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possible PANDAS-help please


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I have been researching PANDAS and reading through the forums here, but I am still a little uncertain if my son could possibly have PANDAS and I would like to ask if those of you with experience could please give a desperate mom your opinion?

My son's dr is sending us to Dr. B for an evaluation, here is our story:

My son is now 9 yrs old in 4th grade, when he was 6 yrs old in 1st grade something changed, he went from a typically developing kid to an out of control child. He began having temper tantrums/rage attacks, anxiety issues, including seperation anxiety. He had no conrtol over his emotions...I thought he developed bipolar disorder. He also started having urination accidents and constant need to urinate which he never had before. Sounds and noises bothered him, everything everyone in the family did to make noise bothered him. He began an obsession with food, he would eat it, hoard it, steal it from others, at all costs, and we had no idea why and could not get him to stop. To this point he has now regressed in school, his writing is terrible and a daily struggle to complete most assignments. At age 7 he was diagnosed with Hashimotos which is autoimmune thyroid disease. I had hoped maybe his behavior would improve after starting meds, but it never did. His dr NOW thinks the Hashimotos could have been brought on by the PANDAS. So in the last 3 years he has been to several psychiatrists, been diagnosed with ADD and posible mood disorder-nos, he has been on tons of psych meds and STILL is. I have taken him to a naturopathic dr and tried GF diets and all natural diets, he has been in counseling, and nothing has worked. His dr started to think about all of the symptoms and everything we have tried and finally came up with PANDAS. He feels pretty strongly my son has it. My concerns are that when I read or watch videos the children seem to be so much more autistic like with their symptoms, and the OCD or tics seem to be the major symptom. My son has had major anxiety issues and then the obsession with food, but that is it, not the typical repetitive OCD behaviors. Also, he has had a cough that has been ruled out for everything else. We have seen every dr possible, it is not asthma, allergy, infection, and does not respond to any meds. His psych told me months ago he thought it was a tic. Other than that possibility (which I am not positive it is a tic), he does not have tics. Lastly, all 3 of my kids have had strep, I just can't remember if my son had it at the exact time this all started. The last 3 years have been so hard, going from dr to dr searching for an answer as to what happened to my son. I know something is wrong with him, but if its not PANDAS I dont want to travel to see Dr. B and waste his time, put my son through another experience, and have my hopes of an answer crushed again. Is there anyone here who has a child dx with PANDAS who did not have major problems with tics or the typical repetitive type OCD? Did anyone have a child with more anxiety related symptoms, or am I being led down the wrong road?

I would so appreciate any input/advice from anyone here.

Thank you so much,

Sincerely,

Stephanie in NY

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Do not have time to post, but did you happen to have his strep titers tests run? He sounds absolutly PANDAS and that would explain why the SSRIs don't help. Look at this as a good thing, because with help and a good doctor like Dr. B....you have such hope of your child improving after these 3 long years! Many of us have gone down the wrong path for a long while. Our son was diagnosed Aspergers, years ago and now at 11 after stopping Prozac and beginning Antibiotics and treatment from Dr. B, he has NO signs of autism. I am actually excited for you to get the correct help and have the newfound hope! Prayers your way! Keep us posted.

Edited by 3boysmom
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His symptoms do sound like PANDAS to me as well. My daughter who is diagnosed with PANDAS did not have tics. She did exhibit OCD behaviors but not consistent. Her biggest symptom now is separation anxiety. I am not familiar with Dr. B as this is all new for us and we are still trying to find "good" help. Regardless if seeing just one more Dr will help your son I would go for it.... They could b the last Dr u need to see:). Best wishes!

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Im glad you are going to see Dr. B. He will help run all the tests but I want to tell you that what a lot of us have discovered is that this disease...(call it what you want, PANDAS, PITANDS, PANS)can be triggered by many different or multiple infections. For some it can be strep but for others there have been layers of infection that triggered the illness. I just want to encourage you to rule out all chronic infections including strep, mycoplasma, lyme, bartonella, and babesia. Lyme, bartonella, and babesia are all tick born infections that need to be treated with a combination of antibiotics by a skilled lyme literate doctor. It isn't as simple as treating for strep if your child is infected with one of these infections. Some of us on this forum went with the PANDAS diagnosis but when our children did not respond to appropriate treatment, we were forced to dig deeper and look at some of these more complex infections. Dr. B will run the labs but I would insist that he check for lyme and co-infections via IGENEX, a tick born disease specialty lab. Lyme testing is complicated and the standard tests run by Quest or Labcorp are not adequate when trying to rule out lyme. I don't want to overwhelm you with information right out of the gate but your post made me suspicious of lyme. Given that your son is experiencing issues with his thyroid and that you live New York, a lyme endemic area of the country, I think it's important that you look at all of these possibilities. We wasted a year on PANDAS treatment before we discovered lyme disease in my daughter and I wish I would have known then what I know now. Please check out the lyme forum. The folks over there will answere questions too. In the meantime I think going to see Dr. B is a good start.

