mild cerebal palsy or developmental delay??????????????

[kathylee0]

hi 1st time on this web site,been reading a few messages and i notice a few of you with kids that have cp.i'd like to tell you about my ds and our predicament-
in pregnancy it was picked up that ds had pilmanary stenosis(sticky heat valves)and slight swelling of the heart-which is normally a sign of downs.i had an amnio and numerous other tests,but they could not find anything wrong,this left doctors puzzled!.at 6 months old gosh told me his heart was functioning normally and to take him home and forget about it,which we did and his heart is now fine(just a very slight murmer).
at 7 months old at his 7-9 month check hv noticed a stiffness in his legs when doing the clicky hip test.we were referred and told he may have cp.he had an mri scan,and at 14 months old we were told he does have mild cp.
then out of the blue a few months later we got a letter from gosh saying the had viewed ds scan films(2nd opinion)and they thought them to be normal-confused?-we were.
ds development as follows;
still not sitting without support until 11 months.
did not bear any weight on legs until 14 mths.
if supported at 16months could take small steps,but we had to tap the back of each leg,as if to prompt him what to do next.
did not learn to turn without falling in sitting position until 18.
at 19 months he learnt to bum shuffle.
he is now 23 months and can take steps if you hold his hand,but he has no balance,and cannont stand without support.
he has never crawled, in fact he still cannot roll over, and is unable to pull to stand.
his legs are very strong and he can move them in any way he wants.
i do sometimes notice tight abnormal muscle tone in his inner thighs,especially when tired or very upset.
his peadiatrician thinks it is unlikely,that he has cp,and thinks he has developmental delay-i could have told him that!
he has phisio every week and they seem to think he has a problem with confidence-but i am not so sure.
god!!i hope i havent sent you to sleep!!
has anyone had any similar experiences with mild cp-what do you think!!!!!!!!!!!!!
thanks, i feel much better just for getting this down.

Hi Kathylee , welcome to Mumsnet. Obviously I can't say what is happening with your ds, but I can tell you my experiences. Dd1 was born also with pulmonary stenosis and an atrial septal defect, as well as hydrocephalus . She was developmentally delayed too, didn't crawl until she was 15 months, and walked just after her 2nd birthday. She was lucky and managed to avoid an op for her heart, despite being told she would need one, as it healed up on it's own, but like your ds she still has a slight murmur, although it makes not difference to her lifestyle (she's 11 now). She also managed to overcome her hydrocephalus and developmental delay, and is on a par with her peers, with in fact a high iq (not that she shows it sometimes!). A swollen heart is not only a sign of Downs Syndrome, as dd had this when she was only a few months old. It can be due to many reasons. I was told that her heart would always be like that, but tbh if it still is it hasn't hindered her at all, apart from being quite sweaty when she was younger.

My fourth baby (and my youngest)is now 2 and he was diagnosed with cp last july aged about 161 months, although I had a feeling he had it from much younger. He is borderline moderate/severe, and like you has physio every week. He is still unable to sit properly unsupported and definitely couldn't be left unattended. He can roll over, but he leads with his head rather than his legs, he commando crawls, and can bunny hop on all fours once or twice before giving up. He has no standing balance and cannot walk. My son is a spastic diplegic, affecting his legs, which are every tight, but he is also low tone in his trunk, which causes him to curl over, leaving him with a curved back. He also has a squint and wears glasses, another side effect of the muscle tone and cp.

There is often a dispute between developmental delay and cp especially if the symptoms are mild, as the two can be so similar. In fact some docs now like to call cp global developmental delay. Personally I disagree as it infers that cp is something that could get better. It might also be useful to know that children with cp often show signs of white matter (brain damage) on mri scans, BUT not always. If a scan looks ok it doesn't always rule out cp, but white matter means it definitely is. Cerebral palsy is quite hard to diagnose because it is so different in each child. One can show massive signs of brain damage and have hardly any symptoms, and others (like my son) can have mild brain damage and big repercussions.

I would suggest keeping up the physiotherapy, as it will help him regardless of his diagnosis, and possibly asking for a second opinion , get him referred to a paediatric neurologist, and ask for the mri results to be looked at again.

I hope this is helpful to you, and haven't sent you to sleep! Good luck.

Lou33 is you DS 161 months!!!!!!!!!!!!!!!!!!!!????

Hehe my delete button doesn't always work! That's 16 months btw.

I knew that!!!!! Hi Kathylee. I have two kids with CP. Ds was delayed too but walked at 18 months. We had to tap his legs too. DD1 didn't walk till she was 26 months and she has overall delays. Can't tell you if your son has CP or delays but hope you get the answers you need

Mieow, while we are stalking each other can I ask you a question?

Does either of your children have problems with controlling their legs at night? Ds has had tremors for quite a while, but they have been limited to just that. The other night though, ds kept kicking out his leg as he was going to sleep, and getting quite upset. It suddenly occured to me that he was not doing this by choice, and I had to hold his leg still and massage it until it stopped,then he calmed down and went to sleep. Just had another similar episode tonight, though not quite as robust as yesterday. Just wondered if this is par for the course or not?

