What sort of academic struggles does your child face?

[EAMom]

Wow! That is a big deal. I would agree with pulling him from school. I would hope that the school would want to work with you to find a better solution to his issues vs. sitting in the hallway. What grade is he in now? It doesn't sound like he would lose much by staying out of school, esp. at this age, while you are working out the pandas.

 

I hope things will get better with the steroids. So, far, I would say that IVIG has really helped dd's academics...which were a big source of frustration/anxiety for her. The past couple of days she's been going to her room and does her homework by herself, which is amazing.

 

re Math: if you son is getting frustrated with the computation (and it is a word or reasoning problem) let him use a calculator.

 

Also, be sure to stay away from any inside playgrounds (like at McDonalds, or at a mall)...those are way too germy!

[ShaesMom]

Also, be sure to stay away from any inside playgrounds (like at McDonalds, or at a mall)...those are way too germy!

 

Just to add to EAMom's comment-stay away from face painting in public places as well. Both my kids picked up Impetigo in August when I let them paint their faces.

[thereishope]

I'm not taking the actual poll since my son had just turned 5 and many of the topics wouldn't fully apply to him anyway. However, when we tried to do his preschool homework with him he wouldn't follow directions, wouldn't pay attention, and would change the rules just to get a rise out of us. His fine motor skills were never affected. Some mentioned specifically art. My son is an amazing artist, way above his age. He draws in such detail and can pick apart another image to duplicate it. His art skills never changed during an episode.

 

I did definitely notice a slow down in any progress he was making in speech therapy. He made strong, fast strides in it prior to PANDAS. During PANDAS, he was almost at a stand still. Now, that he is recovered, he is once again fixing sounds and progressing rather fast. I believe the lack of progress during a PANDAS episode had something to do with what was going on with his brain. Speech therapy is retraining the brain.

[Megs_Mom]

I found it very interesting that in Saving Sammy - he was a math genius, even at the worst of times.

[L Haven]

I'm curious. When my son was first diagnosed with Pandas, I thought he was the only one who struggled with reading. Unlike the published symptoms, he's strong in math. I'm now coming across others who are in the same boat. So I figured I'd try out this polling option to see what sorts of challenges everyone faces in school. This is my first attempt, so apologies if I screw it up.

 

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. He was

 

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.

[Kayanne]

I'm curious. When my son was first diagnosed with Pandas, I thought he was the only one who struggled with reading. Unlike the published symptoms, he's strong in math. I'm now coming across others who are in the same boat. So I figured I'd try out this polling option to see what sorts of challenges everyone faces in school. This is my first attempt, so apologies if I screw it up.

 

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. He was

 

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.

 

I'm really sorry your going through this again...this board has helped us tremedously...It was my dd6's kindergarden teacher who first showed the most concern reguarding her behavior shift. We we seeing some chages at home, but not enough to be really concerned. It was very touching when we met her, and she began to cry...she was very worried, and in her 25 years, said that she hed never seen anything like it.

 

I'm in a bit of a rush...so I can't really add more right now...hang in there...there is a help out there....you may just have to travel. Go to www.pandasnetowrk.org and leave you contact info.

 

read this new thread, I think DCMom and Shaesmom covered almost all of the bases.

 

http://www.latitudes.org/forums/index.php?showtopic=5407

 

~Hugs

 

Good luck,

Karen

[ajcire]

It is interesting to me with the math as my ds has always fascinated us with his math skills, his logic, ability to find a pattern. He's now in 2nd grade. We never saw a decrease in his skills during anything.

 

He started reading at 3... he is an incredible reader and speller. He walks around spelling things sometimes just for fun.

 

He has very neat handwriting but he really hates writing. He also is a very concrete thinker and can be very literal.... if there answer is in the book he can find it.. if he has to think outside the box a little.. it's a bit harder for him.