Role of MRI and EEG in diagnosing cerebral palsy

[mm22bys]

Hi

I am wondering about the role of MRIs and EEGs in diagnosing CP.

If one or both of these is abnormal does it mean a child has CP? Similarly, if both are "normal" does it rule CP out?

Thx

An abnormal MRI and EEG doesn't necassarily mean CP and also a normal one doesn't rule it out. Confusing or what!
But failrly often, an MRI will show damage in the motor regions of the brain which will lead to CP although the severity can't be told from the amount of damage.
A damaged brain will always (so I've been told) have an abnormal EEG pattern but this doesn't always mean CP or epilepsy.
CP is a motor disorder usually arrsing from damage to the motor regions of the brain.
Clear?

Clear as mud, thanks NMC!

DS2 had an MRI in May that was "normal", and our neuro let us know today that his EEG from last week was "normal", but I am not convinced from things I have read that he doesn't have it.

The other neuro told us not to look at websites until we have a dx - maybe I need to take her up on her advice!

Thx

How old is your son and what is he doing, or not doing that is making you think of CP?
MRI's can miss damage if the damaged area is very small.But there are various disorders that look like CP - poor or no motor development - but aren't.
Some docs also say that an MRI, if the damage is subtle, needs to be re-done at 2. Our daughter had one at 1 week old and it showed missing chunks and huge damage. A recent one (she's now 3) showed all her motor cortex gone, that, with her total physical disability gives up her dx of CP plus her EEG is always abnormal even when she isn't having seizures.
But then she severe.
I reckon mild CP or small areas of damage can be missed.
Has the neuro given you any ideas apart from 'don't read web sites'?

He is 11 months old, and he is sitting, but he is very stiff and weak in the arms. He can barely bear any weight on his arms when he is on his tummy.

He can grasp toys when you put them right in front him but generally doesn't reach for toys. He does have a visual impairment that has been dxed as Delayed Visual Maturation, but we don't know the extent of his vision.

His fists are generally clenched, with the thumb tucked in. He can't do the pincer grip at all.

When he lies on his front his right leg is nearly always bent, with the left one straight, he can do more with his right side than left (can't really do much with his left).

He does bring his hands to his mid-line, and sometimes he transfers.

It is the muscle weakness, the clenched fist, and the funny position with his left side that make me think it's CP.

He had an MRI in May that was clear, and the EEG from a week ago was "normal". He had the EEG because the community ped thought he was having absence attacks (there is a history of epilepsy in the family).

The physio knows something is "wrong" with him, but has said she doesn't think he is a typically presenting "CP child", other professionals have talked about spasticity and hypertonia, noone has suggested he has it but I am starting to think maybe he does.

No ideas from any body, other than doing all these tests, and "waiting and seeing". He has two appts coming up with the neuro, early Nov, and early December.

He wriggles really well on his back, and can scoot around for along time quickly, but I read something that says this uses the opposite muscles to those that are used in crawling etc, and the physio told me not to let him do it!

He can bare weight on his legs, and if you hold him under his arms he will take walking "steps".

He can stand with support.

When you put him on his tummy, it's like his lower body wants to crawl, but for whatever reason (mixed signals from the brain, or muscle weakness or whatever) the upper body doesn't cooperate at all.

My DS had a MRI to check for CP (due to crap birth care/low apgar/collapse when taken out of SCBU too soon, GDD low muscle tone etc)whilst we were meeting all Regs and SHOs that would be involved on Paed Reg told us that even a 'normal' MRI doesn't nec mean he doesn't have CP - as it happens he probably doesn't as it did pick up his problem.

ALL professionals with the exception of our physio talked about the kinds of CP that give stiff muscles and spacicity. Physio was more interested in the (more unusual I think) type that give low musce tone.

2 boys I know that were dx with cp have now been told they have delayed mylination of the brain, one has even been told that you can't have CP in you have dm - but surely dm is a genetic condition (?) and CP a result of lack of oxygen in utero/at birth? See I know nothing.

Good luck in your quest - don't google far too frightening!

Only 10% of CP is caused by hypoxia at birth, the rest is unknown. Unless its really clear they don't like to make a dx until 2ish as there are various genetic disorders and dystrophies that look the same.
It sounds CP'ish to me but I spose a doc wants to rule out anything esle first before you get a defintae diagnosis.
You can still get DLA though, even without a dx.

mm2boys
ds2 has mild CP spastic diplegia so his legs mainly are effected but as a baby we didn't notice any problems with his legs but his arms seemed to be effected.
He was premature & has GDD & low muscle tone in his upper body. He just simply didn't have the strength in his arms to move. most of the time his arms were by his side, his neck muscles were overstretched by poor posture in SCBU. we had to start by building up his neck & head control & then stimulating his hands & arms to get him to reach.
DS2 wasn't dx'd with CP until 2.5 & was dx'd purely by neuro response tests & examination.
We didn't opt for an MRI because of chronic lung disease & the risk of GA.

even without a dx the physios & OT's etc treat the child as they present so hopefully your ds should get all the support until they decide on a dx.

