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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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I'd like to hear what other's experiences with math has been since math difficulty is supposed to be a symptom of PANDAS.

 

My son(13) has always somewhat struggled, but when he was younger I was more concerned about his reading than his math. He seemed to progress along okay in math, with speed being slow. And he could never remember how to convert mixed numbers to improper fractions and vice versa. But we plugged along. We homeschooled then.

Last time he started a part time school, but we stayed on our math curriculum since he wasn't up to the level they were working at (7th grade Saxon in 6th grade). Last year also is when his major exacerbation hit. I didn't really notice math being affected, but our ability to work together was a problem, so second semester I got him a tutor to teach him math. She wasn't that great, but got me through the rest of the year sane.

 

This year I've noticed a huge decline in his ability to do math. When I asked him about it, he told me that he is struggling with even adding and subtracting, and that he just can't think clearly. I had switched him to a computer based program, but when I looked at his work, he wasn't getting concepts he has been doing for years. A few weeks ago I started pulling pages off the internet so I can give him a whole page of practice of a single concept. It took him about a week to finish one page. So I gave him a page of just adding and subtracting--still took him several days of math time to complete this with lots of errors. When I had him come fix his work, he still got them wrong. When I drew his attention to a specific problem where he had to do 5-3, he came up with every number but 2, and he gave me numbers higher than 5. After about 45 sec. or so, he finally said 2. Aye yie yie. I have no idea how to help him.

 

Is this what Pandas is doing to him? He has been on Augmentin since Thanksgiving, and I just took him off this week following our Rothman apt. The augmentin didn't seem to help much, and he is starting a research study for OCD there, so he can't start something else yet.

 

I'm wondering if anyone else saw this type of decline, and what helped?

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We definitely saw a decline in math skills during the heart of a bad exacerbation, and there were some commonalities with what your DS is describing: confusion, inability to focus. Our DS also described being overwhelmed by all the information on the page . . . as though the other problems and numbers on a page of exercises interfered with his ability to focus clearly on the one problem he needed to do. We didn't ever see anything so dramatic as not being able to subtract 3 from 5, though.

 

Some things we found that helped: 1) Instead of working directly from a page in his math book or worksheet, we had him copy the single problem down on a clean sheet of paper and then work it; that helped eliminate any confusion brought to his processing by all the other numbers and words on the page; 2) Alternatively, we took a plain sheet of paper and cut a whole in it the approximate size of one problem. Then he could slide it around on the page to highlight the problem he needed to work on, while again taming the confusion brought on by all the other numbers, etc. on the page; and 3) Though time-consuming and not for the long-term, sometimes what seemed to finally work would be his dad or me, sitting at his elbow while he worked a problem, and asking him to explain each step to us as he went along. I think that by using more parts of his brain at the same time . . . verbal, visual, math, etc. . . . it helped keep him focused and on track, without feeling as though he was getting confused and losing his way, especially in a multi-step problem. And if he did appear to get confused or lose his train of thought at any point, we'd be there to prompt him, "What's next?"

 

I think to a large degree, our kids lose a lot of confidence in their own abilities due to struggles like these, and half the battle is supporting them, reinforcing that these struggles aren't forever, that they're not "dumb," that they CAN do it, etc.

 

Finally, though you aren't seeing any measurable impacts via the Augmentin yet, I wouldn't necessarily give up on it. We used Augmentin also, and there were definitely times when we thought he'd plateaued and the Augmentin wasn't helping any more. But when we took him off, he would regress in about 8 days' time. After a few tries at that, we went back to look at our journaling of his condition and came to realize that he wasn't entirely plateauing . . . it was just that the impacts were getting more subtle. But they were still coming.

 

Good luck!

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I notice when in a flare, everything goes downhill with my ds. It has got to be that when the brain/receptor sites are inflamed that it messes with the ability to focus. Memory issues must be at play here as well, and that can play a huge role is what looks like regression in math. I used 5htp with both my kids. My pandas child received no benefit from it. My non-pandas child, whom is a little add benefited greatly from it. It increased his ability to focus. Each child is different, so perhaps your child might benefit from it?

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DS is in 10th grade taking trig/pre-calc honors. He does not know his times tables and has to count on his fingers for 5+3. He is in remission from OCD, but still struggles with memorization when numbers are involved. When he has his biggest exacerbation, the math skills were much worse.

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My son was really hitting stride in math in 9th grade and was placed in the highest Algebra.

 

It was right at the beginning of 9th grade that he started falling off the cliff. He could no longer add 3+2!!!

 

Dr.T talks about this in a recent radio pandas show. They lose the ability to retrieve math concepts but can sometimes still learn new concepts or more complex math.

 

It comes back. DS is still homebound, but over since the fall (1 year after things started falling apart), he says his memory is back and he can function math wise. We'll see he just took his first assessment with LS online school (first time he's doing school work since January 2013 : (

 

Once he feels better, he still has a lot to catch up...almost 2 years if HS.

 

T.Anna

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T Anna that's such great news!! I was told at the NIH that they see bright kids who kids two years if hs but when they are ready, come bounding back, graduate at the top of their class, and go to good colleges. Let's hope your son will follow that path!

