posted
I have a 9 year old daughter that was diagnosed with Lyme and Bart in December 2007. She is on Biaxin and Ceftin and physaical symptom wise is doing much better. I am very concerned with her neurologically though.
She was bitten in kindergarten and treated with amox and we were told whe was fine. We had no reason not to believe our Dr so we went with their advice and she seemed fine. Well in Kindergarten she was a normal kid learning to read and write even spell at an above average level. By the begining of 1st grade she would read her books backwards and started making all of her letters and numbers backward. I mentioned it to her teacher and was told she was normal. The next year in 2nd grade as the year went by she was much worse. I asked that she be tested for a learning disability. The school put it off saying I was too concerned.
I went in to school the first day of school in 3rd grade and demanded she be tested or I was going to sue the school. The tests came back showing an above average IQ but many problems with her reading and writing. Which is what I had been telling them. In December she was diagnosed with Lyme so now I wonder if Lyme not her learning disability is the problem??
SHe is 8 getting ready for 4th grade and no one even her can read her hand writing. She can read but it takes forever and she mixes up words all of the time. She points to things and will call them a similar name but not the correct thing and not ever notice. Going into 4th grade she is reading on a 1st grade level so she has not really made any progress since kindergarten.
I wanted to see if anyone has had any similar problem and see if anyone thinks a LLMD Neurologist will help.
THANKS for any info you have I am so worried that I am not doing the right thing for her and she is going to be behind her entire life because of what is going on now.
KIM
-------------------- Thanks,
KIM Posts: 13 | From MD | Registered: Jan 2008
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Hi, Im no dr, but Ive got kids, and Ive got lyme (I think..), and Ive worked in the school setting, so between the three areas, maybe I can help.
I think the first thing to do is try to schedule an apptmt with a neurologist to run the stardard tests on your daughter. While lyme might be the culprit, you have want to rule out any other cognitive disorders as well. Especially since most neuro are hmo bound, it may be easier on your pocketbook to get the gambit of tests done under a regular hmo neuro first before heading to the llmd.
The other thing to do is talk to a pyschologist/mental health expert to find out if there are other issues affecting her cognitive abilities. It sounds strange that a school would say she is fine, heading into 4th grade, but reading at a 1st grade level. Part of it sounds like dyxlexia (sp?), wherein the child is reading, writing things backwards. Thats not uncommon, but it does need to be addressed.
Also, you might want to consult a learning disabilities company, like Sylvan, to have them do an evaluation on her scholastic, cognitive abilities.
Lastly, its no consulation right now, but many kids who start out slow will catch up over time once the barriers are figured out and corrected. Maintain positive reinforcement with her and try not to let her see how frustrated you are with the schools and situation.
Good luck!
Posts: 514 | From . | Registered: Apr 2008
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bettyg
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posted
kim,
could you break up your text more; shorter paragraphs? instructions below....big thanks, and then i can try to help you ok!
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also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
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Also, if you are needing a LLMD, LYME LITERATE MD, please post on board in SEEKING DR. forum. Go to FORUM HOME, right corner click, and then chose seeking dr.
We ask that ALL members post in seeking dr. and START THEIR OWN ``NEW'' POSTS vs. adding on to someone else's because we can NOT keep track of who has been answered and who NEEDS to be replied to ok!
Many of you have been sending me a private message asking for llmd names and have NOT posted on the board. I require you to post online because when you show the state and largest cities nearest you; others from YOUR STATE WILL JUMP IN and give you the MOST CURRENT info that they have.
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So thank you for starting YOUR OWN POST in seeking dr! We/I will help you as much as possible over there! Betty *******************************************
When you post or reply, please break up your solid, continuous block text
welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
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we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy.
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I think you will see her resolve quickly. My dd was dx lyme/babs at 4. She had been "treated and cured" for lyme at 2 and a half. She was having huge word-finding and memory problems which quickly went away.
Kids are very resiliant. I don't have other advice, you're already seeing an LLMD. Just think how lucky your kid is that you figured this out now instead of never!
Fight for what she needs at school IEP, etc. Give her the support she needs, she will come through this.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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I would recommend going to the Lime Disease Association and reading up on kids with lyme and school, in addition to the research articles on children with lyme that you can find on the Columbia Research Center site.
Unfortunately, chronic/neurolical lyme is associated with significant drops in scholastic performance.
A visit with a LLMD neurologist is an excellent idea, I wish we had done it with my child a year ago.
My child was diagnosed at age 5, he also had a drop in his school performance (very hard to demonstrate at that age though!!)
He had started to read at age 4, but promptly lost that skill, and is only just starting to get it back.
He reverses almost every letter that he writes, and sometimes reverses things when he reads (am becomes ma, ect).
I tell you this, because the stuff that you described is typical in children with lyme, BUT it is always important to consider that something other than lyme can be going on.
It is best to find these things out, even if it means dealing with a bunch of different specialists.
The LDA site also provides info on going through the 504/IEP process, which you may find invaluable.
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. ![[Frown]](frown.gif)
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