good article

[jewels]

Yes we Have an IEP system in the UK, I've just looked at the US version and they have the same principal. She had one when the PANDAS first started, but met the goals, so the plan was stopped. Then she became sick again, and another one started. Now we have a medical IEP/care plan. They are meant to check her temp. and monitor any behaviour/work changes. We picked her up from school a few weeks ago with a temp. of 39.7. very flushed swollen face and very quiet. She was fine in the morning, but goes downhill rapidly.

 

I have talked about getting a "Statement" with the school, but they say as she catches up when well it would be hard to obtain. I do home school her when she is sick, but as you know this can be very hard as her focus and concentration go awol with an infection. (She also gets very hyper).

 

The sad thing about this is that she loves school, but when she is sick she doesn't want to leave the house. All she seems to want, is to be picked up and carried around. (And she's 7).

On a bright note though I don't mind the endless cuddles.

 

Can you get Statements with a PANDAS dx in US

 

Thanks Jules

[jewels]

Vickie,

 

I was going to put a PS. on but my cat keeps jumping on my keyboard!

 

What the school are trying to push for is a confirmed dx of a condition. Our Ped. has written down PANDAS with a ? But we still cannot get a positive dx, as so may drs here are non-believers, or they have never heard of it. By chance we hit gold with our dr. However, I think his hands are tied when it comes to treatment, or committing himself to PANDAS to the outside world.

[mrigsby]

I have been wanting so desperately to be able to do something in the help for awareness of PANDAS. Thanks for this post. I am going to contact Beth Maloney and see if I can help with theses cards.

[thereishope]

I was told that if I want a 504 plan or an IEP for PANDAS, I need a doctor to write out and supply a statement diagnosing him. My son has an IEP in place for speech services through the school district. PANDAS is located in his health history section. For that, they take the parent's word. But having it solely in health history does not give him the "protection". However, it does have some weight in that it is in writing at the school and opens up conversations. I personally have had a 2 hour converstaiuion with his teacher prior to the year starting. Notified my other son's teacher of our situation and have an understanding with the school to call if strep enters either classroom.

 

Has your child had an immunological workup? Could you get that done? Has your child got the dx of OCD or TS? Sometimes you have to work the system and go with a different dx until the whole PANDAS thing is resolved. Soemtiems it doesn't matter how you get the school to ackowledge your child needs help, just as long as they get it. There's such silly rules out tehre that everyone needs to follow. It has a lot of loop holes that lets the parent done too. I'm not saying to lie, but work with what they have. Maybe try to get a different dx to help your child. At least for the school. I'm definitely not saying to comes to grips, personally, with a dif dx, but for for school purposes only and only for the time being.

 

 

Vickie,

 

I was going to put a PS. on but my cat keeps jumping on my keyboard!

 

What the school are trying to push for is a confirmed dx of a condition. Our Ped. has written down PANDAS with a ? But we still cannot get a positive dx, as so may drs here are non-believers, or they have never heard of it. By chance we hit gold with our dr. However, I think his hands are tied when it comes to treatment, or committing himself to PANDAS to the outside world.

[MomWithOCDSon]

Yes we Have an IEP system in the UK, I've just looked at the US version and they have the same principal. She had one when the PANDAS first started, but met the goals, so the plan was stopped. Then she became sick again, and another one started. Now we have a medical IEP/care plan. They are meant to check her temp. and monitor any behaviour/work changes. We picked her up from school a few weeks ago with a temp. of 39.7. very flushed swollen face and very quiet. She was fine in the morning, but goes downhill rapidly.

 

I have talked about getting a "Statement" with the school, but they say as she catches up when well it would be hard to obtain. I do home school her when she is sick, but as you know this can be very hard as her focus and concentration go awol with an infection. (She also gets very hyper).

 

The sad thing about this is that she loves school, but when she is sick she doesn't want to leave the house. All she seems to want, is to be picked up and carried around. (And she's 7).

On a bright note though I don't mind the endless cuddles.

 

Can you get Statements with a PANDAS dx in US

 

Thanks Jules

 

My son has an IEP predicated upon an OCD diagnosis, which is his primary exacerbation symptom set. I would think that an IEP on any terms available to you, even if it is not PANDAS, would be helpful.