CP?

forgoodnesssake

Not really got one side better than the other though there are differences, particularly with legs.  Not even sure if he's right or left handed but he has pretty poor hand function anyway. 

He did make some noises from about 5 or 6 months but never babbled and we realised that he didn't have enough mouth/tongue control for speech so to cut a long story short we started introducing symbols and some signing (but hands aren't great for that) at about 15 months and essentially he has never spoken at all so uses alternatives like spelling and a computer based communication aid.

I'm sorry if this all sounds a bit negative and alarmist; not meaning to and in a way this is running before you can walk...but I know it's very hard as a new parent and looking too far into the future can be a very scarey thing...

Libby_Alumni

Hello @Qwerty99999, 

Thank you for your comment - it sounds as if you're going through quite a turbulent time at the moment, but please take some reassurance in the fact that you and your baby are supported by various medical professionals and they are aware of your situation/thoughts

For any new parent, it can be a challenge, as life changes and you as a parent have to accordingly adapt to your child's needs. It's a big transition in life and I wondered if you were receiving some support yourself from family/friends? It's important to have a good support network around you, so you can share these things with them and get their feedback too. With that being said, has anyone else noticed your concerns? 

Just to let you know that we are here for you, and if you need any additional support, then please reach out to us, here at Scope

Take care now and we will speak to you soon.

Libby

Qwerty99999

forgoodnesssake said:

I meant to say…… did his legs scissor much? 

Qwerty99999

Oh and also, what was he like while sleeping? My little one has these movements in her arms as she’s falling asleep and eventually her hands/arms will go relaxed when she’s in a deep sleep. 

She seems to wake in pain?

Adrian_Scope

Hello @Qwerty99999 and a warm welcome to the community. 

I don't have any personal experience with CP but I do have 3 children, some of whom have additional needs. 
With our first, we were convinced quite early on that she had difficulties with her hips, but we were brushed off each time as neurotic new parents, so I can empathise somewhat with what you're going through.
Having a new baby plays havoc with our emotions and lack of sleep certainly doesn't help! Then if you add extra concerns over your little one's wellbeing and a battle to even have medical professionals listen to your concerns - I know I would be feeling overwhelmed

You sound like a very caring mum and it's great you're being so proactive in trying to find the right support for your little girl. 
Can I ask how long ago it was that you saw the paediatrician and physios? 

forgoodnesssake

His legs scissored a bit especially if he tensed up.  His sleep was a nightmare for years!  He was very uncomfortable (tight hip flexors among other things, and possibly reflux) and so took hours to go to sleep and had to be held, flexed in the right place and/or sort of jiggled up and down or his legs gently shaken (reducing spasm probably) he then woke VERY early, clearly still tired, and rarely slept much at all during the day...

Qwerty99999

Hey! 

Another thing I’ve noticed is my little one on her back sort of writhes like a snake or in an S motion, mainly when waking her from her sleep in the middle of the night.. 

Did your son have this? Is that chorea? Or just normal? 

Qwerty99999

forgoodnesssake said:

Sorry. One more question. What was your son like at around 4/5 months? Was he able to roll, and grab toys etc? Was his head control okay?

forgoodnesssake

Really can't remember about the snaking motion you describe, sorry.

At 4/5 months his head was OK but quite wobbly (still is up to a point) He began a crude grasp of things at about 6.5 months (from lying down) and he was just able to roll onto his front (but not back again) at about 5 months.  I've just checked in the baby book!  Not a lot in there but a few milestones.

Qwerty99999

Yeah, she can hold her head up without support, but it’s not smooth…. So like sometimes turning from side to side isn’t smooth, feels a bit jerky. Not all the time. Just I notice it. 

Your son done well to have a pincer grasp at 6.5 months! And rolling at 5 months. She makes a grab for toys where ever they are infront of her and can pick them up. Sometimes she holds objects far too heavy for her!! 

She wants to now be stood up and bounced on my lap. She smiles and laughs more. Started smiling at 4 weeks and laughing at 15 weeks. 

When she sits she will not save her self at the sides, and will throw her self backwards. So not sitting unaided. 

It’s her posture that concerns me, what else would cause Inturning feet, and like rotated arms with palms facing out. That’s what I can’t get! 

Like in the pictures above, picture 1, is same age baby sitting what I would call typical…. My baby is picture 2, and her legs just seem tighter, they won’t go further out at the hips?!  

Hmmm I dunno. What you thinking? 

forgoodnesssake

HI, just to clarify...my son didn't have a pincer grasp at 6 months...it was a very crude full hand grab.  He has never had a pincer grasp....  Sorry I can't really comment on the photos, or on what you are describing...it really does need someone with more professional knowledge.  best wishes

Qwerty99999

Ohh sorry! I googled crude grasp as I wasn’t sure and it came up with pincer. 

Sorry! 

Nice to speak to you jenny. I’m in the Liverpool area 

Qwerty99999

@forgoodnesssake hey guys, just wanted to mention also, my waters went at 39 weeks, and they done 3 sweeps when I had strep B! 

Now I’m wondering whether that my little one has CP from Chorioamnionitis or having to fight an infection caused cytokines. 

Am I being unreasonable or would you mention it to health professional? 

Alex_Alumni

Hi @Qwerty99999

Am I being unreasonable or would you mention it to health professional? 

I think if it's causing you concern there's no reason why you can't speak to a health professional about it. 

forgoodnesssake

@Qwerty99999, these are now such specific, very technical, medical queries you have so you should raise them with your paediatrician. 

I don't think anyone on here will be able to (or should really) advise you on the possibilities you have now mentioned (neither of which I have heard of ).  I really hope you can get some answers to your obvious serious and stressful concerns.  Take care.  Jenny

Richard_Scope

@Qwerty99999
I think the important point here is that you have concerns and you sound as if you need those concerns addressed by an appropriate person like your paediatrician. It would not be appropriate or helpful for you for people to speculate on your daughter's condition.

Dr Google can be very helpful but also it can add to the anxiety and pressure we feel as parents. I think that I may have shared this with you before but here is some advice about how to get the most out of your consultations with medical professionals