I'm still in shock. I'm not even sure what to ask here. How do you manage the sypmtoms? Does diet help at all?
I'm so overwhelmed with information from the doctor. Continuing tests. Freaking out over elevated liver enzymes.
I'm just looking for help and direction on how to do what is best for my son.
Thanks
Reply posted for Casandra in TX.
How did you get to this diagnosis? What symptoms did he have? I have a 5 year old son that has issues. He has been to specialists, but they all say he's "normal" and his test results are "normal", but I am mom and I know something isn't right. What sort of tests did your son have to go through?
Thanks for your help.
Good luck to you and your family.
Reply posted for Casandra in TX.
seek the best ped gastro doctor. if you get one and aren't happy go to another. my granddaughter also has uc. it is like living a nightmare.
she is 8 and may have to undergo surgery as none of the med's seem to be working. we can pray for each other. it is *** the whole family when this happens.
Reply posted for Casandra in TX.
seek the best ped gastro doctor. if you get one and aren't happy go to another. my granddaughter also has uc. it is like living a nightmare.
she is 8 and may have to undergo surgery as none of the med's seem to be working. we can pray for each other. it is *** the whole family when this happens.
Reply posted for Casandra in TX.
I was in your exact same spot five years ago. I know EXACTLY how you feel. Overwhelmed is putting it mildly. I never even heard of this disease until that phone call. You need to try to jump in with both feet and get your hands on as much info as you can.
Diet definitely helps and so does living a simpler life. We used to over schedule ourselves because I didn't want to hurt feelings. Now we accept the first invite and send our regrets to the rest.
Believe me, it does get better. If I may also make another suggestion, research a support group in your area. I never thought there would be any benefit, but there is. My daughter was able to meet children that share a "special belly", and I was able to exchange ideas/ information with parents. Check with your doc or local CCFA chapter.
Another benefit is Camp Oasis. This year was my daughter's first year attending and she can't wait for next summer.
Be well, it will get better
Reply posted for Casandra in TX.
Cassandra - My daughter is 6 and was dx in June. This was our second chronic disease diagnosis - the first was when she was just 3. I remember feeling lost and overwhelmed.
So, it is overwhelming. My advice is to read & research but follow your own gut instinct on some things. Every patient responds differently to different medications and has different symptoms. For example, I read a lot on the forum and elsewhere about patients giving up milk and anything with lactose. My daughter thrives on milk and drinks it nonstop. Even at 6, she already has identified a couple of things that "hurt her stomach".
Tracking the labs is important but can be a roller coaster ride for the parents. If you can trust your doctor, he/she can be the best translator of when liver enzymes are critical or just borderline, etc, etc etc.
Hang in there - it is scary, I know. You will be your son's best advocate though. I hope he improves very soon.
Reply posted for Casandra in TX.
Hi... I can't offer any advice because it's all new for me too (son, 10, just diagnosed this month) but I feel exactly as you describe. The amount of information is overwhelming and it's scary too. Seems like a lot of balanced informaiton is here at this site so it's probably a good place to start. Good luck and {hug}!
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