Survivor guilt?

[cobbiemommy]

Just finished reading my copy of the Autism File-a British magazine that deals with all things Autistic. I am so depressed for many of these people; they are no closer to a cure or treatment for their dear child than we were four years ago.

 

DS, is making steady improvements on Rifampin and Tetracycline. His rash is slowly healing. His moodiness and aggressiveness are decreasing at a steady pace. We have the prescription in hand for the Bactrim and Tinidazole for the Babesia. There is definite hope for him and for us.

 

We have struggled for eight years with this cunning disease. We researched and tried lots of doctors, supplements and many blood tests. We spent a small fortune and traveled the country twice to get the right answers. My problem is that I feel guilty that he will eventually get completely better and many children will not because they are not properly diagnosed. Does that make any sense????

 

How does anyone else channel these feelings into something productive? I want to go forward and be positive and not look back or feel guilty!

 

Cobbie

[LNN]

For starters, you can post on forums and hound people with talk about pitands and lyme

You try to pay it forward however you can - and always, always be thankful!

[kferricks]

Yes, you can definately be a voice of HOPE! I'm sure you have learned so much in the years that you could help ppl by telling them your experiences, share what you know. That is epic in itself!

[Iowadawn]

Just finished reading my copy of the Autism File-a British magazine that deals with all things Autistic. I am so depressed for many of these people; they are no closer to a cure or treatment for their dear child than we were four years ago.

 

DS, is making steady improvements on Rifampin and Tetracycline. His rash is slowly healing. His moodiness and aggressiveness are decreasing at a steady pace. We have the prescription in hand for the Bactrim and Tinidazole for the Babesia. There is definite hope for him and for us.

 

We have struggled for eight years with this cunning disease. We researched and tried lots of doctors, supplements and many blood tests. We spent a small fortune and traveled the country twice to get the right answers. My problem is that I feel guilty that he will eventually get completely better and many children will not because they are not properly diagnosed. Does that make any sense????

 

How does anyone else channel these feelings into something productive? I want to go forward and be positive and not look back or feel guilty!

 

Cobbie

Cobbie-

 

How many years after dx did it take to see improvement? Keep encouraging. Your journey HAS helped others.

 

Iowadawn

[Suzan]

I am so happy about how well your son is doing!! I can totally relate to what you are saying about survivors guilt. I think the suggestions so far about helping others and spreading the word is great. That's what we need, spreading the word! Also, staying in touch with your local autism orginazations, volunteering, hleping the parents, that would help then and give you an opportunity to tell your story. I know you will find the perfect way!

 

Susan