I am starting to think that the GP may have known very early on - he wasn't fixing on objucts at 3 months, and he referred him to a neurologist (why not just an opthalmologist?)

I have seen the GP three times in a week now and while he hasn't said in so many words I think he's been breaking it to us "gently".

I think the neurologist has bee falsely optimistic and not honest with us.

I guess though he is ruling everything else out. I am thinking it is actually bad that all the other tests are coming back normal....

We have very little therapy in place, though, just some physio, and he's had one OT session. The CDT are underresourced and staffed though, and they have left us in a black hole.

Don't know where to start to be honest....

Do you want ideas for physio or OT while you wait? Getting services can be a nightmare. DD has severe spastic quadraplegic CP and she still only gets 1 hour of physio every 3 weeks, no SALT and OT once every 6 weeks. No vision therapy despite severe CVI. I've been fighting and hassling for 3 years while they just let her go blind.
Have you seen a paediatrician? I'm assuming you have. Maybe ask him straight out what dx he might have in mind.
Mine is usually straight with us apart from a few weeks back when he thought dd had had a cerebral thrombosis (always fatal) and didn't want to tell us until the MRI the next day. I'm furious because if he'd been right she might have passed that night and I'd of gone home and not been with her. I'd rather have spent the night cuddling her and found out he was wrong to be honest.
But say if you want any ideas before I bombard you with some
DD can kick her legs and even stand when held but has no tone or movement in the upper body. Her hands were fisted but now they just dangle off the end of her arms. So she also has dystonic and mixed tone CP (she has a whole weight of labels)
Your physio will treat him as he presents so stretch stiff muscles and do range of movement excercises to keep everything moving and balanced.
Are you getting DLA?

tbh my GP ahs never commented on ds2's dx & only ever really dealt with anything medical.
But his paed who is in charge of his overall care is brutally honest & this has only ever been helpful & is very good at putting pressure on services to get therapy.
TBH the best advice given to us by our physio when ds2 was born was to play with him, allow his big brother to do all the normal rough & tumble.

He is seeing a physio reasonably often, but I don't know how much I should be doing at home between appointments, and what I should be working on (she has been working with him on a ball, and he was progressing till a week or so ago, now he fights it all the time when he is on his tummy. Today the physio concentrated on him rolling, and playing while sitting).

He saw an OT a couple of months ago and she sent through some ideas, and I feel that as his gross motor skills are better than his fine motor that I should be working on "playing" with him more. I don't know how though, and how much.

I looked at the SCOPE website (or forum actually) last night, and it did come clear to me that if we are to have any hope of helping him he needs a therapy plan. Even if he is not actually seen by a phsyio or OT that often, I need to know what to do at home!

What other websites / organisations are out there? He had some blood taken today, and there was a sign up about the Centre for Interactive Education (or something), who else is out there?

He has been seen by GP, commnuity pediatrician, consultant neurologists, and OT and physios, but noone has said categorically that he has it, but they (physios and GP, not so much the neurologist) do talk about the spasticity. The physio told me though that spasticity is just a generaly term for "stiffness". The GP said to me that he would be frank with me, and said that I can expect a dx, but I don't know of what. Noone has categorically ruled it in or out, and noone other than the private physio has even mentioned it (the physio has said several times that he doesn't present as a "typical" CP child, but thinks his arms are very stiff).

DH did email the GP and neuro today specifically about CP, to say it has been inferred, and he asked if it has been ruled in or out. I wouldn't expect any "professional" dr to give a dx over email though, so I am not sure what the exact point of his email was!

If you have any OT ideas or resources, they would be hugely appreciated.

We are not getting DLA, I don't know how to apply. I haven't looked at the forms yet (denial?) but I don't really know that I really do anything more for him at the moment than I do / did for DS1.

I am sorry to hear about all your and your DDs issues and poor treatment on the part of it seems everyone. I don't know how you keep going. Part of me hopes this will just go away, but I am starting to accept it's not going to. I just wish we had a plan so I could be doing some (at least) of what we can for him.

