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Raising Special Needs Kids Raising Special Needs Kids

Any parents with knowledge about CP please read and comment! Warning!! Very long and detailed. Sorry!

Posted by on Mar. 31, 2014 at 11:37 PM
  • 22 Replies
1 mom liked this

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!

by on Mar. 31, 2014 at 11:37 PM
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Replies (1-10):
nicki.hemingway
by Nicki on Mar. 31, 2014 at 11:57 PM
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My son has spastic diplegic cp with some hand invovlement.  The issue with cerebral palsy is that if you see 10 kids with CP, you will see 10 different kids with CP.  There are multiple different types (ataxic, spastic, athanoid) and different configerations (hemiplegic, diplegic, paraplegic, quadraplegic, hemiparetic, etc).  Also some kids are like my son with some developmental issues, others can have significant developemental issues.  Honestly it depends ont he level of brain damamge.  I would think that the 24 hour EEG and maybe a MRI would be the next steps in finding out what might be up with your daughter.  Also look into bells palsy also called bracial plexis injury.  Some similar symptoms but not quite the same.  In the end a good neuro who specialized in children or even a CP/neuro clinic at your local children's hospital might be your best options.  An MRI of head, neck, and shoulders would show if there is nerve damage that could causes Bells palsy or cerebral palsy.  Also unless your child is severe many children with milder CP do not get diagnosed until between their 1st and 2nd birthday according to the CP clinic we see. 

darbyakeep45
by Darby on Apr. 1, 2014 at 4:51 AM
1 mom liked this

Nicki  has some great advice...hugs and good luck!

mandee1503
by Amanda on Apr. 1, 2014 at 7:55 AM
1 mom liked this
I would go forward with the MRI. It will show if there is any brain damage which would cause the cp. good luck. *hugs*
amijustlookin
by Member on Apr. 1, 2014 at 8:58 AM

I guess thats why I asked if it was necessary because from what I have researched you dont get diagnosed till after age of 1 so will it still show up anything on an MRI before the age of 1? I know you are not a doctor lol but I guess I am a bit torn. Thank you for all the information.

Quoting nicki.hemingway:

My son has spastic diplegic cp with some hand invovlement.  The issue with cerebral palsy is that if you see 10 kids with CP, you will see 10 different kids with CP.  There are multiple different types (ataxic, spastic, athanoid) and different configerations (hemiplegic, diplegic, paraplegic, quadraplegic, hemiparetic, etc).  Also some kids are like my son with some developmental issues, others can have significant developemental issues.  Honestly it depends ont he level of brain damamge.  I would think that the 24 hour EEG and maybe a MRI would be the next steps in finding out what might be up with your daughter.  Also look into bells palsy also called bracial plexis injury.  Some similar symptoms but not quite the same.  In the end a good neuro who specialized in children or even a CP/neuro clinic at your local children's hospital might be your best options.  An MRI of head, neck, and shoulders would show if there is nerve damage that could causes Bells palsy or cerebral palsy.  Also unless your child is severe many children with milder CP do not get diagnosed until between their 1st and 2nd birthday according to the CP clinic we see. 


DW030714
by on Apr. 1, 2014 at 10:23 AM

Like a previous poster said, there are many different types of CP, and CP is just a blanket term for brain injury depending on when the injury occured. What kind of therapy is she receiving? My son started PT and OT at 6 months, then speech therapy from age 1-3. He was officially diagnosed at age 2 for spastic diplegia. Get as much therapy as you can early on, no matter what they diagnose  her with. It's really just a label. Each kid is different.

letstalk747
by Joy on Apr. 1, 2014 at 11:50 AM
1 mom liked this

welcome

valleymomma1
by Bronze Member on Apr. 1, 2014 at 12:14 PM
1 mom liked this

My son has cp it was found on an MRI I would definetly persue it.   

nicki.hemingway
by Nicki on Apr. 1, 2014 at 6:44 PM

For us the MRI showed early on that some damage had occurred.  WE had a second MRI 2 years later and it showed that very little had changed since the initial MRI.


Quoting amijustlookin:

I guess thats why I asked if it was necessary because from what I have researched you dont get diagnosed till after age of 1 so will it still show up anything on an MRI before the age of 1? I know you are not a doctor lol but I guess I am a bit torn. Thank you for all the information.

Quoting nicki.hemingway:

My son has spastic diplegic cp with some hand invovlement.  The issue with cerebral palsy is that if you see 10 kids with CP, you will see 10 different kids with CP.  There are multiple different types (ataxic, spastic, athanoid) and different configerations (hemiplegic, diplegic, paraplegic, quadraplegic, hemiparetic, etc).  Also some kids are like my son with some developmental issues, others can have significant developemental issues.  Honestly it depends ont he level of brain damamge.  I would think that the 24 hour EEG and maybe a MRI would be the next steps in finding out what might be up with your daughter.  Also look into bells palsy also called bracial plexis injury.  Some similar symptoms but not quite the same.  In the end a good neuro who specialized in children or even a CP/neuro clinic at your local children's hospital might be your best options.  An MRI of head, neck, and shoulders would show if there is nerve damage that could causes Bells palsy or cerebral palsy.  Also unless your child is severe many children with milder CP do not get diagnosed until between their 1st and 2nd birthday according to the CP clinic we see. 



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amijustlookin
by Member on Apr. 1, 2014 at 6:58 PM

She is doing a free form of PT called Child Space through a program till we hear back from the PT people and Food Therapy and we are waiting for a call for OT also. She had shown a dramatic improvement in her right side in only a month of therapy with this child space lady and me working with her everyday. Is that typical? I am not sure if it should be concidered just a developmental delay or if there could be something more.

Quoting DW030714:

Like a previous poster said, there are many different types of CP, and CP is just a blanket term for brain injury depending on when the injury occured. What kind of therapy is she receiving? My son started PT and OT at 6 months, then speech therapy from age 1-3. He was officially diagnosed at age 2 for spastic diplegia. Get as much therapy as you can early on, no matter what they diagnose  her with. It's really just a label. Each kid is different.


DW030714
by on Apr. 1, 2014 at 7:11 PM
We def saw progress with therapy and glad we started young. It felt like a lot in the beginning, but he has progressed to the point he only gets a review once a month. But that's after 10 years of PT, 5 years OT and 2 years ST. Also he has had botox injections and surgery.

Quoting amijustlookin:

She is doing a free form of PT called Child Space through a program till we hear back from the PT people and Food Therapy and we are waiting for a call for OT also. She had shown a dramatic improvement in her right side in only a month of therapy with this child space lady and me working with her everyday. Is that typical? I am not sure if it should be concidered just a developmental delay or if there could be something more.

Quoting DW030714:

Like a previous poster said, there are many different types of CP, and CP is just a blanket term for brain injury depending on when the injury occured. What kind of therapy is she receiving? My son started PT and OT at 6 months, then speech therapy from age 1-3. He was officially diagnosed at age 2 for spastic diplegia. Get as much therapy as you can early on, no matter what they diagnose  her with. It's really just a label. Each kid is different.

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