posted
My daughter is 16 and should be a sophomore in high school. She made it to 6 days of school this year, and we withdrew her. We thought she had CFIDS and was doing better in December so she enrolled in an online program in January. She did great for about 3 weeks, but then we got the real diagnosis, Lyme, Bart and Bebesia. Needless to say she is on antibiotics and they must be working because she has been 'herxing' for 5 weeks. She can't do school now, and is again sleeping 14 hours a day. When she's up she can either read magazines, watch TV or cuddle with her dogs. No way can she do school! She says it is like the worst flu you can imagine. She really wants to graduate on time, so I want to support her so that she does. We are hoping that she will be able to go to school next September as a Junior. I've been talking with the school, and told them she needed a few weeks. Well it's been a few weeks, and I need to call them tomorrow. I don't know how to support her and get her what she needs. Part of me wants to 'push' her, but the sane part of me knows she just can't do it right now. Any ideas? Whose been there? What worked, what didnt'? Thanks! LymeMom Kellye Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- Kellye,
Many here have vision challenges so I'm breaking up your text so more can read and reply: -----------
Kellye writes:
My daughter is 16 and should be a sophomore in high school. She made it to 6 days of school this year, and we withdrew her.
We thought she had CFIDS and was doing better in December so she enrolled in an online program in January. She did great for about 3 weeks, but then we got the real diagnosis, Lyme, Bart and Bebesia.
Needless to say she is on antibiotics and they must be working because she has been 'herxing' for 5 weeks. She can't do school now, and is again sleeping 14 hours a day. When she's up she can either read magazines, watch TV or cuddle with her dogs.
No way can she do school! She says it is like the worst flu you can imagine. She really wants to graduate on time, so I want to support her so that she does.
We are hoping that she will be able to go to school next September as a Junior. I've been talking with the school, and told them she needed a few weeks. Well it's been a few weeks, and I need to call them tomorrow.
I don't know how to support her and get her what she needs. Part of me wants to 'push' her, but the sane part of me knows she just can't do it right now. Any ideas? Whose been there? What worked, what didnt'?
Thanks!
(Kellye in Seattle) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
The road ahead is not an easy one but it is do able. The best advise I was given was to be sure that my son always knew that I believed his pain and hardships even if no one else did. It was his junior year. We began with doctors' statements and a 504 plan. Quickly moved to an IEP as other health impaired. He was provided with at home tutoring and extensive accomondations including extentions for time and content compacting. There are other posts here that offer more details, you can search for them: try IEP, high school etc. Meanwhile, know it can be done.
Posts: 28 | From ri | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- September is a long time off. So, since there is the registration deadline, have her register for next September but if, even at the last minute, she just can't do it, let her guide the decision.
Yes, this is the worst flu you can imagine. With good medical care she may make it but this can be a life-threatening infection (set of infections). With a swollen brain and all the other stressors on every system, she will be best to focus on getting better. Period. Even if she graduates later. There are many different ways for this to work.
That may or may not involve actual school. As best she can, she should keep up with studies with a tutor or a IEP (is that still what it is called, an individualized education plan)?
If she can, it'd be great to still be some part of school functions or friend circles or one single study group.
As for watching TV, regular TV can be draining in many ways. There is so much that drains our brains and adrenal systems and that is really detrimental for lyme patients.
I suggest discussing and then limiting run-of-the mill network stuff to the most enjoyable and least stressful on the body --and moving to things that will further her education in some way - even travel videos or science lessons on DVD. Movies relating to literature the school may be covering. You can find a lot of Shakespeare on DVD.
What kind of magazines? Escape is good to a point, but it's good to have educational magazines if she is not going to read books. National Geographic, etc. These are good escape but also instill a desire to learn and engage in the world.
And funny DVDs. She really needs to laugh. Maybe some music ones, too.
Don't push but do guide and support. Everyone wants to do the best they can. If she can't, she is still doing the best she can. There are still some good ways to incorporate education when she is up to it.
Have you been in touch with other lyme parents in your area?
