Homeschooling PANDAS Kids

[AmbersMommy]

Hi all,

 

I have been thinking about homeschooling my daughter. (She hasn't officially been diagnosed with PANDAS, but saw Dr. B. and he says he is 90% sure, but waiting on lab results.) Is it a good idea? Has anyone else done it? Am I going to end up doing it anyway because she will get exacerbations from all the illnesses at school? She gets services through the school that she won't be eligible for if I take her out. She gets OT, PT, and Speech. I am not convinced that any of it has ever helped her. She is just 6 years old and will be repeating kindergarten anyway.

 

Right now she doesn't even want to go and do things that she loved before...go to the beach, dance class, just go outside in the backyard. She had been hallucinating, so she missed the last month or so of school anyway, but she didn't want to go. I probably wouldn't have wanted to either.

 

A psychiatrist that we saw recently believes my daughter may be autistic, so that is a concern as well in taking her out of school.

 

Any comments would be greatly appreciated. Thank you.

[Iowadawn]

LisaMarie=

 

Aaaa...they may make you believe that you would lose those services if you bring her home, but I am not so sure of that. May depend on the state. Someone else weigh in here. Does your state allow duel enrollment. School districts in Iowa LIKE to cooperate because they can see lots of $$$$ for a homeschool child. Would she qualify for an IEP? Would a doc be willing to sign off and say for now she should receive her schooling at home. Thinking outloud--not sure I'm of much help. Dawn

[Phasmid]

Hi,

 

I am curious about this statement:

 

saw Dr. B. and he says he is 90% sure, but waiting on lab results.)

 

What lab results are you speaking of here?

[Stephanie2]

Lisa,

 

I pulled my son out of school about 6 months ago to give his immune system a break. I thought that maybe with less strep exposure, things would settle down. Unfortunately, it did not work as planned and I enrolled him again a few months later. Both of my boys have pandas (2 and 5) and actually they both went into terrible exacerbations while they were both home with me (and if I did take them out it was not to places where they would be likely to get sick, and I followed them around like a lunatic with sanitizing gel ). So, they kept getting sick anyway...

 

Just my experience!!

Stephanie

Hi all,

 

I have been thinking about homeschooling my daughter. (She hasn't officially been diagnosed with PANDAS, but saw Dr. B. and he says he is 90% sure, but waiting on lab results.) Is it a good idea? Has anyone else done it? Am I going to end up doing it anyway because she will get exacerbations from all the illnesses at school? She gets services through the school that she won't be eligible for if I take her out. She gets OT, PT, and Speech. I am not convinced that any of it has ever helped her. She is just 6 years old and will be repeating kindergarten anyway.

 

Right now she doesn't even want to go and do things that she loved before...go to the beach, dance class, just go outside in the backyard. She had been hallucinating, so she missed the last month or so of school anyway, but she didn't want to go. I probably wouldn't have wanted to either.

 

A psychiatrist that we saw recently believes my daughter may be autistic, so that is a concern as well in taking her out of school.

 

Any comments would be greatly appreciated. Thank you.

[matis_mom]

Hi all,

 

I have been thinking about homeschooling my daughter. (She hasn't officially been diagnosed with PANDAS, but saw Dr. B. and he says he is 90% sure, but waiting on lab results.) Is it a good idea? Has anyone else done it? Am I going to end up doing it anyway because she will get exacerbations from all the illnesses at school? She gets services through the school that she won't be eligible for if I take her out. She gets OT, PT, and Speech. I am not convinced that any of it has ever helped her. She is just 6 years old and will be repeating kindergarten anyway.

 

Right now she doesn't even want to go and do things that she loved before...go to the beach, dance class, just go outside in the backyard. She had been hallucinating, so she missed the last month or so of school anyway, but she didn't want to go. I probably wouldn't have wanted to either.

 

A psychiatrist that we saw recently believes my daughter may be autistic, so that is a concern as well in taking her out of school.

 

Any comments would be greatly appreciated. Thank you.

