Re: started antibiotic/herx? 13 year old girl

November 26, 2008

Get used to the sleeping stuff! It happened with my two kids when they were

on and off antibiotics. Seemed like my daughter slept an entire two years

away.

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November 26, 2008

Thanks for the reply - how did you deal with school? Good to know that

this is " normal " for lyme kids -

November 26, 2008

Diane, I am sorry to hear about your daughter. I have two girls ages

15 and 16 and we have just been diagnosed and just started

antibiotics and supplements and they are having alot of symptoms that

are stronger than before or are totally new. They had both

previously been diagnosed with POTS and Chronic Fatigue so the

fatigue was expected, but it is worse. Also their energy level is

gone. If they do try to do something on a good day it is a guarantee

that they will suffer and need to be in bed for the next couple of

days. We have had a terrible time with school (private) and as of

today they are both not in school. If you have not already done so,

please make sure you get with your school as soon as possible before

too much time goes by . We thought our private school was working

with us and by the time we found out it was bad. For one daughter

the stress has been so bad that she is done with school, she started

pulling out her hair. By the time the second child started suffering

I knew that we had to figure out just what was going on. Thats how

we were diagnosed with Lyme. She is hopefully going to start

homebound with our local public school, but it has been since the

second week of this school year and we still do not have a program

and she is already stressing about the missed work.I have been told,

and am hoping that what I have heard is correct and that these

exagerated symptoms are the antibiotics working. Good Luck , --

- In , " dkbmama " <dkbmama@...> wrote:

>

> My daughter started treatment for lyme - the first antibiotic

inflamed

> her IBS so we had to stop treatment - now we started on a different

> antibiotic about 2 1/2 weeks ago and she is only up and moving

around

> for about three days a week - she will sleep with headaches and

cold

> and hot feelings and body aches for about two to three days

straight

> (only up about one hour a day) and then have a good enought day she

can

> go to school and then sleep again for two to three days - has this

ever

> happened to any of your kids? Wondering how long this will go on -

I

> am thinking that her body is healing that is why she is sleeping so

> much - any insight would be helpfull - by the way she has had lyme

> since birth and also has JRA and IBS - as I now know this is all

lyme

> Thanks!!!

> your lymie friend Diane

>

December 4, 2008

Hi Diane,

Sorry I am so late getting to my emails. My daughter was diagnosed with

Lymes this summer and thankfully has not had any further problems since being on

antibiotics. I am disabled though due to a rare bone disease that affected my

skull and had multiple brain surgeries and have nearly died due to a brain stem

herniation. After my surgery for the brain stem herniation I would go though

these cycles we called " crashing " where I would literally sleep for two to three

days at a time. I couldn't stay awake even if I wanted to. I was a

Neurosurgical nurse prior to becoming disabled so I was concerned when I

couldn't stay awake so I called my neurosurgeon and he told me that I was having

these sleeping episodes because my body had so much healing to do. It was a bit

scary at times but they gradually lessened.

I am not saying that this is what is going on with your daughter. First

and foremost call her doctor and speak to him and let him know exactly what is

going on. He needs to know. It isn't uncommon though for people to sleep a lot

when their body has a lot of healing to do. Just make sure to make her drink

when she is awake so she doesn't get dehydrated. First though call her doctor

to make sure that nothing else is going on with her.

I really hope she is ok and is feeling better soon.

Hang in there,

[ ] started antibiotic/herx? 13 year old girl

My daughter started treatment for lyme - the first antibiotic inflamed

her IBS so we had to stop treatment - now we started on a different

antibiotic about 2 1/2 weeks ago and she is only up and moving around

for about three days a week - she will sleep with headaches and cold

and hot feelings and body aches for about two to three days straight

(only up about one hour a day) and then have a good enought day she can

go to school and then sleep again for two to three days - has this ever

happened to any of your kids? Wondering how long this will go on - I

am thinking that her body is healing that is why she is sleeping so

much - any insight would be helpfull - by the way she has had lyme

since birth and also has JRA and IBS - as I now know this is all lyme

Thanks!!!

your lymie friend Diane

December 4, 2008

Diane,

The fatigue is really just a symptom. My daughters were both first

diagnosed with POTS and CFS. It did'nt matter that they have now

been diagnosed with Lyme. The fatigue is real and when they use

their good days to do stuff, its does set them back and the fatigue

hits again. You mentioned school, so I hope you are all over that.

