Parents of children with CP

[jilted]

Hi, I hope you don't mind me posting and asking questions without having a diagnosis or knowing anything for sure.
Ds is nine months and we were having some concerns about some of his behaviour. He had an EEG for infantile spasms but that came back normal. Basically I've been told he's fine with no more follow up. They have put his odd behaviour down to 'being a boy!!' (I already have 2 girls)
My first question is did you just know that something was wrong?
Some thing keeps niggling at me though that something is not quite right but nobody seems to be taking me seriously. Everyone keeps saying 'oh, he'll be fine, he's just taking his time, boys take longer etc....

Anyway, I first noticed at about 5 months when he was sitting in a Bumbo, his head kept jerking side to side. I just put it down to poor neck control. A bit later he started throwing his head and back back forcefully when being held or sitting. This was a repetitive thing. He still does it now.
It was when he kept doing this I took him to the GP who thought 'cerebral irritation' and sent him for emergency eeg. This GP I felt was the only medic who had taken me seriously until now.
Once t the hospital they did the eeg which came back normal.

In his 5 minute appoint the registrar checked his 'development'
She wrote that his tone was 'variable but equal in each limb' she also wrote that he didn't have any 'righting reflexes' yet
Other than that they seemed to think he was fine and wrote 'mum thinks h's behaviour could possibly be due to reflux' which s bs because I have never thought that at all. (I have 2 DDS, once who had milk allergy until 1 year old and lots of other feeding probes) ds has never been a sick y baby. He eats well and does not seem to suffer at all like she did. This is all at around 8.5 months now.

I 've also noticed and taken photos of Clenched hands much of the time.
However, he can puck things up and it s not ALL the time. He does tend to eat with his fists.
He has only just this week been able to sit by himself unsupported for any length of time, he still often throws himself back though and bangs h's head hard if nothing behind him so I won't leave him yet.
He does not try to catch himself when falling.

He is not attempting to crawl or get up yet. He can roll but most of the time he just tries to roll onto his back where he s happier.

He can sit/stand in his walker but when I feed him he won't stand still. He keeps jerking about so s hard to feed. (I can't remember if my other two did this or not, maybe its just excitement?)

When he has his periods of throwing himself back, he is obviously irritated, cries ect. He is the same in any position I try to ut him in.
During these times I noticed him staring, picking at his clothes and just other little things.

He stares at ceilings for ages?! He does these strange mechanical like movements with his fingers.

Sudden jerking movements when startled.

Now IS has been ruled out, I was wondering if it could be mild CP?

Ds was very very ill at 4 weeks and put on a ventilator for 10 days.
Sometimes I wonder if I am over reacting but I can't help stop worrying sodthing isn't right.

Children who have had meningitis as newborns often show motor or behavioural or development problems as the grow. If that was the case you need to return for some follow ups and maybe an MRI scan.

Hello Jilted, I would say if you have any niggling feelings trust your instinct, and make yourself known to the doctors, GP until you are listened too. I believe as a mother, we know if there is something wrong.

good news that IS have been ruled out.

I had a feeling very early on that all was not right with dd2 and I was fobbed off by the doctors, told I was over analysing and was wrong to compare to eldest dd who was full term. But I knew and unfortunately I was right.
Dd has CP. The early signs were tight fists and awkward hands. At follow up appointments, told she had varying tone, going from normal to high tone in all limbs. She would stiffen when being fed. Liked to stand. Everyone would comment that she had strong legs but I had read this was a red flag. She didn't hit any motor skills, sitting, rolling until after her first birthday and she would throw herself back (an extensor pattern).

Have you been referred to physio, I believe a request can be made by HV? And are you being followed up after his period of sickness in hospital??

Agree you should ask for a referral to a paediatric physiotherapist and trust your gut instincts

I'd agree with the above, trust your instincts & go back to the GP. I think getting an MRI & physio sound like good ideas. It might be easier & quicker to see a physio first, they can do an assesment & decide if they think it could be CP or something else & refer you from there. Good luck.