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

For what it's worth, I'll tell you what he said about my 13 yr old grandson.
His diagnosis was "Lyme Encephalopathy" (for newbies - that's inflammation of the brain ).

We're pretty sure he got LD about the time he finished 1st grade.

A half-starved wild kitten came into their yard from Fort Jackson, so of course they fed it & it stayed close by. There are signs that say the Fort is a Lyme Disease area, so odds are good that the kitten had ticks and/or fleas carrying Lyme.

This child had no problems with school work in 1st grade & most of 2nd grade, but gradually started developing what appeared to be ADD. About 4th grade, test results said it was not ADD but they didn't know what the problem was.

Thanks to the wonderful people here on LymeNet, we learned about Dr J.
When Dr J saw him near the end of 6th grade, he said it couldn't be ADD. He explained that those type problems show up early in life. They don't just start developing after successful years of school.

I would think that Dyslexia would be a similar situation.

Please tell Derek I think about him every time I hear the bugle at Fort Jackson, which is adjacent to my neighborhood.

There is quite a bit of info about LD inducing dyslexia, even in adult patients. Bransfield seems to be the best source:
http://www.canlyme.com/cog.html
"Processing is the creation of associations which allow us to interpret complex information and to respond in an adaptive manner. Some LE patients say they feel like they acquired dyslexia or other learning disabilities, which were not present previously. Examples of processing functions that may be impaired in the presence of LE include the following:
Reading comprehension: The ability to understand what is being read.
* Auditory comprehension: The ability to understand spoken language.
* Sound localization: The ability to localize the source of a sound.
* Visual spatial perception: Impairments result in spatial perceptual distortions. One example is microscopia, in which things seem smaller than they really are. One patient lost depth perception, and had several accidents when the car in front of her stopped. A problem associated with visual spatial processing is optic ataxia, in which there is difficulty targeting movements through space. For example, there may be a tendency to bump into doorways, difficulty driving and parking a car in tight spaces, and targeting errors when placing and reaching for objects.

One patient with optic ataxia, was stopped by a policeman while driving two miles to my office because he kept swerving across the center line. Before Lyme disease he could consistently shoot 13 to 14 out of 15 free throws from the basketball foul line. Now he averages 3 of 15, and misses some shots be several feet. "

Also, What Psychiatrists should know about Lyme Disease (PDF file, largish and printable)

Don't miss this crucial diagnosis.
Patients with late-stage Lyme disease may present
with a variety of neurological and psychiatric
problems, ranging from mild to severe. These
include:
* Cognitive Losses such as:
o Memory impairment or loss (``brain fog'')
o Dyslexia and word-finding problems
o Visual/spatial processing impairment (trouble
finding things, getting lost)
o Slowed processing of information

And it's even in Loyola College's official Disabillity Support page!

Educational Implications:

These neurological problems are marked by poor memory, difficulty with concentration or reading, forgetfulness, difficulty with speech, disorientation, confusion, dementia, and dyslexia. The central cognitive deficits in adults with Lyme Disease relate to problems maintaining focus, retrieving information from memory, and short and long-term memory loss. The degree of reduced intellectual performance varies from individual to individual. In more severe cases of chronic Lyme, these deficits may cause a significant impact in the workplace and in daily functioning.

Cognitive problems due to Lyme Disease may impact upon a student's classroom performance are:

* Forgetting
* Difficulty paying attention in class
* Easy distractibility
* Restlessness
* Reversals in math and spelling

That's what I found specific to dyslexia and LD -- there's a lot more that discusses general cognitive deficits for children with LD, and these usually mention problems with reading and comprehension.

Hugs. Remember to breath. Take care of yourself and be sure you're eating properly. And getting as much sleep as you can.

Also, I find my reading is fine but since i've been sick w/Lyme I reverse all my letters when typing or writing. This paragraph looked awful before I went back and fixed it!

Miss you and Derek and Mikayla....

I have some information for you, but Im not posting here anymore...contact me via email....

It's just one @#$% thing after another at your house, huh? You get mom of the year, for sure!

