posted
My daughter in 10th grade, her first year of high school. She was diagnosed with Lyme almost three years ago. Other known diagnoses are Q Fever, Bartonella, and Protomyzoa. She has treated pretty steadily, and aggressively for the last 2 years.
I think her brain is affected both from disease and treatments. Hopefully not permanently.
Had increased depression/suicidal thoughts past couple of months and is now on antidepressants. Not sure they are helping. Was on Cipro at the time and I think it may have caused. Adolescent psychiatrists hard to find, and probably not Lyme literate.
I am very worried about her academically. She didn't attend school at all for two years. She was on "home hospital" where a tutor came here every week and then took online courses, slowly adding a few classes. She improved enough to attend full time since last year.
She was determined to go full day and is relishing being part of teen social world again, but it is demanding. School here begins at 7:30 am and she gets on a bus at 6:50. Her regular sleep is probably no more than 8 hours. She is 75% better, by her estimates. Still feels sick and still throws up at school sometimes.
We established a 504 plan to address her academic needs. However, I think it is hard to address them in the High School system. Generally they allow for less homework, more time on assignments, and several things like where she sits, how often she can leave the classroom, etc. Teachers and administrators here have little knowledge about Lyme so they have been very good to work with.
What I see as issues are she doesn't stay organized with 8 classes--can't remember assignments, doesn't remember what the teacher said, doesn't remember when things are due. They seem like simple things, but honestly for her they are big things. She tests very poorly. She gets F's on her tests in the hard classes (graduation requirements). I work with her a lot on her homework and it is evident that a lot doesn't sink in.
Has anyone addressed similar things? Would there be a value to have to have testing done that would substantiate the decline in her IQ since getting sick? Is it is wise to have such results on her academic record? Would I request through the school?
Other helps specifically for teens with Lyme and their parents? Forums etc?
Thanks!
Posts: 312 | From Utah | Registered: Nov 2010
| IP: Logged |
posted
Personally I would do nothing to document her condition on a school record, that the government is considering fair game to tack and control for the rest of one's life.
What benefit would there be regarding IQ tests? Just to affirm that she cant learn or isn't very smart, that could all change anyway if she gets well? Do you want her in a special ed class?
Her medical record will be enough for documention if she ever has to apply for disability.
Posts: 803 | From USA | Registered: Oct 2013
| IP: Logged |
posted
There are some advantages to having a good psycho educational or psycho neurological testing. If she qualifies for a Learning Disability she can get accommodations on her SATs and other standardized tests. And her colleges do not even know she took the test with accommodations.
She can also get accommodations on her tests. These accommodations, like extra time on tests if she has slow processing speed or anxiety, or a quiet place to take tests if she has attention problems, or the ability to just circle answers instead of filling in the circles on the SAT (if she has visual scanning problems) really help her scores.
Also, in college, she can have the same accommodations. Other accommodations she can qualify for help with note-taking in college, like getting teacher or peer-provided notes. All of this can make the difference.
All of these kinds of cognitive needs are common for students who have had Lyme. I don't remember her name but there is a research psychologist in Virginia who has been studying cognitive issues
-------------------- 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
| IP: Logged |
Also, most colleges want the psych testing to be less than 3 or 4 years old when she arrives, so it's a good idea to what till 10th grade to do the testing.
After admission to college you contact the Disabilities Office and they arrange the accommodations.
You may be able to get the school system to pay for the testing.
Good luck.
-------------------- 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
| IP: Logged |
posted
I have a sophomore daughter who also missed years of school due to Lyme. We had a tutor come but she did not get much done. She now goes to a private school with a reduced day and reduced homework. Lots of kids at this school also have this for various reasons.
If you can find a way to reduce her school day, I would recommend it. Maybe through her 504 plan? If she could take just the essential, basic classes and either go home or have study halls, that could be helpful. She would be less fatigued, have less to keep track of, and more time to do it.
We did do the neuropsych testing for my daughter with a LL psychologist in NY. I wanted to find out what cognitive issues there were so we knew how to help and what to expect. Also, we will be able to try to get accommodations on the SAT with it. We did it privately and I have not shared the results with the school. I have always heard that the testing done through the school doesn't do an adequate job of finding the problems, but since she was in a private school, we didn't have that option anyway.
Her test results included a list of suggestions for the school. If we were in the public school, I think we could ask the school for these accommodations and there is some expectation that they would do at least some of them. Things like extra time on the tests, not more than one test a day, advance copies of the teacher's notes, no calling on her unless her hand is up, etc.
My daughter's IQ does not seem to have decreased. Her processing speed is slower and her memory is not as good. The doctor told her that she was smart but she would need to take her time and have lots of repetition but she could learn it. There was a time when her cognitive abilities were much worse than they are now.
I think the testing is a good idea just to know where things stand. I would do it outside of the school if you can because then you can decide what to share with them.
[ 10-27-2013, 01:30 PM: Message edited by: jkmom ]
Posts: 984 | From US | Registered: Dec 2007
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I have not had a child with lyme. I really feel for you. When I was really sick, before treating PR, I tested below average on an IQ test but if I had a child I don't think I would want to document this and label them as learning disabled. I believe it would affect her friendships. It is better in buy opinion to just be "sick".
If you do not have your daughter on a strict low fat vegan diet, this would make things much better. Ivermectin is very powerful for knocking it down.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
I would strongly encourage neuropsych testing through a Lyme literate neuropsychologist. There are a couple of good ones in the NYC area. I know that involves travel but it would be worth it if you can afford it. The test speaks the school's language so it usually makes the educators more receptive and understanding. And i wouldn't worry about sharing those test results with a public school system as long as you agree with the assessment.
I would also recommend you push for an IEP. The plan can be customized to your daughter's specific needs and gives you more leverage if she's not getting the accommodations she needs. Most schools hand 504's out like candy but you undoubtedly will have to fight for the IRP. The neuropsych report would be huge in this effort.
If your daughter is really struggling to be in school and to keep up with the work, you might want to consider a reduced schedule. Is she still hoping to graduate with her class? As I tell Lyme families, Lyme may cause one to take a different path but they can still be successful. Lighter loads and graduating later is one option. A GED is another. My daughter missed most of high school but took the GED route and graduated from college almost on schedule. Instead of worrying about credits for graduation the GED would allow your daughter to primarily focus on her areas of interest and strengths. It takes a lot of pressure off the student and allows you and she to focus on her healthcare needs.
Also, if she finds her symptoms worsen at school, it could be the fluorescent lighting and/or all the noise & commotion in the hallways and cafeteria. It is often too much for patients with Lyme and/or Bartonella to endure. Has she been diagnosed with Bartonella? That can really impact her cognitive abilities. The Lyme often impacts the executive functioning area of the brain which usually leads to difficulty with organization and following through on assignments and taks. Then of course there is the memory loss & fatigue. My daughter's brain processing speed was reduced by half by Lyme & Bart.
I've worked with a lot of teens with Lyme. I think the focus should be on getting her better. She can get back on track once she has recovered. I know what it is like as a parent to see months and years go by with your child falling further and further behind in their studies. But believe me they can get and often do get back on track and have successful adult lives. Do what you think is best for your daughter and don't worry about what the school thinks. Typically they don't get it.
Posts: 57 | From CT | Registered: Jan 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic