Learned a lot in last few years

[reactive]

Hi all. I think it has been about 2 years since I have posted on here. Busy living life, happy to say. Our PANS DS 12 has done very well since his initial PANDAS flare at age 4. We are lucky, I think...but sometimes it can get rough. But nothing like some of you deal with day to day. We have dealt with PANS for 8 years now, and just saw a doctor 2 days ago and was finally given zithromax 250mg twice weekly. We'll see. Still have more questions than answers, I think.

This is what I have figured out for OUR (stress on OUR) situation in the last 2 years. When DS was first labelled PANDAS, I figured strep was the cause...he got it all the time, and when baby brother got older he would get it too. And since I have been prone to strep, I would get it. A few years ago I was sick with a fever for 4 days, woke up the 5th day with a rash from neck down. Followed by knee swelling (reactive arthritis flare). The following week, after I am on prednisone for said knees, my 2 boys got strep. Next thing you know, my ASO is high...ooops must have had scarlet fever. BUT...I have learned in watching my DS 12 that some viruses, not all, and some allergens trigger flares for him. I have also now learned that I have chronic cryptic tonsillitis...and have learned that even though strep can linger in the crypts, so can h-flu and other bacteria. Lovely.

In addition, I have come to realize, after feeling like a highly trained neurologist, that DS 12 with PANS has a tic disorder separate from the PANS. And this tic disorder is from my side of the family. Just one year ago, after dealing for 7-8 years of PANDAS, saw my own mother have motor tics. Looking back, she did a lot of sniffing when I was a teen which annoyed me greatly. I have another DS 8 who is very much ADHD and has had transient tics...but is NOT PANS. The icing on the cake was over a year ago seeing my out of state cousin who is mentally delayed, and noticing she has a definite tic disorder. She also looks like she has some autistic traits but is not autistic- very social- but has OCD and is savant like with numbers. It took 7 years of PANDAS to remember this cousin and link her to our situation. Genetics is an amazing thing...but not always in a good way

Recently our DS12 PANS was diagnosed with a mildly enlarged spleen- found by ultrasound after an acute episode of belly pain. He has had ultrasound in April, July, October...same result no larger or no smaller...but CBC and metabolic panel normal and negative EBV and CMV titers. We need to see the hematologist again later this month for next ultrasound and visit.

Our new doctor we saw this week gave us an order for more labs...CBC with smear, metabolic panel, vit D level, zinc level, thyroid function, ASO, antidnase B, ANA and sed rate. She also ordered a echocardiogram to check heart since my description of early symptoms overlap with sydenhams chorea and now the enlarged spleen. This doctor also thought we could try a very low dose of clonidine in the am to help with tics. Since she just gave us these meds, his first dose of zithromax was last night which he will take daily for 3 days then twice weekly, and the first dose of clonidine was this AM. He was very tired from the clonidine and his tics have worsened considerably. I really wish I would have started them separately because now I do not know which med increased the tics (even tho clonidine is supposed to reduce tics)

Anyhow...I am so TIRED...I do not know how you parents with more severe kids do it...I is very tiring trying to figure out what to do!!

[Dedee]

Not trying to throw a wrench into what you have figured out. But I would question a diagnosis of non-PANDAS tics in a family where there is a case of PANDAS, Sydenhams chorea, ADHD, autistic traits, and many other things you have listed that are running in your family but you seem to insist are Non-PANDAS related. Just because it wasn't this generation doesn't mean it wasn't infection induced. Many of these things you are describing in your children and your family members sound like PANS issues to me. I have no doubt that there are physicians who have told your family that this is genetic and has nothing to do with illness. But please remember that most physicians would never think to coorelate ADHD or tics with infection. My pediatrician told us for years that my daughter was simply strong willed. It was never even suggested that she might be OCD. After all she didn't wash her hands over and over. And you beter believe no one EVER told me that all those episodes of pneumonia had ANYTHING to do with her behavior issues, and those funny little sniffing noises were just a habit she had.

 

Just trying to give you something to think about. If you haven't seen a PANS specialist, it would be well worth your while to do so. It's amazing what a physician with the right take on things can do.

 

Dedee

[ptcgirl]

I have to agree with Dee Dee, although I've been in reactive's situation too. My hubby has ADHD and a decent amount of anxiety/OCD. When my dd developed overnight OCD we were shocked but doctors looked at family history and kinda nodded along that this was bound to happen. We tried a ton of psych meds. Seriously to the point of which her psychiatrist said he couldn't do anything more. That was nearly a year ago. My dd was 12 and had severe OCD, couldn't even go to school one day a week, was suicidal, unsocial and distant from everyone except me(mom). Im so happy to tell you that after many abx, five ivigs, ending and lowering all psych meds to nothing or nearly nothing, my dd now 13 is healthy physically and mentally. She is vivacious, happy, extremely engaged and social. It is miraculous healing. I believe God led our daughter to healing. It is not impossible even when there is a genetic predisposition. Don't give up. There is hope.

[reactive]

Thanks to both of your replies. I do know that our DS 12 is PANDAS/PANS, there is no question...he was started on prophylactic antibiotics. But we do have a family history of OCD, tics, possible autism, ADHD, anxiety and panic disorder in several family members that do not fit PANDAS/PANS criteria. So it can muddy the waters a little for our PANDAS/PANS son and how to treat him. He reacted horribly to steroid exposure...it should have lessened his symptoms per PANDAS treatment guidelines- but it made him worse. So, I do think it is possible to have a tic disorder like Tourrette's and still have PANDAS. If 1 in 100 kids have a tic disorder anyway, there are bound to be some PANDAS kids who have one, like mine. But it is hard for us to know how to treat...steroids made him worse...but clonodine for tics made his tics worse too.

 

Not only that, but it can be stressful to figure out a correct diagnosis when so many cases of this seem to be so different but yet the same There are times I read of some families having Lyme disease and I wonder if we could have that...esp since our PANDAS DS has enlarged spleen of unknown cause X 10 months now....but we also have a bad strep history. Like I said, can be hard to figure out. I think the physician we have just seen and began the prophylactic antibiotics is a good place to start...we are not and have not been in a position to travel to one of the leading PANDAS physicians. We have just this past week started zithromax 250mg x 3 days then twice weekly for the long term. This physician treats with steroids if a PANDAS flare shows no sign of improvement after one week and if that does not work she does order IVIG for patients. Our son is not that severe...but we want him to do better and feel better...one year ago hallucinations began occuring with PANDAS flares, where he had not had those since he was 4.

[kimballot]

As I was reading your post I was also thinking of lyme and was glad to see that you have also been entertaining that notion. Also, when you say there was a worsening with steroids - how long were the steroids given? My son always did worse the first week of steroids as they were building... but then did better in the end. Of course, if your child does have lyme or an ongoing infection then steroids are not the best idea because they suppress the immune system.

 

Has your son had a good immune workup for immune deficiency, also. Common variable immune deficiency is frequently an underlying cause in these kids with repeated infections.... and most of the time the low antibodies do not show up in early childhood. The immune deficiency foundation says many people are not diagnosed until adulthood, even thought they have repeated infections. If he has some type of immune deficiency it could really underly a chronic infection that is resulting in enlarged spleen.

 

Regarding clonodine - many kids with tourette opt to NOT use meds for tics becuase they either don't help or have bad side effects. I don't think that is uncommon from what I hear.

 

You are saying that your son is not that bad, but really it sounds like you have a lot on your plate and are working hard to sort through it all. I wish you the very best!