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

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

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Hello, I am a new member but not new to PANDAS. I have been on this journey for 8 years with my son. He got strep when he was 6 and changed overnight. We did the ER and he was whisked off to the psych ward. After many days they diagnosed him with severe OCD and PANDAS. They even videotaped for Teaching purposes. Gave me respirodal and outpatient behavior therapy. Later in therapy the doctor came to me and asked what I had done because he showed no signs of OCD and his tic was gone. He had been on a Z pack for an ear infection. Could of saved us so much grief if given earlier. We continued to bump along with a homeopathic strep pill ( pill has been discontinued), some changes in diet and a round of antibiotics whenever a flare arose.
5 years later we had a horrible flare and loss of 30lbs so we went back to the same ER but this time with his medical records. Wethought we would get either an antibiotic drip, steroids, or IVIG. Whisked away again to psych but now they ignored their own diagnosis and they refused to do any blood work! Released him 4 days later with us getting parenting lessons and cognitive behavior therapy if we could get him there since he would try to jump out of moving cars. That night I think he had a grand mal seizure.

2 months later and a lot of ###### ( besides behavior he could no longer read or write and math disintegrated) we got to a neuro-immune dr. He had strep, low titers,mycoplasma pneumonia , and HSV-6 (herpes simplex virus) titers 16X higher then normal! Also his IGM/IGE allergies were at life threatening levels. The Dr addresses everything one at a time so he can see what is working. Food first. No wheat no dairy. It was very difficult but we saw some improvement. Next when we went on the antiviral Valcyclovir in 36 hours we saw remarkable improvement. He then added antibiotic along with serotonin lifter. Because he lost his organizational skills Intuniv was added. He was back on honor roll except for math.

Most days he is a joy to be with and I remind myself to cut him some slack since he is a teenager. I have joined for multiple reasons. I would like to learn to integrate natural medicines. Are there ways to help with Math besides tutoring? I found out I test positive for Lyme from the new culture test and what do members think of that test. How are they being treated for Lyme. I also would like to help others on their journey and give them hope.

Sorry I wrote a book. Thought it would be better for understanding where I came from and what I have done. Thanks for listening / reading. 3bmom

PS. I also have a son with dyslexia and Irlen. When he first put on his tinted lenses and read a paragraph I was BLOWN away! I still get chills. Now he is starting his second year in college. I saw that Helen Irlen is on your board. THANK YOU FROM THE BOTTOM OF MY HEART! Every entering kindergartner should be tested.

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I enjoyed reading your post. What a journey you have certainly been on and I can't imagine the frustration you must have gone through with the medical profession. Thank you for joining and helping others with your experience. I'm still new to all of this and at the moment, I'm still awaiting blood tests. My son (8) has both motor and vocal tics, at this stage the only comorbid condition that I can see is his Irlen Syndrome.

 

I have to agree with you about all children should be tested, it is amazingly common with children that seem to have difficulty grasping the skills of reading and writing. It took me about 3 years of trying speech therapy and occupation therapy with no success. It was accidental that I stumbled across Irlen Syndrome and I'd never even heard of it before this year. I was extremely sceptical about it at first, but my son has made the choice to use the coloured paper and filter for reading. For me the penny dropped when he asked about the Amsler Grid I use to track my visual degeneration. My son gave it ago and told be he saw running lines. He put the coloured filter over it and then told me he saw boxes (as a grid should be). He is being reassessed next month to get his glasses. It has certainly been a major break through for him and now I see him more interested in reading. We still have a long way to go with writing skills as he can barely get a word spelt correctly, but we have a lot of ground to make up. Just lucky we found it otherwise he would have struggled for the rest of his school years. I'm one happy mum. Now just to try and improve his tics.

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Thank you for your response. What is the Amsler grid? Is it a part of Irlen testing? We were fortunate a teacher was passionate about Irlen and she offered initial free screening and then a referral for confirmation.

 

For the tics have you tried diet? Blood work should help point you in the right direction. Our tics were layered with compulsions and obsessive thoughts. They disappeared with valcyclovir since his blood work was high in viral titers, but before medicine we had improvement with no dairy.

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Welcome, and thanks for your post! You are sure to be a value member of our "family" here!

 

It seems deterioration in math skills is such a common theme among many of us here, and odd that it is frequently in combination with kids who, pre-illness, were actually somewhat prodigious in terms of math skills, too!

 

Have you tried zinc supplementation for attention/focus? We found it accidentally when DS seemed to be developing a cold, so we started having him pop those Zicam lozenges to fight it off; he was atypically focused and able to stay tuned to into his math and other tedious homework much better, so we began giving him zinc supplements on a daily basis, and it does seem to help.

 

With respect to math, what are your DS's primary challenges? If he's like a lot of other kids, it's not a matter of his not being capable of doing it; it's more an issue of focus and not becoming overwhelmed by the many steps required, the sheer number of problems, or the organization of the formulas on the page? We had a couple of strategies for combatting this when DS was struggling: 1) Try using a postcard and cutting out a slit in the middle of it, just large enough to allow a single math problem or equation to show through the window. This isolates the one thing he needs to focus on and drowns out all the other stuff on the page that can add to distraction and confusion in terms of organizing the problem and working the solution. 2) Try having him write down the problem he needs to solve, all alone, on a single sheet of paper, and then work it out. Again, isolating it from all the other letters and numbers that appear on the page of the textbook or workbook seemed to help our DS. 3) Ask him to demonstrate to you how to solve the problem by explaining each step he needs to take in solving it. By involving other processes (speech) in the process of solving the equations, I think our DS was better able to organize his thinking, and having his dad or me by his side to ask, "Then what?" helped him maintain his focus and momentum.

 

Over time, with physical and mental healing and by keeping his math skills somewhat still in play, our DS was able to regain the footing he lost, and now he can do his math independently again. Just a few ideas!

 

Good luck!

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Thank you for the great suggestion of covering up the other math problems! The page is so messy since we lost some handwriting skills too. We are repeating Algebra. He was a year ahead so it won't make a big difference but his grades fluctuated so much we couldn't tell what he really understood and we wanted to make sure he has a solid foundation. Hopefully repeating he will catch anything missed and what comes easier will rebuild his confidence.

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Have you heard of pyroluria? I know very little except it can be an issue in autism, anxiety, depression, alcoholism and Lyme.. Fits right in with pandas. They suggest zinc too!

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