Spastic or Athetoid, mixed or what?

renacahill

Hello My gorgeous grandson was born 2 years ago following placental abruption and was starved of oxygen, had fits and on NICU for 3 weeks. An MRI at the time showed patchy damage to his basal ganglia - indicating athetoid CP.
However at around 7 months the CDC diagnosed spastic quad. The Con. Neurologist disagreed and said he had mild tightness to his ankles and adductors and nothing in his arms ?!

He has had physio, OT, hydrotherapy, portage and lots of physio from my daughter and me since coming home and he seems to have been on an evolving journey since. What type of CP he has is not that important in terms of his therapies, but the CDC wants him starting on baclofen, particularly as she thinks it may help his sleep (v. poor sleeper, wakes frequently for a cuddle and drink and eventually goes to sleep again, not spasms just tired and grumpy) Our physio was not keen as he may lose his head control.

I have read that the true picture doesnt show until the child is 2-3 and we would like other people with experience of CP to see if they can help identify the type of CP DGS has as not convinced with the spastic quad as he has no stiffness unless the CDC undresses him and examines him and then he's like an ironing board that screams!

His head and trunk are weak, but he can hold his head up except when tired. He started at 6 weeks holding his head up but this went! When he is relaxed and watching TV on our laps his legs and arms can be moved in all directions but if excited or frustrated or wants to reach something, he will arch back and go rigid for a few seconds before relaxing forward to get what he wants. His right hand has been balled in a fist until recently (now relaxed and open most of the time) and he has begun to move it towards objects. It goes rigid when he is using his left (the good hand), then relaxes. His left arm can move better and in all directions but is stiff and shaky on deliberate movements as though he is fighting through treacle to get it to do what he wants. His range of movements have improved and seem be becoming smoother with time and practice. He does a little finger twiddling but has no large athetoid movements. In his walker he will cross his legs and go on tiptoes, or relax and do a lovely normal gait movement!! Is this whats meant by fluctuating tone? He has very poor balance and co ordination, improving very slowly.

On a milestone level he can roll over with ease, tries to crawl but trails his right arm (legs look excellent movement wise), can tailor sit and prop (a bit wobbly) sit with both legs outstretched, has taken his weight on his legs since forever but not able to pull up, has no deformities.

Should we see if BIBIC or Brainwave can do an assessment?. I dont think it will affect our physio etc, but I am very worried the baclofen may interfere with his current progress and is a step backwards.

We would be grateful for any help on this with your experiences for children around the age of 2.

Thanks. Kate

hilsflynn

Hi Kate,

My son is just 3, with a not too disimilar story to your grandson, and the description you provide of his movements and nightime behaviour also strike a real chord. Having said that, it sounds like it terms of his gross motor skills he has less issues than my son.

Harry also had a diagnosis of athetoid CP and in those early days of diagnosis I read the description and couldn't see what was being described, but I also know he certaintly doesn't fit any other type of CP. Both Brainwave and his local physio say that he displays low muscle tone (hypotonia) but fluctuates to just above normal when he is excited and putting demands on his muscles. When he was very small I was aware of some spasticity in his arms when dressing him, but as his control has improved I am no longer aware of this, with the exception of when he is having to work very hard to reach and move things.

It sounds like your daughter is doing all the right things. Brainwave has been brilliant for us and Harry, I know that it has certainly helped improve his skills and focus our efforts. They have also been able to offer advice about queries I have had regarding trying certain equipment - whether or not they would offer advice about medicine's I can't say.

I know very little about Baclofen, it has never been something that has been suggested nor that I have wanted to look into. With respect to your grandson's sleeping pattern - again, it sounds very similar to my son's. Although we had brief periods where he was sleeping through the night, his typical behaviour was to wake for a drink and cuddle during the night, sometimes only once, other times more. When this didn't seem to be stopping coming up for his 3rd birthday I became concerned that it may be related to the CP - but I was relatively convinced that unlike a typical athetosis CP description, he was totally still at night..so my first step was to treat him as a 'normal' poor sleeper and take it from there. I have to say, it has worked. Where previously my attempts at tough love to get him to sleep through had only ever worked for short periods..withdrawing the water at night and cuddles (unless I think he has had a nightmare or is ill) but still going in and patting him gently to reassure him for a minute or two has worked a treat. It tooks us a couple of weeks but he now rarely disturbs us and I have been aware of him waking but settling himself back to sleep quite happily. Worth a try maybe before trying the Baclofen?

Best of luck to yourself and your daughter.

Hilary

renacahill

Thank you Hilary, what you say is very reassuring and I can see definite similarities between Harry and Elliot. It sounds as though Harry has very similar features to Elli but is more to the hypotonic side. Whereas Elli is able to do quite a good sit on DDs lap with good head control because he has an (approaching) normal tone in a relaxed state, when he gets excited it is more exagerated than Harrys and he gets a hypertonic response! I read today that this is called a dystonic response. It is not dystonia as such, (which can be nasty), because he comes out of it quite quickly and relaxes to get what he wants, but it is something physio expects him to learn to control. It is so annoying tho and we have learned to dodge quick to avoid the head in our face syndrome. Harry's reaching for things and working so hard to control the pesky arm movements - sooo familiar!
DD will look to controlled sleeping in the next few months too. (controlled 'sleeping' not 'crying') like you've done, Elli has had enough to cope with DD thinks - but we see signs of him being able to drop off on his own so she will take it at his pace and if its 3, then so be it. My next door neighbour has a son like Harry. Same birth trauma as DGS but more damage on the MRI. He was very very floppy for his early years but eventually with lots of physio and hard work, now at 6 is walking, running, jumping etc! He is a bit balance challenged and his writing, and fine motor skills are reduced, so hopefully Harry will improve this way. Our physio says its easier to work with weak muscles than stiff ones, but athetoids can go on improving up to the age of 12! We will look into Brainwave, as a friend's son is attending there shortly.
Thank you again
Kate

williamsparents

Hi there, My son at 13 months old suffered an aquired hypoxic ischemic brain injury, he has damage to his basil ganglia and he is now 20 months old. At first he lost his ability to do anything, feed, see, hear, walk, talk, spasticity in all 4 limbs, spasasms all the time, poor muscle tone etc etc he was just laid there... for weeks. Slowly but surely he has regained his co ordination he can pick up and put down and change hands with toys, do shapesorters, roll over from his back to his front and go on all fours, he tries to crawl but flops (and then laughs) he can interact so if i say pass daddy the toy he will pass it to me, hes very bright and alert and laughs/smiles all at the right times. his muscle tone has gone back to normal, no spasticity in any limbs anymore, no baclofen anymore, vision tested and all fine, hearing tested and all fine, feeding is good and no ng tube although he cant take a bottle, my wife feeds liq...uids off a spoon as he struggles to breath, suck swallow all at once. he sucks on his dummy etc fine. Our peidetrician is saying he could have a form of cerebral palsy although from what ive ready William is doing so much now he doesnt seam to totally fit with career athotoid (spelling may be wrong) as hes not got most of the symptoms... my main question is there different degrees of damage to the basil ganglia and after 6 months should his speech and walking have come back and could it ever come back, its only been a short time and hes so determined. Please any help as we are really struggling with this part - We are having extra physion from physio4kids which starts soon and also Phil edge at brainwave has been superb and we see him in January - Interested in any information about the basil ganglia and CP.