Our story, DS6, PANDAS, ASD, hope and questions

[TwoSocks]

Want to present our story to all of you and see if you have any advice, and can think of something we haven’t yet.

 

DS is almost 7. He has had two major PANDAS flare ups that lead to lots of tics which finally got the attention of Drs. Currently, DS is doing pretty well overall. He is also diagnosed with PDD-NOS, although he has not yet been officially diagnosed he likely will be when we do the ADOS tests again. We did them last when he was 3 and it was borderline. He does have impaired social skills, more apparent with peers, and conversational skills. When we began this odessy, he was on the following medications: Ritalin and tenex (guanfacine).

 

He had his first PANDAS episode in pre-K. We didn’t know what was going on at the time, as we thought we were dealing with behavioral issues, in retrospect we were dealing with symptoms of PANDAS, OCD – rigidity, anxiety, emotional liability and eventually tics (in the end he looked like the third base coach giving signals and it was near constant movement). Luckily for us, the teachers knew about PANDAS and suggested that might be the issue. It took us a long time to convince his Dr. who after testing titers discovered how insanely high they were. We finally found the right antibiotic and within 24 hours EVERYTHING settled down and we were almost at pre-PANDAS level. I’m not sure we have ever been back to baseline honestly, but, not sure. We lived with PANDAS so long before we knew what it was, at least 4 months, maybe a lot more. BTW, I think the fact that DS had other issues caused the Drs to write everything off as, ADD, OCD, possible PDD, etc.

 

So, we found our antibiotic and carried on, sharing our story with everyone since most have never even heard of it. After that first flare up, whenever we saw a spike in tics, we tried antibiotics which had mixed results. At this point we were working almost solely with our Developmental Pediatrician since our regular pediatrician said he didn’t “believe” in PANDAS.

 

So about 1 ½ years after the first flare up, we found we were using antibiotic frequently – not constantly - but they weren’t having much effect. Beginning of first grade and he was doing OK, then we started to see a decline in general. It wasn’t until we started seeing the tics that I knew we were facing PANDAS again (yes in retrospect we were probably seeing the it whole time and should have been treating it). While desperately trying to find a PANDAS Dr. we were still working with our Developmental pediatrician (DP) who prescribed antibiotics, which while they didn’t do much for symptoms, we needed since his school was a HOTBED of strep, especially his class. We also tested his titers again which were elevated (he almost never tests positive for strep). Our Developmental pediatrician, while a PANDAS “believer” was suggesting a neurologist and possible non-PANDAS OCD, and meds to treat the symptoms. I was not a believer in this theory!

 

I can’t stress how hard things were (January 2012) but, considering this group I don’t have to explain Finally, the DP prescribed steroids, prednisone 20mg 2xday for 5 days, almost as an afterthought, I’m not sure why I wasn’t asking for them since I was well read in PANDAS by that point, I guess I was waiting for a PANDAS Dr. We gave him his first pill on a Monday night, by Tuesday night all the tics were gone. GONE. (You know this though) I was so terrified that the tics would start all over again after the steroids “wore off”, but, since then we have actually done fairly well.

 

We did find a Dr, I am sure I found her name here somewhere. She is an immunologist @ Newark School of Medicine and Dentistry, this is good because she accepts insurance, and also that is a good institution which at least in theory should be on the cutting edge of “new” things. We are able to pay for the more famous Drs., but since this is the beginning of our journey I didn’t want to start spending enormous amount of money out of pocket yet.

 

She was wonderful. Honestly I didn’t understand much she said (LOL) but she took copious notes, drew some blood and then prescribed azithromycin for 30 days, and VSL#3. As my DH said, she had a very clinical approach, which I think is positive. I had brought so much information, meds backgrounds and lists and charts and graphs and notes, and she didn’t see any of it. Probably better she draw her own conclusions. So, that’s where we are today. The blood test results should be back soon and I am eager to see them. We have not had an exhaustive search of his blood for whatever possible underlying infection might be causing these problems.

 

So here we are, that’s my story and here are my questions:

 

Does anyone use VSL#3? I heard it has strep and after paying 60 for a bottle, it is sitting in my fridge and I’m terrified to administer it. What do you think?

 

Am I missing anything obvious here?

 

Thank you so much for reading this far and giving your valuable opinions about my DS and what we are doing to help him. Also, thank you for sharing your experience and the things you have learned, it has helped me tremendously.

 

Kathryn

[Kimflow]

Kathryn,

 

I have only known we have been on the PANDAS train for 5 weeks now...but looking back, I know we have been riding it longer than that.

 

I think that the VSL3/Strep discussion if a heated debate.

 

I can only share with you this:

 

In Feb. my son was struggling. I could not figure out why all the anxiety and trigger words that he would usually just have one of were now suddenly ALL TRIGGERS ALL THE TIME plus even more. A few weeks before, I had pulled VSL 3 because I thought....maybe he doesn't need it and it is very expensive. When I saw his drop in language in Feb, I said I better add that back in as maybe drop in language is gut related. I noticed that it did seem to affect him negatively for the first time ever and he had been on VSL 3 for years without any obvious issues.

 

We then went on to later read about PANDAS and take my son in to do a rule out swab which came up positive and then the PANDAS diagnosis. Then I remembered the VSL 3 that I had restarted and how it seemed to have affected him and now I thought I realized why.

 

So I have pulled the goat yogurt and goat kefir (as I dont' know what strains are in the kefir for sure). Doesn't matter anyway because we have also found out that he is positive for blocking and binding CFA so no dairy of any kind at all, not even goat. I have other options for probiotics and since there seems to be some debate on the strep strains in probiotics and PANDAS, I am choosing to find other answers.

 

I am sure others will post their experiences and I will be anxious to read those. Everyone here is so wonderful at sharing what they have been through....we newcomers would have a much harder road without them.

 

Kim

[MomtoJake]

Hi Kathryn! I sent you a PM-- my son is also 6 and is also PDD-NOS with PANDAS.

[MomtoJake]

Hi Kathryn! I sent you a PM-- my son is also 6 and is also PDD-NOS with PANDAS.

 

And BTW the Private Messages can be accessed in the upper right hand corner of your screen- took me awhile to find this out!

[Kiera]

Hi Kathryn,

sent you a pm!

[TwoSocks]

Thanks everyone for your replies. Kim I will have to look into those probiotics. I didn't know VSL#3 was a heated topic. My son seems to have an iron stomach like mine, but, I don't want to test it.

I will get to my PM's today - thanks!!