NEWBY- needing some advice

[kirstyc]

Hello Everyone,
this may be a long post pre warning!
My son was diagnoised with PTU last year. Have check ups at hospital ect had EEG to confirm which was normal.

Now around christmas time he become very unwell and started having a different type of 'thing' they started just every now and then where he just would go blank and not respond,and some where his eyes would flicker.
we had a check up at the hospital start of Jan and i told them about it and they are sorting another EEG (they where only hapening 1/2 every few days.Now since seeing the consultant they have got alot worse having quite a few a day, he also does this thing where he will tip is head back and then fall, eyes sometimes are going all over the place.

He also has started waking screaming in the night or after his nap and taking me a good 30 mins to calm him down. I am just very worried!! They think it is epilepsy, but not to sure what to do, i don't no whether to call the hosiptal see what they say as im worried about waiting a few months for an EEG. I have a video of some of the things and now keeping a diary too. any advice or comments i would really like THANK YOU! xx

[Nakamova]

Hi kirstyc, welcome to CWE!

It sounds like the PTU diagnosis may have been inaccurate and that absence seizures have been occurring all along. (A negative EEG doesn't necessarily rule out an epilepsy diagnosis). Has the neurologist given you any guidance about how to proceed? Often, childhood absence epilepsy tends to go into remission or stop entirely during adolescence, so that may be a factor when considering treatment. I recommend that you get in touch with the pediatric neurologist and/or the hospital -- anyone who will give you more info about what the next steps might be for confirming a diagnosis and/or pursuing treatment options.

Best,
Nakamova

[donnajane]

Hi and welcome. My 1yr old is having strange events/episodes as well. They think he is having partial and absence seizures as well having Shudder Syndrome. Thankfully his Shudder Syndrome he will grow out of and he has very few a day now compared to 150 at its peak. He has now had 4 EEg's which have not shown what is happening. He has events every day. Nureo has said all he can rule out is a "nasty form of epilepsy" but is still concerned with the events where he is "disconnected" he vagues out and slumps forward or goes to the side. Our Nureo is great he has asked me to email him weekly and we have been seeing him monthly if needed. My son was being treated in a hospital but I became so frustrated at seeing different people and getting told to go back to the ED everytime things changed and they would see if there was a need to call a Nureo. I decided find a private Paedeatric Nurerologist and I am so glad I did as now I know help is close at hand. He is happy for me to email him or ring anytime if I need advice and I know how to contact him in the case of an emergency. If you are concerned at all contact the hospital by all means. Good luck with it all and I hope you are able to get more advice and another EEG for your son soon.

Donnajane