CP?

twinkjk

Hi--I'm new to this board...

My daughter (3 weeks old) was just diagnosed with mild Periventricular Leukomalacia (PVL).  One of the common effects in many children with PVL is Cerebral Palsy.  Since our daughter is only 3 wks.  it is impossible to tell at this point if she will develop CP and to what extent.  For anyone with a child with CP, I was wondering what the first signs you saw were and at what age you began noticing them. 

Thanks.

MaxandRuby

DS2 just turned 3. He was diagnosed with CP at just shy of 10mos old. FTR, he was born at 35wk, 5d via emergency c/s and was diagnosed with PVL at just over  10mos old via a MRI. I noticed various things starting around 6mos (maybe earlier???) but the original pedi brushed me off. AT DS2's 9mos well baby appt (new pedi) I brought in an entire list of things that had to be discussed then and there because I was going out of town for 2mos. It was while I was out of town that DS2 was diagnosed. I'm happy to pull up my list and type it all out if you would like (it is kind of long) but the biggest thing especially towards 8mos (actual age) was that the idea of sitting hadn't seemed to have crossed his mind.  The other thing, and really probably the first thing I noticed, was that at 6mos old he seemed to have already determined that he was right handed. I don't mean just being a dominant hand but literally ignoring his left hand.

twinkjk

I would love to see your list.  We've just been told at this point that it is way to early, but to just watch her and see when/if she reaches her milestones.  We just happened to catch it very early because she had to have an MRI for another issue and they found the PVL.  But she shows no neurological deficit right now and her doctors say that if they hadn't seen the MRI they never would have suspected a problem.  It is extremely difficult for us to hear that our child may or may not have developmental delays and that we'll just have to wait and see....

realisticdreams

We started noticing things with P around 2 months of age.  Also the early hand preference as well, it's normally something I think a 2 or 3 year old starts to develop but I didn't know that since it was our first child.  She literally didn't move the right side of her body at all and she also had torticollis.  From her arm to her hand and leg even her right ankle was different.  We started PT at 2 months of age for her torticollis and saw ortho at 4 months and neuro at 6 months, where she got her clinical diagnosis of mild CP (she has right sided hemiparesis from a pre-natal stroke).  She had a 2nd confirmation diagnosis at 9 months as well.

Are you going to be connected with your states earlier intervention program?

twinkjk

Thank you and yes--we are already connected with an early intervention program. 

MaxandRuby

twinjkj - here is my list that I discussed with the pedi at his 9mos well child appointment along with notes. As you can see, I felt there was a lot off but I also had an older son that I could compare to.

**Make sure you notate when your child reaches milestones. I think you can download a checklist off of the CDC website. This will help you to realize if milestones are being hit early, on time, or late but try not to let it freak you out. Milestone dates are averages meaning some kids will reach them early or late and it is still normal. When DS2 was diagnosed, one of the things we had to bring was a milestone checklist type of thing. Had I known we were in store for this (SN child) I would have notated more things.

**Also, DS2 had undiagnosed torticollis which is how he entered into EI (the original pedi refused to diagnose torticollis although EI took one look at him while working with DS1 and asked about it).

1. Fisted hands (this is one of those primitive reflexes that should have been gone by 9mos)

2. Eye crossing - intermittently both eyes but not at the same time (this is not necessarily CP related but a lot of people with CP have vision issues)

3. Body tone/stiffness (had to physically bend DS2's legs during diaper changes)

4. Constipation

5. Right side dominance/ignores left hand and arm (dominance is not typically determined until much later like 2 or 3yr old I think)

6. Not sitting yet

7. Not crawling or attempting to crawl

8. Flexed feet (like you are pointing your feet upward towards your head)

9. Feet quivers (found out when he was diagnosed this was called ankle clonus)

10. Mouth quiver

11. Not banging objects together

12. Swallows saliva - chokes? Coughs a lot, seems like he swallows hard or wrong a lot

13. Does not pull to stand

14. Late rolling

15. Not much babbling

 

Good luck to you and your LO. Stick around the board. It is a really great group of women.

twinkjk

Thank you both!

Jcrab

I am a NICU RN so I have seen and cared for hundreds of babies. I was concerned about my son in the first 24 hours but of course the MD's blew me off. One corner of his mouth drooped as if he had a stroke, he had more of a bite than a suckling when it came to breastfeeding and his extremities were very stiff. He was a difficult baby, now we realize because we think he was in severe pain. It was always awkward to position him, like his back was very stiff but he didn't have the tone to support himself. He was very slow to reach milestones, like not reaching for toys at 4.5 months. At 6 months I finally convinced the Pediatrician to admit something was wrong and she referred us to a Neurologist who evaluated in clinic and with MRI but gave no diagnosis. By 9 months we started physical therapy, feeding therapy and later occupational therapy. I had DS evaluated by a second neurologist shortly after his second birthday this time we brought a PowerPoint slideshow with pictures and videos and the Neuro diagnosed him with CP. At the time she said she would not have made the diagnosis based on his current presentation but more on the evidence we had showed her from earlier in his life. He has progressed very well, still some delays but he runs, rides a tricycle and loves to dribble balls. He is clumsy with an atypical gait and has clonus in his feet but also such a blessing that he has come so far.

PP gave good advice as far as tracking milestones. Stick with this board if you like it, you can learn a lot. Let me know if there is anything else I can try to answer for you. Enjoy your baby!

gmmaa71

Hi my daughter was diagnosed with cp at about 9 months old. I couldnt tell much just that her right arm was tighter then the rest if her body and she never used it much. As soon as I took her to her first app at RIC the doctor there confirmed that she did have cp n her therapist knew it all along they just wanted to be sure. She still isn't using that arm much but we have hope it will get better