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 My name is Cathy. I am the Congenital Adrenal Hyperplasia (CAH) Division Consultant and the parent of a son, Dan, with Congenital Adrenal Hyperplasia.
I applaud you for learning all you can about CAH. The Congenital Adrenal Hyperplasia division can put you in touch with other families that also share the same fears and concerns as you do. To help you understand how committed we all are to “our” children, I thought I would explain just how it happened to me. Also below you will see other personal stories. If you can share your story too, please send it to us. As parents of CAH kids, we learn from each other. Stories shared on the website and in our newsletter are important for all of us!
Daniel’s Story: On Friday, October 28, 1988, Daniel came into our lives weighing a whopping 9lbs. 12oz. We were ecstatic! A son, and a brother for our daughter Sarah, then age 3 ½. We came home from the hospital on Sunday, just in time to catch the Chicago Bears on TV and Daniel “watching” his first football game with his dad! Two weeks later our pediatrician called to tell us that he had received a letter from the State of Illinois, New Born Screening Department that Daniel could possibly have Congenital Adrenal Hyperplasia. (Illinois started screening for CAH July 1st 1987). Daniel needed to be seen by a pediatric endocrinologist (which he had already called and set up an appointment for us). This all came about on a Friday afternoon, we were told to watch for vomiting, or should he become lethargic we should bring him to the ER immediately. He was fine the whole weekend, and as a matter of fact we had my father-in-laws 60th birthday on Saturday night, my mom came to stay with him for a couple of hours, Daniel was fine, ate well, showed none of the signs they told me to watch for.
I thought to myself over that weekend, that somebody must have made a mistake, there is no way my baby could have Congenital Adrenal Hyperplasia and that they would call on Monday to tell me that there had been a mistake in the test and Daniel was fine.
Well Monday came, but no phone call came, and we were on our way to the University of Illinois. They examined Daniel from head to toe, took blood and explained CAH to us. We were so upset I couldn’t tell you a word they said. We told them that he did not vomit nor was he lethargic over the weekend, so they sent us home, and they would call us in the morning with the lab results. On Tuesday morning at 8:30am that phone call came, “bring Daniel to the ER immediately, they will be waiting for you. They were waiting for us, 2 doctor and 2 nurses. They took him out of my arms and immediately put him on a heart monitor, started drawing blood, and giving him an enema all at the same time. This was definitely a nightmare, and my heart was breaking for our precious baby.
When they were finished in the ER Daniel was admitted to the University of Illinois, with Congenital Adrenal Hyperplasia, 21 hydrox. salt-wasting. We were in the hospital for 4 days and very glad, and at the same time a little nervous about coming home. Cortef 3 times a day, different doses, and as close to 8 hour intervals as we could, florinef one a day, liquid sodium 3 times a day! That first couples of weeks were very overwhelming, but there is a reason this child was given to us and I prayed for strength, as there were many long days, and we worried so much about him.
Dan is now 16 years old, he has had 5 crisis episodes, where he needed solu-cortef, which we gave him at home, and in keeping in touch with our endocrinologist, he was managed at home. One of those crisis, we did go to the emergency room as Dan continued vomiting and we were concerned about him dehydrating. He was monitored in the ER; blood was taken to check his electrolytes. The ER also called the endocrinologist to let her know how Dan was doing. His stomach settled down and we were able to take him home with instructions from the ER and the endocrinologist.
We have had our share of double and triple doses: ear infections, upper repertory infections, strep, and chicken pox, (he did very well), has had teeth pulled, and a hairline fracture of his right ankle. Dan has always come through with flying colors and mom and dad, many sleepless nights and gray hair!
Our daughter Sarah is in college and does not have Congenital Adrenal Hyperplasia but is a carrier of the defective gene. At the age of 7, Sarah was diagnosed with diabetes. She is insulin dependant and is on the pump.
We were very blessed the day God placed these children in our care. They are loving, thoughtful, kind and just great kids. They make us laugh and sometimes cry (tears of joy)! They have taught us so much about life and ourselves.
My son Dan was 3 ½ years old when my endocrinologist told me of this wonderful organization that I should call (The MAGIC Foundation). I called and I was so excited, you would have thought I had won the lottery!! I was put in touch with another mom who also had a son the same age as my son. We talked for what seemed hours.
What a relief, somebody else knew exactly what I was going through, and we shared many of the same fears and concerns. This was what I needed and what my family needed, the MAGIC Foundation.`
We have banded together as CAH parents to not only continue to help each other, but also to help you! We have things which we have learned…tricks and tips which can be a great source of help and information for you. We know your exact concerns- we have been there. So pick up the phone and call us, or email us.
Also, as I know some areas about CAH are really technical and hard to understand. We will be adding a dictionary of sorts to help people understand the terms used about the condition.
If you come across items that are difficult to understand, please email us. We live in this world so to speak and have become very familiar with it, so that things that make perfect sense to us, may be confusing to others especially if they are new to these very complicated conditions. So your ideas will help us build a good “dictionary” to help everyone.
For more information, personal stories, or help feel free to contact us, or join as a member in the Congenital Adrenal Hyperplasia (CAH) Division. And always remember, we are here to help- from our heart as a parent to yours…so don’t be embarrassed- just call! Thanks!
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