Any advice on what we should do next?

[donnajane]

My 1yr old has been having events since around 6months.
They started as "Shudder Syndrome" and he would have up to 150 a day. His development was put on pause with these. Thankfully they have eased to ony a handful a day so he is now moving ahead development wise.
The other events he has are;
He "vagues out" and falls to the side or he will go forward. Nureo said they look like a tonic event and his associate agreed it looks like an epileptic event. All eeg's clear so far.
He has times when his arms fly up or out to the side out of control. It often distressed him as he can be playing and it will just happen often as a cluster.
He has had a few events where he "vagues" out while pulling himself along the floor then while lying down, usually on one side, his arm and then legs will twitch/spasm.
The lattest thing he does now is his head suddenly goes down to his right shoulder, almost like a spasm and it looks like he is going to "vague" out but then he is OK again. On the weekend he had around 30 in 5minutes. He has had them every day since but we have only seen a handful at a time.
Nureo keeps saying he "doesn't have a form of nasty Epilepsy" and some children just do these things and nothing comes of it.
Hubby and I are worried as to us it just doesn't seem normal. Our little boy has at least 2 or 3 days every week where he is highly agitated and almost distressed. Could be separation anxiety I know he is at that age but he just doesn't seem right. We have 2 other children ( 4yr old and a 2yr old).
Oh he also has a swollen lymph gland, the size of a pea, on the back left of his neck, cleary visible without touching it. GP said is was unusal as he wasn't ill and usually you don't see just one swollen like this, but again wait and see. If its still there in a month they will look into it more.
My question. What do you feel we should do next?
Should we just wait and see what happens with his events etc?
or Should we be pushing for our Nureo or another Nureo to look into it more?
Thanks
Donnajane.
Sorry for the long post.

 

[donnajane]

Please I really need advice on what to do next. Today his child care centre rang me to say he had a longer "vague out". Absent event. Then I watched footage of him this morning having breakfast and he had so many shoulder spasms it was a shock. I left the video filming in hope of getting a couple but the number I saw was quite confronting. He didn't put his head down to his shoulder as usual but I think that was he had slid down in his chair and his head was near his shoulder anyway. Some are so strong they upset him. At his osteo appointment tonight he was so agiated and his eyes rolled back a couple of times but he could have been tired but even the osteo was a bit concerned. Something is not right but I feel like I am going in circles.

 

[AnnaM]

I wish I could help! My son is 4 and was diagnosed with tonic clonic absence frontal seizures last year mid summer. He has had 3 EEG's, none were caught. His neuro said she feels they are coming from deep within, and that since he had 3 seizures (at the time) she wanted to start meds, which we did.

The meds, for us, have been a nightmare as he has had bad reactions to all three, resulting in him never getting to the dose he needs to control the seizures! ugh! ..So, what we are going to do now is take him to a naturopath doc next week...Blood testing to check for allergies/vitamin levels, dietary changes, supplements...Some have had great success in doing this...seizures being cut out or way down. I am hoping and praying our son will have the same results..

Oh, forgot to mention that our son will also be having a sleep study Feb 25. I would discuss maybe your son having this done as well.

Hang in there..We are all running in circles over here too

 

[Rebecca-Brody's-mama]

I would find a second neuro. My son had myoclonics starting at age one, and it took me until age two to finally force my way into a neuro consult. The neuro has never seen his seizures, both EEGs and his MRI came back clean, but the doc knew we were right and started him on Depakene. THANK GOD. Brody isn't seizure free yet, still has a few break-throughs when he's sleep deprived or some idiot gives him chocolate, but other than that, he's not having his daily Myolclonics every day. Fight for what you know is right.

 

[Nakamova]

I agree -- get a second or even a third opinion from another neurologist.

 

[donnajane]

Thankyou so much for the replies. I video'd him again this morning and saw quite a few small events in the 10minutes and this might sound silly but it almost made me feel better as I know I see them everyday but now I have more footage to back this up. Child Care often says he hardly did any maybe one a day but I am sure he still has them they just don't see them as I know I didn't see these, I was helping my 2yr old get dressed and Harrison was in the High Chair, when they occured.
We are getting another opionon from a specialist Paedeatric Osteo who specialises with Children who others can't work out what is happening. His current osteo refered us on. We see his Paed in 3 weeks and I will ask her re another opinon but he has already seen 2 Nureo's. The first was in hospital where he was admitted through the ED he said he had Shudder Syndrome and thats all as we didn't have footage of the other events then and when I did have the footage our Paed rang the Nureo and he was quite rude and said no its just Shudder syndrome. The Nureo he is with now is a lot better and agrees he is having other thing episodes happen but he doesn't know what they are as EEG all clear. His paed thinks he is having lots of partial seizures and absence seizures.
Thanks again. I learn so much everytime I am on this site and reading others stories makes me keep going on my "quest" to help my little man.
donnajane