Many of you are familiar with Derek's story, but for those who aren't I'll give a quick introduction....

( My son Derek just turned 9 years old. He was diagnosed with Lyme disease just before his 7th birthday.

He is being treated by Dr.Jones and has been taking antibiotics since September 2003. He is doing very well under Dr.J's care, but still has trouble with joint pain and continues to struggle with mixing up his letters and numbers.)

I was referred to an Occupational therapist by Dr.Jones, as Derek's handwriting skills were lacking, due to his joint pain. At times it literally hurt him to push down on a pencil to write.

We went to the OT today for help with his handwriting and joint pain, and she noticed that he mixed up a couple of letters. I told her that he started doing that after he was diagnosed with Lyme..that he had never had a problem with it prior to his diagnoses.

She did several tests on him and I watched as he repeatedly made mistakes with 3,4,6, & 9's. And he also mixed up his b,d,c,p,z,s,j's.

I mentioned to her that his second & third grade teachers both noted that he had difficulty with mixing up numbers and letters occasionally , but I was told it was from the lyme and that he did make less mistakes, once the school year began and he got use to writing them correctly and more frequently.

And also, he has no difficulty with reading, he reads aloud all the time and was even the narrator of the school play, so he doesn't mix up the words when he is reading them, only when he is writing them.

The OT said she hadn't heard of a link between lyme and dyslexia, but she would look into it. She is very nice and I think she has Derek's best interests at heart, but I fear a Dyslexia label is coming, unless I can find some information to support the fact that we feel his mixing up his letters is from the lyme.

She is also setting up a 504 plan which will give Derek extra time to finish his assignments. When he is rushed for time, he makes more mistakes. And I just found out today, that if he didn't finish a task in time, he had to stay in for recess.

And as he had pain when writing, he was late alot, so as he didn't want the kids to think he is stupid, he just rushed through his work...

I wish he had told me all this last year....
He is such an intelligent little boy , I hate the fact that he thinks he is stupid

He never had a problem with this until about 5 months after he was diagnosed with Lyme, and as I homeschooled him at the time, I specifically remember watching this start to happen and I brought it to Dr.Jones's attention ASAP and I was assured that it was lyme related.

I have another meeting with the OT next week and I have been trying to search for information about this, but so far I haven't found anything factual.

As most of you know, my daughter Mikayla was recently diagnosed with Juvenile Diabetes, and I have been totally consumed with trying to care for her..she continues to have bizarre high's and lows and ended up with a keytone build up last week that scared me nearly to death..

So I am here asking my faithful friends here at Lymenet to help me and Derek. If anyone ahs any information I could use to give the OT I would greatly appreciate it.

THANKS!!!!

~LymeBrat

My daughter had trouble using her right wrist and hand in 6th grade, and also had an OT. She had a lot of accomodations at school.

She typed rather than wrote, used a tape recorder, and the school provided a staff "scribe" to write things for her when necessary, including standardized tests.
She also had extra time. It was kind of a flexible arrangement with a list of suggestions provided by me and the MD's, and then teachers worked directly with my daughter to figure out the best way to handle each situation.

I'm sorry about Mikayla still going up and down dramatically. When my daughter was her age, we sometimes tested 14 times a day. Now she only does 6 some days. The pump helped some- I wish they would put kids on when they are diagnosed, as they do in Europe and, I believe, California.

I know the burdens you are living with and the effort it takes to also take care of another child, while you are exhausted by the demands of the diabetes.

Hang in there! If Derek's situation isn't totally clear now, it will become clear in time. Sometimes answers don't come as quick as they should or as we like, but they do seem to come at some point.

I was born without depth perception & am close to legally blind. I compensated by reading outloud, following text with a pencil (it made some of my teachers angry...they demanded that I stop), and 'mirror writing'. I still do these things.

My elementary school lists me as 60 IQ (I am now a MENSAN) because I could not do their standardized tests fast enough. I was put into special ed by mistake. It took YEARS for me to believe in myself because a label was stuck to me.

