feeling a little discouraged. sometimes it feels like all I do is fight, yesterday was case and point. took my 16 yr old lymie son for surgeon for pre-op appt bfore port-a-cath installation... surgeon decided that following llmd's oreders and putting port in my son was wrong, cuz he doesn't agree that long term abx should be used to treat lyme.
why he couldn't decide such before I drove 1 hr over to his office with a son running a fever, while running my iv on a pump..I will never know!
So I drive 1 hour home with the sick son who has missed more than 10 weeks of school, and sometimes can't talk or understand question to answer them...
and I go to a final meeting with the IEP team at the school....they have decided to accept the dx of lyme disease for my son, after 12 months of denying it...BUT, they have decided by their own testing and observation that Lyme disease does not...effect my son's learning!
They have chosen to ignore the outside neuropsych testing that we submitted to them, and have said that effective immedidately my son will have to leave the special ed studyhall, because he doesn't qualify. They are fine with him repeating grade 11 again next year, as"boys are young and often need an extra year!"
I am so overwelmed! We need to get my son out of that school as soon as possible, but when he feels well he still likes to be there despite the school, as that is where all his friends are.
Right now we don't have another option. Except legal action, which is far from free, and another added stress!
And yes, we have an educational advocate, and we have consulted the state dept of ed...it's just been 12 months of fighting so far. My son has become so bitter...he just thinks the school administrator are jerks and I am agreeing with him. This is one to the heck with respect for authority.
Two of us are suppose to be getting better from LD and this is not helping! Just needed to sound off!
Posted by seibertneurolyme (Member # 6416) on :
Don't have any suggestions on the school issue.
Is there another hospital you could take your son to to get the port put in?
The only doc hubby ever had refuse to do a procedure was a neuro-opthalmologist who refused to do an eye exam for him to be on plaquenil. Doc didn't believe Lyme diagnosis and even sent records to LLMD to make trouble -- we had already supplied him with those records so it didn't matter.
We have had PCP fire us but that is not the same as your problem. The surgeon was not the one ordering the procedure. Have no idea if you have a legal issue or not.
I would just try to find another doc at another hospital -- surely your LLMD can recommend someone.
Sorry you are having such a hard time.
Bea Seibert
Posted by achey (Member # 6284) on :
thanks bea
we have an appt to see another surgeon on fri...just now it will be another week before the port is in...we have been workign on this for 4 weeks now... son is not responding to orals at present, and goes from good one day to near death exhaustion the next. We're just looking for a change. so tired right now
Posted by shazdancer (Member # 1436) on :
Hi, achey!
This just floors me...
quote:and I go to a final meeting with the IEP team at the school....they have decided to accept the dx of lyme disease for my son, after 12 months of denying it...BUT, they have decided by their own testing and observation that Lyme disease does not...effect my son's learning!
They have chosen to ignore the outside neuropsych testing that we submitted to them, and have said that effective immedidately my son will have to leave the special ed studyhall, because he doesn't qualify. They are fine with him repeating grade 11 again next year, as"boys are young and often need an extra year!"
How can they just reject a doctor's diagnosis for a year?? The school officials are not doctors. I am assuming you have a letter from your LLMD explaining the diagnosis and the limitations that this causes your son. Included in that should be a sentence explaining that his symptoms typically vary from day to day, and even hour to hour, and that adjustments should be made accordingly.
What is your educational advocate doing for you? I dunno, if you can afford it, I would be looking at a lawyer, if only so you no longer have to fight this by yourself while you need to fight for your son's health, and your own.
Ask around for someone who litigates special ed issues and takes on this school often. A support group for kids with special needs may be able to help you there.
More and more, schools are faced with budgetary limitations, and in the face of laws that say they must provide accommodations to those that need them, they just try to declare as many students "normal" as they can so they aren't obligated to provide services.
Regards, Shaz
Posted by dmc (Member # 5102) on :
I don't understand, what is a port? Is it a line in the chest? I just had a home health care nurse put a midline in my arm...my llmd said the abx goes to the heart anyways through the blood. Why is a surgeon needed to put in a port?
Hope everything works out soon.
Posted by Annthenurse (Member # 5118) on :
A port is surgically implanted under the skin in the chest, usually. For a lot of people it is preferable to one put in the arm. There is less chance of infection and other complications. Ann
Posted by char (Member # 8315) on :
Dear Achey,
I can't believe what you went through yesterday!
I know some of what it is to face the stress of facing port and how hard it is to drag a sick teen for long car rides. It is draining physically and hurts your heart.
I am so mad to hear how you have been treated.
Also, I commend you for not burning the hospital down. Just infuriating.
We are on your side.
Char
Posted by lymednva (Member # 9098) on :
Achey,
As a former teacher I can tell you that you have a right to appeal the decision made by your son's school.
It's unfortunate that so many children are allowed to wallow because the schools do not think they fit in to their neatly described boxes.
You would think that special ed people would be more cognizant of this, but it is our job to do the educating.
Good luck in this. You should contact the school and ask what you need to do to appeal their decision. Posted by achey (Member # 6284) on :
thanks all for your feedback and support...I cried a lot today, Ihope I'm ready for the next step tomorrow. Taking my son to surgeon number 2.
As for the school bit, we have appealled 3 times this year.. I miagine they are pretty annoyed with us by now too .now we will go to mediation
I would much preferr to spent our family energy on healing. If this is a way to heal, I haven't seem it yet, but I'm waiting.
until then, my son is feeling very betrayed by teachers he trusted...it's breaking my heart.
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