Daughters just diagnosed--questions for those who've been there

[Guest guest]

mine has been a horror story to say the least, but not even half as bad as

some i know.

[Guest guest]

Both of my daughters were just diagnosed with congenital Lyme disease

and Bartonella. The younger one also has Ehrlichiosis and Babesiosis.

Since we are starting a new school year tomorrow, I am interested in

hearing others' experiences who have teens/children with lyme. The older

one is starting college this year and the other is in high school.

This is all so new, and I am still going through die-off myself--brain fog,

fatigue, dizziness, not sleeping at night, etc., etc. I was wondering

what all I should be discussing with their teachers and counselors.

Perfumes, colognes, and cleaning product smells are big triggers for

their migraine headaches and it is very difficult to learn anything or perform

well on a test when you are suffering from a migraine. I know how awful I

feel from die-off and I can't imagine having to go through it and keep up

with studies at the same time. I expect they will miss more school than

they ever have in the past when they start antibiotics due to die-off

symptoms. The older one must attend class a set number of days to

keep her scholarships.

I would appreciate any advice, hints, tips to get us through this time and

to get cooperation from their schools. (One thing I know I will be asking

for my younger daughter is that she be seated near the chalk board. She

has difficulty seeing even though the ophthalmologist says she has

perfect vision.)

Thanks,

Phyllis

[Guest guest]

Phyliss who is your llmd......I would be very interested as we are treating

both of my boys for congenital lyme they are 51/2 and 7 and would love to

hear what you are doing as a family with lyme........

Hugs

Amy

[Guest guest]

I can tell you that as a Lyme family ourselves, with a Son who is

starting HS next week and will be 14 next month, that we all see a

LLMD. We're in Mich.

I am requesting (correctly, this time) a 504 Plan along with an IEP

for . Last year, he needed a Studies Skills class (a class that

provided time to do school work with a Teacher there) along with a

Tutor to keep himself up on Algebra. The Counselors and Teachers

agreed. Also, he didn't get the rest he needed to get better as I

did, being a SAHM. This time I'm requesting either that he can go

take a rest/nap as needed while at School or else a later arrival in

the AM with the school providing the transportation. We know he has

sleep problems and doesn't get quality sleep. Seeing now about

getting sleep studies done. I'm also requesting a set of books for at

home for two reasons...one so that he has them if needed when stays

home and secondly they're just too big and heavy on his neck (which

is always painful) to carry around in a backpack.

Hope any of this helps. Btw, Pat of the LDA has wonderful info

on children and school issues in regards to the ADA.

Sal

> Phyliss who is your llmd......I would be very interested as we are

treating

> both of my boys for congenital lyme they are 51/2 and 7 and would

love to

> hear what you are doing as a family with lyme........

>

> Hugs

> Amy

>

>

[Guest guest]

Phyllis,

Write to Pat of the LDA, Inc. She has done wonders in NJ in

getting information to the schools for children who suffer from tick borne

diseases. If you live in another state she can send you the information you

need.

LYMELITER@...

Good luck,

Marta

----- Original Message -----

From: " lpskvin " <lpskvin@...>

> Both of my daughters were just diagnosed with congenital Lyme disease

> and Bartonella. The younger one also has Ehrlichiosis and Babesiosis.

> Since we are starting a new school year tomorrow, I am interested in

> hearing others' experiences who have teens/children with lyme. The older

> one is starting college this year and the other is in high school.

[Guest guest]

Thanks to all of you for the great info. I spoke with my daughter's

counselor last week and he mentioned the 504 plan. I used to teach

before getting so sick with lyme, but I had never heard of this plan.

I am supposed to go back and visit with one of the vice principals about

it. I am definitely going to write Pat and get her information

before I talk with the school. Thanks so much!

Hugs,

Phyllis

[Guest guest]

Kim I found it interesting that your son at age 5 shows signs........my boys

are almost 6 and 71/2 and neither of them showed alot of signs until close to

age 5......wonder if that is a dreaded lyme number or something......would be

interesting to see.....

good luck and hugs to you

Amy

In a message dated 8/21/01 10:32:05 PM Eastern Daylight Time,

kimsak2000@... writes:

> Hi,

> I'm In process of doing PCR-DNA Lyme testing on both

> of my boys, for fear of congenital lyme. They are 3

> & 5. My 5 year old has symptoms & I would not be

> supprised if he has it, I hope he doesnt of corse.

