got a little better, but never completely went away. Whenever they would get a little worse, I'd take him back in for blood work, just SURE that the strep was back. He was negative every time! That is why the second neuro said that he has TS, not PANDAS. On a side note, my 6 yr old dd started with vocal tics a couple of weeks after my son (I thought I was going to die); I took her in for a strep test and she was +! I am having a hard time getting the PANDAS dx since they both still tic but do not test positive for strep anymore.

 

I do plan on getting in to see Dr. Murphy at Shands and have spoken on the phone with one of her research assistants. I think it can only help my children. For now, we just spent alot of money on an environmental dr who ran a series of tests on my ds (urine, blood, stool, hair and saliva). I am going to pick up the supplements tomorrow so we'll see how well he responds to those. I will give this a couple of months and then move on to another course of action. In the meantime, I plan on setting up an appt with Dr. Murphy so we can get on her waiting list.

 

Best wishes to you. I am confused and frustrated as well. I never in a million years thought I would be dealing with something like this.

 

tlk

[bmom]

Wow! I was wondering if the Dr. put either of your children on antibiotics and what the result of that was?

[Dedee]

Lisa,

 

I am so sorry for what you are going through. I only wanted to say that I viewed a presentation that discussed PANDAS given by Dr. Swedo that was posted on this site. It was very informative. I am sure others here viewed the posted link as well. Anyway, I believe that I remember correctly that she said that often times they see symptoms in PANDAS children before they ever see the titers actually start to rise and that is more common than you would expect. So it is very likely that you are not loosing your mind and you know exactly what is going on with your child. Just stay strong and remember that you know your child better than anyone and whatever you do, don't let anyone make you doubt yourself. It would certainly not be life altering to try a round of antibiotics to see if you got any improvement in her symptoms. If there was no improvement, you simply stop them. No harm done. I am sure you know all the other things to try as well. BTW, seperation anxiety is one of the BIG PANDAS initial symptoms according to the Dr. Swedo lecture. If you haven't view that you really should. I am awful about not being able to remember where these posts are. I had saved it to my hard drive then viewed it and deleted it. I found it awesome, and wanted to send it to every doctor in our area :-). Well, I must be off to bed so I can get up to work in the morning. Please keep us updated on your daughter. I will pray for your family. Stay strong and take care of yourself also.

 

Dedee

[LisaM]

Thanks Dedee,

 

That is very interesting - especially about the titers...

 

here's the link

 

http://www.ucdmc.ucdavis.edu/mindinstitute...ded_events.html

 

Lisa

[LisaM]

Wow! I was wondering if the Dr. put either of your children on antibiotics and what the result of that was?

 

The first strep we caught after the onset of tics was about 3 weeks later and was treated with anantibiotic and we did see an improvement in the movements. Then the next month she got it again and took zithro and there was even more improvement after that. Then we started with the Bontech vitamin and the movements were completely gone. How much of it was the vitamins I'm not sure, but we feel the antibiotics definitely helped. For a while I was attributing the improvement to the vitamins having put the PANDAS idea out of my head, but in thinking more about the chronological order of events, I realized things got better after the two rounds of antibiotics as well. I think the vitamins may have helped calm her and hopefully have helped with her immune system (although I'm not sure about the grapeseed extract with all that Cheri has posted about immune boosters and immune modulators) I do give extra of Bonnie's magnesium taurate.

[Dedee]

YES, Gosh I just loved Dr. Swedo's part. I really may try to download that to give to my pediatrician. I want to just send it to every doctor in the nation after some of the crazy responses we got from some "specialists". So Lisa, how is your daughter doing now? Any better? I think the school year is the hardest on these kids. My son told me last night that his throat was hurting a little. I almost came un-glued. He doesn't have his tonsils anymore so it is really hard to tell anything when you look. I think it is just some sinus drainage from a little cold going through the house. You just can't help but be a bit paranoid. Hope things a looking up for you. Let us know.

 

Dedee

[LisaM]

YES, Gosh I just loved Dr. Swedo's part. I really may try to download that to give to my pediatrician. I want to just send it to every doctor in the nation after some of the crazy responses we got from some "specialists". So Lisa, how is your daughter doing now? Any better? I think the school year is the hardest on these kids. My son told me last night that his throat was hurting a little. I almost came un-glued. He doesn't have his tonsils anymore so it is really hard to tell anything when you look. I think it is just some sinus drainage from a little cold going through the house. You just can't help but be a bit paranoid. Hope things a looking up for you. Let us know.

 

Dedee

Hi Dedee,

 

It was very interesting about the titers that they rise 4 to 6 weeks after the symptoms present. Not what you would think about missing a strep in the past necessarily.

 

Dedee, I would definitely take your son in for a strep test and culture it. Believe it or not I have actually purchased at home rapid strep tests for just such instances. I would never trust it over a culture but it can at least be a preliminary to help me decide when to go in to doc. I also used it to test myself and my husband to make sure we are not carriers.

 

But I would take him in to be sure. My daughter merely told me she had a tickle in her throat and I took her in and she was positive! Before all this I never would have taken her in!

 

Lisa

[bmom]

Where can you get these strep tests? Now all I need is a way to get the antibiotics and I wont even need a Dr.!!!!!! Sometimes I get to the point where I think hmmm. why didn't I have the forsight to go to medical school!

[Dedee]

Hey I am right there with you. Tell me where I can get the rapid strep test. I am a nurse and I know how to read them, but I never knew where you could purchase them. Does your daughter still have her tonsils? My son has done much better since we had his removed. Of course he has been on antibiotics most of the time since then as well so I'm not sure which has helped the most. Keep us updated. Thanks.

 

Dedee

[tlkinser]

Yes, I would LOVE to know where to purchase the at-home strep tests!

 

Thanks,

tlk

[Mustang Carole]

HI,

 

Googled this...

http://www.kk.org/cooltools/archives/000188.php

[LisaM]

Our doctor friend orders them for his family and he ordered one for us. He said though that anyone can order them online. I think I searched once and there were many choices.