Follow up MRI results tomorrow

[donnajane]

My little man had his second MRI on 18th Jan and his Nureo is finnally back from holidays tomorrow so we get the results. It has been a long wait. We are hoping that no news is good news and the lesion in his brain has not altered but we have learn't in the past that no news doesn't always mean good news.
My husband and I are making a bet it will be that it has altered slightly as this was hinted at to us the day he had his MRI, but we are also sure it will be a wait and watch, which although I understand, is also frustrating as like every parent i just want my child not to be going through this.
Just so gald I have you all for support as most of our friends are so great but they give us pity which I don't really need at the moment, would much rather hope/positive thoughts. I still appreciate their support but unless you have a child with "quirks" like my little man it is hard to understand. I now know how little an idea I had re what siezures where and what could cause them before I started on this journey.
Donna

 

[travel bug]

I'm sure it's been difficult waiting all this time. I'll be praying for good news. Let us know what you find out. {{Hugs}}

 

[donnajane]

MRI results great, lesion still there but hasn't grown. Other news not so good. Looks like my little man has now added Tonic-Clonic events to his list plus is having seziures which affect his diaphragm. Nureo explained that hicups are a mild form but what my little man does is not very common and way more intense. He has now added a 1/4 tablet of Clobazam to his meds, every night and we are to increase it to a half if he continues to have these strange "seziures". We have been told the period of over 24 hrs where he struggled/didn’t walk was a “brown out” similar to a black out expect that instead of it affecting the whole brain it only “blacks out” part of our brain so it called a “brown out”. If he has another period like this we have to take him into the ED if it gets to 2hrs and he is not walking. We have been given a referral for some metabolic tests which need to be done while he is like this as his specialists say they need to see what is going on “chemically” at these times, if possible. He regularly has short versions of this which last around 30minutes. Next step is he has been referred to Ealry Intervention to help with his communication as his understanding if very high yet he has his own language for most of the time and they want to get his "help" now being so young to make the most of his abilities. We were told we could wait and see if he caught up but best to start now. Waiting on an appointment with the Paedatric Metabolic Nureologist and next MRI will booked for around Jan/Feb next year unless his issues suddenly get worse. Also looking into having an EEG for 2 or so days while he is doing regular activities as even in the paed office he was having lots of mini "sparks" then just continuing on with what he was doing as he is so use to them now.
Although some of the news not as good as hoped can still see lots of positives, lesion hasn't grown, he is getting help with area's he may need assistance and the Dr's are continually looking into his issues.

Donna

 

[Nakamova]

I'm glad the MRi results are reassuring, and also that the docs are still working hard to get you some answers. I know how frustrating it must be that they still don't understand what's going on, though. I hope the Clobazam helps -- let us know.

 

[LisaBee]

Glad to hear the lesion hasnt progressed and that things are moving forward for your little man!Hope you get some answers and the Clobazam helps

 

[travel bug]

Good news about the lesion! And it's also good to hear that, though you had to wait a long time to see him, the doctor seems to be working hard to figure out a the best way to help your little guy - and to explain to you what's going on. Sadly, many doctors seem to just give up if they don't immediately know the answer, and are even worse about explaining anything to patients or parents.

So sorry to hear about the new kinds of seizures. I know the TCs are more serious, but even regular hiccups are awful enough, I can't imagine having these more intense ones. I hope that the added meds take care of both of these new issues. And with the metabolic tests and EEG's they can figure out the best way to help with the brown outs. Brown outs sound scary, but at least the doctor has an idea about what's going on.

All the best to you and your little guy. And keep us posted!