The Dr.'s who embrace vision therapy treatment are still laughed at in the US. Here is a good organization. Please read what they can offer: http://www.visiontherapy.org/

Recently I wrote to my eye therapy Dr. I was his patient 30 years ago. I wrote him a thank you note.

I don't know if my experience will help, but . . .

I never had any sort of dyslexia growing up. But as I look back to a couple of years ago when my Lyme symptoms started . . . suddenly I developed tremendous difficulty with dyslexia. Being an administartive assistant (before I lost my job due to being sick) was sooo difficult because I was constantly flipping my letters. It was extremely frustrating because I had so much typing to do and all of a sudden everything I typed turned into a bunch of flipped letter gibberish.

So, for me, out of the blue at age 31 I developed mysterious dyslexia along with all these other strange symptoms. SO I would tend to suspect that dyslexia could be part of the Lyme.

Cheers,

You need to get an IEP not a 504. The IEP carries a lot more weight and will be more helpful for your sons situation.

My daughter is a 3rd grader this year and is doing much better with lyme treatment. She is also doing vision eye therapy. My childs teacher wanted to put her in the gifted and talented program this year and I said no.

Vision therapy has helped her tremendously. She has trouble with focusing and eye teaming abilities. That is a great place to start.

Have you thought about Dr. J writing a letter on Derek's behalf or having her call him directly?

Last year I remember going round and round with the school nurse about lyme disease and how 30 days of abx is the protocol. I asked her to call my LLMD and she just never could get a hold of him. I suggested she call his nurse and she never got around to it.

Threw school I had problems reading
and writing--I had tutors in grade school
and reading classes in high school--
It wasnt till I turned 30 and I saw
a TV show on dyslexia that I figured out
what was up with me--

I thought Everyone saw numbers and letters
backwards sometimes--No one ever asked
me what I saw--If some one would have
asked- I think I would have been able to
tell them--even at age 9-

Ask your son what he sees--

Dyslexia comes in many flavors--
It may only effect you if a
certain type face is used or
numbers or letters - color-ect.
Or it could be that everything
is scrambled and backwards--

Its different for everbody--
I think he is old enough that
he will be able to give you
good answers if you ask
good questions--

Like I said - if someone would
have asked what I saw- I would
have been able to tell them--

From what you have written I
tend to think your sons problem
is Lyme related-- Lyme sure pounded
my brain much more than dyslexia has.

The typos on this site are much
worse than any other site I go to.

It is important for you to help
your son not to feel stupid--
weather his problem is caused by
lyme or dysexlia.

In school to make up for my dyslexia
I learned to listen real well-
and this has helped me tremendiously-
all threw my life--

In classes that the teacher talked
I made good grades-- the ones that
made me read to learn I didnt-

The Dyslexia lable is not nessiarly
a bad thing--Many who have it
are gifted in other ways--
Many Smart and Important people
threw history are thought to have
had dyslexia--

Dyslexia dose not equal stupidie-

In high school I was given 2 IQ
tests--the first one I scored
a 160 the second a 163-
I could do complex math in my head-
I just could not write it down--
I also had kind of a photographic
memory--and I could see exploded
views of anything--was cool-

My friends all considered me the smart
one-- they just knew not to have
me read write or spell anything--

After having lyme for 20 yrs
it is now tough for me to do simple
math and its very hard for me to
remember what I Just did--

I have done much research on
dyslexia - if you have any
questions email me --Jay--

So many people over the years told me about difficulty with reading and writing numbers. Filling out a check was a nightmare. Writing down phone numbers etc. caused all sorts of problems. I actually had some problems in that area.

The Neuropsychiatric Manifestations
of Lyme Borreliosis

Brian A. Fallon, M.D.
Department of Psychiatry, College of Physicians and Surgeons of Columbia
University, and Division of Therapeutics, New York State Psychiatric Institute,
New York, New York.,

Jenifer A. Nields, M.D.,
Joseph J. Burrascano, M.D.
Southampton Hospital,
Southampton, New York.,

Kenneth Liegner, M.D.
Northern Westchester Hospital Center,
Mt. Kisco, New York.

