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1st time here! Anyone help with CB worries please!!

(13 Posts)
lizzy5061 Fri 12-Oct-12 21:12:42

Hi all i have a 8m lb he was born full term but i had prolonged rubtures of the membranes and baby was back to back labour ended up 38 hours both got very stressed the midwife was just about to call for a c-sec when she said im cutting you babys struggling andf out he came a huge cone head blue all over they whisked him away when i finally got to see him he was in SCBU on c-pap They said he was completly flat and took 6 mins on cpr to revive him and he may not make it. Cut a long story short he was fitting constantly so the put him on phenobardiol and sedated him over the folling 2 weeks he came round breathing on his own and they slowley started weaning him on the ffitting meds which he had stopped ffitting. The docs never told me why he was fitting he had a lumber puncture and a MRI scan whild in there both where clear as ffar as they could tell but said brain was still swolled from dificalt birth. He stayed in scbu for 3 weeks he came home on no meds etc and never got a reason as to what happend and why etc. Just outpatiant to check his evelopment. hes doing ok everyone keeps saying but here are a ffew odd things iv noticed.

Prefers his right side always picks up a toy with right unless you hold good un
Only rolls on way.
Hes now almost 9 months and still wobberly when sat up.
Hes can bear weight for a second before his legs give way
He failed his hearing test on his lefft side.
Not crawlingf as arms seem very week
Constantly kicking his legs about
when he crys he clenches his fists and they shake.

Just worried that he has got CB doctors refusing to do any tests untill hes classed as "behind" in a milestone anyone else think he has it by the things iv listed? Would a mri show cb now? Anyone with there stories when/how did you nitice your l'o cb so sorry for the huge post just desperate for advice/simmilefr situations xx

Dev9aug Fri 12-Oct-12 21:16:59

Sorry, I couldn't find anything about CB online. Did you mean CP?

lizzy5061 Fri 12-Oct-12 21:47:46

Oh god yes i ment cb Cerebal palsey sorry. x

Dev9aug Fri 12-Oct-12 22:05:39

No need to be sorry, I really can't say whether your Ds has CP or not as I don't know a lot about it yet. There is a support thread for parents of children with Cerebral Palsy Link here. they will be able to tell you more.

My ds2 who was born premature has been dx'ed with suspected CP so I can tell you what support we have been offered so you can go back to the GP/Paed and get referred for these services. I should point out that ds2 was only offered the support early because of ds1 difficulties.

Referral to Developmental Paediatrician.
Physiotherapy
occupational Therapy
Speech and Langauge Therapy

madwomanintheattic Fri 12-Oct-12 22:34:19

Yes, I think there is a chance that ultimately he will end up with a very very mild cp diagnosis, purely because of the fist/tremor issues - I don't think the rest of the gross/ fine milestones are in any way behind, so impossible to tell.

To give you some perspective, at the same age as your ds, dd2 could not do a darned thing. She failed every miserable milestone dramatically and continuously, was tight, spent her time with her hands held in fists, thumb in palm, tucked under her chin, and was pretty much unbend able.

She was not diagnosed until she was two years old, so I think you are going to have be extremely patient. The only thing of concern from your list IMO is the fist/ tremor. The rest seems unremarkable.

It is obviously a worry (dd2 was born term with a fhr of 28bpm, no attempt to breathe, ventilated etc. 5 weeks scbu - at 9lbs she looked like a sham- on oxygen, no suck, gag or swallow reflex) but babies are remarkably resilient. We were told she would not walk or talk. She is 9 now, and has an iq of 142, goes to ms school, skis, walks, runs, goes to brownies, is really a regular 9yo.

She still has cp though. It seems like the scariest thing in the world, but the brain is amazing. Your wee man will be busily building new pathways, and working out better patterns of movement etc. early intervention is key.

An MRI may or may not show brain damage. But without any clinical signs of cp, they are unlikely to bother to MRI. I am betting he had one during the three weeks he was on scbu, tbh.

Who does your outpatients clinic? They will be monitoring and referring on as necessary. Are you being reviewed six monthly? Or less? It's all you need at the moment.

