Thursday, October 23, 2008

Please tell me it's not so!

Holden may have Lyme Disease.

We had him tested in Sepetmeber 2007 (shortly after I was diagnosed). My local doctor's office called and said it was negative. I didn't see the test results for myself, I just took their word for it. As time went on I started getting curious to see exactly what the test said. Testing for Lyme Disase is very complicated (as is everything else pertaining to LD!).

In June of this year I went to the dr's office to get a copy of his test. My heart sunk when I saw it. Immediately my eyes were drawn to some positive marks. There were a few positive bands and some IND bands (which is pretty much weak positives). I felt like I had been kicked in the stomach.

After many days of crying and agonizing over the results, me and Matt decided to hold off on treatment. I really think it was denial on my part. I read on the internet that if a child wasn't showing symptoms, don't treat. Holden really wasn't showing any symptoms, however there were a few things I was worried about.

In the last few months I have been critiquing everything that Holden says and does. Everytime he would say "I'm tired" my stomach would knot up. Even if we had just been to the park and a million other places and he had every right to be tired. Anytime any little thing would happen I would wonder 'Is that a Lyme Disease symptom?' It seems like there are so many symptoms. Holden had a few of the little symptoms (like ears turning red and excessive thirst- though that might be hereditary since Matt and my neice are the same way). I tried to tell myself that those symptoms could be a coincidence. He still really wasn't showing the 2 main symptoms of LD (fatigue and pain).

So fast forward to Monday. I had a an appointment with my doctor. I brought up Holden during my appointment. My doctor was adament that we treat Holden. I was shocked. In August when I had mentioned Holden he said keeping an eye on him and treating if any symptoms arise would be okay. However he had recently attended a conference about children and Lyme. He brought up a good point that I just couldn't deny. If Holden has had Lyme for his whole life he wouldn't be able to tell us that he felt "different" because for him it would normal. That really hit me.

When I left my appointment I felt a little gutted. I felt so much guilt.. soo sooo soo much guilt. Why didn't I start treating him earlier? Why did I wait? What if I caused Holden damage by not getting him treated sooner?

I still don't know what to think. Honestly I don't know if he has Lyme. My gut says he probably does and that makes me feel sick. It's almost too much to handle.

On the 5 hour car ride home I read a book my doctor gave me about children and Lyme. A few things struck me. It said 27% of children with Lyme have speech delays. It also said children with Lyme will sometimes repeat questions instead of answering them. It's like they can't distinguish that it's a question. Holden does this.:-(

I made an appointment for Holden on Monday. It wasn't an easy task to find a good llmd (Lyme literate md) that would treat kids. He's 10 hours away in Missouri.

They couldn't fit him in until December 16th. That brings me a lot of anxiety. It seems like such a long time to wait.

In the meantime I feel like I'm in a nightmare. I am so scared for Holden. Even though he's not displaying any bad Lyme symptoms, I don't know what's going on in his little body, and the unknown scares me.

I just want this to all go away.

I keep praying that if Holden does have Lyme Disease that God will take it away from him and put it in my body. I don't care if I'm sicker as long as Holden is okay.


Corey~living and loving said...

oh Lauren. This post made me so sad for you and your worries, and fears....and suffering. So many hugs from me to you. I know it isn't enough....but I hope it helps to know I'm thinking of you.

Renee said...

Hello Lauren
I received your blog on my Google Alert for Lyme ~ just read your post about your son. You are in my thoughts and prayers this day. I have had lyme for 24 yrs ~ only diagnosed in June of 2007. So many complications now with it, but also, like you hoping to improve and have more quality of life.
May you and your son be healed of this awful disease!

Vic said...

My prayers are with you and your family. I can only say best of luck with your treatment now and continue to look forward into your gains. I pray he will soon come out of this unscathed with a wonderful pain free childhood. I have had Lyme since I was 15.

wheelchairs : Manish Steel Works said...

I really appreciate your post and you explain each and every point very well.Thanks for sharing this information.And I’ll love to read your next post too.

J said...

Sorry to hear that you have this disease.

I found this article to be helpful.

Val said...

Hi, I've just been diagnosed with Lyme Disease. I was diagnosed with Guillain Barre Syndrome at the end of 2010 but I could've been falsely diagnosed and just been dealing with Lyme the whole time. It's soooooo complicated...but I made a new blog where I'll be talking about it and stuff so follow me if you'd like.:)

Advin Charles said...

This is knowledge full post. Lyme disease is an infection that is spread by ticks.

Lyme disease

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