Donato DelBene, B.A.
Department of Psychiatry, College of Physicians and Surgeons of Columbia
University, and Division of Therapeutics, New York State Psychiatric Institute,
New York, New York.,

Michael R. Liebowitz, M.D.
Department of Psychiatry, College of Physicians and Surgeons of Columbia
University, and Division of Therapeutics, New York State Psychiatric Institute,
New York, New York
Reprinted from: Psychiatric Quarterly, Vol63, No 1, Spring 1992

[excerpt]
These odd, idiosyncratic but quite common symptoms were reported in 69% of our sample. Patients with no prior history of dyslexia have found themselves writing letters backwards, reversing numbers or routinely reversing the first and second letters of a word. One patient recalls also switching her shoes: putting the left shoe on the right foot and the right shoe on the left foot before she realized her mistake. This patient also experienced what might be understood as reversals in temporal sequencing: for instance, saying the word "tomorrow" when she meant "yesterday" and vice versa.(end quote)

Ann - OH
p.s. If you e-mail me, I will send you some good info on how schools should treat kids with Lyme.

The LDA pamphlet "The ABC's of Lyme" is also a good piece to give people in schools.

Thanks for the posts.

I spoke to one of the nurses in Dr.J's office today and she said they are inundated with requests for letters to schools, doctors etc..

She did talk to Dr.J and he said to continue seeing the OT as he needs the therapy. She said they didn't have any literature about a correlation between dyslexic type symptoms and lyme in the office, but id she found anything she'd mail it to me...

She did say that if on Thursday they are looking to do a dyslexic 504 instead of a joint pain from lyme 504 that Dr.J would call the OT and fill her in on Derek's case.

So I guess I will keep scouring web sites looking for info..Thank you Ann for the article..it is exactly what I am looking for!!!

I found another article by Dr.Fallon listing letter and number reversals as a symptom of lyme and I already have the ABC's of Lyme in my folder to give her.

I also knew that my state passed a resolution to support funding for Lyme Disease in May, so I went to the site and printed off the resolution as it had some good info on it as well..

So I will keep hunting..

Thank you all!

~LymeBrat

Bb isn't the only pathogen capable of doing this. I know of 2 others so far.

These pathogens appear, like Bb, to follow the cholesterol pathway...depleting specific nutrients.

Can one develop dyslexia later in life? Yup.

"Mounting evidence suggests that a relative

***lack of certain polyunsaturated fatty acids***

may contribute to related neurodevelopmental and psychiatric disorders such as dyslexia and attention-deficit/hyperactivity disorder."

Child Care Health Dev. 2005 Sep;31(5):629-630.

PMID: 16101661

And then show those disbelievers this:

acetyl-CoA C-acetyltransferase (fadA) Borrelia burgdorferi 398 0 - GenPept PSI-BLAST
http://www.sbc.su.se/~anna/PhylProM/families_with_members_in_profile/gi1652965.html

Gene research (above) indicates Bb uses Acetyl CoA...needed to make cholesterol and the neurotransmitter acetylcholine. See the "choline"...well...

Vitamin B-6 + Magnesium = Choline which changes to Acetylcholine. Also changes to Phenylaline and can increase Dopamine.
http://www.chemicalbalance.com/part_one_manual.htm

Above is a GREAT website...for info. re: which nutrients, what diet, etc.

Reversible? I'm hoping so...crossing my fingers...but I know it's gonna take a long time. Mg is capable of stimulating DNA repair. Ritalin helped my son overcome dyslexia (to a degree) many years ago.

But his 20 year Ritalin use - nonstop was not a good thing in retrospect. Recent research indicates it causes depression later in life and ups the risk for cancer.

Ritalin works by increasing Mg plasma levels. That extra Mg had to be coming from somewhere...

PMID: 11056411

PMID: 7761553

PMID: 36423

/newsdetail/408/526657.html

SOURCES: Carlezon, W.A. Jr. Biological Psychiatry, Dec. 15, 2003; vol 54: pp 1330-1337. News release, McLean Hospital, Belmont, Mass.

My son, when in 1st grade also had to stay in from recess because he couldn't finish his work in time. This greatly impacted his opinion of school.

