Hello:

How has CAH has affected our lives.

My son is 131/2 now SWCAH, we live in Nova Scotia Canada.  Nic was diagonsed at 10 days old, we had him home for two days.  He started to go into crisis the minute that we arrived home.  He was about 2 hours away from death, so the Dr. in emerg. told me.  He was to remain in hospital till he was 1 month old.  He was very hard to get the meds. right, he always needed max. doses.

The fact that he had CAH and no one had even heard of it, even the local Dr.'s.  You are very isolated, there was no internet then.  We were given one book that had very little info in it.  It was not easy, no one understood what we were dealing with on a daily basis....  I wished that I could have had someone to talk to, like another family.  From the beginning I had asked the Dr. to meet other family's we were dealing with the same isolation that we were.  But that never happened, so we were just on our own.  That was the worst part, even when you told someone what he had, they had no idea what that meant...........

We tried to live like everyone else, but it was tough.  I remember I showed someone a photo of Nic at about 6 months old, and someone made the comment a little young for jewellery isn't he (It was his medic alert bracelet) and my answer was it was not jewellery it was a medic alert bracelet.  It was really none of there buisness, but I felt like I had to defend my self, it really hurt then you try to tell them what it's for and they don't know what CAH is anyway. 

You want to treat him like all other kids, but it's very hard.  We decided that Nic would be our only child.  We did not want to pass CAH on to other children.  It was our choose, every one should make there own decidiont on tho.  Every one has there own reasons for what they do.  Nic was to be our first last and only child.

We love him with all our hearts, and there is no way I would want to be without him.   He is a very special child, he relates really well to adults and children.  He has always liked his endo. he has had the same one since 10 days old.  I believe that CAH has made him even more special......  But it still is hard, your always watching them to be sure that they are okay.  The normal childhood illness's are not that with these CAH kids.  Nic was a very sick baby, ear linfections, asthma, flu, colds and just every day illnesss.  He has spend many days and nights in the hospital, so it is not a normal life.  We have always been very open with Nic, we tell him as much as we think he can handle.  We have always been very open about CAH we have always made him understand that he is special, we did not want him to feel different.  But he had to know that he has issues about his health that he must be aware of.  Mostly this has been okay, but sometimes he says he just wants to be like everyone else........  The teens are   going to be harder, because they always want to fit in.......  He has many friends, and is a very respectful child, he know's that no matter what that we always love him.

I think the fact that he has meet other people with CAH it has made things better for him.  Because they totally understand the pills, the injection, and of course all the tests.  I think that they all should have someone to talk to, who is like them then they don not feel so isolated........

I have learned early on that I must learn all I can about CAH so that when you have a medical event that you can tell the Dr. what to do, they don't always like that, but we have to fight for our kids...  And I have had many fights in 13 years, but it has always   been to help Nic.  I will not let them tell me what they think is right, we must stand up for our kids, so we have  to learn all we can........  We are the voice of our children......

We are always looking out for Nic, we have the say in what is done and not done.  We always insist that they remove heplocks ASAP, even if that means that they have to stick Nic again.  Nic does not like heplocks, so we make it plain that this will be done our way........  Our Kids have the right to say so.  I would never stop them from doing any thing nessecary, we would never put his life in jeopardy.  I want this to be clear, we have always told Nic that any thing that the Dr.'s & nurses do is not to hurt him but it is for his own good.  That they are only trying to help......

I did not mean to make this so long, but I have a hard time stopping.  If there is any more guestions please fill free to e-mail me at   cbrendkent@hotmail.com.

(((((HUGS)))) Brenda Smith