Ds has spasms at night and they tend to wake him up. DD1 doesn't but she is very lively at night and moves a lot, even though she is asleep.

hi, thanks for your replies, we are getting a 2nd opinion through ds nursery,they have a pead who visits once in a while,so hopefully they might be able to shed some more light on matters.i know any diagnosis will not make any difference to matters,but its just nice to know-or is that just me being neurotic.when they told me he did have cp i was happier within myself.i knew it was v.mild and what to expect,now i feel up in the air,and start wondering all the time,has he got this has he got that.

I think your reactions are entirely normal Kathylee. I definitely felt I needed to know, and was relieved when we finally got a diagnosis, but also very very sad. It's only natural to wonder what the future will hold.I actually think that a diagnosis is a good thing, because now the correct therapies can be given to the specific areas your ds needs, there are certain therapies such as peto and bobath that are designed especially for children with cerebral palsy.
Good luck with your second opinion anyway.

Mieow, thanks for your reply, do your children actually kick out though, or is it the tremors that ds has had until recently? It's the kicking thing that seems odd to me.

Lou33 just to clarify your mri results. Everyone had grey matter and white matter in their brains. The brain damage shows in the white matter, but white matter does not = brain damage HTH

That is contrary to what paediatrician and neurologist told me carriemac, how come? I was told the white matter is softened brain matter which is damaged, hence it being white on the scan. His diagnosis of periventricular leukomalacia meaning softening of the white matter surrounding the ventricles in the brain.

Do you mean that brain damage can only occur in white matter? I was lead to believe that white matter = brain damaged area.

No, carriemac is absolutely right, lou33. The white matter is the area with the bulk of the nerve fibres (the long processes), the grey matter is mainly the cell bodies (the round blobs at the ends of cells where the nucleus is). Everyone has both, as she says. HTH.

my little boy has special needs,and hasn,t a diagnoses.

cattie,what are his needs/problems?

Well thanks for telling me, I guess I shall have to get the docs to explain it more clearly, they def said that , although they may have assumed I knew certain things without saying so. I wasn't saying you were wrong, just saying that's what I was told.When the neurologist was unsure if ds had cp or genetic sd, he said that one of the ways of finding out was if there was white matter on the mri, as it would mean he definitely had cp, because the genetic sd didn't show up white matter on an mri. Now wondering what he meant!

I have also told that white matter on a MRI= brain damage. Maybe it means white matter in areas were it isn't suppose to be???

Ie: abnormal white matter???

Lou33 what you said about the amount of brain damage hit a chord here, a friends little girl had a huge bleed at birth but has no problems, DD1 has a small amount of damage, a lot less than GOSH expected to see on a child with diplegia but she has a lot of problems and DS has damage in totally different areas than expected to see in a child with diplegia too, which is why he has such a complex form of CP.
Oh well..............

I suspect the words white matter are being used to mean two different things. As someone has already said white matter in the brain is the long processes of the neurones. It looks white to the naked eye as the processes are surrounded by myelin which is incredibly fatty (and therefore white). I have no idea what colour this myelin sheath is on an MRI though. I suspect "white matter" on an MRI is something else (ie the brian damage).

That could explain it JImjams. Glad you were told the same thing though mieow, thought I was just being dim!

Brain damage may appear "white" on a T2 MRI scan, CP brain injury may be dated ie weather it occurs pre or post nataly by its pattern on the scan - my DH is a medico legal expert on brain injury BTW

That must be what he meant by white matter then carriemac, thanks for telling us. My ds's damage seems to have occured in utero, another thing to add to the guilt of motherhood!

Oh Lou, dont feel guilty at all, i feel in utero damage is just bad luck but birth trauma leading to brain damage (we had a really difficult delivery of second twin) much harder to not feel guilty about as I think if we had had an elective cesear it would have been avoided

oh no forget the guilt. Not worth it. There's enough to worry about anyway. I feel stupid for giving my ds1 his measles jab too soon after he had had eczema herpeticum, but not guilty- I thought I was doing the right thing. On the other hand the damage could have been in utero- and there i can take my pick- too much testosterone, too much stress (research for all of these). Interestingly a sign of lots of testosterone in the womb comes from the ratio of index finger to rinng finger length. DS1 has onehand that suggests, too much and one that doesn't. So where does that leave me? Reaching for the bottle of wine and not feeling guilty

You're totally right Jimjams - guilt is only destructive I know that really, but... my ds's damage occurred in utero and do i feel guilty about it and the fact he arrived at 28 weeks? too right I do unfortunately.

Interestingly enough I always thought ds couldn't have been injured during birth as my labour was so quick, only 22 minutes, but I read somewhere the other day that quick deliveries can also cause problems as the pressure on the head changes too quickly. Anyone want to tell me it's a load of old tosh ,please? Have had 4 kids all precipitous labours but only my last one has cp.