Mothering Forum banner

1 - 11 of 11 Posts

·
Registered
Joined
·
362 Posts
Discussion Starter · #1 ·
Today was a hard day. My son who is 9 months,went for a developmental evaluation today,and the dr is sending him to an opthamologist to get his vision tested,as well as to a cerebral palsy clinic for further testing. He was born 5 weeks early via emergency C/S due to placenta previa & placental abruption. Was given oxygen at birth, and sent home at 3 days old. At 5 days old,he'd went from 6'11 to 5'8,and had a bilirubin level of 21.4. At 6 days old,he went limp,and stopped breathing in the ER. Spent a week in the hospital,4 of those days in the NICU . Mentally,he seems to be developing fine,but has some hypertonia in his legs. Just learned to roll over 2 weeks ago,& can't sit up or crawl. Anyone here that has a child w/ CP,or simular issues I would love some input,advice,etc.<br>
Thanks.
 

·
Registered
Joined
·
362 Posts
Discussion Starter · #3 ·
What kinds of issues does your daughter have? The dr today did say he's hypertonic. He doesn't try to crawl,can't sit up,but otherwise he is meeting all the other milestones. I am just wondering what kind of things to expect in the future -- will he be able to crawl? Walk? We are absolutely terrified. He is such a sweet,smart little guy,& it breaks my heart that he's going thru this. Suffice it to say that I am a total wreck.
 

·
Registered
Joined
·
2,274 Posts
<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br>
My son has CP. He started PT/OT at 8 months, and he's three now. No one ever told me anything, WRT his prognosis, because they didn't really know. They usually don't, especially with babies.<br><br>
DS sat at 9 months, commando crawled at 18 months, pulled to stand at 2.5(?), and isn't walking yet. His speech is very delayed, too.<br><br>
Therapy has been great for him, though it can be very stressful on mom. You try to do everything, yk?<br><br>
I had a Bumbo, and that helped him quite a bit. Endless, eternal repetition of everything. It's been all about muscle memory with DS, so I have to repeat every action and every word 500 times. Lots of stretching.<br><br>
I hope that's a bit of a help, feel free to pm me if you want to chat.<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

·
Premium Member
Joined
·
9,138 Posts
Annie,<br><br>
Our situation is different in that Andrew doesn't have CP (He's got a metabolic condition that affected gross motor and other milestones).<br><br>
I know it is really hard right now. The beginning of facing things is always the hardest part. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

·
Registered
Joined
·
1,889 Posts
Just wanted to send you a hug Annie37. No one ever wants to hear that kind of news about their baby. It will be a year ago at the end of this month that my DS (who was 5.5 months at the time) was diagnosed with a problem with his brain. He had a vascular anomaly in his cerebellum. He had surgery at 9.5 months but he has delays related to this and an uncertain future. Anyway, there have been very dark moments over the past year, but there have been so many incredibly joyful ones as well. The beginning is often the hardest -- just coming to and accepting a diagnosis. Allow yourself the time to grieve and feel sorrow. But remember it won't always feel like this. You will find your way and so will your son.<br><br>
Everyone is so very different. It is hard to really compare at all. But in case this is helpful in anyway, my DS didn't really sit independently (and he still does topple over occasionally) until about 11 months. He started "commando crawling" at about 13 months, and pulling himself up at about 14 months. It was so hard in the beginning especially because for the longest time he didn't even roll over! He has both ataxia (difficulty with balance and coordination) and low muscle tone (hypotonia). Basically, he has come so far now! Anyway, no one knows your DS's future. Just hang in there for now, take it one day at a time, and get whatever help you need. Oh, and we have seen our fare share of ophthalmologists too. I hope you find a good one. And remember kids and their brains are incredibly resilient, and so are mamas. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">
 

·
Registered
Joined
·
3,157 Posts
My niece has CP with similar issues to what you describe, but her's were much more severe in infancy. She was preterm (28 wks), under 2lbs at birth, and spent quite a bit of time in the NICU. At a year of age, she not only wasn't sitting up or crawling, she was just starting to gain head control. From the outside, it looked very worrisome, but b/c I'm not her mom, I hoped for the best and let her parents do what they thought was appropriate w/out offering my suggestions or concerns.<br><br>
She was diagnosed with CP at a little over a year with decreased tone. We don't see them often b/c we live in different states, but from what my sil says, she's really doing pretty well now. She's 4.5 and the CP has not impacted her mental development at all. She is able to walk, albeit with the help of leg braces for longer walks that tire her out. She's clumsy, but can get around and do what she needs to. She's starting kindergarten in the fall and, given her rough start, if some clumsiness and low tone is all she has, they feel fortunate.<br><br>
They did do pt for quite some time and exercises at home, but I believe that she's not going to the PT anymore. Good luck with your little guy. I hope that everything goes well for him!
 

