My DD has a long and complex history as she has a rare metabolic condition known as Congenital disorder of Glycosylation 1a. She had a fundo in 2007, and all went along pretty well, she was tolerating 50ml bolus feeds every 2 hours then continuous of 75 mls an hour overnight all via a PEG. a week ago she had a Barium meal because she has had periods of extreme pain every few weeks and they wanted to check for adhesions etc. It showed her fundo had partially unwrapped and the presence of a Hiatal Hernia... She has GDD so it is all guess work from body language where she is having pain
She seems to get really severe migraines at the same time as these severe gagging episodes, and the reflux has obviously worsened in the past week... My question is for those kids with hernias, do they get migraine types symptoms that come and go with it, periods where they go really pale and lethargic (BSL are fine), How can Megan (DD) be fine for a few weeks then suddenly crash, go completely off feeds and need IV fluids for a few days, then come right again?? Bowel motility is a bit slower but it doesn't make sense. We have started Periactin to try and prevent migraines but I think it has to b related to the GORD some how
Thanks
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Mummy to Megan
CONGENITAL DISORDER OF GLYCOSYLATION 1a
Tube feeding. cot overnight 50ml bolus during day, Cirroshsis of the liver, pericardial effusions leading to a pericardial window, perforated bowel from NJ, global dev delay, severe hearing loss, hypoglycemia (HIH), calcium deposits in kidneys, slow bowel motility, GORD (had a Nissen Fundo), short sighted, Happy go lucky toddler
You guys have had such a rough go...but welcome back, nonetheless, even though I wish it were under better circumstances.
It almost sounds as if you're dealing with abdominal migraines, or possibly cyclical vomiting. It could very well also be the metabolic disease itself causing these episodes...a lot of kids with metabolic/mitochondrial diseases "crash" for either no apparent reason, or if they are ill or their bodies are stressed in some way (dehydration, blood sugar abnormalities, lab abnormalities, etc).
CVS has been suggested before but there is no regular predictable pattern and abdominal migraines is what we are treating her for with the periactin.. I have also heard Vallergan is good too but not for cirrohsis livers!!!
Was just wondering if it could b connected to the hiatal hernia in some way... Your right the underlying metabolic condition is probably the cause... but I keep pretending its not .. no cure for that!!!
We have had a terrible winter but prior to that she has been great!!! love the 2 steps forward.. its the 4 steps back I hate!!!
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Mummy to Megan
CONGENITAL DISORDER OF GLYCOSYLATION 1a
Tube feeding. cot overnight 50ml bolus during day, Cirroshsis of the liver, pericardial effusions leading to a pericardial window, perforated bowel from NJ, global dev delay, severe hearing loss, hypoglycemia (HIH), calcium deposits in kidneys, slow bowel motility, GORD (had a Nissen Fundo), short sighted, Happy go lucky toddler
You guys have had such a rough go...but welcome back, nonetheless, even though I wish it were under better circumstances. 
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