We have been under RD&E for 2 years now for the care of my daughter. I started to notice absences a couple of years ago and we initially took her to see the consultant who told us there was nothing concerning. Then she went on to have 3 episodes. She was given a scan where they place the stickers on her head and the A&E dept administered a medication she was allergic to, even though we informed them of this. She came out on hives all over her body and we were still told to carry on taking the medication. It wasn't until we brought her in to the hospital again that they finally said to take her off the meds.
She went on to have seizures and was diagnoses with Epilepsy and a non epilepsy disorder as well. She has only every had a moving MRI scan not a still scan, I cant see how they can see what's happening without a still MRI.
She since has started her periods and is excessively growing especially her height due to the medication she is now on. We were told she should not be on this medication long term due to it possibly affecting her fertility but its been 2 years and still on the same meds, and no talk about changing her medication.
Trying to get through to the team is difficult, we have rung the dept 102 times today and it just rings out and we leave a message and never get a call back from a consultant. I feel like we have been given a diagnosis and just abandoned.
My daughter is only able to be in school 10% of the time and we feel like she is being failed due to her illness. We want to request her care is transferred to another hospital because we are so disappointed with care here.
"Feeling abandoned after diagnosis"
About: Royal Devon & Exeter Hospital (Wonford) / Accident and emergency Royal Devon & Exeter Hospital (Wonford) Accident and emergency Exeter EX2 5DW Royal Devon & Exeter Hospital (Wonford) / Paediatrics Royal Devon & Exeter Hospital (Wonford) Paediatrics EX2 5DW
Posted by xraysg87 (as ),
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