If he starts missing milestones, ask paed for referral to physio.

He sounds as though he's doing really well! Just keep an eye.

madwomanintheattic Fri 12-Oct-12 22:35:45

(Dd2 was loaded with phenobarb etc due to szs. They have near identical history, but your ds appears to have recovered faster to discharge and have fewer lasting effects)

justoutsidenormalrange Sat 13-Oct-12 02:13:50

Shouldn't be right handed till 12-18m earliest. Tell dr that you heard its a major red flag needing assessment for possible mild CP

justoutsidenormalrange Sat 13-Oct-12 02:19:49

Early intervention

madwomanintheattic Sat 13-Oct-12 14:59:12

(I would also say that him being prepared to pick up a toy with his other hand if you hold the 'good one' is a brilliant sign by the way. Dd2 wouldn't, couldn't. She would literally lean her entire body right over/round and use the other hand, or scream blue murder. That is the sort of exercise the physio will do, anyway, so you are doing the right things.

They are usually obsessed with midline stuff for the first couple of years. If he gets the toy in his weaker side, does he/can he pass it to the other hand? Ay signs of him using his hands together at the midline? (Disclaimer - can't remember what the normal age for this is. I just know dd2 had to work on it for three years lol).

survivingautumn Sun 14-Oct-12 20:48:59

Hiya! Totally agree about the early intervention and physio for the signs of CP that you are seeing. It could all resolve, or he could need ongoing therapy in order to maximise his development.

My dd had a similar birth with seizures and has very mild CP. Physio has been invaluable and we were also followed up by a neonatal paediatrician for 2 years. I really hope you can get him into the system for any help that is needed with his development.

It does sound as if your son suffered a hypoxic event but if his MRI was clear and he recovered well in SCBU those are good signs.

survivingautumn Sun 14-Oct-12 20:51:13

I think by age 6 months for bringing hands together and 9 months for crossing midline/passing objects hand to hand iirc!

lizzy5061 Sun 14-Oct-12 21:06:44

My post. Hes recently been discharged from Phisyo because he would not look to the right hes all fine with that now took a while! Im having 6monthley appt with his pediatrtion from scbu hes said he has high risk factors for CP from birth issues and showing a ffew signs but nothing that hes worring about. I know itf sounds demanding and horrfible but id just like to know asap so i can help my baby if he has got it. Just seems although the docfs and hv are blowing it over there shoulder and not listening to me! x

madwomanintheattic Sun 14-Oct-12 21:49:21

We all want to know ASAP, but ultimately there is no 'test'. Cp dx will usually be made from clinical presentation, and as he is not showing any clinical signs at the mo, he won't be dx.

Paed consultant will refer further if there are new delays. Until then, you have to play the waiting game.

Lots of children with cp have clear MRI scans. Some of them are very compromised. Lots of kids with quite severe damage on MRI are actually extremely able. An MRI might give you a guesstimate, but it isn't conclusive, and certainly not a predictor of future ability. (Dd2's second MRI at 4 showed extensive damage, and the neuro was extremely surprised that she walked in and had a conversation.)

If there are no current clinical signs of cp, I very much doubt they will 'waste' money and resource on an MRI.

He sounds as though he is doing great. Brain plasticity is an amazing thing for tinies. 'Wait and see' is a horrible game that too many parents have to play, but often it is the only reliable indicator of dx or future ability. I wouldn't want paed's to rush into premature dx. For the two years I was waiting, I was desperate to 'know', but I now fully understand why they waited.

For us, the dx gave no picture - we knew she had cp, (spastic quad) but tbh the label was meaningless. Her presentation changed from extremely tight to very low tone, with fluctuations, and even at 4, we had re-dx to athetoid cp (why we asked for second MRI). She was a completely different kid from our expectations up until 2yo.

Even an all clear at 8mos would be meaningless. It would just be a guess, and could be rescinded with a dx at any point in the future with new symptoms.

Even now at 9, I have no idea what she will be doing as an adult. Cp is such a huge spectrum that even now we play wait and see. You pretty much deal with what happens next, and do your best to keep an eye out for changes and any issues, with referrals along the way as necessary.

Stay strong x

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