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It sounds like PANDAS to me. However, bells went off when I read that your DS has been diagnosed w/ Hashimoto's. I'm assuming Hashimoto's thyroiditis. I happen to know of a child diagnosed well over a yr ago w/ PANDAS and has had two IVIG's that have failed to give improvement. This child was recently diagnosed w/ Hashimoto's encephalitis and he is in the hospital now receiving treatment. Its very rare. I would urge you to follow up and investigate this possibility while pursuing the PANDAS. The treatment is IV steroids, I believe. His basic thyroid levels were normal. His thyroid peroxida and anti thyroid globulin AB were off the charts.

 

As for the PANDAS, my DS's initial presentation was extreme irritibility, anger, anxiety all culminating in rages. Then the hoarding came. Hoarding is a form of OCD. OCD in children does not always present like the typical things you would think of like hand washing. It fooled me for a while, as I did not realize my DS was exhibiting OCD behaviors. I, too, thought he might have suddenly become bipolar, except for the fact that his behaviors came on suddenly after a FluMist vax. I couldn't wrap my head around the fact that a 5yo boy who was very typical and 'normal' in every way could be so suddenly 'ill' after a vax.

 

If you want a good explanation of all types of OCD in children, read Tamar Chansky's Freeing Your Child From Obsessive Compusive Disorder. It really opened my eyes to all the OCD behaviors my DS really was exhibiting.

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Im glad you are going to see Dr. B. He will help run all the tests but I want to tell you that what a lot of us have discovered is that this disease...(call it what you want, PANDAS, PITANDS, PANS)can be triggered by many different or multiple infections. For some it can be strep but for others there have been layers of infection that triggered the illness. I just want to encourage you to rule out all chronic infections including strep, mycoplasma, lyme, bartonella, and babesia. Lyme, bartonella, and babesia are all tick born infections that need to be treated with a combination of antibiotics by a skilled lyme literate doctor. It isn't as simple as treating for strep if your child is infected with one of these infections. Some of us on this forum went with the PANDAS diagnosis but when our children did not respond to appropriate treatment, we were forced to dig deeper and look at some of these more complex infections. Dr. B will run the labs but I would insist that he check for lyme and co-infections via IGENEX, a tick born disease specialty lab. Lyme testing is complicated and the standard tests run by Quest or Labcorp are not adequate when trying to rule out lyme. I don't want to overwhelm you with information right out of the gate but your post made me suspicious of lyme. Given that your son is experiencing issues with his thyroid and that you live New York, a lyme endemic area of the country, I think it's important that you look at all of these possibilities. We wasted a year on PANDAS treatment before we discovered lyme disease in my daughter and I wish I would have known then what I know now. Please check out the lyme forum. The folks over there will answere questions too. In the meantime I think going to see Dr. B is a good start.

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Wow! I am so glad you told me all of that! This is all so new to me...for 3 years all I have known is psych drs, psych meds, and thinking mental illness. I was sure if he did not get dx with PANDAS then we must be looking at mental illness, but how could that have just come from no where? I did not have any idea at all about how he could have been affected by lymes or the others you mentioned, and that they do cause many of the symptoms he has.

Thank you so very much for your help! He had his first round of blood work today (at least 12-15 tests) so maybe we will get an answer...I am just never hopeful anymore.

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It sounds like PANDAS to me. However, bells went off when I read that your DS has been diagnosed w/ Hashimoto's. I'm assuming Hashimoto's thyroiditis. I happen to know of a child diagnosed well over a yr ago w/ PANDAS and has had two IVIG's that have failed to give improvement. This child was recently diagnosed w/ Hashimoto's encephalitis and he is in the hospital now receiving treatment. Its very rare. I would urge you to follow up and investigate this possibility while pursuing the PANDAS. The treatment is IV steroids, I believe. His basic thyroid levels were normal. His thyroid peroxida and anti thyroid globulin AB were off the charts.

 

As for the PANDAS, my DS's initial presentation was extreme irritibility, anger, anxiety all culminating in rages. Then the hoarding came. Hoarding is a form of OCD. OCD in children does not always present like the typical things you would think of like hand washing. It fooled me for a while, as I did not realize my DS was exhibiting OCD behaviors. I, too, thought he might have suddenly become bipolar, except for the fact that his behaviors came on suddenly after a FluMist vax. I couldn't wrap my head around the fact that a 5yo boy who was very typical and 'normal' in every way could be so suddenly 'ill' after a vax.

 

If you want a good explanation of all types of OCD in children, read Tamar Chansky's Freeing Your Child From Obsessive Compusive Disorder. It really opened my eyes to all the OCD behaviors my DS really was exhibiting.

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yes, my son has Hashimotos thyroiditis. Someone else mentioned there could be a family connection to that but there is NONE. Not one person on either side of family with thyroid disease. I had hoped that once his levels returned to normal range his behavior and other symptoms would improve, but they never really did and his endo said his symptoms had nothing to do with hashi's, that it had to be ADD or something. I am so glad you explained about OCD, I am going to look for that book right away. Thanks again!

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This is one of the best lists of the different ways OCD can manifest in a child - my bet is that some of these things are going to hit home for you. OCD is notoriously good at hiding. It is not just the stereotypical hand washing and repetitive behaviors.

 

OCD in a child

 

You may also want to look at the "helpful threads" section at the top of the forum. There's some really good info for newcomers.

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