High School with Lyme Disease

[MtnTeaching]

We have just received a diagnosis of Lyme disease for my 16 yo Dd.  This is very tough for my 5'11" athlete.  But, it also answers a lot of questions.  When mono and Epstein Barr were ruled out, she even saw a cancer specialist due to her crazy blood results and symptoms.

 

This winter, she had to stop playing competitive volleyball.  Thank goodness she homeschools, because she would come home from her one-day-a-week public school enrichment classes and be crying from exhaustion and headaches.  We are in the process of working with a Lyme Literate doctor to find the best course of action.

 

Next year, she is determined to continue with her public school enrichment classes each week.  She will have a few online classes, but not as many as last year.  I will be working more one-on-one with her now that her brother has graduated and will be heading off to college.

 

This will be her junior year.  She is dyslexic and the SAT/ACT is going to be difficult for her, but she is determined to go to college.  I am in the process of getting her evaluated again to hopefully give her a bit more time on the test.  I have also read that a Lyme disease diagnosis may possibly allow for more time, as well.

 

Has anyone else dealt with this in high school?

[TarynB]

No advice, but I'm sorry for the situation your DD and your family are dealing with. I know it is a relief to have a diagnosis and to be working on a path forward.

 

:grouphug:

[shanezomom]

Hi! You just replied to my post on our 4 year homeschool plan. Thank you for that.  And we have 4 x experience with Lyme, but none relative to high school yet. Ds going into 9th grade was diagnosed last the fall. I was the first in the family to be dx a year ago. I can sympathize with your dtr. Crippling fatigue, joint aches, fever, neck and head pounding. I cried for a week. Then dragged myself to the doc for a blood test. My dh and mother have it too. We are in Western PA, the hot zone. If you want any more info, please PM and I'll share what I can.

 

Give your dd a big hug for us. It's a lousy situation, but you and she are not alone.

[MerryAtHope]

We have just received a diagnosis of Lyme disease for my 16 yo Dd.  This is very tough for my 5'11" athlete.  But, it also answers a lot of questions.  When mono and Epstein Barr were ruled out, she even saw a cancer specialist due to her crazy blood results and symptoms.

 

This winter, she had to stop playing competitive volleyball.  Thank goodness she homeschools, because she would come home from her one-day-a-week public school enrichment classes and be crying from exhaustion and headaches.  We are in the process of working with a Lyme Literate doctor to find the best course of action.

 

Next year, she is determined to continue with her public school enrichment classes each week.  She will have a few online classes, but not as many as last year.  I will be working more one-on-one with her now that her brother has graduated and will be heading off to college.

 

This will be her junior year.  She is dyslexic and the SAT/ACT is going to be difficult for her, but she is determined to go to college.  I am in the process of getting her evaluated again to hopefully give her a bit more time on the test.  I have also read that a Lyme disease diagnosis may possibly allow for more time, as well.

 

Has anyone else dealt with this in high school?

 

My husband has chronic lyme (unfortunately, he went undiagnosed for 15 years, so his progressed to a very difficult stage to treat). It's good that you've caught this now. Treatment can be difficult, but the prognosis is much more positive when it's caught sooner. (A friend who was undiagnosed only 3-5 years made much more progress than my dh was able to). 

 

Interesting that the Lyme diagnosis may allow for more time. Hopefully you can figure out what documentation you would need, but it would certainly be a fit because of the way neurologic Lyme affects brain function. If she tests as dyslexic, you should be able to get accommodations. I found ACT was easier to work with than The College Board (for SAT) as far as getting accommodations, but you should be able to make it work. Only request what the evaluator puts down (and if there's an accommodation you feel would be appropriate, talk to your evaluator and make sure it's in the report). Start documenting her struggles now and accommodations you made throughout the years (using audio books, untimed tests/additional time on tests, testing in a quiet area with limited other people around, any special curriculum you used like Orton-Gillingham based methods--anything that will point to the fact that the dyslexia was an issue you recognized and addressed as a school all along). Make up your own IEP-like plan for accommodations this year, and if you can remember what you did in recent years but didn't write your plans down, make a record of those. It helps to be able to tell both the boards and the evaluator when you first noticed an issue, when and how you addressed it, if it affected test scores, and so on. I would probably document how Lyme has changed things as well.

 

(((Hugs))) hang in there. I've known Lyme kids to go on to college and there are all kinds of lists out there of famous and successful people with dyslexia. The same evaluation you do now for dyslexia and Lyme can be helpful in getting college accommodations too. She can do this!

