The EEG

I havent posted in a while. I have a lot to get my head around. I will forever be grateful for the amount of support and well wishes i have recieved through Instagram and the blogging world.

So Junior had his EEG.

We had lots of questions to answer again. Most of them ones we had already been asked.

We explained we think Junior had another seizure which we described in detail and also the two absenses we think he may of had. I also explained, that i feel im going crazy, that i may be looking at something which is not really there, or reading to much in to it.

Junior did really well and tolarated the Nurse putting all the wires on his head. He followed instructions well, open and close your eyes, keep them close, open them, blow this windmill, look at flashing light. He kept as still as he could. I didnt notice anything unusual during the test apart from his leg twitching a lot during the blowing exercise, again i dont know if im looking into it too much.

Im so glad we took advice from a fellow blogger and took a hat, his hair was a mess! And Junior has a need for perfect hair! not a good mix.

The test didnt take that long overall.

We took Junior for a walk around York, had a Mcdonalds and a trip to Lush to choose a bathbomb for a relaxing bath when he got home. He settled on a little butterbear.

We also have managed to get a sedative for Juniors MRI which is due soon. What a carry on that was. The Dr originally didnt want to prescribe one, until he took a proper look at Juniors notes and must of realised, he wont keep still.

This journey in equal measures is going too quick, but also at the same time its going too slow. I really want answers, but equally im scared of the answers. Junior will still be Junior, i just worry about his future.

“Your Son definatly has a disorder”

IMG_20161011_175308.jpgHearing them words, even when you think you are expecting them, knock the wind out of you.

So many feelings.

Elated, a proffesional sees what i see, im not going crazy. Im not a bad Mum after all. We are finally going to get some answers. An officially diagnosis. We will get help.

Sad, because what does the future hold? Junior is upset with me. This appointment was the first time, ive spoken openly in front of him.

Confused, we have always been told that Junior more than likely has ADHD and Asperger. The paediatrition isnt sure, although he thinks there may be some ASD there. Junior doesnt tick every box! I was only just coming to terms with ADHD and Aspergers. Now we are back to square one. Comfused, what will happen next?

Everything is coming all at once. So many tests. Millions of repetitive questions on family history. So many unanswered questions, are they trying to find blame? Point fingers? Trying to figure out if im just a bad parent? Theres too many appointments. I feel trapped in a whirlwind.

I can only imagine how Junior might be feeling. All i can do is answer his million and one questions.

I have never felt so nervous in my life, we are awaiting so many answers. We have so many questions.

I have to figure out how to explain it all to Junior.

First things first though, we will hopefully know by the beginning of November if Junior has Epilepsy or not.

This is one long journey.

We can finally see a light. Im not sure if im ready for the answers yet though…..

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Just a Mama wanting answers…

IMG_20161002_175757.jpgi feel im lost in a fog. Everythings hazy.

It could be the lack of sleep.

Since Junior had his seizure, and speaking to the Epilepsy Consultant, im so scared that Juniors night time jerking and twitching, is actually seizures.

In my last post i wrote about how quick everything was going, it was a whirlwind. Now it seems to be the complete opposite. It feels times slowly ticking by, almost stopping.

Im impatient you see. I want answers. Google, and YouTube arent giving me the answers i want.

I find myself studying Junior all the time, every twitch or jerk he does, asking if hes ok. He goes quiet for a minute, im shouting his name, for him to respond. I feel like im going crazy. Every phonecall while hes at School or im at Work, my heart sinks.

Im obsessively watching the small clips of Junior i have managed to film so far. Looking for clues that its all in my head. That its just normal sleep twitches and jerks.

Deep down though i think i know the answer to my own questions.

It breaks my heart. Im holding out hope it was a one off, until he does have the MRI and EEG. Until the consultant has viewed the footage. Six weeks feels like a Millenium away. Lightyears. I feel like im going crazy.

Ive only just started to come to terms, even grieved possibly, with the fact that Junior has Aspergers and ADHD, maybe even SPD. Now we have Epilepsy thrown into the mix. I have only explained the Epilepsy to Junior. I dont know if im just been selfish. Over thinking and worrying too much. Isnt that a Mothers job though.Maybe i need to take a step back. Stop researching. Take a leaf out of Juniors book and just carry on with life. One day at a time.Wait until we get appointments and results, and cross that bridge when we get to it.

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The First Seizure

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Thursday the 29th September started off as any other day. The usual morning. Tantrums, attitude then breakfast club at school. Nothing was unusual.

I went to do my car theory test and passed, i was beyond happy and phoned to tell everyone the news. I went home, made my lunch then sat down to eat.Β Then the phone rang. I saw it was School, i rolled my eyes, and thought, whats Junior done now.

If youve read my previous posts, or follow me on Instagram you will know all about Junior and his behaviours.

School informed me they need me to go up their asap. Junior feels sick and appeared vacant.They didnt want to tell me too much on the phone. I phoned Davie (hubby) at work to let him know, im picking Junior up early. He said he was leaving work, and wouldnt be long. I got to school in 10 minutes. Junior was a funny colour and appeared confused, he kept looking at me, then around the room. He was silent, only nodding his head when i asked if he was ok. He was very still. These are all unusual behaviours for Junior.

I spoke to the Headteacher privately. Junior had gone to his office to speak to him. Junior had a funny feeling in his stomach, then his throat. Junior had gone vacant, then dropped to the floor, been lowered by the teacher. Junior then jerked and his face twitched. He was then incontinant. The whole seizure lasted 20 seconds.

We went to A&E the it was a rush of doctors and nurses. Doctors shouting for an emergency paediatric consultant and a bed on a paediatric ward. It was all a whirlwind, so much happening in such little time, it was so overwhelming. There were no beds, we had our own side room, after all tests had been done, Davie arrived then we got the good news his heart was fine. His obs had picked up. After 4 hours we moved upto the childrens ward. Junior had an overnight stay, with Daddy. We spoke to a Epilepsy consultant. From my family history and my severe migranes they diagnosed that Junior had a Focal Onset Seizure. He also told us that there wae a likelihood of it happening again. We recieved some brief training and told us Junior has to be strictly supervised at all times. He also mentioned Junior has most likely had many small seizures and they have gone unnoticed. I mentioned Juniors night time jerking, face twitching and gutteral noises. I always thought it was Juniors body shutting down for the night, after been hyper. The consultant thinks they may be seizures, and to record them. We are awaiting an appointment to see a Epilepsy specialist and we are going to York for a MRI and EEG.

It all seems to be moving so fast. Its all so overwhelming and feels surreal. Ive been reasearching and googling non stop. Nothing is telling me this was a one off. Its all so scary and new at the moment. Its hard to focus on anythig else.


I do know i have a super brave boy, who is taking this better than i am πŸ’™