Accuracy in finding beginning of lyme can mean receiving appropriate treatment, right? Thanks in advance.

After doing a little reading about Neuropsych problems in children, I started to consider the fact that my daughter has had migraines and daily headaches since she was 7.

Could her lyme date back that far?

We thought the headaches were stress related, docs couldn't help us, tell us what was wrong. She also had nausea.

Her 1st grade teacher was strict (my daughter still liked her), but my daughter also had a strict kindergarten teacher, no problems before.

My daughter did well "grade wise" in 1st grade despite her pain and nausea.

The teacher (also a type A) believed it was my daughter's type A personality that was causing stress, the need to do everything perfectly.

She wasn't able to organize things and get her papers turned in on time.

She was also diagnosed with TMJ that year and had to wear a guard, even by day in the classroom to avoid grinding.

The teacher felt that she was trying too hard to have perfect handwriting (It "was" beautiful "then".) That yr she did quite well in reading. She read 100+ pg chapter books by yrs. end.

She played in high grass at recess every day. I've been wondering if she picked up a tick there. I wasn't putting insect repellent on her before school.

By 2nd grade I requested a more laid back teacher. My daughter's anxiety lifted and she did better emotionally, however her reading skills started to drop a little.

She was no longer in the top reading group. Okay, every kid can waver a bit, but she had begun adding words into her reading and shuffeling words around a bit.

Her accuracy was really off and this effected her fluency, her reading was choppy. Her self-confidence plummetted.

She still had headaches and finally a low dose of an anti-depressant, Celexa, was given towards the end of that yr to control them. She took Zomig for the migraines as needed.

3rd grade she got lucky, same sweet teacher again. My daughter still was having trouble with her reading and really not enjoying reading at all by now.

Mind you the headaches had calmed down a lot. She rarely had them. She also had a bladder infection at the end of that yr and bladder spasms (can be a symptom of lyme). (She's already had ureter re-implant when she was 7 for congenital kidney reflux.)

Summer before 4th grade we decided to step her down off the Celexa and she had 6-8 wks of no headaches after. Then the 1st day of school she had a migraine.

She had a weird ring rash that I thought was ringworm in September.

Then she had viruses Oct. 4th and Oct 15th with a stiff neck, upper back pain, headaches (of course), torso rash, fever, achy, lethargy, sore throat (we have been believing that was her post infection virus).

Everything went downhill from there, headaches, tummy, emotional (couldn't stand her teacher yelling at the other kids and she wasn't the one in trouble-can't say as I blame her there), achiness (I was camped out at school giving her tummy/pain meds).

After Christmas we started homeschooling (it's what she wanted, she was miserable) then she got sicker, more emotional, arthritis, headaches, general malaise, pale, I cannot stress etc... enough...

Many of you know the testing/docs that she has endured since last yr.

Thanks Durameter, bettyg and treepatrol for pointing to the Neuropsych website. Good info. here:
http://www.lymediseaseassociation.org/Tager.

In relation to the possible reduction of IQ, I feel it is important to say that her IQ at the beginning of Kindergarten was in the 120s (exact score was unavailabe today, they are calling me next week with it), which is considered superior.

I would like to have her IQ retested soon just to see if/what the damage has been.

What's your vote? Lyme from the time she was 7 or lyme since last summer?

but yes my vote is with lyme especially with the rash noriceable and the arthritis symptoms afterwards
go to her old school and tell them you suspect a tick infestation in the high grass

As for assessing her neurocognitive deficits, I would recommend calling Rissenberg and asking if she has any colleagues in your area since she is one of the few neurocog folks that is LL. Neurocog testing will give a comprehensive battery of her skills and deficits at this point (and provide her current IQ, having her premorbid IQ will be a BIG help to the person doing the testing). It is a pricey endeavor, but would also help you focus on certain skills to address since you are home schooling.

It is of no value to figure how long she has had Lyme, it will not affect treatment.

Photograph any rash, with a ruler in the photo.

You said: Then she had viruses Oct. 4th and Oct 15th with a stiff neck, upper back pain, headaches (of course), torso rash, fever, achy, lethargy, sore throat (we have been believing that was her post infection virus). How do you know that was a virus-sounds like Lyme to me.

janet

Ouch, Janet, that hurt . You don't know me, but can't you tell I love my daughter? Trust me I don't want things to be harder for her.

I know I don't have the disease, but I hurt emotionally alongside of her when she is in pain.

If lyme were a robe I would wear it for her.

She screams hurtful ugly things at everyone when she is in pain. She puts me and her brothers in tears all the time, but we love her anyway!

There is a post tick bite viral-like illness at the onset of lyme that I have had described to me, that includes a stiff neck in particular, correct? That was what I was speaking of.

Also, her current treatment is 400 mg of amoxicillan (which everyone here says is a weak treatment for the disease) until we get the tests back.

We couldn't get another appt. until July 14th.

My husband and I are concerned that this treatment is too little in any stage of this disease.

The LLNP we see says she's pretty certain that she has lyme, but may always be seronegative, like a lot of people with lyme.

This is why it is my endeavor to uncover anything that will help stage the disease, to get her the good and proper treatment, not a drop in the bucket, like we are getting currently.

We all know the blood tests are not always good with staging lyme.

As a homeschooling mom, I do know that she would probably not recognize the IQ test to be that different than her end of the year testing (which is required, BTW, by our state to operate a homeschool).

IQ testing is not rigorous, by the way. My kids didn't feel afraid. None of my kids have ever feared a test.

We have never set them up to believe that doing the best they can in their current state, wasn't good enough. There are loved unconditionally.

Durameter, thanks for your helpful suggestions. I could substitute IQ testing this yr, as next yr is the 1st yr of proof of required testing, as it will be our 1st full yr of homeschooling.

You were right, it would also aid me in putting her in the correct curriculum for her abilities and not overloading her next year. Thanks.

I am hopeful the proper treatment will also mean a bright future for her. I want to do right by her.