Is she on a gluten-free diet? Also free of all sugars, artificial sweeteners, additives and dyes, etc. These will help tremendously. But I will say, this is the worst kind of flu anyone can imagine and it just goes on and on. It is very serious so I'm sure she is correct when she tells you how she is feeling.
And, oh, even if she graduates one year - or more - behind her class, she is getting an education now, indeed. She will be wiser for all this in many ways, you can bet on that. I do hope she can get some sort of tutor and a plan of action. Plans are good, even if timelines are fluid.
I'm glad she is getting treatment. Have you seen the documentary about lyme, more about lack of being able to get care - but it shows how it can be for many patients. "Under Our Skin" www.underourskin.com $35. for the DVD.
Best of luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Does she have any ear involvement? Vertigo, ringing, sensitivity? If any of that, it makes concentration much harder. Ginger capsules can help some, in addition to other supplement I'm hope her LLMD has her taking (milk thistle, magnesium, fish oil, etc.).
Warm baths (not hot) in epson salts and massage can help ease the herx. So can walking her dog if she is up for that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Hi, so glad you found lymenet. I've been where you are, as have many others here. Will send you a pm.
Posts: 214 | From where ticks flourish | Registered: Dec 2007
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"even if she graduates one year - or more - behind her class, she is getting an education now, indeed. She will be wiser for all this in many ways, you can bet on that."
So very true.
Posts: 214 | From where ticks flourish | Registered: Dec 2007
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posted
Lymemom - My 12 yr old son is under treatment and is on a Homebound program through school.
A teacher brings out his assignments and takes back all the work he has completed.
Has been on this since beginning of Dec.
I have heard the schools are bound by Americans With Disabilities Act to provide this but you do need a doctors order for it.
I honestly do not know how people do all the medications and deal with the insomnia, and all the other problems that come with this and try to do school too.
After I found out the seriousness of all this ( I was clueless) I just wanted my son to put all his effort into fighting this thing and getting better.
And thankfully our LLMD agrees!!
So sorry your daughter is struggling with treatment, hang in there it will get better!!
If I can help in any way PM me.
Take Care, Carol
Posts: 448 | From minnesota | Registered: Feb 2010
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posted
I had Lyme as a child, but Lyme hadn't been "discovered" yet. In my junior year I had to have a homebound teacher.
It worked out great and I didn't lose any ground with my schooling. Call your daughter's school next Sept and see if you can get a homebound teacher for her.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Thank you, thank you,thank you! I so appreciate all of this information. It's a good thing that I like to read!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As all the things below are very common with lyme . . .
MCS ? Multiple chemical sensitivity certainly would warrant accommodation. ------------
If your daughter has any inner/middle ear/vestibular difficulties, that can be one way to qualify for accommodation. Be sure to see the list of vestibular SYMPTOMS - many more than one normally connects to the ears but each one is very important if that one is affected:
All about EARS: ------------------
For those who are sensitive or pained by even normal or soft sounds (sounds not even at noise level):
VESTIBULAR SYMPTOMS - long list here - amazing connections
=====================
More links in the Tinnitus thread. If sensitive to sound, in addition to hyperacusis, see the link for SCD (Superior Canal Dehiscence) as that also causes severe sensitivity to sound and vibration - and can affect vision, too.
ANY thing that adversely affects perception and senses should matter regarding accommodation with learning.
Specific for LYME patients - lots of details about ears and what can help:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
My daughter ended up missing 8th and 9th grade. When she started getting more able to deal with school in 9th, she started doing some on-line work. Eventually, she got well enough to enroll in regular school, though she chose our district's Independent Study option. She's on-target to graduate this June, will attend community college next year.
Here are links to a couple of blogs I wrote last year about Lyme and schooling.
posted
My 23 year old son graduated 1 year late. My 19 year old son is a senior for the 2nd year. He goes to school for 1 class and has a homebound teacher for another class.
He will graduate in June by completing his IEP goals. He has taken all of the basic classes, but not enough elective classes to get a diploma.
We fought will the school for about 5 years until we contacted an attorney.
All school districts are different. Some posters haven't had any problems with the school, and others like us have had a lot of problems.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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