College Age Lyme Kids

[Guest guest]

Elaina:

I understand what you are saying about college choices. The reality is that

there needs to be a backup plan in case they need to be close to home. It is so

sad. My senior son has started treatment for Lyme. We are hopeful that he will

be done with treatment by August and his first year of college. If not, he

applied to a college 20 minutes away just in case. It doesn't help that our Lyme

doc is a 5 hour drive. His first choice school would make that a 7 hour drive.

Today he took the ACT again in hopes of a better score (please be a 30) but took

it on doxy. So far he hasn't had a major herx.

Tomorrow we travel to our appointment which is on Monday. The three of us will

have lab work done and get updates in the treatment plan.

Anyone from Ohio who has done the alternative assessment for the OGT? I need to

let the intervention specialist for my younger son know my decision by Tuesday.

I just don't know what to do. He is sophomore. By February he might be able to

sit for the test but with frequent breaks if the IV antibiotics do their job.

Have a good weekend,

Kari

[Guest guest]

Its been a long couple of weeks.my daughter has been having lots of issues

with muscle pain and fatigue.

She has been being treated for about five years..treating one thing and then

off to the next co-infection and then KPU.

Through all of this she has remained pretty positive.last night she had a

melt down. she is just so tired of all

The tests and medicine and her life being centered around her illness. In

May she graduates and her friends

all go off to college and she is not sure what is in store for her. She is

so bright and such a beautiful person.Its just so

wrong that our children are having to go thru this.

I am trying to muster up the energy I need to keep my daughter positive. I

Have had lyme for over 20 years and manage

to keep my immune system up enough to function and get the Things done on

the window of opportunity I have.

I hope your sons are doing better..how long have they had it..it must be

hard having 2 children being treated for it.it is so costly

And such a roller coaster ride.not the fun kind.

Many blessing to you and your family

Elaina

_____

From:

[mailto: ] On Behalf Of endomr

Sent: Saturday, October 23, 2010 1:10 PM

Subject: [ ] College Age Lyme Kids

Elaina:

I understand what you are saying about college choices. The reality is that

there needs to be a backup plan in case they need to be close to home. It is

so sad. My senior son has started treatment for Lyme. We are hopeful that he

will be done with treatment by August and his first year of college. If not,

he applied to a college 20 minutes away just in case. It doesn't help that

our Lyme doc is a 5 hour drive. His first choice school would make that a 7

hour drive. Today he took the ACT again in hopes of a better score (please

be a 30) but took it on doxy. So far he hasn't had a major herx.

Tomorrow we travel to our appointment which is on Monday. The three of us

will have lab work done and get updates in the treatment plan.

Anyone from Ohio who has done the alternative assessment for the OGT? I need

to let the intervention specialist for my younger son know my decision by

Tuesday. I just don't know what to do. He is sophomore. By February he might

be able to sit for the test but with frequent breaks if the IV antibiotics

do their job.

Have a good weekend,

Kari

[Guest guest]

Oh I am so sorry for what you two are going through.... My 15 year old has been

breaking down BAD for the last couple of weeks - so many dreams they want and

can & #39;t have right now....I am sick also along with my 11 & 7 year old....and

my husband is no support.....so I am the rock....and it & #39;s hard to be in this

spot all the time.....my prayers go out to you and your daughter...Diane.

[Guest guest]

This sounds so familiar, my heart hurts for you and your daughter.

Our situation is much the same. My HS senior has been sick for a year. We

finally got our diagnosis of Lyme as well as multiple coinfections. She has been

doing her treatment for 2 months and is so sick! Muscle aches and spasms, severe

nausea, dizziness, migranes, rapid weight loss, isolation, depression I could

go on and on. The doctor warned us it would get worse before it got better but

we had no idea!

She is now unable to go to school, fortunately the school is being cooperative.

She has been given an IEP and is now on home and hospital which means she works

from home on a modified curriculum with the help of a tutor. This is all good

but meanwhile she is completely isolated from her peers. Her sense of isolation

and her sense of loss is so hard to take. She too is feeling lost about her

future, her peers are all planning their future and moving forward with their

lives. She just feels lost and is wondering what her future holds.

