New here and feeling scared!

lozzy543 · August 2019

Hi all-

my son is nearly 6 months and hasn’t had a diagnosis yet but I’m scared it might be coming. I feel everything is being dismissed though because of his age. Wondering if you could maybe give me some input.

my little boy was born 10 weeks early and was found to have a very subtle amount of pvl on an ultrasound scan. The radiologist thought it would not effect his neuro development. I have obviously been on high alert since.

he is bright as a button, but I feel like his legs tense a lot, he will be playing under his play gym and they just tense out straight- he can flex them too but he doesn’t do it a lot like many other babies do- grabbing feet into mouth etc. He doesn’t feel stiff other than that really- just the lack of flexibility. He kicks his legs excitedly up and down a lot but not up high if u get me. He seems to scrunch his toes too. He also stil has a atnr which I believe is weakening- he has started rolling both ways too now- but I no references that persist are a big sign.

He is fantastic with hands- midline etc, fab on tummy time and trying to push off and grab things etc. Recently starting to bounce a bit when standing too!

im just terrified for his future it’s really eating me up. Wonder if anyone with babies diagnosed with cp- particularly effecting legs could comment.

thanks and wishing u all well x

Chloe_Scope · August 2019

Hi @lozzy543 and a very warm welcome to the community! I can understand why this could be daunting and your feelings are very valid. Does your son have a pediatrician?

It can be very hard for us to diagnose as we are not medical professionals, but I hope others will be able to share their experiences.

I am also tagging my colleague, @Richard_Scope, who is our cerebral palsy specialist.

Please do let us know if we can do anything else to help.

Richard_Scope · August 2019

@lozzy543
Really good to meet you.

Cerebral Palsy is a disorder of posture and/or movement that results from the immature brain either being damaged or failing to form correctly. It is a diverse condition that affects each individual in a way that is specific to them. It can display itself in a way that is similar to other developmental conditions. Diagnosis is normally made by a paediatric doctor after a period of observation and tests to rule out the possibility of other conditions. A brain scan can often assist with identifying areas of brain damage but not in every case. There is no stand-alone test for cerebral palsy, diagnosis is more of a process that looks at evidence from different sources (such as medical history, general tests, scans and observation). The average age of diagnosis is 18 months but sometimes much later, especially if the person is only very mildly affected or has other health issues that are complicating matters. Has your son already had an appointment with a Paediatrician?

I think the important point here is that you have concerns and you sound as if you need those concerns addressing by an appropriate person. It would not be appropriate for me to speculate if your son has cp but I would suggest that you express them to your son’s GP or Paediatrician.

Please stay in touch and let us know how you both get on.

Blue_orchid5 · August 2019

Hi my little girl who is now 3 has cerebral palsy which effects both legs from her knees down. Like you little boy she was also born very early. We started to notice stiffness in her legs at around 1 when other children her age were walking and she wasn’t. She was very delayed in reaching milestones. She couldn’t roll over until she was 10 months, wouldn’t sit unaided until she was about 1 and a half. Still to this day she is unable to stand and walk. Our diagnosis has only been made in April this year after years of unanswered questions.

I think sometimes they can be quick to dismiss your concerns saying things like “every baby develops at their own rate”. However as a parent you know when something isn’t quite right. If you feel something not right keep pushing for answers.

I hope you get answers soon.
Please let me know if can help answer any questions you may have.

April2018mom · August 2019

Hello
I do not know much about CP. But my longtime pal has spastic diplegia (she turned 23 in July) and works part time at a bank. She was delayed when it came to gross motor skills but other than that she is doing well. She even went to a mainstream school. She was 4 weeks early.
Make sure you are definitely respected as a valuable member of the medical team. Insist on them answering your questions too. Don’t be afraid of taking notes either. Seek second perspectives if need arises.

lozzy543 · August 2019

Thanks for the replies. @Blue_orchid5 did you feel like something was a miss early on? Iv seen a private paediatrician as I’m not seeing our usual one til October. He doesn’t have concerns atm. But I’m his mum and I just no something is not quite right with his legs. He doesn’t move them a lot at all. I’m so scared it’s awful living and waiting for something to come! How do you cope with the uncertainty?

