Dravet Syndrome Stories From Those Who Know

Morgan was a well little baby till he had his last of his DTP injections at 4 months old; 4 hours after this Morgan had his first seizure lasting approx 45 minutes. Initially doctors told us, after 1 week in hospital and numerous tests, that it was just something that can happen from injections. The next day and still in hospital Morgan had 2 further 45 minute seizures and was diagnosed with epilepsy and sent home with anti-epilepsy drugs a week later. After that, seizures only came every couple of week's minimal length was around 45 minutes some lasting well over 1 and half hour. He experienced all different seizure types but, has never had the myclonic jerks. Spent most weeks in hospital and I stayed with him. Each stay it became more like home, than home, the longest stay was 2 months and I think I went home once in that time. Nothing else seemed to matter just being there for Morgan. The nurses were friendly and supportive and I used to help out on the ward to pass the time, also sit in the staff room for breaks and long chats a 3am, I seemed to becoming part of the furniture.

The worst period we have experiences with Morgan's epilepsy was when his seizure type changed and all his seizures would have no physical body jerking only eye twitching and the lack of breathing. There were several times during the 2 months he had these seizures when he had to be resuscitated we also had a couple of intensive care stays.

Every growth spurt or illness meant more seizure, he eventually had grommets placed in and his adenoids removed which seemed to stop his ear infections and hence reduce his seizure. When Morgan reached 1 ½ years old his seizures seem to shorten to less than 10 minutes but he was having a lot more. He then had a fantastic year and had 10 months seizure free using Topiramate, doctors were delighted and even told us that maybe he had grown out of it. All this time even with all the seizures Morgan still developed normally although slightly behind for his age.

Morgan started a nursery at aged 2 ½ seizure free and he loved going. Then a hot summer came and it all went wrong. Seizures returned the odd one here and there for a couple of months. We then started the ketogenic diet and were hoping for good results although not to be, his seizures progressed slowly up to 30+ a day.

Our consultant wanted to test to rule out SMEI although he did not believe Morgan to have it. We waited 4 months for the results which came back negative we were over the moon Morgan did not have SMEI. The consultant still not sure what type of epilepsy so referred us to specialist at Great Orman Street Hospital we were told he had a clinical diagnoses of SMEIB, but she wanted to confirm this so we went to another specialist in Glasgow who confirmed via a further blood test he has a major deletion of the SCN1A gene and therefore has SMEIB (Dravet syndrome).

At this time the nursery school had also ask Morgan to leave as they no longer felt it safe to have him at school. Morgan became very unwell and it was a battle keeping him out of hospital, the doctors did not know what to do next he has on 4 anti-epilepsy drugs and the ketogenic diet but his seizures were getting worse. Morgan had to be tube feed as seizures were causing him to choke on food, this brought on vomiting and Morgan was becoming very weak. Nothing the doctors did seemed to reduce the seizures, finally a decision was made that although very risky they were going to withdraw Morgan off all anti-epilepsy drugs quickly, that day his 4 drugs were halved and a week later withdraw completely. This was horrendous and Morgan was going through cold turkey we spent days in the padded sensory room while he throw himself around trying to hurt himself, then aggression then a 2 day non convulsive seizure, after which Morgan was left without any skills, he was unable to walk, sit up and talk, he could not even hold his head up. We eventually went home with Morgan still on the ketogenic diet being tube feed. Seizures were still present but were hoping that the diet without drugs may have a great effect. Not to be the case and it was decided to withdraw the diet as it was still making him vomit. Seizures seem to settle a bit being diet and drug free, finally we were offered an operation VNS which we took as our last chance to get his seizures under control. This has seemed to work, we still have seizures but we now have 2 or 3 days seizure free and he has started to regain lots of skills, he can now walk and run, use his arms and hold his head up tall, Still have no spoken words, the best thing that has happened is that he is very happy and his eyes smile and shine without the drug haze he has always had. He is our wonderful little boy (our solider) who has battled through the hardest of lives already and he is only 5.