baby with spastic quad cp

Toby1

Hi I just wanted to see if there was anyone out their with a similar experience who can give me some hope.
My baby was born 41 weeks 2 days but suffered moderate HEI. The lack of oxygen caused brain swelling and seizures on day 2. He did not have a gag reflex, all limbs were stiff and MRI showed brain damage.
We were told he was likely to have spastic quad cp.
He is now 11 weeks old. His gag reflex developed at 18 days old so is now feeding well orally.
He still has slightly stiff limbs so has been officially diagnosed.
However I dont always see what doctors see.He started smiling on time at 6 weeks. Hearing and sight normal. Hips and spine normal. He is very alert and bright, follows objects and recognises faces. He has good contol of neck and very strong. Coos and makes noises. His limbs do not seem overly stiff to me and moves them well. He has started to grab things and does well during tummy time, rolls over etc.
My only concern is he is slightly better with left arm and keeps i index finger curled when grabbing toys. Does this sound like anyone elses child? Any advice greatly appreciated.
Thanks

FRoggle

Hi my son has spastic quad CP, it's also worse on one side than the other like son. How old is your son? My son is now almost 5.

Curled fingers are a sign of increased tone - my son was very fisty, and his index fingers were curled inwards almost constantly as a baby, even when his hands were open(ish) to grab at toys. Does he pass toys from hand to hand? And does he cross the midline to reach for toys?

Toby1

He is only 13 weeks old so although he bats at toys and tries to grab them he is not yet fully holding onto toys. He does hold his hands togehter and has started reaching for toys in front of him while on his tummy. He is very bright and alert and his tone only seems slighly increaed. He kicks both legs out very well and moves both arms well. He has started putting his hand to his mouth and tries to chew on toys when put we place them in his hand (left better than right hand). I just dont know what to think. He is also giggling and rolling over both sides from front to back. I pray everyday that it will be mild and he will learn how to live a normal life.

All the doctors have said is that he is showing enough signs to be diagnosed with cerebral palsy affecting all four limbs, legs more affected than arms and right side more than left. But they cant tell me how severe it will be.

They have also said it is looking promising for him not to suffer learning difficulties because he is so far reaching his milestones and is very bright and alert. However he is still only 3 months old.

How is your son doing now?

Thanks

mollymoobarnes

Hiya

Our little boy Tom is almost 3 and had spastic CP affecting all 4 limbs. Your son sounds like he is doing really well - good head control, good limb movement, doing well playing on his tummy - these are all really positive. My son didn't find lifting his head easy to start with but he was always able to bring his hands together and cross the midline although his hands were always so fisty that we would have to pull his fingers open to get anything in them.

Our son is also cognitively unaffected as it sounds like your little one is. Tom's speech is great, he's developing normally in his cognitive functions and is attending a mainstream playgroup with his twin sister. Physically though, he is still unable to sit unaided for long without falling over, he can't crawl yet and he cannot stand or walk unaided. It sounds terrible but I promise you, he's really happy, motivated, funny and tells me he doesn't mind that he has Cerebral Palsy - he says 'Don't worry mummy, I'm alright'! Whatever challenges your son faces you will pull together and face them together - a positive mental attitude goes a long way to helping you through and celebrating all the little steps rather than concentrating on all the things he may not yet be able to do.

I wish you lots of luck and hope that whatever difficulties your son has they are mild. Tom was undiagnosed until he was 1 - the doctors told us he had colic - so we had no way of understanding the difficulties we could see he was having. Because you do know that there is likely to be problems you will be in a better position than we were to spot difficulties early on and get help. I recommend conductive Education very highly and this is something you can start doing relatively soon to help your little one work on his areas of difficulty - plus its good fun, a good place to meet other families in similar circumstances and give your little man a circle of friends who have the same sorts of physical difficulties. Scope has a list of providers and usually sessions are free.

Maria xx

Toby1

Hi maria

Thankyou so much for your kind words. Toby is slowly improving. His head control is that of a 2-3 month old. He is now 4 months. He still grabs but you can see his movements are stiff and rigid. However this does not stop him. Sometimes he is so relaxed his movements are perfectly normal. Usually for a short time after he wakes from a nap. He is very intersted in my face at the moment. He is alert and interested in the world around him. He smiles, giggles and babbles and is just so beautiful. He has also discovered the joy of bouncing. Even bending his own legs to push himself up. My main concern is his arms and neck/back strength but so far physically only a month or 2 behind.
Your little boy sounds gorgeous. It gives me hope so thankyou.

Tracey
xx

mollymoobarnes

Tracey

Sounds like the little man is going great guns! I would say that only being a couple of months behind is a really good sign that things are looking much more positive for him.

I watch Tom sleeping to see his arms relax - its so lovely to see him so free.

Maria xx

Sam_Toucan

Hi Tracey,

It sounds like your son is progressing really well. My son is a similar age to yours, however was born 5 weeks early. He has pretty good head control (almost as good as his sister), but apart from that is not really developing. He has stiffness in his legs, arms and trunk not so much however he also suffers from muscle spasms which make eating and sleeping difficult. He doesn't watch faces or objects, however hears well and recognises my voice. It takes a lot of effort to get a smile out of him, but it's worth it when he does!

Sam

mollymoobarnes

Sam, that's how Tom was. He was in pain due to spasms in his tummy ALL the time. He swallowed loads of air when he fed, either from me or from a bottle and HOWLED all day and all night. It was so distressing. It took a thickener in his milk to slow the milk flow down so he could control the flow better to help him get past that stage and he's a really happy, clever, smart and funny boy now. I waited ages for smiles, eye contact etc but when they came they were so worth the wait. Thinking of you Sam - I can still get cold sweats thinking about how hard those early days were. It was made even harder by the fact I also had to be mum to his twin too - I frequently prayed that I would grow and extra pair of hands!
Maria xx

Toby1

Hi Sam and Maria
Hope your little ones are doing well. Sorry it has been a while since I have replied. Toby does not have spasms but does swallow alot of air during feeding. He is on omeprazole for reflux which has really helped but still very windy. He is almost 6 months now and on solids so he only needs 6oz of milk now per feed. No thickener yet as he is improving although a swallow study is being arranged to be safe. He is still hitting milestones. Rolling front to back quite easily and rolls onto his sides. We still have an issue with his index finger so when he goes to grab his toys i stroke the back of his hands to open his fingers out and he is then able to pick the toy up on his own. His feet turn in and toes flare out when he is excited but again i tickle the outside of his foot to release the tone. He is learning to sit but flings his body back quite alot and he loves to be on his feet bouncing, walking and trying to climb (supported by me obviously). I am still watching for signs of athetoid as that area of the brain was damaged but so far no sign. I think he seems to be heading towards a diagnosis of diplegia where the legs are affected and midly the arms. Intelligence normal. He is gorgeous, nosey and very very alert. He is still very young so the worry is always there but I am very proud of him

Tracey xx