Saying Hello

[L Haven]

Hi Everyone,

I'm so overwhelmed at having found this message board . . .not sure where to jump in. I'm happy to meet you. I've been able to find VERY little info on cognitive deficits, other than the deterioration in handwriting, which is fairly common. For older kids, the deficits are tough, because they're aware of the differences in themselves.

 

Here's my story:

 

In 2003 my bright, happy Checkers prodigy ("I've never met a grown-up I couldn't beat!") was in kindergarten, and having a great year. He developed scarlet fever (which I had always imagined as some turn-of-the-century, languishing disease - actually, it's "just" strep and a rash - who knew?). He was treated with antibiotics and good to go. About 3 months before kindergarten ended, I noticed that the teacher's attitude toward my child had changed. When I asked her about it, she said that he had recently become "quarrelsome," and hypothesized that he had "multiple learning disabilities." As a former teacher, I couldn't believe we were talking about the same kid. I was puzzled. About a week later, while opening presents on his 6th birthday, my son's head and neck body to jerk. He also developed a vocal tic - a sort of brief, high screech that was almost constant. The symptoms made no sense to me, and they were growing worse. We had no family history to help explain it. I checked into EVERYTHING, and then late one night I stumbled on some paragraph about children who've recently had strep, and subsequent behavioral changes. I printed it out and took it to my pediatrician the next morning. She said, "I've never heard of this," gave him a mega-injection of antibiotics, and called the Neurology Department of Children's Hospital. His ASO was very high.

His neurologist diagnosed him with PANDAS, and said it was the clearest case of PANDAS they had, because the previous strep infection had been documented by the pediatrician. One doctor seemed quite excited about this. At that time, many people did not believe in PANDAS as a discrete entity. One physician (an immunologist we went to) had never heard of PANDAS, and pronounced it "ridiculous."

At that time the treatment was pills (a major tranquilizer, and a neuroleptic (Thorazine) and IVIG. We tried 3 courses of different medicines; his symptoms worsened. He also had some visual distortions - has anyone else experienced this? He would see blue lines, or the bark on a tree would be a frightening face, etc. He had terrible side effects from the medication. Truly, he was more miserable with them than without. After 4 trials of different medications, we decided to wait it out with no more pills. He entered first grade still ticcing and screeching (although it was growing quieter), with separation anxiety and a bee phobia. About half way through the school year the symptoms slowly eased up, and ended.

 

We had 4 lovely PANDAS-free years. We hoped we were in the category of kids who only experienced one episode. We weren't. Strep swept through his classroom, and he got sick. He missed 4 1/2 months of 4th grade. His motor ticcing was so severe that his muscles ached. He was frequently frightened - even of things like the second floor of our house. He couldn't sleep alone. He had headaches and dizzy spells. He was angry. He began to have "misery tantrums" - I'm not sure how else to explain them. He would twist o the floor and sob, "I want to die." This could go on for hours. His was admitted to the neurology department at Children's. He had IVIG. Nothing changed. We spent a total of 4 days there. I discovered that now, EVERYBODY believed in PANDAS, and nobody (at least here in Boston) believed in IVIG anymore. We fought hard to get it, even meeting with a panel of neurologists to argue our case. Now they believed in Orap, which is an anti-psychotic, and can cause tardive dyskinesia (the hallmark of which is ticcing - now there's irony.) Why does Orap help tics? Dunno.

After about a year, the symptoms began to subside. Then he caught Fifth Disease at school. To our horror, all the symptoms returned. We had thought it was only strep we had to worry about.

 

Where we're at now: It'll be two years in January. We haven't actually had a period that was completely symptom-free. Each time my son begins to get a cold or flu, the symptoms return full-force. We can actually TELL he's about to get sick by the tics and tears and fears. We've noticed major cognitive changes - our 11 year old forgot the multiplication tables, couldn't name the months of the year, frequently seemed foggy about events that were routine. His teachers noticed the change immediately. Always good at Math, even addition took him a bit of time. He couldn't read with fluency, where formerly he'd devoured the Harry Potter books. The thing that troubles me the most is how he feels about himself. PANDAS has been going on so long that it has changed who he is. He uses anti-anxiety medication and anti-depressants. He has become pessimistic and self-conscious. To say his "self-esteem" is low is a major understatement. I miss him; HE misses him. So, a day at a time.

