Any parents with knowledge about CP please read and comment! Warning!! Very long and detailed. Sorry!
Hello everyone. My daughter is 6 months and 3 weeks old. At around 3 months I noticed she favored her right side. Thinking she will just grow into her body, I thought maybe it had to do with being cramped in my itty belly and possibly the way her body was contorted during the growth. As she turned 5 months we did a 4 month evaluation on her and she was quite behind in her motor skills and problem solving (sounds silly for a 4month old but thats the ASQ for ya). Then I decided to set time aside twice a day for her every day since the day of the test and do motor skill therapy with a specialist and on my own. She has amazing strength and her right arm is starting to become more coordinated now. She failed her 6 month ASQ as well but this time her Gross motor was above average but her fine motor and problem solving/social attachment was below. She is very happy and lovey and she is determined to move around.
4 months- Dominate Left side for turning, grasping, holding and pushing with feet. Right arm and hand wondered "away" often and she would stare at it funny as it "waved" and she would often grab it with her dominate left hand and put it in her mouth as if it was an object instead of her hand. Her right and left leg would be straight and stiff and she had multiple spasms if ever put into a sitting position. Toungue always out of mouth and has trouble eating and GERD is an issue. Sticks fingers down throat and gags herself. Possible staring seizures. Does not respond to name or look when hears anyones voice.
6 months- Dominate Left side still. Right hand still does its own thing but coordination is picking up more often than not. Still unable to pick up food and bring to mouth. Seizurs not found on 45 minute EEG and only two staring spells since EEG 3 weeks ago. Still can not sit up, legs still stiff but she can rock on knees. Right arm is weak, drops toys and will not hold her right side up to long when she tries to get on all fours. Right leg goes stiff while tummy time, grunting, crying and spit up often occurs. She still gags herself with her hands. Right hand finds its way to mouth on own instead of guiding it (she uses it to fall asleep with). Eating solid food is still an issue, tongue gets in the way and she uses fingers to help swallow food.
6 months & 3 weeks- She is able to stand with support and her hands can grasp thin objects to hold herself up (i have to put her in the position though), right leg wobbles and is still coddled by her, she often keeps it lifted up while sitting and her left leg is straight and sturdy. She gets into a sitting position half way with her left side propping her up and right arm hanging loose. She got small puffs to her mouth once for the first time today! She does not seem to have good hand eye coordination and often wont see whats in front of her and often looks away from people who are holding her and if you have a new voice she will lean in really close as if she cant see you very well. She is frog crawling lol. So cute! Her right arm will often give in as she crawls but she gets pretty far buy hopping like a frog. Her legs are very stiff when she stands and when she lays on her back still. I can squeeze them with my hands to loosen them up sometimes. Therapy seems to be working but I can still see a weakness and loss of coordination on right side. When she sits her legs get really stiff but she keeps them crossed at the ankle and sometimes cries if she has a spasm when in sitting position. (I dont know if they are spasms they just look like it to me). Still has trouble responding to name and voices but turns 50% of the time now but often stares off.
So my question is, does this sound like CP? I know you do not get worse with CP and you can have better strength and coordination but the problem is always going to be there. I have not mentioned my concern to the DR because he was really hard to talk to and without my camera footage he did not seem to believe me. He wants me to do an MRI because he labled her with Microcephaly (small head) but she is only borderline small. Will CP be able to be picked up during the MRI without them knowing about my concern or is it something I should pipe up about? I am also afraid to do the MRI because they have to put her to sleep. I know only I can make the decision but does this sound like something I should risk an MRI for right now? I am scared and I would hate to put her through something, put US through something that is unnessisary. They also have an EEG 24 video planned shortly after but I have only seen two spells in 3 weeks, she use to get them a few times a day before we went to the DR. I would just hate to put her through another test that is not nessisary.
She also has trouble recognizing me in the dark, she will scream and scream until she hears my voice and then she will kinda have a relieved breathed giggle and eat my face lol. Its like she is feeling to see me but her eyes look fine. She doesnt really look at peoples faces when they are near, she feels them. But she can see a brightly colored toy or light and go towards it. She doesnt really look at anything you put in front of her but she can see me when I peer over the bed and she is just now begining to smile at me. I feel the tests are nessisary but my stomache has been in knots and having my fiances side of the family so "whatever, everything is fine" attitude always makes me feel like I am seeing things. I guess I need some momma support or advice or guidance. She is such a happy and funny character, I am so proud of her determination. Thank you for your time!