How to support a teenager with long term health problem

(5 Posts)
WorrySighWorrySigh Mon 23-Sep-13 13:43:58

Thank you for that serene12, DD is 18 so is straightaway in the adult system. So far the care has been excellent. DD took herself to the doctor and following blood tests was called back in to discuss the results. She is being referred on for a colonoscopy to confirm the diagnosis. She has been told that the referral is 'urgent but not cancer urgent'.

So far DD is just glad to be getting close to a diagnosis. Hopefully she will then be able to then move quickly onto a treatment plan.

serene12 Mon 23-Sep-13 08:43:07

I do sympathise. My son was diagnosed with Crohns at the age of nine. He's now nearly eighteen. Inflammatory bowel disease can be quite debilitating in some cases, but the treatments available make a huge difference.
My son's care has just been taken over by the adult hospital. The care he recieved at the Children's hospital was wonderful, the Specialist Nurses really treated him as an individual. With teenagers it's best practice to allow them to manage the disease themselves, they feel more in control and helps them to prepare better for adulthood.
We found www.crohnsandcolitis.org.uk and also www.cicra.org a fantansic source of info
Good luck

WorrySighWorrySigh Sun 22-Sep-13 22:23:42

Thank you Theas18, this is all very new to us all. The gastric problems had been going on for a couple of years. DD is just glad to be moving closer to a diagnosis. At the moment she is concentrating on studies so is keeping away from Dr Google.

Fatigue seems to be a problem. Also when she gets a flare up ibuprofen and paracetamol just dont touch the sides. This makes it very difficult for her to sleep.

Theas18 Sun 22-Sep-13 22:09:51

Not directly but a close friends DS (who is very close to my children as their kids and mine are very close in age) has.

He was Just post GCSE when he became very unwell with what eventually turned out to be Crohns ( have no idea why it took so long to diagnose, it looked very like it very fast).

Anyway. Good news, he goes to his 1st choice uni next week. He has struggled at times, and has taken 24 months to do his A2s as he couldn't cope with full time school even when he wasn't in hospital, for a lot of time.

WorrySighWorrySigh Sun 22-Sep-13 20:49:21

After two years of gastric pain and other problems it is looking like DD has Inflammatory Bowel Disease. Further tests soon to identify which sort (Crohn's or Ulcerative Colitis).

Of course this isnt the only thing going on in her life. She is working on A2s and university applications.

Are there any parents with experience of supporting teenagers through these changing years when as well as the normal things there is also a health problem to handle as well?

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