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Hypermobile 4 year old with possible CP

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KatieAnderton
KatieAnderton Community member Posts: 1 Listener
Hi everyone. I'm new to scope. 
My youngest daughter was born without half of her diaphragm (CDH) which allowed bowel, stomach, liver and spleen to migrate into her chest cavity. This in turn caused the lung on that side to not form fully due to the said organs taking up room, it also caused her heart to be pushed all the way over to the right side of her body. She had surgery at 5 days old and is doing reasonably well. She has reflux which we couldn't control until she had a gastrostomy fitted and now that the medication goes directly to her tummy we seem to have the reflux sussed. She was also diagnosed at around 2 years old of having severe hyper mobility syndrome and Ehlers Danlos has been mentioned. They dismissed the idea without any checks. Then she was diagnosed with a heart murmur which after investigations turns out to be a heart abnormality due to the CDH and it just being monitored for now.  She's under many specialists, plus Physio, OT and Orthotics. 
Recently her paediatrician was replaced and she is now seeing a consultant. On our first visits she picked up on other abnormalities such as an odd gait, foot valgus deformity and the mild scoliosis that we already knew about. She also picked up on hypotonia (low muscle tone) and very small size and weight (0.2nd centile) which again we are aware of but the consultant has decided that my little one needed to be checked for CP based on the hypermobility, gait, foot, scoliosis and sizing. We have an appointment already for a brain and spinal MRI scan but I wondered if anyone had any experience of hypermobile cp. all the info I can find talks about joints that are tight but not joints that are too loose. 

Id be grateful of any advice or information 

thanks so much 
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