LymeNet Flash: help, parents of children w/lyme

This is topic help, parents of children w/lyme in forum Medical Questions at LymeNet Flash.

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Posted by lymster (Member # 5964) on :

Hey everyone:

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.

Any info will be greatly appreciated.
Lymster

Posted by CaliforniaLyme (Member # 7136) on :

My daughter was very ill from 13 months to age 5 and has been off all meds now and doing great for over 2 years. She was on liquid Zithromax and for the brain stuff at first she needed liquid CEDAX which i s the childs version of Ceftin. It was WONDERFUL for her brain stuff. She was also on Mepron for a year. The #1 pediatrician in CT recd'ed the Cedax to my doctor for brain stuff-
Take care- there is lots of hope if you just stick with appropriate treatment for the long haul-!*(*!)!
Best wishes,
Sarah

Posted by minoucat (Member # 5175) on :

Here is a good "Making the most of your LLMD visit" list. It's very general; perhaps some parents can suggest some additional kid-specific things: http://www.lymeinfo.net/visit.html

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 also live in WA; we probably see the same doctor (Dr. H.?) If so -- you're in excellent hands.

Posted by snowboarder (Member # 6346) on :

Hello lymster,

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!

Posted by lymster (Member # 5964) on :

Californialyme, minoucat and snowboarder: THANK YOU!!!!
Once again tHIS board has come to my rescue, THANK YOU, THANK YOU, THANK 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

Posted by orion (Member # 3858) on :

An IEP costs the school more in time and money to have and administer. A 504 Plan is more "lite." Since you are having trouble with these people, I'd follow the advice given and go straight for the IEP. It has more teeth and makes them more accountable.

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.

orion

Posted by lymesux (Member # 6248) on :

I have two kids with lyme (and other problems) and am having the same problems with school - they fight me at every turn.

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.

Good luck!