School has been our biggest stresses. These kids are not lazy or

dumb, and when all these symptoms start hitting it is really

difficult to convince the schools that it is not the case. Make sure

you contact whoever you think needs to know about her condition, and

please, do not let them forget it. Keep telling them until you are

sure they understand. We assumed everyone was on board with us and

it all fell apart. If you need to, make a plan with them in case she

can not continue on the normal school path. You would be surprised

at how schools are not proactive at all when it comes to sick

children. They will not guide you the way you think they will, even

if it looks like they are. Believe me, you daughter can suffer

greatly if school falls apart and there is no plan. I have

experienced first hand the psychological affects stress can have on

children. Good Luck and stay strong,

---

In , Rutan <ABUSHRN@...>

wrote:

>

> Hi Diane,

> Sorry I am so late getting to my emails. My daughter was

diagnosed with Lymes this summer and thankfully has not had any

further problems since being on antibiotics. I am disabled though

due to a rare bone disease that affected my skull and had multiple

brain surgeries and have nearly died due to a brain stem herniation.

After my surgery for the brain stem herniation I would go though

these cycles we called " crashing " where I would literally sleep for

two to three days at a time. I couldn't stay awake even if I wanted

to. I was a Neurosurgical nurse prior to becoming disabled so I was

concerned when I couldn't stay awake so I called my neurosurgeon and

he told me that I was having these sleeping episodes because my body

had so much healing to do. It was a bit scary at times but they

gradually lessened.

> I am not saying that this is what is going on with your

daughter. First and foremost call her doctor and speak to him and

let him know exactly what is going on. He needs to know. It isn't

uncommon though for people to sleep a lot when their body has a lot

of healing to do. Just make sure to make her drink when she is awake

so she doesn't get dehydrated. First though call her doctor to make

sure that nothing else is going on with her.

> I really hope she is ok and is feeling better soon.

> Hang in there,

>

> [ ] started antibiotic/herx? 13 year old

girl

>

> My daughter started treatment for lyme - the first antibiotic

inflamed

> her IBS so we had to stop treatment - now we started on a

different

> antibiotic about 2 1/2 weeks ago and she is only up and moving

around

> for about three days a week - she will sleep with headaches and

cold

> and hot feelings and body aches for about two to three days

straight

> (only up about one hour a day) and then have a good enought day

she can

> go to school and then sleep again for two to three days - has

this ever

> happened to any of your kids? Wondering how long this will go on -

I

> am thinking that her body is healing that is why she is sleeping

so

> much - any insight would be helpfull - by the way she has had

lyme

> since birth and also has JRA and IBS - as I now know this is all

lyme

> Thanks!!!

> your lymie friend Diane

>

December 4, 2008

Diane,

Me again. I forgot to say that from a number of mothers that I have

talked to alot of these symptoms may have only started because she

hit puberty, and has Lyme. Also, I was told and again saw first hand

that when the antibiotics are working all of your previous symptoms

get worse, and you can also start having new symptoms (herxing). Its

a mess! My rule these days is that if they are experiencing any of

the Lyme symptoms that you can find on the www.LymePa.org web site, I

am okay with it for now. If they lose consciousness, or start to

show paralysis I will move real fast, but all the others seem to be

the norm. I am assuming you see a LLMD quite frequently, and what I

mean is that I would make a list of all her symptoms to talk to the

doctor about, but would not be surprised when she has some of the

symptons on the list I mentioned. Again, if you are concerned, call

your doctor.