New Here. Hemiplegia.

[EmSmith1980]

Yesterday we were told my youngest daughter has mild hemiplegia on her left side.

Anya was born at 23+6 in October 2010. She was in NNU for 136days. At 2 days old she had a grade 4 IVH. We see physio regularly, and now have community physio and paediatrician as well as at the NNU clinic.

No idea how the future will pan out. But staying positive as we have done the past 14 months and will continue working hard with Anya.

Just wondered if anyone else was in a similar situation who I could chat to? Anya is my 4th baby, but I feel like a new mum all over again. xx

 

[BabyBoo36]

I work with adults with hemiplegia, but haven't worked with children with it for 15 years or so, so can't really advise, but just wanted to offer hugs. My LO has mild SB, and it's all a waiting game, so I kind of know how you feel xx

 

[May.Baby.x]

My son has been diagnosed with Right Side Hemiplegia, pending the result of his MRI. (He also has some stiffness on his left side, although they feel this may be compensationary.)
He was born at 37weeks due to me having Obstetric Cholestasis.
At the mo the only thing they have given us to go on in terms of serverity is that 'mild cases sometimes do not show on an MRI, although they are expecting to see something' - which isnt very helpful!!
Despite this he is doing brilliant at physio. He will be 8months on the 28th, and has just started to sit. We have also had a speech & language assesment today as he has reflux, and does a few funny things when feeding! He also has a heart murmur which is being reveiwed by a cardiologist in Jan, and were also off to Orthopeadics 2moro to see if there any other problems with his right leg, as it is shorter than his left.

He wasnt a premmie and i dont understand the 'grade 4 IVH'...but sort of in the same boat! If you wanna chat or anything im here, although still pretty new to all this myself!xxx

 

[xxClaire_24xx]

Hi Ellie is still to be tested for cerebal palsy in her legs but she has it in both arms but her left side the most, we have physio and attend hydrotherapy, have they said what percentage the LO has xx

 

[EmSmith1980]

We haven't been given a percentage. Should we have? We have a community paediatrician appointment on Jan 16th and see community physio again on 6th Jan, so will ask many questions then. Although I'm not sure what to ask. Any pointers? Thanks ladies. Xx

 

[xxClaire_24xx]

We haven't been given a percentage. Should we have? We have a community paediatrician appointment on Jan 16th and see community physio again on 6th Jan, so will ask many questions then. Although I'm not sure what to ask. Any pointers? Thanks ladies. Xx

well we were told Ellie had it in her arms but like only around 23% not sure its actually a medical measurement but think the dr was just trying to explain it on scale if that makes sense x

 

[EmSmith1980]

Thank you, I will ask the physio next week what she thinks. Gosh it's so much to take on board. We were told Anya would be very lucky if she isn't severely mentally and physically disabled, before she was discharged from NNU, as she had a pool of blood sit on her brain and basically rotted part of her brain away (this is how they explained it to me in simple terms, lol). I'm just grateful we got to bring her home, she was only given 15% chance of survival. And so far she is nowhere near as bad as they first thought and have said her brain has done a wonderful job of rewiring. xx

 

[xxClaire_24xx]

Thank you, I will ask the physio next week what she thinks. Gosh it's so much to take on board. We were told Anya would be very lucky if she isn't severely mentally and physically disabled, before she was discharged from NNU, as she had a pool of blood sit on her brain and basically rotted part of her brain away (this is how they explained it to me in simple terms, lol). I'm just grateful we got to bring her home, she was only given 15% chance of survival. And so far she is nowhere near as bad as they first thought and have said her brain has done a wonderful job of rewiring. xx

yeah we are the same we are very lucky Ellie is here so her massive list of problems are small to us

 

[BabyBoo36]

We were once told by a sonographer that Freya wouldn't do anything (she has SB meningocele), but so far she has met all her milestones on time or early! Keep hopeful for your LO - it's amazing what they can achieve! x

 

[EmSmith1980]

I'm staying positive. We did throughout her 5month journey in NNU and it worked. She must have felt our positivity. I never let the though that I wouldn't take her home enter my head. If I had done it would have felt to me that I was giving up on her. That is something I will never do. xx

 

[ella n girls]

hi my daughter aged 2 has hemiplegia cp , she had a grade 4 ivh also if u want to talk inbox me there is a briliant group on facebook for moms of hemi children x

 

[EmSmith1980]

How is your little girl doing? Could you possibly point me in the direction of the Facebook group please? Xx

 

[angelstardust]

I wonder if its the same acebook group I was going to suggest?

I have a 6 year old boy with right-sided hemiplegia.

 

[EmSmith1980]

It's been a few months since I started this thread, and Anya is now 18 months actual. She has come on great since seeing the physio every two weeks. She started sitting unsupported at 16 months, yippee. She isn't crawling yet as her Hemi hand tends to get stuck underneath her, but she is managing to get onto all 4s in the crawling position. She is also able to stand holding onto the couch to support herself. She is back at the NNU for her second last appointment in august and the physio is hoping she will be able to take a few steps by then. xx