Epilepsy Research UK
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Scared and worried Newbie

Hi, our young son with special needs has just been diagnosed with epilepsy. I found him face down in vomit on Wed evening. He was unresponsive, totally out of it, floppy, eyes glazed and drooling. By the time the ambulance arrived he was struggling to breathe. The hospital thought he'd inhaled some of the vomit into his lungs. Whilst in A&E had had two small seizures. They also think he'd had a seizure in his sleep which made him vomit. He has various needs including low muscle tone, can't walk, non verbal, GDD and swallowing difficulties. It is the fact that he could choke on his vomit that concerns us the most and that we hadn't heard a thing despite having a baby monitor on. We daren't put him in bed again as we are so scared it happens again and we won't hear him, he has a special bed with higher sides on and padding inside as he bangs his head back against the sides. We bought a travel cot and put him in there and are sleeping in the living room with him so we can monitor him, I daren't sleep. At the hospital he was diagnosed with tonic clonic epilepsy and started on Epimil. Y/day morning he had another seizure - I was just dozing when he started gagging. We dialled 999 as advised to do but they wouldn't send an emergency ambulance out. Instead we had to wait about 30/40 mins for a paramedic to come out to assess him. They said he needed to go to hospital as he clearly wasn't himself, was subdued, heart rate was too fast, he wasn't showing any recognition of me... The doctor there was fab, really fab and so supportive. She wanted him to go on the children's ward for observation but they wouldn't take him, basically said after just one dose of the meds nothing was going to change, that he'd have more seizures until it kicked in... By this time he was starting to perk up somewhat so the doctor had no choice but to send him home. She has told us that if he has another seizure then we are to ring 999 and demand they send out an ambulance, that A&E have said this, if all else fails take him in ourselves but that would take us at least twice as long as an emergency ambulance.

So here we are back home, with him in his travel cot (he's just turned 6 but developmentally is only 12mths) and me too scared to sleep. Someone told us to ask the local council about a special monitor, which we have, and the OT has made a referral for one, but I'm not sure how they work and whether they would alert us if he vomits?

An epilepsy nurse called y/day but didn't seem to know what his needs are, didn't really say much that was of use and made us an appointment for Dec. Apart from that we have just been left to deal with it ourselves!

Sorry about the long post, I'm just feeling lost, confused, scared, tired.

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Hi

I'm so sad to hear this, I don't have a child with epilepsy but just felt I wanted to reply, please insist they send an ambulance as to say no is very bad practice, I had 3 seizures in a row once and my ex called an ambulance and they came so please insist, I really hope you get more support I think sometimes the only way is to keep going back to the doc/specialist until they give you all help available.

Best wishes to you and your family

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I feel for you as I know your child is your life especially when affected by many conditions. I was diagnosed with grand mal epilepsy at the age of 15. My parents stopped taking me to public events and were constantly scared for themselves as I felt like an embarrassment to the family. Believe me highschool was one of the worst times of my life. I buried myself in my books and music as not many people would hang out with a freak. since then I completed 3 degrees in music , education , and psycholinguistics. I began a career in teaching.

As time went on I married gave up my career and had a boy two months prematurely . He was my absolute miracle as chances of me having children were next to nil. As time went on I noticed he was not respnding and was deaf due to ear problems. With treatments he gain back his hearing but did not talk until the age of 5. It was challenging to top it off he was then diagnosed with asbergers syndron a type of autism.

I did not give up on my son but my relationship became bad and ended in divorce with me being blame for my sons condition. Then I came down with cancer .I had to fight fro the sake of my son. With treatments I survived and took on my sons challenges. But you need help from support groups . Therapists and many other options.

You must take care of your self so you can be strong for your son. I hope you have strong family connections. I had three very good friends who helped me keep going and will be forever be thankful. Keep up with the doctors and if tests are suggested definitely find a way for the doctors to believe in you. Life throws us many curve balls. But after surviving cancer I look in the mirror and am thankful after 24 years I am still here. Do not let fear overcome you.

Yes you fear for your son and are worried but there is help out there and assistance to your son search out the ties in your community and resource groups. Go to meeting with other parents who are also afraid for there children. These groups are great for building a plan of action and will help show how to manage your life and the concerns you have. Hope you have luck in finding support groups. Blessings Elsie

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