[MtnTeaching]

Hi! You just replied to my post on our 4 year homeschool plan. Thank you for that.  And we have 4 x experience with Lyme, but none relative to high school yet. Ds going into 9th grade was diagnosed last the fall. I was the first in the family to be dx a year ago. I can sympathize with your dtr. Crippling fatigue, joint aches, fever, neck and head pounding. I cried for a week. Then dragged myself to the doc for a blood test. My dh and mother have it too. We are in Western PA, the hot zone. If you want any more info, please PM and I'll share what I can.

 

Give your dd a big hug for us. It's a lousy situation, but you and she are not alone.

 

4 people with Lyme - that is a serious bummer!  

 

Dd had the initial symptoms in early March starting with the headaches, then the low grade fever, a terrible neck, shoulder, and upper back pain, joint pain, and the crazy fatigue.  She turned into a totally different person.  Gone was my athletic girl who would take on any boy in basketball.  Gone was my energetic, grinning, joking girl.  In her place was a pale, dark sunken-eyed girl who could barely get out of bed.

 

Traditional doctors were absolutely useless.  They did test for mono and Epstein Barr, but then they thought she had a sinus infection and gave her two different rounds of antibiotics that did nothing but mess her stomach up.  I took her to an ENT who nixed the sinus infection diagnosis.  Then to the Cancer hematologist to rule out the bad stuff.  She had 19 vials of blood taken in one day. 

 

It took going to a doctor who is a full MD, but who also has her holistic license.  She tested her for everything under the sun - and it came back Lyme positive. 

 

We have absolutely no idea how she got it.  The CDC refuses to believe that someone in Colorado can get it.  I have been researching like crazy, but we are just at the beginning of trying to figure this out.  She is hoping that she will be able to take some antibiotics and will be all well.  I am getting more and more concerned as I read about this diagnosis.  I am just so broken-hearted for her. 

 

Thank you for your offer to help with info.  I will PM you.

[MtnTeaching]

My husband has chronic lyme (unfortunately, he went undiagnosed for 15 years, so his progressed to a very difficult stage to treat). It's good that you've caught this now. Treatment can be difficult, but the prognosis is much more positive when it's caught sooner. (A friend who was undiagnosed only 3-5 years made much more progress than my dh was able to). 

 

Interesting that the Lyme diagnosis may allow for more time. Hopefully you can figure out what documentation you would need, but it would certainly be a fit because of the way neurologic Lyme affects brain function. If she tests as dyslexic, you should be able to get accommodations. I found ACT was easier to work with than The College Board (for SAT) as far as getting accommodations, but you should be able to make it work. Only request what the evaluator puts down (and if there's an accommodation you feel would be appropriate, talk to your evaluator and make sure it's in the report). Start documenting her struggles now and accommodations you made throughout the years (using audio books, untimed tests/additional time on tests, testing in a quiet area with limited other people around, any special curriculum you used like Orton-Gillingham based methods--anything that will point to the fact that the dyslexia was an issue you recognized and addressed as a school all along). Make up your own IEP-like plan for accommodations this year, and if you can remember what you did in recent years but didn't write your plans down, make a record of those. It helps to be able to tell both the boards and the evaluator when you first noticed an issue, when and how you addressed it, if it affected test scores, and so on. I would probably document how Lyme has changed things as well.

 

(((Hugs))) hang in there. I've known Lyme kids to go on to college and there are all kinds of lists out there of famous and successful people with dyslexia. The same evaluation you do now for dyslexia and Lyme can be helpful in getting college accommodations too. She can do this!

 

Thank you so much for your recommendations on the documentation.  I wrote all of that down throughout the years, but I do not have it in one concise document.

 

I am very sorry to hear about your husband.  From what I have read, it looks as if chronic Lyme can really play havoc on most of the systems in the body.

 

I will be working hard over the summer to get the evaluation and to document her struggles up until now.  She is looking at taking the ACT and I will contact them next week to see what they will need.  She was going to start taking the tests first thing in the fall so that she could take it several times.

[8filltheheart]

Please post what you find out.  Our dd's story is fairly similar (except not Lyme's).  She used to exercise all of the time and loves to figure skate. Last summer we found out that there is a civic center  with an ISI club with skating from Sept to Mar.  (obviously, no real rinks)  We started going and she would have to get off the ice b/c she was so tired.  (not normal at all)  They ran adrenal fatigue tests b/c she has Hoshimoto's. Other than being anemic, they just saying it was being hypothyroid.  She got sick with low grade fevers over and over.  She would climb out of bed in the morning so tired that she had to go back to bed.  She was recently diagnosed with Lupus (the double stranded DNA tests came back positive, though we were already fairly confident that is what it was based on all her other blood work.) 

