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Lisa3

Is your PANS/PANDAS child homebound?

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Just curious how many of you have your child home? Last Friday I though my DD10 would be able to go back to school for half days. I was wrong, she's so not ready. I meet with the team at her school this morning. How have you handled long term absense? Do any of you home school with success? I don't know if that would work for us because I can't get her to do any make-up work. She's also refusing to have a teacher come to the house.

 

Quick background diagnosed with PANS, by Dr. T with strep, mycoplasma and Coxsackie as triggers. On Biaxin and Valtrex.

Early symptoms complaints of “tummy ache” and would say “my head hurts” She always complained of being tired and she was often very moody with inappropriate aged outbursts. She always had separation anxiety and would repeatedly ask for something - usually outlandish.

 

Acute onset started this year, grades slipping, major separation anxiety, MAJOR depression, withdrawn from friends and activities math skills and handwriting deteriorated, clothes and shoes sensitivities - her tics/OCD much worse with repetitive movements kicking her leg and spinning and playing non-stop on her iPod touch or any electronic (which we have to hide).

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My son missed two months of school last year, 3rd grade. Now this year, 4th grade, he started in the fall and by November everything got bad and we decided to cyber school for this year. Our goal is to send him to school next year because he really wants to go. He hates cyber school and wants to be in a regular school but he cannot explain why he cannot go sometimes.

 

I can only imagine what these poor children are feeling. They just want to be normal and they cannot explain why these feelings come over them. These doctors better start understanding this because these children are losing valuable years of their lives.

 

Sorry didn't mean to go crazy, just get upset when I think about it.

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My DS15 has been homebound since April 2011. Our school system provides him with a teacher through what our state calls "Home & Hospital Instruction." Teacher comes to the home 10 hours per week. He misses seeing friends throughout the week, but it has been a good decision to keep him home while he heals from multiple infections and we get his immune system stabilized. Reducing his exposure to new infections has been key for him. Teacher and friends know not to come to our house if they are sick.

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My son DS14, has not been in school reliably since early December, he had been back off and on but kept catching strep and then things just slid downhill FAST. He is now also not showering, leaving the house, etc. DS is also a patient of Dr.T's and was diagnosed with the same triggers, Mycoplasma, Cox Sackie, Strep.

 

We did IVIG 10 days ago. He is currently taking Azith. and Doxycycline, but while things are improving by teeny tiny steps, it is still a very slow process. As far as school is concerned, he is only now getting to the point where I think that next week we may be able to consider an at home plan...hopefully.

 

I agree with LindaMW, it is torture to watch them wait to get better and languish on the couch.

 

T.Anna

DS 14.5

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Lilly in response to your question, we dealt with a private school before and they could not really help, limit resources. Now we are with PACyber and they have been awesome. Got him on a 504 plan within weeks.

 

I think everyone's experience has been different, private, public, homeschooling.

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WE are doing k12: It is not considered "Home Schooling" but instead "Public School from Home". I do not write the lessons, they follow the curriculum of the school district in which you live, it is free, they send all the books. I did not like the "homebound" public school program because I can't imagine a 7th grader getting all that they need from a teacher in a one day few hours a week set up (which is what they offered us.

With k12, all the lessons are provided on line anmd so he can go back over them until he understands and he can work at his own pace. I did however need to get a math tutor because I didn't have time, energy, or the understanding of how to "teach" algerbra. I have to note that our DS is self motivated, wants to do well and never video games, so we don't need to push him. That would make a big difference.

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I feel better that I'm not alone - not that I want anyone else in the same situation, but we have each other as support. As my DD10 is sitting on the couch she's not alone ;)

 

We met with "the team" at her school this morning. I walked away feeling worse instead of better. I feel like I portrayed her in the wrong way. I probably said more than I should have on what's been going on at home because in the end, the social worker was like have you thought about taking her to a psychiatrist??? She also kept stressing that they need a plan in place at the school when she returns - like she's some kind of bomb that will go off at any time. Ugh, sorry venting....

 

They were very anxious to start homebound instruction. Someone is coming today. I'll let you know how it goes - something tells me it won't, but maybe I'll be surprised.

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This private school allows you to do classes online and set your own courses. It is an option - no 504 plan.

http://www.faceschool.com/

 

 

Just curious how many of you have your child home? Last Friday I though my DD10 would be able to go back to school for half days. I was wrong, she's so not ready. I meet with the team at her school this morning. How have you handled long term absense? Do any of you home school with success? I don't know if that would work for us because I can't get her to do any make-up work. She's also refusing to have a teacher come to the house.

 

Quick background diagnosed with PANS, by Dr. T with strep, mycoplasma and Coxsackie as triggers. On Biaxin and Valtrex.

Early symptoms complaints of “tummy ache” and would say “my head hurts” She always complained of being tired and she was often very moody with inappropriate aged outbursts. She always had separation anxiety and would repeatedly ask for something - usually outlandish.

 

Acute onset started this year, grades slipping, major separation anxiety, MAJOR depression, withdrawn from friends and activities math skills and handwriting deteriorated, clothes and shoes sensitivities - her tics/OCD much worse with repetitive movements kicking her leg and spinning and playing non-stop on her iPod touch or any electronic (which we have to hide).

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By the way, my son is enrolled at private school and I dropped off 5 copies of Saving Sammy to all th e administrators and the psychologist.

It really helped the school psychologist understand the illness. Although, I think they are running out of options, it seems like the whole year is gone.

 

T.Anna

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Lisa - I know how you feel about saying too much. It is helpful for me to have a psychiatrist on board that understands my child's situation. Quiets the school principle down a bit. Believes doctor more than he believes me. Hope this helps!

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My DS12 is on homebound education that is paid for by the school district. He also refused to see the teachers for 2 months. It was very fustrating and upsetting. He would yell at them to leave and more. Finally got a special ed teacher who is very caling a patient and was a form psych.

 

Can the school back track and keep her homeschooled? I wouldn't give up. Maybe half a day is too much and you can try again next month. Can her at home teacher work with her in the school for an hour a day to expose her to it? Then increase it up to 2 hrs ....

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Lisa- so sorry for what you are going through. If you are with Dr T sounds like you are addressing pandas medically.

 

My daughter missed half of fifth grade (2 yrs ago) due to ocd. We tried half days, local psychs etc- she was just so scared and depressed....

 

Finally, at the suggestion of another pandas mom, we went to USF for therapy. Wow- what an eye opener! My only regret is not getting there before she missed half the year. If I were you- I would call Dr Storch at the Rothman Center for Anxiety at the U of South Florida and see if the program is a possibility.

 

I know it sound impossible to you- but- as parents we really need our children to comply with us and follow rules. They cannot be left to yell at teachers and refuse to do things. I know all about how tough ocd is, and I do know that some temporary accomodations are in order, but I learned so much from USF about how to stay firm, be up front with them, and really learn NOT to let my children's ocd take over all of our lives. I am not saying it is always easy- but I had to get over being sad and scared for them, and realize that sometimes "tough" love is real love. I could not have come to this point without the gifted people at USF to who I am forever indebted.

 

I suggest homeschool to be set up ONLY as an extremely temporary measure, with rules (no tv, etc) in place, and a real "program" about how to get back to school. At USF we talked a lot about "age appropriate" expectations, being up front with the kids about what they should be doing (or not doing), and being somewhat tough about a plan to get there. Rewards are a part of the program, as are making sure they have professional help to tackle the ocd. (no sense forcing a kid to school without showing him/her how to get over the ocd- you are setting them up for failure).

 

Good luck- I have been there- this will pass, and you will be all the stronger for it (wish I didn't have to end up so darn strong!)

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