My son is 6 years old. He has recently been diagnosed with Lyme Disease 2 years after a tick bite. He has been on Zithromax and Amoxicillian for almost a month. There has been a couple days i have seen improvement, but a lot of bad days as well.
I was just wondering how parents with children with lyme handle public school?
My son started 1st grade last week, he has a lot of problems mostly with his cognitive functions. It is hard for him to understand simple instructions and gets confused very easily. Another problem is he doesn't socialize very well with other children. He gets down on himself when the kids won't play with him.
Has anyone been in this situation? and what information should i be sharing with the school?
Posts: 28 | From nh | Registered: Jul 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
HI jeaton183:
We believe our now 10 yr. daughter, starting 5th grade was bitten labor day weekend 2009.
It took 8 months, 8 MD's, 3 childrens hosipitals, etc before we saw Dr. J last May and started treatment. Mepron, Zithromax for co infection babesia.
She basically missed all of last year and we tried 1/2 days. Ended up having a tutor.
Now this year while she is a little better (this thursday will be 4 months on Meds) she only made it one day last week and then was totally exhausted for the next day.
On tutoring with the exhaustion it can be difficult to focus.
Also, her math ability, she can't do today what she could do two years ago. Its the lyme.
Are you seeing a LLMD? Have co infections been ruled out?
The isolation is an issue but at least one of my daughters friends has stayed with her. Depression from the lack of friends since they can't do what normal kids do is an issue. Also the mepron has side effects (as well as the zith).
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
hello t9im: I think the most difficult part for him is trying to be "normal". He doesn't know how to interact with people anymore or how to have conversation. Part of me wants to take him out of school to protect him but i know the schools are funded to help in situations like this.
All his testing for co infection came back negative. so i was happy about that.
how long after treatment started did you notice improvements?
posted
Definitley important to inquire about a 504 plan at school. It requires the school and district to make the provisions necessary for him to be as successful as possible. Things like, being able to lie down if he feels too sick or tired, placement in class etc. Good luck, I hope he feels better soon.
Posts: 219 | From pacific nw | Registered: Jun 2009
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi jeaton183:
My daughter also tested negative for co infections BUT has babesia. She had all the symptoms.
One of the many problems with these tick borne infections is they have a high frequency to produce false negatives on tests.
Well we are 4 months in and while she seems to have better days (her daily fevers seemed to break around the end of week 6 they would run to 100.5 to 101.5 from Jan - beginning of July).
I say seem as she had a bad herx at the end of last month and she's been feeling awful most days.
Of course we've been attacking the babesia and not the lyme.
I thought in my reading of Dr. B's guidelines due to the ph level in cells the Zithromax is not the best lyme treatment (unless pulsed IV).
At 6 one has to worry about teeth.
It is difficult to send my daughter to school (1/2 days) when she feels miserable.
Just remember your son is sick and it is not in his head. Don't let the MD's convince you otherwise becasue they don't believe in long term lyme.
We did get our daughter on a 504 plan last year and I think the vice principal is a gate keeper which I will have to open again this year. Note this is a Federal entitlement program and they have to put you on it but you may have to assert your rights.
After her now missing 3 of the first 4 days we'll start the tudor up again.
Unfortunately I'm thinking it is going to be longer than I was hoping from a treatment standpoint.
I believe Dr. J's patients average 3 years and most of his patients have been infected at least 2 years b/4 they discover / see him.
Hope this helps.
Tim
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi jeaton:
One other item b/4 my daughter was diagnosed with Lyme due to a sinus infection we did 3 weeks of amoxicillan and then with tick like symptoms we had 3 weeks of doxy.
So a continus 6 weeks on these meds with no appreciable improvement. We then stopped the doxy (as it would have no impact on the babesia) and started the mepron / zith.
It was 6 weeks on the mepron / zith b/4 some symptoms alleviated.
Her Lyme symptoms are still there.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
My son just started at a school that specializes in kids with special needs, but serves the entire state. It is fabulous. My son has Lyme & Co induced ADHD, and here, they help him with that daily. He has PT and OT and Musical therapy every day.
That's how I solved that.
FOr my older son, it was a living nightmare, so we changed schools. He fortunately had a 6 day 102 - 105 fever, which killed more lyme bugs than we could have dreamed about and he is going strong, fitting in, etc.
You have to really work to make school understand, and getting a neuro psych eval to give kids an adhd diagnosis can really help.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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