I honestly don't have any medical advice - just a thought as a former teacher -- just wanted to suggest that it's not entirely impossible for him to have both Lyme AND Dyslexia - and that having an educational plan to allow Derek the extra time he needs to complete assignments is not necessarily a bad thing.

Right now, as he is young, you will have to do more to help build his self esteem to reverse any nonsense/teasing brought about by mean kids. As he gets older, no matter what the cause (be it Lyme, dyslexia, both) he will learn not to let others' opinions determine his own opinion of himself.

As far as whether he truly has dyslexia or not, I am not equipped to say or lead you in any direction. I know that I have trouble when writing - mostly with homonyms - but I don't know how it (Lyme) would effect me differently if I were a young child learning to read. So - after you find out - maybe you can tell all of us!!

You're a good mom -- you'll naturally do the right thing!

Plus...I would add this to my school info for the local school system.

trout

PMID: 16101661

Bb follows the cholesterol pathway...takes fatty acid nutrients from us.

Vision training helps. Very old treatment. Some athletes go thru this to help with co-ordination. Bifocals may help. Yes, bifocals. Worth checking out.

I would talk to the teacher about his need to get exercise, to join the other children at recess for the social interaction.

In first grade...same thing happened to my son...I hit the roof.

Children should NOT be kept in from recess if they cannot finish their work....ever.

Lyme encephalitus, caused by active infection and all the domino effects thereof..

can cause dyslexic-type and other neuro-symptoms...as certain centers of the brain are effected (or, important differentiation -- INfeceted) which control mood, thinking and behavior..
any or all of these in adults and children.

There are a multitude of cognitive issues that can present themselves. There is also specialized testing with LL neuro-psych testing administrators/interpreters that can identify the cause as reactive to infection. You have to be careful because non-LL educational tests can pigeon-hole him into an 'umbrella' diagnosis, and then the 'educational goals' set do not include vamping along with recovery and treatment, as is the case with Lyme.

Sometimes that's OK within the big picture SHORT term, very temporarily, but long-term it isn't, and is better to get the correct diagnosis in school records IMO.

I also feel correct diagnosis offers very important inclusions in an IEP (prefered plan, IMO) or even a 504..
such as the importance that staff is held to be aware and recognize the FLUCTUATION in symptoms prevalent in Lyme..
so Derek can do what he can when he can..and have it noted that he will have relapses and bad weeks in between.
Improvement IS NOT LINEAR, and needs are not steady, or the same as time goes on.

Dyslexia is a condition in which the symptomology is steady..
and in which remedial work improves skills to an extent. Very different than Lyme in presentation and needs in that regard.
Tho it is possible he has bith (?) ..I would think that having Lyme would make Lyme the prime suspect, especially since he didn't show these problems earlier.

In Lyme, remedial work not only doesn't improve skills significantly (other than improved coping skills)..
it also can be more taxing and cumbersome on a student than it is helpful.

When he is sick, he will need rest and continued infection treatment, not remedial work..

His higher cognitive skills will remain in tact in Lyme, and in times of sickness it is important he not be burdened with remedial work ggeared toward helping a dyslexic child.. if indeed the cause is Lyme, as that will only drain him and not service him in the best way toward recovery, or the most helpful support and recognition for the cognitive skills remaining in tact
(that smart stuff you see----- that HE sees, that is effected by an infectious condition which fluctuates and effects LOWER cognitive skills in waves, but not the higher skills).

In dyslexia there is also an issue of higher cognitive skills being recognized, and problems with lower being identified as
the disability/deficit..however in Lyme cause ans treatment is much different..much different needs/treatment/response and patterns to recognize and support.

above just as examples..

(also..OT therapist does not have the qualifications to diagnos the cause of Derek's letter reversals, as nice as she may be, it's simply to ask 'what quakifications do you have to make this determination' or..'how many cases of chronic Lyme in children have you overseen treatment to efficacy in?')

I have some info that might help, as per our experiences.

You can e-mail me if you like..
I don't post here actively anymore.

[email protected]

Mo

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!