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Minnesota Mom Freaking out!


Guest Motherbear
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Guest Motherbear

Hello,

I am new here. My son was diagnosed with Pandas and I don't know where to turn. I did some research online, and have met with Dr. Kaplan at the U of M, but he is not very helpful in terms of responding quickly with solutions. My son has a history of strep, had his tonsils out in 2008. This past March he contracted strep but the rapid test was neg. in about 2 weeks he had all the classic signs of Pandas - including 18 tics and unable to attend school. I found a sympathetic MD who believes that pandas is real, and a good psychologist who has worked with us on the tics. Over the summer, my son was very sick, (he seems to be always sick) but he never had a positive strep culture. Since school started, he tested positive for strep on Sept. 5, and then again on Oct. 9th. Please, is there anyone out there that knows a DR. in Minnesota that works with Pandas, at the Mayo Clinic or anywhere? Also, does anyone know of a support group for parents in the Twin Cities? I'm watching my son change into a different person. He is isolating and losing interest in things he used to love. I am devastated and at a loss. Please advise.

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Hello,

I am new here. My son was diagnosed with Pandas and I don't know where to turn. I did some research online, and have met with Dr. Kaplan at the U of M, but he is not very helpful in terms of responding quickly with solutions. My son has a history of strep, had his tonsils out in 2008. This past March he contracted strep but the rapid test was neg. in about 2 weeks he had all the classic signs of Pandas - including 18 tics and unable to attend school. I found a sympathetic MD who believes that pandas is real, and a good psychologist who has worked with us on the tics. Over the summer, my son was very sick, (he seems to be always sick) but he never had a positive strep culture. Since school started, he tested positive for strep on Sept. 5, and then again on Oct. 9th. Please, is there anyone out there that knows a DR. in Minnesota that works with Pandas, at the Mayo Clinic or anywhere? Also, does anyone know of a support group for parents in the Twin Cities? I'm watching my son change into a different person. He is isolating and losing interest in things he used to love. I am devastated and at a loss. Please advise.

Will they check for other infections like mycoplasma and lyme? We're waiting on our son's results for those. I'm not sure of MN resources but there is a thread on here for doctors all over the place. Beth Maloney also has one on her website - google Saving Sammy. Good luck with everything -

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Not much help on doctor or resources, but you are aware that Minnesota and Wisconsin have a horrible Lyme problem? My sister lives there and even she did not know about all the cases of Lyme in MN. I know of a good LLMD that has treated patients from MN before. PM me if you want his name.

 

Cobbie

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Guest Motherbear

Thank you for the replies. We did contact the NIMH study at Yale, and my son met all of the required criteria. They "took it to the team" and called me just this last Friday to tell me we were disqualified because we were past the 6 month mark. We are currently at the 7 month mark. I am bummed out, but it is science and they have to be consistent. We have not had any extensive blood tests as yet, and have just been treating back to back strep. My son has also contracted acid-reflux from anxiety and is taking Omeprazole 1x per day. However, it upsets his stomach and takes a long time to "kick in". So we have stopped using it. He has chronic stomach aches and has an OCD fear of vomiting, so when he has a stomach ache, he worries he's going to throw up, which causes anxiety, which increase the acid....etc., etc.,

On MOnday our Dr. is going to call the Mayo Clinic to see if we can get any help, and I am going to call Dr. K. in Chicago because I feel like I'm losing my son and we have so much work to do figure out all the possible contributors - like Lyme, etc. I am learning all this myself by reading the posts. Has anyone bought the "Pandas KIt" that is on the Saving Sammy website? is is good and worth the $? Does it have a list of tests we should order?

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If he has been on many antibiotics, then he could have created a yeast overgrowth and this too will cause behavioral issues. Please make sure he takes probiotics with his antibiotics, you can read more posts on that or others cn chime in on that advice. Love your name "mother bear" because that will be what it takes to get him well. He will get well, but dont let doctors convince you that you are a nut...stand strong and follow your gut! Parents on here are smart and helpful, so ask away! My family will be praying for you as we do for all the children affected by this cruel illness.

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So sorry your son and family are struggling right now. I know all too well the feeling of "losing" your child. I agree to definately check for mycoplasma and lyme and also viruses. Our dd, and lots of these kids, have co-infections. It just sucks when our kids change so drastically and suddenly and we feel so alone and at a loss sometimes. But, we PANDAS/PANS families are strong and our kids do get better! There are days I feel I have to put my armor on and fight for what my dd needs and deserves. You will make it through and your son will have learned coping skills that surpass most others!

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Thank you for the replies. We did contact the NIMH study at Yale, and my son met all of the required criteria. They "took it to the team" and called me just this last Friday to tell me we were disqualified because we were past the 6 month mark. We are currently at the 7 month mark. I am bummed out, but it is science and they have to be consistent. We have not had any extensive blood tests as yet, and have just been treating back to back strep. My son has also contracted acid-reflux from anxiety and is taking Omeprazole 1x per day. However, it upsets his stomach and takes a long time to "kick in". So we have stopped using it. He has chronic stomach aches and has an OCD fear of vomiting, so when he has a stomach ache, he worries he's going to throw up, which causes anxiety, which increase the acid....etc., etc.,

On MOnday our Dr. is going to call the Mayo Clinic to see if we can get any help, and I am going to call Dr. K. in Chicago because I feel like I'm losing my son and we have so much work to do figure out all the possible contributors - like Lyme, etc. I am learning all this myself by reading the posts. Has anyone bought the "Pandas KIt" that is on the Saving Sammy website? is is good and worth the $? Does it have a list of tests we should order?

 

Don't buy the kit....keep reading here. Ask all the questions you have. Save your money to use toward a PANDAS doc.

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Please, is there anyone out there that knows a DR. in Minnesota that works with Pandas, at the Mayo Clinic or anywhere?

 

Try contacting Dr. Marc Patterson (pediatric neurology) at the Mayo Clinic. He diagnosed and treated a child I know when he was at Columbia several years ago. The child received two rounds of IVIG and prophylactic antibiotics afterward. He has been well since.

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Don't buy the kit, it should just be free helpful advice and Amy is right, you'll need the money for medical help. First advice... Keep a daily journal... Start today. Journal behaviors, meds, phone cosultations. You think you will remember , but you won't and it will help you see progress.

 

You can do this, one day at a time.

Linda

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