With dd I give her a massage every morning as she really stiffens at night then stretch her arms and legs and put them through full range of motion. We then sit her on my lap and rock her side to side and back and forwards to strengthen her head control (she can only hold her head up for a few seconds). I also drape her over and exercise ball. OT type stuff realy is just playing. DD has no arm function so I lie her on her back abd lift her hands up to touch to toys and ask her to do it. She'll twitch her arms in response so lots of praise. I touch her hands to everything so she can experience hard/soft/warm cold etc
As you son can use his hands just encourage him to play, pick things up, reach for stuff, clapping games. Probably things you are doing already.
As for how much, as much as he'll tolerate. He'll probably be thrilled having mum to play with all day
DLA forms are a learned thing. If your child requires more help and attention than a child of the same age that doesn't have any problems then he will qualify. As your son does, then he will. Its just the care component under 3 years of age but you could get about 50 pounds a week plus Carers Allowance of 45 pounds a week (CA is taxable and you only get it if you, as the carer. earn less than £90 a week). Send off for them (call the DWP I think) and ask for advice on filling it in. They will backdate it to the day you ask for the form so asap! Your son obviously requires more help and attention than a NT child so you are entitled to the money.

Like needmorecoffe ds2 gets stretches in the morning, we do them in the bath, a bit time consuming but we have found he loosens & gets the most benefit in the water. Just ask the physio to show you just a few basic stretches, anything that she thinks will help.
We stopped with ds2's gymn ball work when he decided he didn't like it anymore, he was fighting & stiffening against it so wasn't really doing much good.
If he stops enjoying an exercise we just switch to something else, sometimes we are able to go back to an old exercise a few weeks or months later.
As far as OT our first problem was finding him a chair that gave him enough support but left his arms free, but OT should help with good seating etc. First we would place his hands on toys & literally show him how to hold & play etc & very gradually we just reduced the amount of physical contact so fortunately for our ds just stroking the back of his hand was enough to stimulate & remind him that he needed to make a movement to reach for whatever he wanted.
Obviously each child is different but I agree you do need a plan of sorts, I believe portage are fantastic at setting very achievable measurable plans & its more about what you want rather than physio & OT text book stuff, not that i'm against physio & OT ours have been fantastic.
I hope you get some answers soon.

I got a surprise phonecall this afternoon from the OT who is going to come on Monday morning. I have a suspicion this initial visit will be a talk-fest (like everything with the CDT has been to date, they have done nothing but give us a devastating dx...nothing at all to actually help DS). I hope she does have some ideas, and that we won't have to wait too long for the actual work to start.

When the PT and HV came on Monday they told me DS has been referred to Portage, and depending on whether OT can give us any update I will phone HV to see if I can chase things up.

DS is actually generally lose in the mornings. PT today suggested I massage him - I think she wants him to experience different tactile stuff.

He's going off ball stuff, but when we leave him on his tummy he does summon all his strength sometimes and lifts his head. But I am finding more and more often I can't force him - he just puts his legs in the crawling position and starts crying.

How many hours a day do you reckon you put in to therapy / play? How do you meet everyone else's needs? (One of my major concerns is the impact of this on my other DS who's 3 - he's already gone from nursery 5 mornings a week to 5 full days (well 9 till 4).)

I have 3 other kids and it has been difficult. But given that dd needs holding from 8am when she wakes to 10pm when she sleeps we just incorporate it into the day. DH had to give up work to help as I just coulnd't cope by the time she reached 2 (she yelled all day too)
If your lad can sit unsupported he can play while you deal with other kids.
Toddlers play all day and play IS therapy. But actual physo type stuff I probably do 2 hours a day. She is held the rest of the time and read too and has her hands put on everythng we see.

My DS had his MRI when he was just coming up to 6 months old and they found delayed myelination, but then at a later meeting with the neurologist she mentioned that he was moving a bit during the test (as he was awake for it) so they'll do another one next year to look specifically for a lesion which she thinks is the cause of his 'diagnosis' of a 'movement disorder'. When we asked our paeditrician outright if he had CP, he said no as there wasn't a lesion seen on the scan, but the neuro said that there didn't need to be a lesion seen for him to be diagnosed as having CP.

His EEG was also done at the same time, but they were looking for damage done by infantile spasms (?) which he didn't have, and the EEG was normal. Again, the neuro said that a child/baby with CP could have a completely normal EEG. Like needmorecoffee said, the EEG was specifically looking for any damage caused to the brain and they told us that it would always show on the EEG.