> I'm checking my 3 year old out to just be on the safe

> side because I know that it doesnt always show up

> until later. I would be interested in any

> suggestions. My 5 year old already gets speach

> theropy & ocupational theropy for his muscle weakness.

> Take care, Kim S.

>

>

>

[Guest guest]

I would be very interested as we are treating

both of my boys for congenital lyme they are 51/2 and

7 and would love to hear what you are doing as a family

with lyme........

Hugs

Amy

Amy,

So far, we are all on abx. I am on Biaxin and the girls are on

Doxycycline. I take a lot of supplements which I have done for

many years prior to the lyme diagnosis. I am starting them

on some of the supplements, too.

Phyllis

[Guest guest]

Hi,

I'm In process of doing PCR-DNA Lyme testing on both

of my boys, for fear of congenital lyme. They are 3

& 5. My 5 year old has symptoms & I would not be

supprised if he has it, I hope he doesnt of corse.

I'm checking my 3 year old out to just be on the safe

side because I know that it doesnt always show up

until later. I would be interested in any

suggestions. My 5 year old already gets speach

theropy & ocupational theropy for his muscle weakness.

Take care, Kim S.

--- lpskvin <lpskvin@...> wrote:

> I would be very interested as we are treating

> both of my boys for congenital lyme they are 51/2

> and

> 7 and would love to hear what you are doing as a

> family

> with lyme........

>

> Hugs

> Amy

>

>

__________________________________________________

[Guest guest]

In a message dated 8/21/01 9:45:37 PM, A1M1BISHOP@... writes:

<< I would be interested in any

> suggestions. My 5 year old already gets speach

> theropy & ocupational theropy for his muscle weakness.

> Take care, Kim S. >>

Kim-

My 6 yr old is being treated.....liquid zithromax just 1tsp @ dinnertime. He

is doing GREAT!!! I give him chewable acidopholius, strawberry flavor too.

What a difference, have been doing it for about 3 mos now.

sue in nj

[Guest guest]

-- Sue ,,

Where did you find the chewable

acidodopholius?? Do they carry it at GNC??

((hugs))

Samm

- In @y..., Ssadlermas@a... wrote:

>

> In a message dated 8/21/01 9:45:37 PM, A1M1BISHOP@A... writes:

>

> << I would be interested in any

> > suggestions. My 5 year old already gets speach

> > theropy & ocupational theropy for his muscle weakness.

> > Take care, Kim S. >>

>

> Kim-

> My 6 yr old is being treated.....liquid zithromax just 1tsp @

dinnertime. He

> is doing GREAT!!! I give him chewable acidopholius, strawberry

flavor too.

> What a difference, have been doing it for about 3 mos now.

> sue in nj

[Guest guest]

Sue, thanks for the reply. Where did you find the

liquid acidopholius? Thats great for kids. I just

had their first PCR tests done today.

Oh, can you please send any replies to

kimsak2000@... . I have stopped having

lyme-aide in my email, because my mom is very ill in

the Hosp.She was just diagnosed with Acute Myloid

Luekeimia. and I wont be able to keep up. I will try

to check at the site but probably wont have time for

that either. I will change to have messages sent to my

email again when things calm down. Thanks, Kim S.

--- Ssadlermas@... wrote:

>

> In a message dated 8/21/01 9:45:37 PM,

> A1M1BISHOP@... writes:

>

> << I would be interested in any

> > suggestions. My 5 year old already gets speach

> > theropy & ocupational theropy for his muscle

> weakness.

> > Take care, Kim S. >>

>

> Kim-

> My 6 yr old is being treated.....liquid zithromax

> just 1tsp @ dinnertime. He

> is doing GREAT!!! I give him chewable acidopholius,

> strawberry flavor too.

> What a difference, have been doing it for about 3

> mos now.

> sue in nj

>

=====

Take care and have a nice day !!! Kim S. kimsak2000@...

__________________________________________________