Lyme Disease Support Group

my 14 yr old son has lyme diease. i went to the doctor when he had a rash and headaches, he said it was just a bug bite. two weeks later he started getting fevers and the doc thought it was nothing. we brought him to the er he had 100% heart block and they knew right away he had lyme diease. he was in the hospital in the ICU unit for 8 days then the heart meds started to work and 3 days in a regular room. He fianlly came home with a picc line. and as sick as he still is, i am totaly losing my mind with all the stress. then after all that my job laid me off as if i hav'nt had enough. i can't wait for him to be better, i hate to do the IV everyday, I am scard something will happen. I just can't beleave how a tick can harm some one so bad

I'm sorry to hear about your son. There is a TON of stress that a chronic illness puts on a family. Not only the person who is sick, but the entire family. I know it's taken us to get where we are as a family.

I hope you find this a site that you can come to and talk and find help and inspiration. Post in the general forum , lots of action there.

If there's anything I can do to help, please pm me and let me know.

warmest regards,

jaime

Joan,

This is going to be a really rough road. But as his mom you have to learn to cope with the stress. Not that it is easy, but he will need you and your strength. Connecting with others is a great start. There are so many here who have been through the gauntlet. His road has started rough, but you now have him on the right path. So now it is time for you to accumulate the knowledge that you are going to need in order to secure he gets the health care that he needs.

It is vital, that you take charge of what is going on. Keep all the records you can. Document his progress. And read. There is so much misinformation, and this can be such a struggle - getting those in the medical community to listen and do something.

I am not trying to scare you - rather help you prepare. He can live a pretty normal life, but you and he have to fight for it.

Find comfort that you have come to a place where there are people who are here for you and your son. You can and will get through this.

Dont forget about you. As mom's we tend to put our kids first, and we will sacrafise our health and happiness in order to do all that we can to help them. You are important to - never forget that. You will best be his support if you are healthy. Find an outlet for your stress and emotions.

Get comfortable here, and relax and breathe, you both will be ok.

Warmth,

Christine

When I hear a child is so sick with an illiness they may have, it breakes my heart in two...I'm sorry your son is having to deal with lyme, its hard enough on an adult let alone a young child.

If you can find a support group in your area that is also dealing with sick children that might help. Venting always seems to take a little stress off the person that is trying to cope with an ill person.

My thought are with you and your son.

Julie

Jump Joan,

I know its hard to believe but i can see some positive things already in your report of your sons Lyme disease.Heres the big one, You got laid off work.. in a way maybe there is some other power behind this you get to stay home with him and monitor everything thats going on and that is a huge bonus a 14 yr old may feel very scared being alone while the rest of the world is humming outside.Plus i think since he is 14 his immune system should be supercharged like most teenagers and he may be better equipped than a adult to start healing.I know one thing if i was 14 i would be soo happy if Mom was home to offer all the support required, so in a way a job lay off can be a very good thing, do you agree?

Hi,I new alittle about Lyme even b4 i got sick,a Very close cousin of mine got Lyme when she was 8 yrs old,I was young and remember she was hit pretty hard,She was in the hosp, for over a month,And then home schooled 4 two years.I was on the phone with her last nite,and told me she was on abx 4 ten years i didnt no that,S he is now 28 and is married with 3 kids.She is doing great,She still gets little thing here and there,I do remember 4 a long time she couldnt come and play,we would go domn the block thats were she lived every day 2 see here.And thats how i found my llmd,My aunt remembered the doc name thank god,it took her like a wk,lol,But she was one of the first children in Brooklyn to get Lyme,It was a long road,I even remember my uncle took a train with her blood in a cooler to Conn,Because back then no one new nothing about Lyme,Being that Dr,V was treating her my cousin was ok,Does ur son see a LLMD??

Joan,

I am sorry to hear about your son...I am 23 years old and I got Lyme when I was 8 years old...I went through 10 years of different diagnosis's, through 3 picc lines, dozens of oral medications, and have been through it all in the past 15 years...the most I remember is my mom sticking with me and being there through it all...when I wanted to give up, she never let me...and I'll always be greatful to her for that...but at the same time you must remember your son doesn't want to be reminded that he has a disease all the time...my mom made excuses for me because I was sick and for once I just wanted her to get mad at me because I was a kid and I was doing something wrong...not make excuses for me because i was sick. To this day, my mom is alaways coming and asking how I'm feeling, or why I'm holding my stomach or some other question related to my health...once you get through the worst part, just remember to talk to your son like a son, not a patient, cuz no matter how he's feeling, he's going to want you there as a mother, not his nurse...that's the best thing you can do for him, if no one else will treat him normal, at least you can...I don't know if this helps at all, but as soon as I saw your post I thought maybe I could pass on a little of my experience to help your son...I don't have the mother's point of view, but I do have the kids point, and I think they are both very important. If either of you ever need anyone to talk to just let me know

Sincerly,

Julia