Kids should NEVER be held in from recess...never, ever! They NEED the exercise...for starters...they NEED the social interaction...

My son went thru vision therapy...very specific exercises for the eyes. The biggest help came from...and you're not going to believe this...he had to put BIFOCALS in his glasses. The difference was mindblowing..and immediate. For once he held a book still. We also took him to Brittanica Learning Centers (like a Sylvan) at significant out-of-pocket expense to try to keep him up.

Re: ketones...your daughter's body was trying to find a way...

It is known that ketones can shut down an enzyme called phosphofructokinase (6) .

This enzyme plays a critical role in glycolysis, a process that may be the only source of energy for cancer cells. Without sufficient energy, cells cannot produce sufficient ATP. This creates a build-up of free radicals that can lead to apoptosis.

Normal cells are not necessarily affected in the same manner because they derive most of their daily energy needs from the Krebs cycle (7) .
http://www.apjohncancerinstitute.org/caatdoctorprotocol1.htm

When I went to verify the above website, it was not available. However, the following 2 websites provide similar information.
www.apjohncancerinstitute.org/newsletter-old2.htm
http://www.lowcarbluxury.com/newsletter/lclnewsvol03-no04-pg2.html

Have you considered Rife/Ondamed therapy?

One of my teaching certificates is in the area of learning disabilities. Back in the late eighties and nineties I used to do diagnostics and remediation of learning disabilities for my local public school system.

Quite frankly, I am surprised that an OT has the expertise/authorization to diagnose and perhaps label your son as being dyslexic. This, in my opinionm,is a label that I would not take lightly.

In the school system that I was employed by we had a multi-disciplinary team comprised of a learning disability specialist (which at that time included my services), school psychologist, special education director, speech therapist, guidance councelor, and social worker. This basic team would assess whether an educational and/or learning disability work-up would be appropriate and if other specialists needed to be brought into the picture.

My suggestion to you would be to request an Ed/LD evaluation by the team that services Derek's elementary school if there is any concern that he may be dyslexic or is not working up to his potential based on IQ and classroom performance as well as his performance on standardized tests administered by his school system. If test results and observations indicate a learning disability exist, then an I.E.P. can be designed for your child.

I worked with children daily who reversed and imposed letters and numbers. However, this did not result in a diagnosis of dyslexia. It did require remediation, but in reality there are very few children who truly are dyslexic. The definition of dyslexia basically means the inability to learn to read (non reader). Again, reversing letters and numbers can be remediated, but I would insist on a full Ed/LD evaluation before I allowed the label of dyslexia be given to my child.

If I can be of any help, please feel free to e-mail me at: [email protected].

My response is in General..same thread title.

The treatment, per Dr. K. works well for adults and for children. He says "up to now there is no other quicker and gentler method to alleviate this problem." It starts with using the proper colored glasses!

Many children reverse letters and numbers early on (I have 3 kids, two of them did this a lot). I was told not to worry about it a whole lot.

The other thing is, my own experience with Lyme and typing things is that the problem is a motor problem for me, perhaps motor combined with neurological. It is not a learning disability, my brain isn't having any problems processing anything, it's just that my fingers don't do what my brain wants them to.

This OT shoudl be helping you more in terms of getting accomodations for Derek's physical problems w/writing. This would be a 504. It osund to me like he isn't being accomodated adequately. so that his pain can heal. Is he doing any exercise that help? Heat or electrical treatments?

There is a computer program...Fast Forward.

If someone gave me a number over the phone I would have to have them repeat it several times before I wrote it down correctly. I couldnt even give out my own number unless I looked at it. Did it wrong again just the other day.

That is better no that Im not working and not so strung out trying to hang on. I still mix up words and my bad spelling has gotten ridiculous.

Than being said I dont see any reason that it has to be one or the other. Not every symptom should or necessarily is because of lyme.

He could have dyslexia and lyme. She may be qualified to diagnose dix. but not lyme. I dont see how she can rule lyme out just because a child might be dix.

Thanks to everyone who emailed me and responded here on this thread. Derek is very lucky to have so many people who care about him.

