posted
Are there any good articles out there to provide teachers and the school (guidance counselors, etc.)about Lyme disease in children?
My son's teacher suggested today he see the school pyschologist. he is in kindergarten. It is not for behavioral issues, but rather because he complains ALL the time about his symptoms and they change so frequently.
He also doesn't like going to school and doesn't want to be away from me.
His teacher has been very accomodating - turning off overhead lights and giving him headphones at lunch.
She said she underestimated the severity of his condition when we told her at the beginning of the school year he was in treatment for Lyme disease. He has missed a lot of school. she said she understands because she has a cousin who was unable to go to school for 2 years because of Lyme.
she is worried and wants to make him more comfortable at school. Are there any good articles out there that describe a young child and what it's like for him/her to have Lyme?
Thank you!
Posts: 618 | From NC | Registered: Oct 2009
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posted
You can order "The ABC's of Lyme Disease" (next line: "Important Information Especially for Parents and Educators") brochures from the Lyme Disease Association - I think up to 200 can be ordered for free. Covers many aspects that affect children.
posted
Beaches, I have the brochures here - I'm looking through one - it's got sections on pediatric overview, Lyme disease in the eye, emotional needs, neuropsychiatric effects, GI Lyme,
role of co-infections, rheumatic manifestations, educating children with Lyme disease (including Section 504 discussion), nervous system involvement -
I'm curious to hear further - what parts of it are outdated?
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Keebler
Honored Contributor (25K+ posts)
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About MCS (Multiple Chemical Sensitivities) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- HYPERACUSIS can be a problem for many kids with lyme. Copying a post of mine today from an inquire about vacuums and a child that ran from the noise of one:
- It can be much more serious than "just not liking that kind of noise" as severe hyperacusis like that is terribly painful, and can be actually degrees sickening, even causing various levels of seizures (though some may not be visible to others).
So much torture can come from sound & vibration that some are driven to even end their own lives. I've been very close many times due to noise and vibration. It sure helps now that I understand the physiological reasons but it's still sheer hell.
Those with lyme (and those on antibiotics) are much more at risk of developing all kinds of hearing disorders so that is why it's vital to always protect ears from anything over 85 decibles. A hairdryer is about 100 decibels.
These are all the things that can go wrong when ears are damaged:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
See link for THE HYPERACUSIS NETWORK
And what helps, taking note that treatment for those who have lyme and hyperacusis is NOT the same as for those with hyperacusis who do not have lyme. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Caution about "suggested today he see the school pyschologist."
You need to become educated about the troubles for some parents of kids with lyme when the parents have been accused of
MUNCHAUSEN. In some cases, parents have had to fight for custody.
I can't go into detail now but it's vital that you learn about the issue as it related to lyme especially in states where the state medical boards do not support lyme awareness.
If the state's medical thought process or "climate" is to discount lyme this can be more dangerous for parents, especially when kids have herxheimer reactions.
Also a problem when the state medical groups oppose long term antibiotics. They'd rather discredit the parents and LL doctors and declare "Munchausen" instead.
Talk to your area and state lyme support groups for background on how others managed when "suggested . . . see the school pyschologist."
Best of luck. -
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Keebler
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2nd photo - (from your state): RUNAWAY: Mimi Reiser, 16, left home and married young rather than be forcibly separated from her mother, Terri, who was accused of harming her.
Excerpt: . . . Also falsely accused was Terri Reiser, a North Carolina artist, whose 16-year-old daughter . . . (end excerpt)
----------------------------------------------
It may be important for you to find out which school district & state officials were involved in the proceedings and if they are still in the same jobs today - and what offical codes there may be.
While your son's teacher understands, and I hope he can "fly under the radar" your state lyme group should be able to help you assess the terrain. -
[ 01-18-2013, 04:06 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- I'm glad your son's teacher seems aware but wonder about others on staff. I know it's often policy to see the school psychologist and they can be a great help yet if they are not up to speed they could make things worse.
The question would be WHY? first.
Rather than a "he see the school pyschologist" is there a LL therapist with whom he could discuss how he feels about this and work toward coping skills.
Then the ILADS-educated, LL therapist could consult with the school psychologist.
Maybe the school staff and psychologist mean well but, at this point, there can be some booby traps inherent in this process and they may have no other choice in some matters if state law requires they report all medications, etc. So be sure of the processes involved beforehand.
Still, I hope this works out so that everyone can feel like they are on the same team. -
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Keebler
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Because of the current political views concerning Lyme, insurance issues and the "all seeing" NCMB, some physicians will not even allow patients to make appointments if they mention Lyme disease when scheduling.
Another fact that must be mentioned is that not all doctors in the South believe that Lyme disease exists here. The two largest medical institutions in our area share this view.
. . . (end excerpt) ----------------------
[poster's insert: not sure what professional guidelines that a school psychologist may be required to follow but do find out first. Here:
North Carolina On-Line support -
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Keebler
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posted
- I don't have time to assess the search results as if they are ILADS-minded (a very important consideration), but quite a few hopeful results with a
posted
We had a meeting with our son's principal, teachers, nurse etc. and had to educate them. It has been beneficial. We took some printouts with us (actually we saved them all as pdf's and emailed them ahead of time so they had a chance to read them). We pulled some of them from the following site:
We find that we need to be our son's advocate all of the time but prefer to keep him in school rather than home school as this is the only socialization that he gets.
Posts: 749 | From State full of ticks | Registered: Dec 2008
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posted
Thank you so much Keebler for all of that information! I am going to look through it more thoroughly right now.
To be honest, the thought of the possibility that Munchausen would be considered ran through my head. I have heard of this happening to several people. One friend even had to take her child out of the country. It seems so ridiculous to me!
His pediatrician, ENT, and opthamalogist have all have been on our side which is remarkable considering the state we live in and do not question his treatment.
We are also lucky to have the teacher we have because she is from NY and knows how severe Lyme can be and said she has several friends go through it and her cousin who couldn't go to school for years.
I know she is wanting to help him and make him feel better. But, you're right, not sure about other staff members who know absolutely nothing about Lyme.
I'm going to call his LLMD right now. We see the pediatric PA of the top Lyme DC Dr., so I'm assuming they've dealt with this before.
Posts: 618 | From NC | Registered: Oct 2009
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posted
Thank you Hoops and Robin! Both of those look great. That's exactly what I was looking for. I will order some of those brochures.
Posts: 618 | From NC | Registered: Oct 2009
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posted
You might want to request a 504 plan that will provide him with accommodations that he needs, like a special attendance policy, breaks when he needs them, quiet when he needs it, etc.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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lpkayak
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posted
i hope it is easier for you parents today. it was a nightmare for me. good luck. hoops...good to hear something positive.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Tell them you will find private counseling if the MD determines that is a good idea.
504 plan is a good idea, but you can always homeschool him, too, at least for awhile.
It may be some comfort to know that often, when we did info sessions for teachers, it turned out that several were dealing with Lyme themselves or friends or relatives were.
The attacks on parents are especially bad at Children's hospitals. It is tough, but don't trust anyone.
Posts: 108 | From US | Registered: Apr 2012
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beaches
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posted
Robin, the MAJOR thing that is missing from the ABC brochure is the explicit statement that children can and do miss months and years of school because of this disease and its coinfections.
THAT fact needs to be stated. In addition, the statement by the GI doc IMO is inaccurate at best.
And Keebler is on point, as usual.
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