I want to offer her hope but the more I read the more concerned I am. There

does not seem to be an end. I worry her Dr. May be giving her false hope as she

thinks she will de done in 6 months to a year. This seems highly unlikely. The

whole insurance financial thing is nuts, we are struggling to handle the bills,

I cannot imagine doing this with multiple kids having Lyme or myself!

Sorry for the vent, just needed to connect with someone who gets it!

Keep moving forward!

Sent from my iPad

On Nov 28, 2010, at 5:54 PM, " Elaina " <lagassie@...> wrote:

> Its been a long couple of weeks.my daughter has been having lots of issues

> with muscle pain and fatigue.

>

> She has been being treated for about five years..treating one thing and then

> off to the next co-infection and then KPU.

>

> Through all of this she has remained pretty positive.last night she had a

> melt down. she is just so tired of all

>

> The tests and medicine and her life being centered around her illness. In

> May she graduates and her friends

>

> all go off to college and she is not sure what is in store for her. She is

> so bright and such a beautiful person.Its just so

>

> wrong that our children are having to go thru this.

>

> I am trying to muster up the energy I need to keep my daughter positive. I

> Have had lyme for over 20 years and manage

>

> to keep my immune system up enough to function and get the Things done on

> the window of opportunity I have.

>

> I hope your sons are doing better..how long have they had it..it must be

> hard having 2 children being treated for it.it is so costly

>

> And such a roller coaster ride.not the fun kind.

>

> Many blessing to you and your family

>

> Elaina

>

> _____

>

> From:

> [mailto: ] On Behalf Of endomr

> Sent: Saturday, October 23, 2010 1:10 PM

>

> Subject: [ ] College Age Lyme Kids

>

> Elaina:

> I understand what you are saying about college choices. The reality is that

> there needs to be a backup plan in case they need to be close to home. It is

> so sad. My senior son has started treatment for Lyme. We are hopeful that he

> will be done with treatment by August and his first year of college. If not,

> he applied to a college 20 minutes away just in case. It doesn't help that

> our Lyme doc is a 5 hour drive. His first choice school would make that a 7

> hour drive. Today he took the ACT again in hopes of a better score (please

> be a 30) but took it on doxy. So far he hasn't had a major herx.

> Tomorrow we travel to our appointment which is on Monday. The three of us

> will have lab work done and get updates in the treatment plan.

> Anyone from Ohio who has done the alternative assessment for the OGT? I need

> to let the intervention specialist for my younger son know my decision by

> Tuesday. I just don't know what to do. He is sophomore. By February he might

> be able to sit for the test but with frequent breaks if the IV antibiotics

> do their job.

> Have a good weekend,

> Kari

>

>

[Guest guest]

I forgot how long I go this post was until I read that k was taking his ACT-

well, he got a 30 and accepted to 2 colleges since then. How wonderful and how

scary. He is doing well with his Lyme treatment. In fact too well that I wonder

what is getting killed.

Nate is on week 5 of IV antibiotics and perking up. He had a bummer Thanksgiving

with an ER visit and then a PICC line replacement due to a crack. No fun at all!

He is passing 3 of his 4 online classes. My husband works from home now and they

have a routine so Nate doesn't feel so isolated. He meets his friends online to

video game. They laugh and joke and destroy and he never has to leave the house.

After 3 years of illness he is more accepting that this is what has to happen to

get better. The constant pain and nausea or gone mostly- that was the worst to

deal with. Once that lifted, his mood improved.

There are some very strong amazing women on this forum. When people ask how I do

it, I say I honestly don't have a choice. You go day by day and this is what

needs to be done right now so you do it. I've lowered all expectation like I

don't plan to Christmas shop much this year, I don't plan to go to the movies. I

don't meet too many friends any more. I do plan fun little things at home for

us. It is a time in my life where I give everything to wellness and nothing else

matters. Really.

How many more families are out there like mine and yours?