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Pik, did you have any other symptoms of pandas when you were in high school? I love to hear from adults who believe that they may have had pandas as children. Pandas is so relatively new that most of those adults probably never received any type of treatment. We know that although pandas is a relatively new diagnosis, it is certantly not new. I like to hear stories of how those adults "recovered" and how their lives are today. Do you remember having any sort of abx. Treatment as a teen?

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DS (now 18) went through a horrible math decline from about 9th grade on, and the horrible part was that the math sequence he was in, at the high school he was in, allowed no deviation from the geometry, algebra 2, pre calc, calc path. Just at the end of this semester (senior year) he has started to come out of it. Don't know if the decline was caused by anxiety, or the anxiety was caused by math decline, but for a while he had to act out extensively before he could even sit down to attempt homework. A lot of the acting out had to do with me, so I had to get a tutor for him and he has pretty constantly had a series of very calm, patient tutors for the whole 4 years. He hasn't failed anything, but that was bought with a whole lot of stress. This last set of calc finals though, he got an 86 (after systematically failing all tests and quizes this year.) He actually let me review with him, and I was astonished at what he knew and what he could do--calm and systematic.

 

What changed? Could just be time (DH, the skeptic's, take). Could be the methylation supps DS added this summer (molybdenum, DMG, hydroxy B12--extra credit if you can immediately figure out what mutations he has :)) Could be clonidine that we added last summer. Could possibly be sarcosine powder that supposedly helped with OCD in research trials, although I found that if I add the dose that was used in the trials, it results in intense anger. Lower, as always, is better. Could be improved therapy. But he isn't out of the woods by a longshot. Just wanted to agree with the previeous posters who found that the knowledge is there once the evil PANS demons are banished.

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Our DS15 just got an IEP coded as OHI (Other Health Impaired)...just signed off on it yesterday. We are in NC. Math was a big reason, and reading/verbal skills also. Our DD18 also has a more minor case of PANDAS and she is weak in math. I was weak in math as well. My kids get PANDAS from me since I had Sydenham's Chorea. So...something with quantitative reasoning is affected it seems when one has PANDAS...at least for some kids. When there is swelling in the brain, weird things happen, is the way I explain it to myself.

 

I was glad to see the school psychologist who recently tested DS15 knew about PANDAS, and it is on paper with the school system that this is the disorder qualifying the OHI IEP. We are excited...pretty major step for us in getting DS help...with this IEP on paper, it is formal...NC law now recognizes our child has this disability (PANDAS) and will get services because of this disability. The lead EC teacher in the meeting documented it several times as well. They seem very willing to help DS...he just had to go thru a lot of testing and paperwork. Dr L signed off on the PANDAS diagnosis. I explained different docs call it different things depending on who you talk to. Right now, DS15 is more PANS than PANDAS, since he hasn't had strep in a long time, and his titers are low...always have been. But, his current treating docs have found evidence of other autoimmune issues, but that's another topic.

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Miss Mom -

 

I had severe onset OCD after first becoming active with someone who had strep when I was 14. At 15 I had guttate psoriasis which i thought was just an allergic reaction. Also at 17 I had suspected rheumatic fever which I never went to the doctor for. I had joint pain which I just attributed to heat and smoking too much. I now know I had erythema marginatum on my back. The OCD and joint pain and depressive symptom lasted for years until I had glomerularnephritis at 28, at which time the doctors were telling me there was nothing wrong with me though my kidneys were failing. After sic months of fever, I took a one-month course of penicillin 500 mg three times per day, which made me pee and pee one night, and the fever resolved. The next day though I just went nuts. All types of hallucinations and ideas of reference. I was hospitalized and first given a diagnosis of bipolar, then schizophrenia. I kept telling them about PANDAS, which I had read about and which was clearly my story, but they wouldn't listen. All types of antipsychotics were tried and nothing resolved the symptoms until three years later when the psychiatrist decided to try Anafranil for OCD. It cleared everything up in like two days. It was miraculous. I am also on low-dose perphenazine. I have just about no more psychiatric symptoms now than most "normal" people. I feel a little numb inside and burnt, but I think that's due to going through three years of . I recently started seeing a rheumatologist which finally started listening to me. ASO was very elevated at 1600 and dnaseb at 600. He put me on penicillin which I discontinued after a few months because I did not feel well. I have a followup with him in a few weeks, so we'll see what's going on. Also he diagnosed me with fibromyalgia and sleep apnea. I think both of these started with the rheumatic fever, the sleep apnea due to huge tonsils and the fibromyalgia just a reaction. You can feel free to call me if you'd like to talk further at 215-450-1643. Thanks. When I first read about PANDAS a light bulb went off. I was like "THIS IS WHAT RUINED MY LIFE."

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Ds, 14, had horrible problems with math. We would have to review the concepts every single night and spent over an hour on math alone. I felt so bad for him, but we made it through. Memorization and maps have always been difficult for him as well. IVIg helped him to recover his math skills and now he is one of the brightest in his math class. Since his tonsillectomy, his grades in all subjects have been wonderful.

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Since you said you stopped the Augmentin after visiting the Rothman clinic -- I am wondering if they advised you to stop it since you were going to be on a different antibiotic? Will he be part of Dr Murphy's azithromycin research?

 

I am hoping that you did not just stop it cold, with nothing to be given instead?

 

Math was a huge issue during exacerbations in our house, and the only way out of it was to treat the illness. I hope the study at the R clinic is a great help to you--

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