For the physio side of things, we just do little bits throughout the day. We do massage about 3 or 4 times a day, but only morning and night do I do the whole body. During the day I do massage on whichever part of him seems to need it. Then we do some touching/tickling as the neuro wanted to develop his sense of touch in that way as he really enjoys it. We're also putting him in his physio chair with a table in front (Leckey stuff)so he can try to use his arms in a more meaningful way. Currently he trying to 'grab' things with his face instead of his arms. He also has his tummy time while watching a baby einstein video as that seems to capture his attention and forces him to lift his head and prop himself up for a good while. Mostly though we do loads of just playing. I put his hands onto different toys/textures, and I show him books when he shows some interest, and I make a game out of the rocking on his roll thing. And we just try to change positions every 1/2 hour or so, or move about to a different room, or go outside for a bit, etc... A bit of a ramble there, but we spend most of the time doing exercises/play in little bursts throughout the day.

Isn't it amazing how they all say different things!! We were told that all CP children have a barin injury, however tiny and that always leads to an abnormal EEG because the damaged area 'sparks' erractically.
Its why our neuro never 'treated' the EEG but waitied for seizures to show up. He's now changed his mind since dd had the slow spike-wave pattern of lennox-gastaut syndrome and we've treated the EEG to stop it developing.
Sometimes i think they should get together to standadise info about CP and brain injury.

ds1 was 3 when ds2 was born & I worried about him being left out (as all parents do) especially with all the extra therapy & appointments. But honestly ds1 has been ds2's best therapist - a 3 yr old naturally plays on the floor so just by playing alongside ds2 he was stimulating him.
DS2 hated being held & touched & was very easily overstimulated so we had to sneak a bit of massage in with a cuddle.
If your ds is hating the ball i'd try giving it a rest for a while (better check with the physio tho) will he tolerate hanging over your lap instead?
Mummyupnorth, ikwym about trying to garb with his head, ds2 would poke his head forward with his mouth wide open as if he was going to take a bite - his arms just hung by his side, it was a slow process but he did learn how to reach & grab. How are his reflexes, will his arms respond as if to save himself if you tip him?
Don't beat yourself up about not doing enough therapy, there just are not enough hours in the day, you just have to do what fits for you & your family & it IS enough.

mymatemax, he has 'odd' movements throughout his arms and hands. The neuro team says that he's developing his own path, but they're not sure what it is yet! He can move his arms... like when something is put in front of him (fave toy/someone's face), he brings his arms up by his chest and sometimes a bit further out, but they're usually twitching and shaking with excitement. He hasn't yet got the hang of bringing the hands forward a bit more. Also he moves his hands in a strange way. They go round and round at the wrist, and he opens and closes his hands repetitively to 'feel' something if it's right next to him.

No, he doesn't use his arms to save himself at all. They were hoping that bringing in the table would help him prop himself up by holding the table a bit... but he hasn't really worked that out yet. He has very low tone in his shoulders and hip area, so usually he just flops when we try to sit him up. His arms don't do much of anything then... usually clasped together and up near his face as he falls over.

needmorecoffee... I just wish they could all agree on something within their own teams! It seems with us that the answer depends on who we ask, and I wish if they didn't really know they would just say so.

ds2 had months of repetitive exercises to help develop his save reflex, he really only started to progress with reaching & grabbing for things properly after his save reflex had developed a little (still not great, he'll land on his nose if he falls & he is 5) maybe it all just happened at the same time & it was coincidence but the repetition of the exercises seemed to help ds2.
It is difficult to assess which things you are doing are helping & which aren't

mymatemax - how did you get a 'save' reflex going? DD (3) with severe CP has no arm use and no save reflex. If she flops sideways (she can't sit either) she doesn't 'save' but 2 years ago she did move that arm a bit.

It never came until after he could sit & he did have arm movement but no functional movements iykwim..
But anyway if I remember correctly??? we did lots of stuff like laying him on a blanket & lifting one side of the blanket off the floor as if to roll him & then pushing him back trying to encourage him to push against the way he was rolling. Prodding to prompt his arms to come in to play &
also holding him in the air (harder when they are heavy) & tipping him to one side looking for a startle reflex(?? again not sure if i'm remembering this correctly) but prompting/prodding his arms to come up.
TBH from sitting he only ever started to improve his "save" once he improved his head lag & control even now it can catch him out & he is mobile.
I know it sounds strange but the more clothes he had on the less reflex he had, even now if he trips over & he has a coat on I know he doesn't stand a chance of getting his hands out!

i'll ask dh when he comes in if he can remember some more.

Ah, so maybe head control and sitting needs to come first. DD has some head control thathas very slowly improved. She can look around for about 20 seconds now before flopping forward. But no sign of any sitting or balance.