Hi All,

I am pretty sure that my daughter Julia has some form of CP. She's only 11 months, so we haven't gotten an official diagnosis yet. We know she's at increased risk because she was diagnosed with periventricular leukomalacia (she has a 3mm cyst in her brain). She's also showing signs of it, specifically she heavily favors her left side - seems to be mostly her arms.

She was diagnosed with Duane's Syndrome, an eye disorder that causes her eyes to cross and not be able to turn fully outward. Some Duane's patients look to one side or the other in an attempt to put things more in focus, and her default position is to look to the left. Her head control is better when she's looking to the left, since she's developed those muscles more.

Anyway, I was just wondering for others whose kids were eventually diagnosed with CP, what was their timeline for reaching certain milestones? Julia still can't fully hold her head steady when sitting (she's 9 months adjusted), and the Duane's may or may not be a contributing factor. She is just now trying to roll from back to stomach, and is almost there. But she can't sit unassisted, isn't trying to crawl, etc.

Thanks.

Amy

Julia, ^Caitlin^ (stillborn due to encephalocele complications) & Gabrielle
30.2 weeks

Hi Amy my dd Izz had a brain bleed level 1 at birth yet was the 1st one to come home never even needed cpap or any help other than gain weight. With that said at around 13months we noticed she only crawled commando style while the other 2s were almost walking. At 15 months the others were running all over the place but Izz wasnt so we took her to the dr and were told that she had "hemoflegic c.p." that the brain bleed had damaged her left side. We had no idea we never even noticed she wasnt using her left side nor were we told at the hospital that there was a brain bleed at birth.. they just sent her home. DH and I both workdopposie shift and still had our lil boy just 12 months older who was diagnosed with autism so I guess been on survival mode we missed the signs Anyways we got her started right away on PT, OT, even speech therapy shortly after she started walking even running. Shes not as tall as the others but mentally shes actually the smartest! and her disability hasn't stop her from nothing!. Maybe you can contact "early intervention" for assessment and get her started in some form of therapy they may deem necesary. They actually come to your house to see her. Good luck hth.
Ivy

Julia had a level I brain bleed too, but that resolved and they didn't say that would cause any problems. But they also didn't say it didn't, and I guess it could've been a cause of the cyst. We are kind of going on the assumption that the cyst was the result of her ID twin's in utero death passing an infection (they suffered from slight TTTS).

She is in early intervention, PT & OT. They don't say much as to how she's progressing in relation to other CP kids though. You want to believe that they will eventually be able to crawl, sit, walk, with at least minimal assistance, but it's hard to know if her development is "normal" for a CP kid - even though there is no real normal.

Amy

Julia, ^Caitlin^ (stillborn due to encephalocele complications) & Gabrielle
30.2 weeks

Unfortunately, when it comes to special needs children the milestones are scattered. Is you daughter floppy or tight? Prefer one side over the other? Christian had a grade III bleed on the left and a grade IV on the right. He has very little brain matter on the right. He only had brain on the outer part the whole middle of his brain is fluid. He was dianosed with spastic dysplasia cp of the lower extremites. He has nystagmus and strabismus (repaired in sept)He around nine months in all areas of development but he is progressing. We are now trying to get him to walk. My memory is really horrible about his milestones. He can sit on his own, pull to stand, crawl if he really wants to but prefers the comando. I do know the pulling up started around september. The sitting and crawling was after between May and September. He gets PT/OT twice a week for an hour and he absolutely hates it. Do your girls receive any services? You will want to schedule her to see neuro if she does not already see one and neurodev. When she is older she should be able to get surgery to correct her eyes.

Our little angel
^Alex Joseph^ (11-4/11-5)
Brennan Matthew
Christian Jacob

"
Big brother Justin 8

She's more on the tight side, but even that fluctuates. The therapists are always surprised that she's as flexible as she is. She tends to stiffen up when she's upset, but she's always very easy to move. That's why we think if/when she's diagnosed, it will be a mild case.

She prefers her left arm, legs I see no preference for. She can use her right to grab things, and will if you force her to, and there are some toys that she will grab at with both hands, I guess when she's in crazy mode and decides she just needs to tear it in two.

But that is helpful to know that Christian was eventually able to do those things, since it sounds as though he may be worse on the scale than Julia is. I don't have a timeline for when I want or even expect her to be able to do things. Just a general idea that it will take a lot of work, but she will eventually, is fine by me.

Amy

Julia, ^Caitlin^ (stillborn due to encephalocele complications) & Gabrielle
30.2 weeks

I am not sure which is worse PVL or IVH. Christian's CP flucuates and is intermitent. If you mess with him he will tighten up. He refuses to stand if you try to make him. Pretty stubborn but as mentioned before he is progressing slowly. His CP is very mild. I am supposed to do ankle stretches but he gets too tight and won't let me. He now has a crib tent because some how he managed to get out of his crib and we found him sleeping on the floor. It will forever be a mystery.

Oh and Brennan is also about nine months dev but his delays are because of his trach. He has never been diagnosed with CP.

Our little angel
^Alex Joseph^ (11-4/11-5)
Brennan Matthew
Christian Jacob

"
Big brother Justin 8