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7.5 month old.. Cp?

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7.5 month old.. Cp?

Postby gemmaleanne » Sat Sep 03, 2016 4:33 am

I have twin daughters 7.5 months old. Both were born "full term" via CS at 37 weeks weighing 5lb 13 and 4lb 11.

The smaller of the two was growth restricted and dropped from the 50th centile to below the 10th during pregnancy, there was a lot of talk of delivering early (30 weeks, 32, 34, 36) due to her faltering growth but with persistent monitoring they decided whilst she seemed happy she was best off where she was. She was actually a lot smaller than they thought and born on the 0.4th centile. She had no immediate problems after birth but has a shallow sacral dimple at the base of her spine. Consultant feels that as the base is visible spina bifida is not a concern.

Fast forward to 5 months and her development is quite delayed. We have seen a consultant due to her growth as she is still below the 0.4th centile and we bought up other concerns at that appointment. She is quite "floppy". Has poor head control and head lag on pull to sit. Didn't bear weight on legs at all and seemed to slip through our hands when holding her up. She can roll and lift her head (albeit very shakily) when in prone position but will not raise head in supine. Will babble, track objects, reach for objects and fine motor skills seem to be fine. Her consultant noted "marked truncal hypotonia, poor muscle mass, no resistance in arms, weak shoulder girdle, poor head control and head lag in pull to sit." She referred her for a cranial ultrasound which although not all of her brain could be seen we were told was normal. Her CK levels and thyroid function were fine also. She's been referred for physio therapy and has an appointment for her first session for a full muscle tone assessment next Friday. We are waiting for a dietician appointment to discuss her weight.

Fast forward again to today, 7.5 months. Her twin sister is now sitting unaided, eating well and has a lot of strength in her body. However we are now noticing that she (smaller twin) barely uses her left leg. Since I can remember she just spends hours twirling her ankle on that leg. She will actively kick her right leg, pull it to her mouth etc but her left leg just sits there. She will move it but nowhere near as much. When we pick her up her posture seems wonky and her left leg tends to swing back a bit and to the side. It seems much more rigid that the other side. She will now bear weight for a split second on her right leg but not really at all on the left, she's forever slumping down in the chair and pushchair to the extent that unless she is padded out well she slips through the straps which then cut into her leg. Her head control is better than it was but still shaky and wobbly and feeding her is becoming an issues as we can not get her into an upright position steadily enough as she can not sit at all. She tends to slump down into a C position with her chin to her chest and raising her head cannot be done for long.

She's very difficult to hold as it seems limbs are all over the place and she twists a lot. I feel in my gut like this is painting a bit of a CP picture? I know we are under the right care and that nothing more can be done right now regarding her age.. But I guess I just wanted to see what others thought. And possibly get some suggestions to help improve her quality of life for now. She's very alert and bright and it seems such a shame that she's so limited. I encourage tummy time and have purchased a physio roll and gym ball, we have been doing trunk strengthening exercises for a few weeks now but it doesn't appear to be helping much and she spends much of her time in her bouncer on akward positions just watching her older siblings play or on the floor struggling, it's heartbreaking.

Gemma
gemmaleanne
 
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