My son (7 years old) got positive Igenex test and I will take him to my LLMD next week.

I have two questions:

1. Recomendations on what to ask ant take to his/my LLMD for the first visit.

2. My son is already having problems at school with reading, concentration, disorientation, etc, etc. I know when he starts treatment wil be even worse, how do you parents approach this at school? Somebody mention here a 5???? plan or something like that to take to school but I am doing the search and it's not working.

I don't write to much on Lymenet because is still a problem for me to write properly, however, I come and seek advise on this forum everyday and it has helped me A LOT. I WANT TO SAY THANK YOU TO EVERYONE HERE FOR SHARING YOUR KNOWLEDGE, EXPERIENCE AND SUPPORT.

Here is a little bit of my story:

I live in WA, my llmd is in CA and I have improved a lot under his care (been under his care for 9 mos). I was barely walking, unable to follow a conversation and on extreme pain when I first saw him. My son probably has Lyme since birth because there has always been a lot of medical/learning problems unexplained by the md's and specialist that had seen him over the years.

There are some links and recommendations for IEPs etc at http://www.pocwl.org/educate.html

Seems to have good descriptions of what does what, and how to get things done.

Mo and Lymemomtoo had an excellent thread on this topic a while ago -- maybe they'll come along soon. Here are a couple of links for you for now:
http://flash.lymenet.org/ubb/Forum3/HTML/012117.html
http://flash.lymenet.org/ubb/Forum3/HTML/009469.html

I have an 8 year old who has lyme. My LLMD wrote her a note and we put her on a 504. You can do a search under general topic for school issues and there will be some posts that explain things further.

Quite honestly, I'm having huge issues with my daughters school. The teacher will not follow the 504 and refuses to let her go to the office and rest. On her 504 it specifically states she can rest as needed and I can tell you I've spoken to the teacher and she only lets her rest her head on the desk.

She even has the nerve to ask me when I saw her last week what was wrong with Nicole. What's wrong geeh, let me write a small novel lady. Beach4so gave me awesome handouts that I presented to the school nurse and teacher and if they read those handouts they might possibly understand.

Okay enough of me complaining. The reason I'm telling you this is the bottom line I would go straight for an IEP. It carries a lot more weight and especially if he's having problems academically.

My daughter is way ahead so I didn't get the IEP but am in the process of looking into it to protect my daughter.

Best of luck to you!

Yes, Minoucat we have the same LLMD and I agree with you he is excellent. I am reading all the old postS you gave me. How do you keep them so handy?

Snowboarder; who is beach4so? another Lymenet member, how can I get a hold of these handouts?

Take care, lots of hugs,
Lymster

We have a 504 plan, but used to have an IEP for our daughter. She's gotten better so really all she needs now is to not have PE and to have extra time for tests if she needs it.

It's good to find someone local to you that's very familiar with IEPs. They can be confusing, and the administration can put undue pressure on you, which you don't have to tolerate. Learn your rights and how you can best shape the IEP to your needs.

If that teacher is still uncooperative, then get yourself to the administrator in charge and make a racket. It took us quite a while to educate the teachers and adminstration about Lyme.

thanks to whoever said the Iep costs them, though for my daughter they didnt even want to do a 504, their solution, let her bring a mat and take a nap (she was in 3rd grade)!

I am so sorry your child and you are going thru this. It is an uphill battle but my personal best advice is to be as persistent as you can and to let your child know it isn't his fault.