My son is 7 months and has a probable diagnosis of beckwith wiedemann syndrome, we are still awaiting our blood results back to see who it came from/how it occurred. I know there are support groups out there but I'm wondering if anyone on here has dealt with it.
We have three monthly heart and tummy scans and I feel like sometimes I'm being stupid worrying over my son and the scans make the worry worse because you never know if it's going to all ok or not. The increase risk is cancer, even though small still scares me.
At 7 months he cant tell me where it hurts and that I think is what upsets me the most because I think I'll miss something that Is important. We were told by a paedatric doctor that if he had a fever to bring him in asap no matter what. That didn't help me one bit.
I'm just struggling to deal with it all. Someone out there in a similar situation?