3boysmom

A teacher across the hall came to me because her 18 year old son (a high school Senior) began to have some OCD issues, thinking he was not pleasing God and other things. Now this is a popular football player and on the wrestling team and offered a football scholarship recently. She mentioned that he began to want to sleep by her bed on the floor (separation anxiety?). I asked about his history and she said that he has always had a few odd issues that they could not really put their fingers on....(He asked lots of questions and needed to re-ask them some mild eye tics...) He has had odd illnesses as a child that others don't usually get. Scolded skin syndrome???--She thinks they said it is from strep...I haven't looked that up yet. Tons of ear infections as a baby. Then came mild learning issues and ADHD. All sounded too familiar! Well, of course we PANDAS parents see everything as being PANDAS, however when I asked if he has been sick lately. She didn't think so. He has had a loud cough that is constant and no doctor could find a cause (couple years now) Something told me to ask about immunizations and she was surprised...said he had gotten a meningitis vaccination to prepare for college about 3 days before this troublesome OCD. She took him to the psychiatrist who put him on SSRIs and suggested therapy. Said the cough was a tic. This teacher has been familiar with our 2 year journey and she was only coming to me for OCD advise. If you are like me, you eat, sleep, breath, and obsess about this illness and find that you have no other topic to discuss with people as you loose yourself in trying to find answers to save your child; and so I am paranoid of pushing the issue too much because I'm sure everyone is SICK of my obsession. Questions: 1. What should I suggest? 2. What is in a meningitis vaccination...is it a live virus? Anyone heard of this one causing issues? I thought I read it in the White Paper, but it was not listed. 3. Am I crazy? (OK don't answer...I already know that one!)

I was not offended... Just wanted to let you know that I totally understand because of our younger two sons! Thanks for caring and prayers for our 12 year olds....when we get home from school, I am going to check for new teeth coming in!

Fixit- I am not happy about the White Paper either only pointing out that Beth's reason for being disappointed is the same reason that many of us have had with her publicity...."a simple strep test" coments on TV and if the doctors would go by her criteria, your sons would still not be included. The only 2 things I like about the paper are 1. It officaly recognizes that mental issues can come from outside pathogens 2. It can be triggered by other things besides strep - so if strep is not present.... Keep looking I am in the same situation as you...DS12 strep triggered... Now...? Was doing well 90% these last 3 weeks...60%??? The younger 2 boys do not fit the criteria, but thank God we knew about this illness early for them and put them on antibiotics. They have held steady for a year now! (knock on wood). The 12 year old was misdiagnosed for a long time and we have been fighting to get him back for many years now! That white paper would have kept our younger boys ds10 and ds9 from getting treatment....ds10 was age regression, night terrors, bed wetting, and ds9 - a "ticcer" my spelling is probably terrible.... On my iPhone at 5:30 am, and can't find my dollar store reading glasses!

On the other hand, Beth always stated "strep" and never expanded on mycoplasma or Lyme. And she always talked "high titers". So that is the same problem that many of us have had with her.... Where would many of our kids be if the criteria was strep alone? Her talks and explaintion have also caused children to go undiagnosed because they have mycoplasma or Lyme. At least the white paper opens the door for other triggers and not just strep.

Thank you!

Which magazine month is this in? Went to find it in the store but the March issue was already out and it was not in that one. Was it in February?

Which magazine month is this in? Went to find it in the store but the March issue was already out and it was not in that one. Was it in February?

Dr. Drew is stupid. Dr. Bowtie is stupid too.

Fingers crossed that this will be a good out come for the students and I hope that Dr. T is shown in a good light and PANS is presented in a way that pushes the ball rolling for our cause!

Alopesia is an autoimmune issue of hair loss... Just an FYI.

Wow, I think the dad on the phone...was it Jim?....he did an excellent job explaining PANS/ PANDAS for being so new to all this! Sounds like an awesome daddy!!!

Don't forget to give probiotics.

Stephanie- what state are you in? I too teach Sp. Ed. - students with ASD! We are in Texas. Yes, part of this frustrating illness is the backsliding. It always is so scary to see and messes with my PTSD. Our. son would react to anyone near by with strep. They are said to be like "canaries in a coal mine". Our son had a friend over and within a few hours he looked lost, glassy dilated eyes, and OCD ramped up.... Later the friends sister said that he left our house and went to a walk in clinic.... He had strep. We needed to persue IVIG because the doctor says that is suppose to boost his imunity so he doesn't react to others with strep.

We have 3 boys being treated and if it weren't for the extreme overnight disfunction of our first child, then I would never had known why the other 2 boys were having issues. We caught them early before the train wreck. Dr. B and Dr L are the ones that forced us to be honest with ourselves and pointed out a high sibbling rate. Each son had very different things going on. Also, tonsils and admoids can and do often grow back...maybe I'm wrong about tonsils, but I know our son had his admoids grow back and removed again. Ok about those sinuses / alergies.... One son was found to be carrying strep in his sinus cavities and the 3rd child tested negative for strep in his throat but Dr L asked us to culture the removed tonsils and..... Positive for strep. Your issues don't seem mild especially if you believe he has a compitent and reliable teacher. Our other 2 boys are doing GREAT with antibiotics only! I wish we would have known about this illness for the 1st son as he needed / needs IVIG

Well said Bat-Sheva

WOW! How could these girls all get conversion disorder when they didn't all know each other and some didn't even know it was happening to anyone else?

Today show -Wed. 18th about to air.....

PANDAS can present differently in different kids. Dr. L & Dr. B both told us that. This is why we almost missed the signs in our other 2 sons. 1st son-OCD. 2nd son- night terrors, defiant, baby talk. 3rd son- anxiety, hyper, vocal and head tics...."torettes like" But, I do get your point...if not triggered by strep, then maybe a different infection. Maybe it raises a good point to change the name to PANS - just think the "A" should continue to stand for Autoimmune and not Acute.

We were seeing improvement but then the 5th week after IVIG #3, " things " began to resurface. That was at the same time we finished the treatment of minocyclne for mycoplasm.... Today's tests show that mycop has jumped back up high again! So....that would explain why the IVIG alone was not enough...still dealing with an active infection! This is a complicated illness and frustrating, however, try living in Texas and needing 3 kids treated...overwhelming, but glad we found a doctor that doesn't think we are munchousen (spelling?) parents! P.S. We are WAY better than 2 years ago.

Just left Dr. B's from IVIG & I suspect it may be your husband and son we met. (although there were 5 other dads today) your post about being on the phone makes me think that you are the mom of one VERY precious young man and a sweet husband! It was good for my husband to talk to another dad dealing with this! Best of luck, I understand!

Wow, impressive response for a "newbie". Ditto what chase23 said.

Bumping up.

Oops, already posted.

tpotter...hello again! I like this Dr. also and he very respected and known, so that is very good for us! It seems unbelievable that "their" stupid "CANS". Is going to "catch on" and become the new accepted term, when it seems that all of these news stories and media lately and basicaly we ( the PANDAS / PANS ) community is continuing to move ahead without those Bozos. The longer "they" hold out, the unbelievably moronic they look. Sorry, I'm obviously still venting on that "CANS" paper. Off to IVIG tomorrow.......

tpotter...hello again! I like this Dr. also and he very respected and known, so that is very good for us! It seems unbelievable that "their" stupid "CANS". Is going to "catch on" and become the new accepted term, when it seems that all of these news stories and media lately and basicaly we ( the PANDAS / PANS ) community is continuing to move ahead without those Bozos. The longer "they" hold out, the unbelievably moronic they look. Sorry, I'm obviously still venting on that "CANS" paper. Off to IVIG tomorrow.......