 

We registered her for the SAT earlier this yr and she was feeling so sick for the week before that we didn't have her take it.  (Her anxiety was through the roof b/c her thinking is so sluggish.)  She is registered for both the Latin and math 2 for this Sat and she is only going to take the Latin.   She is now being medicated and she is doing much better than she was 3-4 weeks ago when she was so incredibly ill  which finally led to the testing for her diagnosis.  But better is only relative.  Better to a month ago? absolutely.  Compared to her normal self?  no way.  Her thinking is very cloudy.  She is writing notes to herself so she can remember things.   She gets fatigued very, very easily.  

 

For next yr, someone offered us a great suggestion---she is going to take the courses she enjoys as yr long courses, but bc she has so much difficulty focusing, she is going to take her other courses as trimester courses so that she doesn't have to shift gears so much.  She can just focus on the course and get it done.  She was supposed to DE for cal this fall but we have decided not to pursue it b/c if she has anything like she did this spring, there is no way she could function.  We are going to wait and see how things progress and re-evaluate for spring.

 

It never even occurred to me that she might be able to get extra time due to illness.  We had just made the decision that she would mostly likely have to attend locally b/c she has ACT scores from middle school CTY testing that would get her admitted there.  She is way to fragile to see testing as a high stakes requirement for college admissions.

 

(((((hugs))))) to your dd.  It stinks to be a teen and so sick.   :(

[wapiti]

sent you a pm!

[MerryAtHope]

Thank you so much for your recommendations on the documentation.  I wrote all of that down throughout the years, but I do not have it in one concise document.

 

I am very sorry to hear about your husband.  From what I have read, it looks as if chronic Lyme can really play havoc on most of the systems in the body.

 

I will be working hard over the summer to get the evaluation and to document her struggles up until now.  She is looking at taking the ACT and I will contact them next week to see what they will need.  She was going to start taking the tests first thing in the fall so that she could take it several times.

 

Thanks, yes, Lyme can really wreak havoc. Sounds like you're in a good position & have good info. I hope everything goes smoothly for her. Do the ACT test prep and practice tests--it's really worth it and can help raise scores quite a bit. Test-taking has it's own skill-set, and by doing the prep, you'll be able to coach her on the types of questions that tend to trip her up. 

[Elise]

:grouphug: I'm so sorry you and your dd are going through this.  Please know that I am thinking of you!  Our dd (also a rising junior) was diagnosed with a chronic illness this year, and I know the pain of watching your child suffer physically and emotionally (the frustration of "life interrupted.")  The teen years are such a tough time to be ill--just when so many possibilities seem to be opening up!

 

I'm glad that they've pinpointed a cause for your dd, and I hope that her doctors come up with an aggressive treatment plan so she can feel some relief soon.  It sounds like you have some good ideas to lessen her load while healing.  That has been very helpful to us this year. 

 

Mostly, I just wanted you to know that you're not alone.  :grouphug:  This isn't the plan that my dd and I had originally envisioned, but we are learning that it can still be good. :001_smile:

Edited March 11, 2017 by Elise

[Chrysalis Academy]

I'm also just sharing my story for inspiration, I hope. I became suddenly ill with a chronic condition in the spring of my junior year, and experienced what you moms are describing - complete life disruption - extreme fatigue, inability to concentrate, memory problems, etc.  It was near enough to the end of my junior year that I just took the finals with my classes.  For my senior year, I took a seriously abbreviated schedule, just what was required to graduate.  I did improve gradually over 18 months, and was able to attend the local state college on schedule (living at home), and was accepted into their Honors program and ended up having a great college experience, and going to a highly regarded graduate school for a PhD. So I know that life can go on, you can get past a setback like this and go on to have a full and successful life, even if you don't take the educational path you had envisioned.

 

But.  I also remember how completely devastating it was to me to suddenly collapse at 17, to feel like I had lost my life, my future.  I know you guys are probably on top of this, but I would just encourage you to pay attention to the emotional impact this is having on your dc, as well as the physical.  They will need lots of support, encouragement. They may benefit from having a therapist or other mental health professional to talk to. They may very well feel that their life is over, sink into a depression, which can make recovering from the physical issues problematic.  Remember when you were a teenager, and every single thing that happened to you was the most important thing in the world, and it was all going to Ruin Your Life if it didn't turn out as planned?  Magnify that about 1000 times.