·
Premium Member
Joined
·
4,834 Posts
At 9 months, my son was suspected of CP for almost the same reasons. He seemed more severe than your dc because he also appeared deaf and really didn't make much noise... the list goes on. He was overall delayed, but the stiffness in his legs was really what put them over the edge with saying CP. Even at 15 months his heel-chord stiffness was still there.<br><br>
Part of it was food irritants and honestly, I don't know what the rest was. But now, he's 4yo and the average person wouldn't have a clue anything was ever wrong with him. His current dx is PDD-NOS and auditory processing problem has been discovered. He went through LOTS of birth-to-three/Early Intervention therapies (up to 14 hours/week for a brief period) and once he turned 3yo we dropped the ball and he's had nothing.<br><br>
He is still on the very low end of normal for gross and fine motor. Honestly, I was shocked to find that out because you can't really tell unless you test him. Like he can't hop on one foot more than once and he can go up the stairs one foot after the other, but prefers one foot-bring the other one up... kwim?<br><br>
Get through all the evals and see what comes of it. Then do your research. If not for the internet and lots of available time for me to waste on it, I'm not exactly sure where we would be.
 

·
Registered
Joined
·
1 Posts
My daughter's full diagnosis is Spastic Quadriplegic Cerebral Palsy; Left Hemiparesis. Basically, she has increased muscle tone in all extremities and her left side is more affected than her right side.<br><br>
Keighly is an ex-25 weeker who weighed 1 pound 7.3 ounces at birth. During delivery, she was exposed to the Strep B virus which led to Meningitis which led to Grade IV Intra Ventricular Bilateral Brain bleeds. The bleeds were discovered on day 7 of life. When we were told about the bleeds, we were also told she would never walk and would almost certainly be severely retarded. Her prognosis was so bad that one of our options was to remove her life support. Luckily, we decided to get her home first and worry about CP from there.<br><br>
Today, Keighly is 21 months old and she is developmentally delayed. We're still working on sitting independently. She can brace herself for up to 30 seconds at a time but still topples over a lot. She mastered the army crawl at about 18 months but can't move to hands and knees crawling and certainly can't pull to stand. However, it's no longer a case of "if she walks" but merely a matter of "when she walks." When she does take her first steps, they won't be independently - she will definitely need orthotics and a walker, but she'll walk! Cognitively, the doctors couldn't have been more wrong. Keighly scores just as high on all tests as her twin Audrey does. (Audrey did not suffer brain bleeds and has no CP diagnosis.) She may experience learning delays when she reaches school but these were explained to me as "I know plenty of CP kids with learning delays from medical school. They simply learn to learn around them."<br><br>
I'm not going to lie and say its all been easy because it's not. It's hard to watch one of my daughters moving leaps and bounds ahead developmentally but I just remind myself that Keighly is on her own timeline. It's also hard because there are a lot of appointments. We currently see a neurologist, a rehabilitation doctor, an ophthalmologist, and a chiropractor in addition to our pediatrician. We also have in-home therapy once a week, speech therapy twice a week, OT once a week, and PT once a week. I usually tell people my second job is activities director to my little ones.<br><br>
Anyway, the thing to remember is that CP is simply a diagnostic tool to help doctors help your LO. It in no way defines your LO.
 

·
Registered
Joined
·
362 Posts
Discussion Starter · #10 ·
Thank you all so much for your responses. I kep telling myself to be thankful ,as things cold have been SO much worse,after all, we almost lost him twice. Besides the above,he has also had severe reflux (which is pretty much gone now thank goodness),eczema,viral menningitis,RSV,ear infections,and a very bad case of the Flu. Been a difficult 9 months. But he is SOO loving,so alert ,I just know he will get thru all of this. One thing he does here lately that concerns me,is he'll take his right arm,and repeatedly hit his upper left arm,over & over & over.He has pretty good control of his hands,can hold toys & etc pretty well,but the dr who did the assesment seemed to think his movements were not what they should be. Guess we just wait & see.
 

·
Registered
Joined
·
2,274 Posts
He may be seeking some kind of stimulus. Or it may be spasms. My son's teacher has mistaken his throwing of sand for a random gross motor thing, but he was hucking sand. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/lol.gif" style="border:0px solid;" title="lol">
 
1 - 11 of 11 Posts
Top