Glad and to hear your daughter has reached some milestones, is she crawling? Are u seeing a physio? OT etc?

When your daughter began to roll did she do it with rotation? Or a log roll type? My boy has started to roll but I isn’t bringing his legs over first. I just don’t feel he wud be able to do that as his legs are not flexible really! I feel like I’m looking at every detail ?

thanks for taking king the time to reply.

x

Blue_orchid5 · August 2019

@lozzy543 Yes we did suspect something wasn’t quite right early on. When they kept asking if she could roll and she couldn’t we thought something was up but at that time had no idea about CP. When she did start to roll it seemed like it was a huge effort for her. Her whole body seemed to tense up and she would sort of swing her arm to give her the strength to roll. She would roll like a log too.

Our neonatal paediatrician was the same he always dismissed it even when I asked him directly if he thought it could be CP. He even said at one point he thought she was actually just being lazy. When we finally saw a consultant he referred us straight away for a MRI which revealed she had CP.

We are now seeing a physiotherapist who is wonderful. She has put us in touch with the OT for nursery, social care for adaptations around our home, wheelchair services and has provided us with equipment for my little girl to use at home.

I know exactly how you feel after the MRI we had to wait 2 months before we found out the results. I think not knowing is the worst part. Once you know what kind of challenges you will face, I’ve found it’s a lot easier to deal with. I was actually referred to the consultant in the end by a health visitor while at her 2 year review. Straight away she said it wasn’t right that she had no gross motor skills. She put in a referral to both the physio and the consultant. So it might be worth asking your health visitor I You can get in touch with them.

She is crawling now but it’s still not what you would call a standard crawl. She tends to move the thigh but drag her calf if that makes sense. Rather than lifting the whole leg up and putting it down. She’s such a happy little girl though and she never complains. It’s so scary not knowing though all kinds of things start going through your head.

It can be a long a process getting a diagnosis. They kept saying the wouldn’t investigate until she was 2 and then when she got to 2 made us wait another 3 months to allow her to “catch up” because of her being born early. Looking back now i wish I had pushed harder to get answers. As a first time mum though sometimes I felt like maybe I was making a fuss and being too overprotective. Now I know that I was right, now I always push for them to do things and don’t let them tell me what they think will work best for her.

Always here for a chat if you want to vent your frustrations.
I understand how hard it can be not knowing.

xx

April2018mom · August 2019

Blue_orchid5 said:

Hi my little girl who is now 3 has cerebral palsy which effects both legs from her knees down. Like you little boy she was also born very early. We started to notice stiffness in her legs at around 1 when other children her age were walking and she wasn’t. She was very delayed in reaching milestones. She couldn’t roll over until she was 10 months, wouldn’t sit unaided until she was about 1 and a half. Still to this day she is unable to stand and walk. Our diagnosis has only been made in April this year after years of unanswered questions.

I think sometimes they can be quick to dismiss your concerns saying things like “every baby develops at their own rate”. However as a parent you know when something isn’t quite right. If you feel something not right keep pushing for answers.

I hope you get answers soon.
Please let me know if can help answer any questions you may have.

I agree. If I had not politely asked for the name of another doctor so that I could get a second perspective I would probably have lost my sanity with doctors early on.
The very first appointment with a pediatric urologist at Children’s was terrible as no tests were done and he tried blatantly to disrespect me. My son was 2/3 months old then and I was still adjusting to his diagnosis and trying to be a mom of twins at the same time.
If we don’t politely complain, things will not change. I sent off a email to the head of the urology department afterwards when my son was in bed with his twin sister. Ask questions. Get into the habit of making notes too.

emmarenshaw · August 2019

Hello @lozzy543 welcome to the community. I have CP myself. I understand this must be a difficult time for you, but know that we’re all here should you need anything at all. We’re here if or when you need us.

New here and feeling scared!

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