6 month old - possible CP diagnosis

[puplove214]

Hi everyone. Just need to get this out and see if anyone has advice or support to offer.

My son is now 6.5 months old, diagnosed at 5 months with hypotonia and gross motor delay by a pediatric neurologist.

We have been doing PT and OT to address the delay but it has now brought up other issues. He still clenches his fists almost all the time, he flexes his arms backwards, has trouble grabbing toys, is not close to sitting unassisted, his head control isnt great.

The PT that we have been seeing recommended today that we call to get into the Cerebral Palsy clinic at Childrens Hospital.... Im in a dark place tonight with all the what-ifs in my head and just wondering if anyone has been through anything similar?

Thanks for listening..

[auntie]

I'm sorry.

[dixienormous]

Very similar position when I was in the process of getting my DD's (aka PF) diagnosis.

She has CP due to a prenatal stroke. It started with a red flag by her pediatrician about her head size and her missed milestones. An MRI verified what happened and she now has a neuro who we see, though she's stable.

It's a hard and winding path. There is grief, anger, and frustration. There is also joy, awe, and gratitude.

PF just graduated from Early Intervention into Preschool Special Ed (CPSE). She get's a TON of therapy both in school and in the afternoons. The progress she's made is incredible. Is she still behind her "typical" peers? Yes. But that doesn't diminish how far she's come.

The diagnosis doesn't make the child. Take your time with the process and acceptance of your new normal. I'm still trying to accept it and we've been dealing with this since she was 11 months old.

[syllie]

My daughter does not have CP, but the rest describes her at that age.

I was in a dark place at that time too.  There is a lot of disbelief, anger, sadness, and grief that comes with all of this.

She is now a little over two.  I still grieve a little every day, but we are a happy, if not typical, family.  The challenges are there, but it is our normal now and I put conscience effort into not dwelling on the negatives.

It will be okay.  It will.

Hugs!

[puplove214]

Thank you so much for sharing your stories and your kind words. I apologize that I was a post and run, I needed to disconnect for a few days. Reading that others have gone through this took my breath away - it almost made it too real, if that makes sense? I guess I was secretly hoping that people would say "nah that doesnt sound like CP or something to worry about yet". Hello denial.

I'm going to try not to get ahead of myself, wait for a diagnosis and take it as it comes. PT has been helping and its encouraging to see improvements, as minor as they are at this age.

Thank you again, I may be around more frequently over the next few months

[macmars45]

It's okay to be upset/frustrated/angry/scared etc. You are a great mom. Never forget that.

I have CP. My parents were my biggest advocates. They were amazing. My mom knew something wasn't right and took me to dr after dr until someone listened to her (back in '85/'86). I had PT at public school PreK-7th grade and at my local hospital from 9 months-4th grade.

I've been back to PT a few times as an adult to gain strength in my working body parts (the right side of my body). It's been great; I've learned so much.

If you ever want to talk PM me.

[longtimenopost]

((hugs)). My DD (21 months) has CP from a brain bleed due to extreme prematurity. The damage was mainly on the right side of her brain, so her left side is most affected. CP is SUCH an umbrella diagnosis, every person and every brain is different. She does a lot of therapy (9 appointments this week!) but is a very, very happy little girl. She sat at 18 months and does not crawl but scoots around on her bottom. We are hopeful she will walk, but she is definitely on her own timeline.

[puplove214]

macmars45 - thank you for sharing, I will take you up on that once I know what questions to ask

longtimenopost hugs to you too. DS has left side weakness as well. If you don't mind sharing, what was the process of being diagnosed? Did you know shortly after birth that she had a brain bleed? Or did symptoms come up that led them to do imaging to look for it? I don't quite know what to expect when we go to the clinic. I'm also curious - after seeing images of her brain, were they able to predict where she would struggle the most? I think the unknown is the tough part right now. It's a lot of "wait & see".

[longtimenopost]

puplove214 We knew she had a brain bleed on day 5. All micro-preemies are generally scanned, but she was symptomatic in that she was doing well on cpap but started struggling and had to be vented. Her bleed led to periventricular leukomalacia and a large porencephalic cyst on the left side. Basically, those mean tissue was damaged and dissolved into cysts. She also developed hydrocephalus for which she is now shunted. The thing is, her brain looks relatively normal now. The cysts are no longer there because the rest of her brain filled in.

If they do an MRI on your DS now now, they might see damaged areas because he is still young. They might not see any damage, though, and they probably won't be able to give you any specifics about where he may struggle. Honestly, I had no idea how much we didn't know about the brain until this. I hoped that the neurologists could look at the MRI and tell us exactly what you want to know, but they couldn't. In the NICU, we were told she may never walk, talk, eat on her own, or know who we are, or she could be the clumsiest kid on the soccer team.

Waiting is the absolute worst part and I'm a work in progress, but I try to stay in the moment with her and accept that she has her own timeline. I don't say she is "behind," because that implies she may "catch up" to her typical peers when the truth is she may not. It's just semantics, but it has made a difference in my acceptance of our journey.

Have you heard from the clinic?

[puplove214]

We are actually going to our first appointment on Friday. Like you said, I was hoping that any scans he has done would shed some light on what to expect but it sounds like that's unlikely.

He is such a happy boy and brings us so much joy, I focus on that as much as I can. Its just hard to accept that he has a harder path ahead of him, you know? And all of our friends have babies similar in age and as the differences become more apparent its a constant reminder that somethings "wrong". I find myself making excuses not to get together so I don't have to talk about it.

Thsnk you again for sharing, its nice to know that someone "gets it"

[mudslide]

Sorry for bumping this thread. I just stumbled across it.

We went through similar with my daughter. She was diagnosed w/ hypertonia and we started pt. We did pt for 7 months. She went from not being able to roll over properly to walking. It was a dark time for me. Please feel free to pm anytime, k? ((Hugs))

[puplove214]

Thanks mudslide. At this point, our only diagnosis is still a hypotonic core/neck and hypertonic limbs. The doctor said that while he's not developing "normally" and there are definitely concerns, particularly with the asymmetric tones, he's not comfortable diagnosing CP at this time. However, he may fall under the very wide umbrella down the road.

So...we just continue with therapy (heading into month 4) and hope for the best. I'm so happy to hear that therapy worked for your DD! It's really amazing how much improvement we are already seeing. He almost 8 months now and still not able to sit unassisted but his neck control while being supported in a sitting position is SO much better already. One day at a time, right?

[mudslide]

My daughter doesn't have a cp diagnosis either at this point. Just concern and watchful waiting right now.

I know how hard it is when you're right in the midst of it. How often is he in therapy? Keep your head up and take it one day at a time.

[puplove214]

We are currently doing 2 PT and 2 OT sessions per week ad it's a lot to handle (both working full time). In November we are dropping one session and one session will be at his daycare which is a big help. If we see a decrease in improvement we will up it back to 4x a week but we do a lot with him at home too so I'm hoping it's enough.

We are beginning to realize its a marathon not a race...this isn't the quick fix we thought it would be so we can't burn out too quickly.

How old is your DD now? Is she struggling with anything in particular or is there just a general unexplained delay?