[EAMom]

Welcome!

 

where do you live?

 

Did your son have IVIG in both 2003 and 2007? Did they put your son on long-term prophylactic antibioitics (or only psych. drugs?) If IVIG is done but future strep infections aren't prevented with antibiotics then PANDAS can easily start all over again. BTW my dd also had an exacerbation after fifth's dz, as well as the flu. Once the wheels of pandas are set in motion, any illness (or stress) can trigger an exacerbation. Several other folks on this forum have had exacerbations with fifth's, so maybe for some reason that one is a bad trigger. We just did IVIG in August (and her math abilities are improving!) but we plan on staying on antibiotics (azith. 250mg/day) a long long time.

 

PEX is something you might consider. There is lots of positive feedback on Dr. Latimer (DC). I haven't seen her personally (I'm in CA).

 

I should also add that IMO it is really important to check family members for strep. Our younger dd is a strep carrier (gets strep, no symptoms) which affects our pandas dd . I believe it is important to avoid exposure to strep (even if on abs) post-ivig while the immune system is recovering.

 

Here's a post on academic issues http://www.latitudes.org/forums/index.php?showtopic=5364 . (In case you didn't see it.)

[mama2alex]

I'm so sorry to hear you are going through this again. It must have been such a shock after 4 years!

 

My son doesn't have tics, but there are some similarities with your son - feeling frightened, fear of bees, saying "I want to die."

 

When he got strep (after the four PANDAS-free years), did anyone prescribe a full course of antibiotics to knock out the infection? You just mentioned IVIG, but no antibiotics. Is he on antibiotics now?

 

I agree you should consult Dr. Beth Latimer in Maryland, because it's my understanding that she offers either IVIG or Plasma Exchange. Since you've already tried IVIG with no effect, it might make sense to try something else. I've read nothing but excellent feedback about her on this forum. We are seeing Dr. Kovacevic in Chicago in 2 weeks for IVIG, but if the IVIG isn't effective, our next stop is Dr. Latimer.

[monarchcat]

Hi and welcome! I agree that Dr. Latimer might be a good option for you. I am also in the Boston area and after two pediatricians who really don't know anything about PANDAS (I did my own research and diagnosing essentially) I am scheduled for a phone consultation with Dr. Latimer next week. I have a ped who will work with whatever treatment plan she recommends, but I decided that I had heard too many inconsistencies with the Drs in Boston and wanted to start with someone who understands this disease inside and out.

[L Haven]

Welcome!

 

where do you live?

 

Did your son have IVIG in both 2003 and 2007? Did they put your son on long-term prophylactic antibioitics (or only psych. drugs?) If IVIG is done but future strep infections aren't prevented with antibiotics then PANDAS can easily start all over again. BTW my dd also had an exacerbation after fifth's dz, as well as the flu. Once the wheels of pandas are set in motion, any illness (or stress) can trigger an exacerbation. Several other folks on this forum have had exacerbations with fifth's, so maybe for some reason that one is a bad trigger. We just did IVIG in August (and her math abilities are improving!) but we plan on staying on antibiotics (azith. 250mg/day) a long long time.

 

PEX is something you might consider. There is lots of positive feedback on Dr. Latimer (DC). I haven't seen her personally (I'm in CA).

 

I should also add that IMO it is really important to check family members for strep. Our younger dd is a strep carrier (gets strep, no symptoms) which affects our pandas dd . I believe it is important to avoid exposure to strep (even if on abs) post-ivig while the immune system is recovering.

 

Here's a post on academic issues http://www.latitudes.org/forums/index.php?showtopic=5364 . (In case you didn't see it.)