 

I feel for all of you, and your dc who are going through these troubled times.  My hugs and good thoughts are with you all.  My health struggles in high school were a life-changing event, but I've had a really amazing, great, lucky, and full life.  Your kids will too.  It might look different than they thought, but it can still be wonderful.    :grouphug:  :grouphug:  :grouphug:

[Another Lynn]

:grouphug:

 

Hugs and prayers for you and your dds, Leslie and Karen. 

[Capt_Uhura]

My son has been dealing with Lyme disease for 4years. He went to public school for 9th after being homeschooled for 3rd-8th grade. He tried to play high school soccer which was wayyy too much for him and his body basically shut down. He has been home w/ homebound instruction since November. He's been IgM negative for 4 years for Lyme and just came up IgM positive which seemingly indicates an active infection. I know this child has not had another tick bite which just tells me all of his illness the past 4years was chronic lyme infection even though all of his doctors said no. He also is therapy to deal w/ this but they were convinced it was just teen depression. Anti-depressants/anti-anxiety meds haven't really helped in my opinion. His main complaint is the never ending fatigue and brain fog. He is now able to play rec soccer on the weekend but it wipes him out for about 2days. We are waiting for the rest of the blood work then will have to decide on the course of treatment. He's already been treated 4x including IV antibiotics.

 

Big hugs to you. I know how devastating this is, especially to an athlete.

 

Sybil

[Splash]

My dd has a different chronic disease that affects her energy and concentration and here are a few things that work for us.  

 

Work hard when feeling good so we can take time off when feeling poorly and can't focus.  

 

Longer school year.We start early and finish late.  We do one class in the summer to lighten the load during the school year.

 

Alternate History and Science  Do one fall semester and one spring semester but still accomplish the whole thing.

 

Breaks in the day.

 

I let her sleep in as often as possible and she just does her work later in the day.  She tends to sleep 12-14 hours currently

 

Choose the most important to accomplish first then if still have time and energy do the rest.

 

We are allowing 5 years for high school.  Some of her 5th year may be dual enrollment but it is a built in buffer in case we end up in hospital again.  If we don't need it awesome.

 

Make sure to allow time for fun.  I overloaded dd with her workload this year (trying to make up for light academics previous year) and although she managed and did well there wasn't enough balance.  Finding that line is tough. We also had to let go of dance team which was hard but did allow for art classes which she loves and finds therapeutic.

 

Find a councilor familiar with illness and chronic disease so they have someone to talk with besides just you.  My dd and I have a great relationship and talk a lot but we still found she needed someone else she could talk to and discuss tough things and even just complain about me since I'm always the one enforcing medications, medical procedures, etc.

 

One option is an online private school called Orion.  The school works with families that need a more flexible schedule and understands illness and works with your family.  Friend used this for a year when her dd was doing poorly and said it was great and they were very understanding about days her dd just couldn't get the work done.  They have you work on one subject for a month then add a second subject.  Each subject is designed to take two months to complete and you're never doing more than two subjects at a time.  It is also possible to finish two grades in a year if necessary.  

 

If you want to pm me about people you can talk to about Lyme treatment I can give you her name and number.  My sister in law has chronic Lyme disease and is very familiar with treatments and how to work through the system.  It's a tough diagnosis right now with not a lot of doctors and insurance company support.

 

Kimberly

[MtnTeaching]

I want to thank everyone for their support and information.  I have been heads down doing what homeschool parents do best - researching.  I think I have sufficiently scared myself to death here.  Lyme is a horrible epidemic in this country and the way our government (CDC), insurance, and most of the medical arenas are handling this is criminal.  I am now understanding that this is going to be a long road for dd, but I am thankful that we at least have some answers.  I am going to do whatever it takes to get her better.

 

I cannot express how much I love this forum and the people here.  You are all so supportive and ready to help with information and relating your own experiences.

 

Thank you all from the bottom of my heart.  (I will probably be PMing a few of you when I get my thoughts together.)

[swimmermom3]

4 people with Lyme - that is a serious bummer!  

 

Dd had the initial symptoms in early March starting with the headaches, then the low grade fever, a terrible neck, shoulder, and upper back pain, joint pain, and the crazy fatigue.  She turned into a totally different person.  Gone was my athletic girl who would take on any boy in basketball.  Gone was my energetic, grinning, joking girl.  In her place was a pale, dark sunken-eyed girl who could barely get out of bed.