Thinking of you,

Kari in Ohio

[Guest guest]

I felt I had to chime in as a success story on college age kids with

Lyme and tell you not to give up hope! My daughter has been ill since

age 3 and never was able to attend a full day of school. She was only

able to manage 3 classes her senior year and I didn't know how she could

manage college, but we decided to talk to schools and see what they had

to offer. She visited 4 colleges wanting to work with horses. But we

could see that these programs were too far away, offered little in job

potential and were to rigorous for her. We steered her to a Vet Tech

program instead with the idea that she could use it to work with horses

still. We found a small private college 45 min. from our house with a

wonderful Veterinary Technology program and a wonderful staff. From

admissions to advisors everyone worked with us to make this work. They

offered fantastic scholarships and grants that put the cost about half

of what was stated, and they extended them over 4 years for the 2 year

program. We got in writing that she would not be penalized if she needed

to take a leave of absence, had to drop to part time, or needed extended

absences. She was granted a medical single room in a dorm right next to

her classes. The campus is incredibly small with only 5 buildings total.

It is about 3 min. from one side to the other. We talked to disability

services and she was granted the things that she needed to succeed.

She has taken the 2 year program over 3 years and added some

requirements over the breaks. She has priority registration and tries to

choose classes later in the day, and to block them so that she has the

needed breaks to rest. Her social life resolves around studying with

friends, but she is doing it. She HAS friends and is succeeding in school.

When she is sick, she can call me and I can be there in less than an

hour. I can bring her home and have her back the next day for classes or

whenever she is well enough to return. Her teachers have been very

understanding. I never thought she would be as successful as she has

been. It is still a struggle and I still worry about her all the time,

but she is doing it. We pray alot, and though she is away from home, I

still oversee all the meds and pillcases and appts. It would not work as

well if she was going farther away from us. I just feel blessed because

she has been able to be a normal kid and have an experience that I never

thought she would be able to have and enjoy. I am so glad that others

encouraged me to not give up on this dream without giving it a try.

College can be a reality, even for sick kids, if you plan plan and pray.

Good luck to all your children and may good health find them all soon.

hugs,

Z

[Guest guest]

Thank you for your story.  I'm happy things worked out for her.

________________________________

From: Faces <faces@...>

Sent: Mon, November 29, 2010 10:58:59 AM

Subject: Re: [ ] Re: College Age Lyme Kids

 

I felt I had to chime in as a success story on college age kids with

Lyme and tell you not to give up hope! My daughter has been ill since

age 3 and never was able to attend a full day of school. She was only

able to manage 3 classes her senior year and I didn't know how she could

manage college, but we decided to talk to schools and see what they had

to offer. She visited 4 colleges wanting to work with horses. But we

could see that these programs were too far away, offered little in job

potential and were to rigorous for her. We steered her to a Vet Tech

program instead with the idea that she could use it to work with horses

still. We found a small private college 45 min. from our house with a

wonderful Veterinary Technology program and a wonderful staff. From

admissions to advisors everyone worked with us to make this work. They

offered fantastic scholarships and grants that put the cost about half

of what was stated, and they extended them over 4 years for the 2 year

program. We got in writing that she would not be penalized if she needed

to take a leave of absence, had to drop to part time, or needed extended

absences. She was granted a medical single room in a dorm right next to

her classes. The campus is incredibly small with only 5 buildings total.

It is about 3 min. from one side to the other. We talked to disability

services and she was granted the things that she needed to succeed.

She has taken the 2 year program over 3 years and added some

requirements over the breaks. She has priority registration and tries to

choose classes later in the day, and to block them so that she has the

needed breaks to rest. Her social life resolves around studying with

friends, but she is doing it. She HAS friends and is succeeding in school.

When she is sick, she can call me and I can be there in less than an

hour. I can bring her home and have her back the next day for classes or

whenever she is well enough to return. Her teachers have been very

understanding. I never thought she would be as successful as she has

been. It is still a struggle and I still worry about her all the time,

but she is doing it. We pray alot, and though she is away from home, I

still oversee all the meds and pillcases and appts. It would not work as

well if she was going farther away from us. I just feel blessed because

she has been able to be a normal kid and have an experience that I never

thought she would be able to have and enjoy. I am so glad that others

encouraged me to not give up on this dream without giving it a try.

College can be a reality, even for sick kids, if you plan plan and pray.

Good luck to all your children and may good health find them all soon.

hugs,

Z