 

You guys are amazing . . . I can't describe what its like to talk to someone who understands . . . after all this time of trying to explain. Thank you for posting back.

 

We live in Boston. He had IVIG only in 2007. It seems a number of people have had episodes or exacerbations with Fifth Disease. He's had antibiotics intermittently - as soon as we suspected an infection, but never on a long-term basis as some of you describe. I think we need to do that. I'll make an appointment Monday. We do periodically all get checked for strep.

[L Haven]

I'm so sorry to hear you are going through this again. It must have been such a shock after 4 years!

 

My son doesn't have tics, but there are some similarities with your son - feeling frightened, fear of bees, saying "I want to die."

 

When he got strep (after the four PANDAS-free years), did anyone prescribe a full course of antibiotics to knock out the infection? You just mentioned IVIG, but no antibiotics. Is he on antibiotics now?

 

I agree you should consult Dr. Beth Latimer in Maryland, because it's my understanding that she offers either IVIG or Plasma Exchange. Since you've already tried IVIG with no effect, it might make sense to try something else. I've read nothing but excellent feedback about her on this forum. We are seeing Dr. Kovacevic in Chicago in 2 weeks for IVIG, but if the IVIG isn't effective, our next stop is Dr. Latimer.

 

 

Best wishes on the IVIG.

 

Yes, it seems plasmaphareses/plasma exchange/PEX (these are all the same thing, yes?) is something we need to look into.

He did have a course of antibiotics, but never over a long period of time as it sounds like some children have.

We had a truly infuriating, awful experience with hospitalization, and I think as a result we've become very cautious about interventions. But we must try again. Thank you for the advice. I will check into Dr. Latimer.

 

By the way, although IVIG wasn't the help we'd hoped for, my son breezed through the procedure with no side effects at all. Again, best wishes -

Lena

[L Haven]

Hi and welcome! I agree that Dr. Latimer might be a good option for you. I am also in the Boston area and after two pediatricians who really don't know anything about PANDAS (I did my own research and diagnosing essentially) I am scheduled for a phone consultation with Dr. Latimer next week. I have a ped who will work with whatever treatment plan she recommends, but I decided that I had heard too many inconsistencies with the Drs in Boston and wanted to start with someone who understands this disease inside and out.

 

Were your peds at Children's Hospital in Boston? Or private practice pediatricians? We would have to cast our vote with "inconsistencies," unfortunately. Although at least, even in 2003, they believed in PANDAS.

 

We've also done EEGs, EKGs, MRIs (to rule out a brain tumor), and nighttime monitoring (in the hospital) with video camera and leads attached all over his body.

 

I'm glad you have the phone convo set up with Dr. Lattimer :-) And thank you for replying!

 

Lena

[EAMom]

My feeling about waiting for an infection to start before doing abs is that it is a bit like closing the barn door after the horse has already escaped. My dd is really sensitive to strep. All ###### broke loose during her big pandas episode of Spring 08 (including a week in the hospital for malnutrition/anorexia) and it took months to get to get back to a somewhat "normal" level. She even responds when family members have gotten strep (while she remains on 250mg/day azith, which is pretty much full-strength) (not sure what will happen now post-ivig...hasn't been sick yet).

 

I always think of these kids as being "allergic to strep". By not being on antibiotics, it's like feeding a kid with a peanut allergy a peanut and then treating the problem afterwards. Of course some kids (like mine) are sensitive enough where she reacts if peanuts are in the same room (it's like there's some peanut dust in the air--being exposed to others with strep) but it's not nearly as bad as eating the peanuts herself (getting a full blown strep infecction and then treating with antibiotics after the fact).

 

DCMom has mentioned that a family from the original Swedo study even put their other 3 kids on antibiotics to prevent exposure to strep in their PANDAS dd post IVIG (until the pandas child hit puberty). (Once the other kids went off abs, one of the younger kids got PANDAS!)