Any Cerebral Palsy parents out there :)

[lilesMom]

Oh and with weight gain.
My lo has low tone which caused silent reflux which caused comfort drinking ;-)

 

[nearlythere38]

Thanks girls. The weight gain was not reflective of her intake. She has 6 x 6oz bottles, but she has reflux so vomits a fair bit back up as well. She has some solids as well now, we aim for three meals a day - porridge, fruit and veg purees. Limited in what she can have as she is dairy intolerant. The hope was that she would reduce her milk intake once solids were started but it hasnt, she still wants a bottle after 4 hours. But now im wondering if she is needing the amount of milk to keep up with her weight, so a viciouscircle.

Lilesmum i think they are querying infantile spasms with ava. What are they like for your lo?? Xx

 

[essie0828]

Nearlythere it seems that she eats a fairly typical amount. I hope they can shed some light on what's causing her seizures and weight gain and treat them effectively.

 

[lilesMom]

Nearly there xx
Infantile spasms are when all 4 limbs stretch out in a fluid motion and kind of go up at the end.
He also bowed his head at same time. They usually occur in clusters with regular gaps.
Keep a note of when theu occur and how long the cluster lasts.
Also take a vid if u can.
Simon eyes looked startled too but in between spasms he would chat AMD smile.
Lots of lo get distressed but simin didnt

 

[lilesMom]

Cont.....
I posted cos my phone keeps switching internet off and I lose typing
They often occur on waking but don't hve to be limited to it.
Keep a diary of. Um.
Note if any warning signs and how she is before during and after.
It may save time ti diagnose xxx

 

[lilesMom]

Hey essie xxx
How y doin ? Xxx

36 is quite a lot.
We were told around 30 for simin who is close in age and 20 pounds.
But he goes over this moat days and sometimes by a lot. Doh.
We are hopung food helps him too xx

 

[nearlythere38]

Thanks hun. There sounds to be some similarities, they occur in clusters and often after waking. Her head dips down and her eyes look startled. She appear normal in between and they dont usually bother her, but sometimes do.

But all her limbs dont stretch out. Its like her head and shoulders mainly and often accompanied by jerky arms. Legs dont usually seem involved, although it sometimes looks like a startle

 

[nearlythere38]

From reading up on seizures i think it sounds like shes having myoclonic seizures

 

[lilesMom]

our consultant seemed fairly certain its all limbs and head too but all people differ so dont take that as gospel xx
hope u get ur answers soon xx
no answers suck x
those seizures arent dangerous are they?
i remember reading bits on um, but i read lots
xxxx

 

[lilesMom]

um could be beggining of infantile spasms?
the literature i got in hosp said they r more subtle at first ,
so maybe they change

 

[nearlythere38]

I am wondering if it could be the beginning of infantile spasms. Although i read that infantile spasms has a very characteristic EEG, so if it is normal again this time, who knows? I expect that whatever they are, they are a symptom of whatever condition she has.....we just need to know what is! Bloody hate waiting for results im the most impatient person ever

 

[essie0828]

Hi ladies

Hope the kiddos are doing ok. Nearlythere anyone would be impatient waiting for those results but I'm with you. I am so impatient with everything except DD anymore. DH bears the brunt of that mostly.

How's Simon doing on the new meds? Still seizure free? How about the reflux?

DD's braces won't be here until Nov 27. I was hoping it would be sooner. I'd love for her to be walking in them for Christmas

 

[lilesMom]

I am wondering if it could be the beginning of infantile spasms. Although i read that infantile spasms has a very characteristic EEG, so if it is normal again this time, who knows? I expect that whatever they are, they are a symptom of whatever condition she has.....we just need to know what is! Bloody hate waiting for results im the most impatient person ever

Def very distinctive eeg.
Its very chaotic eeg.
Consultant said back ground eeg is very chaotic all the time
Not just during spasms.
Xxx
Does sound much more like myoclonic seizure xx
Isn't that a kind of less dangerous version of the spasms ?
Xxx
think I remember reading they r like benign version.

 

[lilesMom]

Essie isn't it weird how anything bar lo ceases yo matter ;-)
Dd looks gorgeous in pic xx
Simon is good 10 days spasm free.
Fx it continues ;-)
to all x

 

[essie0828]

Yay for no spasms!

Hope everyone is well

 

[essie0828]

Nearlythere how's your little girl doing? Praying that she is doing better and spasm free

 

[nearlythere38]

Hiya shes good thank you. Shes been started on sodium valproate for the seizures but starting on a low dose and to increase over the next 8 weeks. Ive seen a slight reduction in the frequency but they havent stopped.

She has a sleep EEG on thursday. Her MRI results cane back grossly normal which is great so we can rule out cerebral palsy now. There was something suggestive of a metabolic disorder on the mri, and her urine metabolic screen was abnormal. Thryve retested it and i am currently awaiting the results of that.

Were innundated with appointments lately. There is something every day almost, physio, ot etc. Hard to keep track of it all!!

I hope you and your lovely little ones are well xx

 

[lilesMom]

Nearly there that's great xx
If reduced already. Great sign they should work at full dose xx
Thank god a step closer yo an answer. Xx
I'm starting to dread postman ;-) seems like new app most days here too.
But great to hve the help ;-)
Simin is great ay the mo. Hope it lasts xx
to all. Xx

 

[lilesMom]

Nearly there just to let u know.
Simin has improved vastly since meds.
Seizures were interfering more than I thought with his development.
Fx same happens for ava when under control x

 

[nearlythere38]

I actually like all the appointments because it feels like were being proactive and it keeps me doing something other than dwelling and worrying. Next week she has a hearing test as there are concerns over her hearing and the all important appointment with a geneticist.

Thats great that the meds are helpiny Simon. I hope that they do the same for Ava. Her development is very behind xx