Gail's Matthew's Story
I've titled this "Gail's Matthew's Story" as there are now TWO Matthew James Halls on the forum!
Our nightmare began on May 2nd 2003 when Matthew had his first seizure in nursery, another in the ambulance and another a few hours later. Prior to this he had developed fairly normally - a little slow in speech and not very good at joining in games, but he was one of the youngest in nursery so we weren't really worried.
Over the next few weeks he had a couple of spates of T-C's but then one night all hell broke loose and he had T-C's, absences, repetitive clapping and ear / face pulling and eventually froze in a foetal position. Back to the hospital where we were told to prepare for the worst - he could stay that way. He would walk, go to the loo, but his eyes were completely blank with no recognition or sign of interest. We were told he had Landau Kleffner (by a general paed without an EEG). We were also warned that he could stay permanently in this stuperous state.
He was put on IV diazepan - up to 40mg - with no response. I turned into a manic mother-lion looking after her cub screaming - "If you don't get him into Alder Hey I'm gonna rip these IV lines out, drive him there and call an ambulance" We got transferred.
In Alder Hey he was weaned off the diaz (a drug addict at 3!!) and showed some hints of consciousness (I remember him saying out of the blue "That says caution wet floor" - he always had a thing for signs. EEG showed NCS so he had a phenytoin drip - HORRENDOUS then a course of steroids. We were sent home and started the roller coaster ride of drugs - Epilim, Topiramate, Keppra, Lamotragine - with little discernable positive affects and lots of side-effects. He was provisionally diagnosed Lennox Gastaut, but could not confirm as the EEG was too erratic to be readable due to the constant non convulsive activity
I pushed for keto and fortunately our neuro backed me - we started MCT keto in Nov 03, only 6 months after the first seizure. We had a real tough time getting Matthew to drink the shakes, battling in the end to squirt syringes of the stuff into his mouth. As we already had seen improvements, Matthew had an NG tube inserted to administer the oil. From Dec 03 to Nov 04 M was seizure free through the day, and had an EEG with lines that didn't actually cross.
As the NG tube wasn't considered good long term he had a gastrostomy, a shedfull of infections e.g. multi resistant pseudomona, and eventually had a Mic-key button.
In November a whole new style of seizures hit - myoclonic jerks and a slow slumping when he was sat up, he'd just topple over. Same standing - like an atonic attack in slow motion. This pointed more to a dx of Myoclonic Astatic Epilepsy (Doose) as did his now readable EEG.
Even with the tube in, we still had huge problems feeding Matthew, with projectile vomiting (Pink curdled liquigen yeuuchh!) and excruciating trouble trying to get him to eat the few calories he was allowed. Then the diarrhoea kicked in around Christmas 04 and stayed with us till we eventually had to suspend the diet in April 05. When he started the diet he was 19kg 18 months later he was just 16.5kg.
Post MCT diet, he ate really well - really enjoyed his food - he could even chew! Mealtimes were once again a peaceful and enjoyable activity, with me able to cook healthy meals for all the family.
The down side is that the seizures continued - not as bad as prior to the diet, but still, say a spate of T-Cs knocking him out for one day a week, odd spates of the myos / slumping and lots more non convulsive activity which I guess is responsible for his severe learning delays - He was assessed skills age < 3yrs, IQ 46 and autistic. Ho hum!
I went to the Matthew’s Friends conference in May to try and find out more about classic keto / Atkins - and I certainly did - really informative event and great to meet people on here.
Once our neuro got us on the diet, she upped sticks and moved down to GOSH and we were left up in the air a bit neuro wise. We saw his new neuro properly in Jan, one year after his last proper appointment and weren't due to see him again till Sept, though he did run really useful phone clinics.
We had a couple of admissions through the summer of 05, each time upping the epilim and clobazam until Matthew was a drooling zombie. Neuro was pleased though that he was seizure free for 3 weeks, but what a price to pay! When the clobazam was again increased during out last admission in Sept 05 I said that I expected a 3-4 week honeymoon period as previously, but then for Matthew to tolerate the new level and go downhill again.
It was an awful time in hosp, and I spent lots of time on the phone to family, and Emma, in floods of tears of frustration – I’d begged for classical, but just hit brick walls of distrust in the diet from the neuro (he even called it “an alternative therapy” – what like I was suggesting reiki or Chinese medicine!!!). Also lots of resourcing arguments GRRRRR. He accused me of being anti-drugs, even citing his mum who refuses meds for her arthritis. I’m NOT anti drugs – I’d love to be able to give my son a pill and make his epilepsy go away with bearable side affects, but we aint found that pill and statistics show we’re not likely to. He topped it all off by offering me counselling – that went down really well!
After 3 weeks Matt started seizing again, so now he was a drooling zombie with seizures too. The neuro wanted to admit him again to up the drugs, but I’d had enough and I refused. We had a “heated debate” where I said I was starting the diet unilaterally against medical advice, because I could not continue to see my son deteriorate at the hands of these nasty drugs. Some time after this he, thankfully, put in a referral to a keto consultant.
I started the diet for Matthew on 18th October 05, initially at 2:1, then after a couple of weeks at 3:1. We saw immediate improvements in seizure frequency and recovery time. More importantly in behaviour / awareness. It’s been a rough ride as we HAD to start reducing the drugs that had taken my son away from me through the summer. So we’ve had a bit of a roller-coaster of withdrawal seizures thrown into the pot. Overall though, I feel we’re heading in the right direction – I’m more in control now and not just helplessly watching my son deteriorate.
In December 2006 we said "Goodbye" to Matthew's final regular Anti-Epileptic Drug - clobazam - which was quite a difficult wean - Forum members can read about the wean here.
For years, our doctors had been warning us that Matthew's deterioration in alertness and cognition was to be expected, given the devastating diagnosis of Lennox-Gastaut that he had been given. The progress that we saw following the drugs wean, therefore, was nothing short of miraculous for us! He regained lost skills, like toiletting and bike riding, his speech improved, he reacted MUCH more to those around him.
We’ve not had the wonderful “slam-dunk” effect that some very fortunate children have – seizure freedom from diet initiation, but little by little I’m getting my son back!
We're not COMPLETELY out of the woods yet - Matthew has recently had some nasty bugs, where we saw a few seizures and the dreaded NCS creep back in. Fortunately, however, we were able to use clobazam as an emergency rescue med to "jolt" him out of these spates - whilst we had a very rough time using it as a regular AED, it is very successful as an EMERGENCY medication.
You can see the difference in Matthew in the "Priceless" video I made for him here.