I've been homeschooling my kids from the beginning, and I think it was a good thing for my PANDAS ds, since at times his brain was simply not responding and I was able to allow for that, and then catch up later. So it has worked very well for us. Not so much in avoiding catching strep, because my kids do a lot of activities with other kids, so we have caught strep 4 different times, but at least when my son goes into exacerbation, I can take it easy on him, I can understand what he is going through. I don't know what it would have been like if he had been at school, he probably would not have been able to keep a steady pace. At home, we can slow down during exacerbation and accelarate when he is well to catch up. He has finished 6th grade without trouble! Another good thing is that we did not have to worry about missing school because of drs. appointments, bad days, etc.

But I would also suggest that you wait a bit to make your decision. Your daughter might do great once you start treating her for PANDAS, and then you can re-evaluate. My son got to a point where he would not do a lot of stuff (pet the dog, go outside, etc) for fear of contamination. Now (after nearly a year on antibiotics!) he still has a bit of OCD left, but he is able to lead a normal life for the most part.

Every child is different and not knowing your daugther it's hard to tell, but a lot of the special services she needs right now, even whatever the psychiatrist saw that lead him to believe she might be autistic, all of that could be PANDAS related.

So it's a hard decision that you'll have to make, but I would encourage you to see how she reacts to treatment and then take it from there. It seems at least for now, since she is happiest staying at home, it might be best to keep her at home, especially since she is so young. But is also a fine line to walk between helping helping them out and making them feel secure, and giving in or even feeding the OCD. I don't know how far you are in your journey, but many on this forum have found it extremely useful to learn more about OCD and how to cope with it. I recommend a book "What to do when your child has OCD" It really helps you understand what the child is going through and what you can do to make it better. Even with treatment, most of our kids still have some OCD left and it's best to give them the skills to manage it so it doesn't take over their life.

 

If you have any more specific questions about homeschooling, I'd be happy to help out. There are a lot of resouces out there, even ones that are geared to special needs kids.

 

Isabel

[parents4eyes]

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Edited July 17, 2010 by parents4eyes

[nojo]

Hi, I pulled out my 2 daughters this year to homeschool (age 8 and 7). My older daughter has PANDAS. She also has severe asthma, and we found we were always sick. She did qualify for homebound instruction through the county, where a tutor would come to our home to teach her. We had used this option when she was 6 and she missed 5 months of her kindergarten year. The problem that we had this time, is her sister, who is 14 months younger, would not qualify for services, and she was constantly bringing home illnesses to our house. For the record, we have been tested and have been found to have low igg levels, perhaps this is why we are constantly sick.

 

As for the homeschooling, it has significantly helped my daughter. She has still gotten strep and other illnesses, but the frequency has declined. We withdrew both children the day before Thanksgiving. She had not gained any weight in approximately 2 years. She has gained 2 -3 pounds since then. She is able to sleep more, We got a season ski pass during the winter to get her outdoors during the winter to build her lungs and stimulate her appetite. Slowly she began to heal. We used to struggle to get any mouthful of food into her, every bite was a struggle. Meal times are not like that. The rages are gone. The bathroom frequency issues have disappeared. She is not hoarding things like she used to . We don't have all the clothing fights. It has become so much more apparent to me because she did just get strep and have many of these symptoms come back on a lessor scale after starting swim team. It is discouraging that we do tend to get ill when we are in group situations still. We have started prophylactic antibiotics to try Vacation Bible School.

 

As for the educational component, it is not that hard either. There are many really great sources for curriculum out there. You can determine your philosophy and your child's learning style, and find a great fit. We have tried some things that we haven't liked, but for the most part, we have found it to be really enjoyable. My husband can tell a real difference in the way they are processing information. I've found it to be enjoyable to not be struggling with a sick child all of the time. It was daunting to start, but we are taking it one year at a time. My children really love it. They have asked to continue school during the summer so we can take time off at random times during the year to travel with my husband. For us, it had been a very positive experience.

 

Overall, I don't think homeschooling is a cure, but it is definitely in our case helping with the constant assault of germs. It is giving our daughter the chance to heal. Feel free to send me a note if I can help.

 

Noelle