 

Traditional doctors were absolutely useless.  They did test for mono and Epstein Barr, but then they thought she had a sinus infection and gave her two different rounds of antibiotics that did nothing but mess her stomach up.  I took her to an ENT who nixed the sinus infection diagnosis.  Then to the Cancer hematologist to rule out the bad stuff.  She had 19 vials of blood taken in one day. 

 

It took going to a doctor who is a full MD, but who also has her holistic license.  She tested her for everything under the sun - and it came back Lyme positive. 

 

We have absolutely no idea how she got it.  The CDC refuses to believe that someone in Colorado can get it.  I have been researching like crazy, but we are just at the beginning of trying to figure this out.  She is hoping that she will be able to take some antibiotics and will be all well.  I am getting more and more concerned as I read about this diagnosis.  I am just so broken-hearted for her. 

 

Thank you for your offer to help with info.  I will PM you.

 

Leslie, Sailor Dude sends best wishes to your family. He was asking the same question about location because there is a national map that you can look at. Colorado was negligible and so is our state, but we had forgotten that one of our nationally-ranked high school swimmers got it. It took over two years to diagnose because it really seemed to be an outlier. They still have no clue how she picked it up.

 

You might check with Mommyfaithe. I don't think she is usually on the high school board, but her son was diagnosed a few years ago, and then if she hasn't been already, I would expect Corraleno to be by and she usually has a lot of good information as well.

 

I hope we'll still get to meet you all this year and that your dd will be on the mend by then. :grouphug:

 

 

[swimmermom3]

:grouphug: I'm so sorry you and your dd are going through this.  Please know that I am thinking of you!  Our dd (also a rising junior) was diagnosed with a chronic illness this year, and I know the pain of watching your child suffer physically and emotionally (the frustration of "life interrupted.")  The teen years are such a tough time to be ill--just when so many possibilities seem to be opening up!

 

I'm glad that they've pinpointed a cause for your dd, and I hope that her doctors come up with an aggressive treatment plan so she can feel some relief soon.  It sounds like you have some good ideas to lessen her load while healing.  That has been very helpful to us this year. 

 

Mostly, I just wanted you to know that you're not alone.  :grouphug:  This isn't the high school plan that my dd and I had originally envisioned, but we are learning that it can still be good. :001_smile:

 

 

:grouphug: :grouphug: :grouphug: Best wishes to your dd and your family for healing.

[swimmermom3]

I'm also just sharing my story for inspiration, I hope. I became suddenly ill with a chronic condition in the spring of my junior year, and experienced what you moms are describing - complete life disruption - extreme fatigue, inability to concentrate, memory problems, etc.  It was near enough to the end of my junior year that I just took the finals with my classes.  For my senior year, I took a seriously abbreviated schedule, just what was required to graduate.  I did improve gradually over 18 months, and was able to attend the local state college on schedule (living at home), and was accepted into their Honors program and ended up having a great college experience, and going to a highly regarded graduate school for a PhD. So I know that life can go on, you can get past a setback like this and go on to have a full and successful life, even if you don't take the educational path you had envisioned.

 

But.  I also remember how completely devastating it was to me to suddenly collapse at 17, to feel like I had lost my life, my future.  I know you guys are probably on top of this, but I would just encourage you to pay attention to the emotional impact this is having on your dc, as well as the physical.  They will need lots of support, encouragement. They may benefit from having a therapist or other mental health professional to talk to. They may very well feel that their life is over, sink into a depression, which can make recovering from the physical issues problematic.  Remember when you were a teenager, and every single thing that happened to you was the most important thing in the world, and it was all going to Ruin Your Life if it didn't turn out as planned?  Magnify that about 1000 times.

 

I feel for all of you, and your dc who are going through these troubled times.  My hugs and good thoughts are with you all.  My health struggles in high school were a life-changing event, but I've had a really amazing, great, lucky, and full life.  Your kids will too.  It might look different than they thought, but it can still be wonderful.    :grouphug:  :grouphug:  :grouphug:

 

:hurray: A resounding "Yes!" to everything in bold. Also, for everyone with young people in crisis, please remember to take care of yourselves. Chronic illnesses can burn through your parental resolve and stamina like wildfire. You need all your brain power, so do the small stuff like eating well, getting outside for a bit of sun if you have it, even a bit of exercise. Call a good friend, have a cup of decaf and decompress. Don't skimp on yourself not matter how tired or pressed for time you are; your kids need you to be at the top of your game. Be sure to keep small, soothing routines and seek counseling help if need be.