Transitioning from Peds to Adult

My son will soon be officially an adult. With that comes the legal issues and medical records. My favorite is that despite the fact that I am paying for his medical coverage and the bills, the insurance company cannot give me any information. Quite irritating. And yes, I know he will just need to sign a form granting me access. Yearly. Still irritating. There are decisions to be made about finding an adult doctor or staying with the pediatric doctor. Plus dealing with all the transitions that come with that.  

But the one I wasn’t prepared for is how he is going to manage caring for his own health. As his parent, I have had to make all the decisions for him. Granted I have been good at including him in discussions and taking into account his thoughts and feelings. I’ve been doing this a long time. I have learned so much about IBD, the treatments, procedures, etc. Now that he is trying to make decisions for himself, I see how much he doesn’t know about his own disease. And that is scary. So being the good parent that I am, I will have to take the time to show him how to find valid and correct information. I will need to start at square one.  

I’ll let you know how it goes.  

~ Cheryl 



2 thoughts on “Transitioning from Peds to Adult

  1. I too am the mother of a Crohnie. He was diagnosed at age 14 and is now 37. Has been a long and difficult journey but there is hope. I heard a webcast recently from a Dr Rubin who said he believes there will be a cure in his lifetime. We both have had incredible moments when we learned new coping skills and new drug treatments. Found very compassionate doctors and some not so very caring.
    You notice I use the word WE. As a family we support our minor and adult children who suffer from this. We would not have it any other way! When asked what my relationship is to the patient? I have answered his advocate! And then Mom. They get the message.
    In the 90s at the time of diagnosis, and being a 15 year old in the waiting room with crying babies, he decided he wanted a regular GI doctor. I networked in my Atlanta community and found a very caring doctor. he helped our son through some very bad times. I have learned a lot since then about health coverage, treatments etc. huge improvements in the last 20 years. I am sincerely grateful for the internet and the ability to reach others and give info as well as receive it!
    From one mother to another – I wish you and your son the best health possible. It is quite a journey, but we are not alone! Kathy

  2. My son was diagnosed in 7 the grade and I too am not only his Mom but his advocate. I worked very hard to figure out what foods triggered his disease, consulted a nutritionist and made sure he always took his medicine, all while teaching him to do these things for himself. His Pediatric GI doctor has said he is her Poster child. This past August I sent him off to college equipped with all the tools to take care of himself properly. I now have to just pray that he remembers to take good care of himself with all the temptations that college brings. On a side note he took a picture of his full 7 day medicine container to let me know he is taking his Meds ( I sure hope so :)) it is very hard for me to let go of taking care of him, but I have hopes that some of what he learned along the way has stuck with him.
    Good luck to all with this disease and those that love them!

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