Update:

I spoke with Dr.Jones this morning. He said Derek is definitely NOT dyslexic. He said that a child with true dyslexia, would have trouble reading and the symptoms wouldn't come and go as they do with Derek.

He seems to have more difficulty with this when he goes back to school after taking the summer off, and when he has alyme flare or herx.

Plus, he has no problem reading. he reads aloud all the time and was even the narrator for his school play.

And his grades were all 1's and 2's, which is our school for 3rd grade, are a's and b's.

I too questioned why this OT was focusing more on the possibility of a dyslexia diagnoses, when his hands are so painful from joint pain, that he could barley hold the pencil..

So I think I will go to the follow up on Thursday and let her do her thing, hear what she has to say..and then politely ask if we could address the issue at hand, which is helping my son write better and help him with his joint pain. And then Dr.J, said he would call her and speak to her if needed.

I have a feeling that a call from Dr.J, will put the dyslexia on the back burner and she will focus on the real need..his joint pain and helping him write.

I mean, she didn't even give me exercises to help him with the pain, she was so focused on the possibility of dyslexia.

Thanks again for all your help. I have several articles stating that number and letter reversals are very common in lyme patients. And in one study, 65% of people reported reversals..so I am hoping things work out.

I will let you know how it goes on Thursday.

thanks again everyone!

She went to a great OT who specialized in hands, at Health South. The OT made her a soft splint that was really helpful, and she spent those months doing all kinds of exercises (Pickijng popcorn out of clay was one of my favorites). They gave her some kind of play-dough-like stuff to use at home for strengthening.

At school, she could use the computer, a tape recorder for notes, and they assigned an aide/scribe to write for her for tests. They also let her dictate homework to me, and I would write it, including math.

She gave up the clarinet for this period, but she went to band anyway and read the music, or played a triangle or other instrument just to stay in the class.

We got her padded pens which helped when she started to try to write again.

Anway, this problem got totally better in 4 months! I hope this gives you some hope.

As a precaution, she has played clarinet only half the time since 2002, but is finally going back to full-time. Her guitar playing has also kept her finger joints in good shape.

Could Derek be having both the pain issue that my daughter had and the neuro problem I have with writing? My fingers are stiff but I feel like my problem is in my brain, and it comes and goes.

Thanks for the encouragement. Derek like most kids, is very aware of what is going on around him, and he is very concerned that this OT thinks he is stupid.

She in no way even implied it, but looking back over that day, he knew he made alot of mistakes with his numbers and even has me practicing with him at home.

The first day I did it, he missed about 9 numbers & letters. Today, he didn't miss 1. So who knows what is going on.

I just don't want him to think he is stupid, as he is a very bright child. I keep telling him that everyone has their strengths and weaknesses.

And that true, his handwriting needs improvement, but I have yet to meet many adults who are as knowledgeable as he is about American history, especially about wars.

Plus he is a wiz at math and science. Dr.Jones told him to stop the negative thoughts and that he is a very intelligent little boy, so I think we got through to him.

Ya, my life is a bit chaotic...;D

It seems like I'm Eeyore with the big black rain cloud hanging over my house.

Oh well, we have to take what life throws at us and do the best we can with it.

Ya, Lyme sucks, and juvenile diabetes sucks even worse, but at least my children have something that they can be treated for. And I have faith that Derek will be cured one day. I know Mikayla will unfortunately have diabetes for the rest of her life, but thanks to modern technology, we are able to give her wonderful medical care, that will hopefully help her lead as close to normal life as possible.

Our new motto is.... Bring it on!!!!

as no matter what life has thrown at us, we are determined to beat it, or at least not let it beat us.

Mikayla has earned over $800.00 for her walk a thon to help cure Juvenile Diabetes. Her goal is $1000.00. She is determined to not let this disease take away her childhood.

It's seeing Derek struggle through his pain to play baseball like the other kids, and seeing Mikayla wake up everyday to face blood tests and multiple insulin shots, that gives me the strength to carry on.

If these two kids can fight so damn hard to make the most of life, that I sure can as well.

I know you understand what I mean, as you have been in my shoes. Kids are so remarkable. I wish more people acted with the heart and determination of a child.