Finally - we are getting somewhere !!
Hi everyone - not been on the forum for quite a while - we had thought that Caitlin was ' outgrowing' her reflux .. but now although the vomitting has stopped - the other symptoms have got worse.
She began having what looked like small ' fits' -limbs jerking- back arching- prolonged screaming . it was thought she may have epilepsy -so a brain scan was carried out.
We went to get the results yesterday and the scan showed abnormal patterns in the frontal lobe - however - the paed thinks it may not be too much to worry about and that the reflux is the main cause of her problems.
So after waiting for 10 months we are finally having proper tests done - she goes in for a PH test on monday - if that is positive they will try different meds for the reflux ( she has only had gaviscon up to now)
If however the test is negative - they will have to do more investigations on her brain -including an MRI !
Its all very worrying but at long last we feel positive because we now feel people are listening to us instead of patting us on the head and treating us as neurotic overprotective grandparents !
She began having what looked like small ' fits' -limbs jerking- back arching- prolonged screaming . it was thought she may have epilepsy -so a brain scan was carried out.
We went to get the results yesterday and the scan showed abnormal patterns in the frontal lobe - however - the paed thinks it may not be too much to worry about and that the reflux is the main cause of her problems.
So after waiting for 10 months we are finally having proper tests done - she goes in for a PH test on monday - if that is positive they will try different meds for the reflux ( she has only had gaviscon up to now)
If however the test is negative - they will have to do more investigations on her brain -including an MRI !
Its all very worrying but at long last we feel positive because we now feel people are listening to us instead of patting us on the head and treating us as neurotic overprotective grandparents !
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Replies to This Discussion
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Permalink Reply by Rebecca on -
Hi, I'm glad you feel people are listening to what you are saying - all the best you and little Caitlin.
Rebecca
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Permalink Reply by Lisa Alexander on -
Hi Caitlins nan,
I have recently joined this site as my daughter has severe reflux with a condition called sandifer syndrome (see my discussion for my story). She has dystonic episodes which look like seizures and she was only diagnosed after every neurological test under the sun came back negative. It is a widely underdiagnosed condition and many doctors do not recognise it as only 1 in 100 children with reflux have it. I actually suggested the syndrome to the doctor in A+E after doing some research on the internet linking seizures with reflux. We have since had a consultants appontment and the syndrome has been confirmed. My daughter is now on olmeprazone and domperidone and the symptoms have disappeared.
I feel that it is definately worth suggesting possible reasons for the "fits" to doctors as they see so many children but you are the specialist in your own child or grandchild.
Good Luck
lisa
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Permalink Reply by Caitlin's Nan on -
Hi Lisa ... sounds exactly like Caitlin - they mentioned Sandifer Syndrome but until we get the results of the PH test not sure how or what they will be testing her for next. It was worrying because her brain scan was showing abnormalities . Just have to wait and see now !
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