Timmy was starved of oxygen during a traumatic birth, he was pronounced dead immediately after birth, but was eventually resusitated against the wishes of his birth parents, who knew he would be very brain damaged by what had happened. He even attended his own “funeral” service in a hospital chapel, but was found to be breathing, so was whisked away to SCBU.
I first saw pictures of Timmy when he was aged 2, he was looking for a new “forever” family, and I wanted to adopt a child with disabilities. It was his bright eyes, despite his difficulties (cerebral palsy, severe developmental delay and reflux) that did it for me. I knew there was a proper little man in there!
Timmy came to live with me age 2y 9m, what a team we were! He had a history of severe irritability which had been put down to his reflux, no mention of epilepsy, but looking back I wonder why not? Within 2 months of his arrival we were taking that first ambulance ride and I felt guilt ridden that I had somehow caused this tonic clonic seizure.
In the months that followed the meds trail began, although until age 5 he was reasonably well controlled on epilim and lamotrigine, the doses just kept going up but that seemed to work. He leaned to sit, then kneel, then began to crawl, he became happier but still had bouts of “hyperactivity” at night which in hindsight must have been epilepsy related.
It was at age 5 that he had his first “crash”, it happened again at 7, and also 2 years later at 9. During these spells, usually lasting about 6 months, he would be having non stop absences, twitching, blinking, basically seemed to be having constant small seizures intersperced with bigger ones. He spent time in hospital and time avoiding hospital by the skin of his teeth. He tried a myriad of drugs and emergency meds, nothing would break in. On each of the three occasions we did find drugs that stopped it in the end, Topomax, Tegratol and Keppra in that order.
He would then go into a calmer phase but the positive effects of the drugs seemed to get shorter and shorter, and many others were tried in between the big crashes, to try to reduce the NCS and other seizure types. He was always on 2, 3 or sometimes 4 drugs at a time, with Clonazepam being the most ghastly, making him so exhausted he couldn’t hold his head up or even open his bowels. His rate of development slowed during these years, and I stopped hoping for improvements, just hoping that he didn’t get any worse. His periods of hyperactivity or agitation were particularly hard to deal with, as the noise level was horrendous, and it could take 2 people just to change his bib, he would fight you tooth and nail. I started to worry how I would cope with Timmy in the future, especially as by now I had adopted a second child who also had cerebral palsy.
It was last year, during his age 9 crash, that despair set in. The twitching particularly affected his mouth and seemed to put him off eating, usually he is a slave to his stomach, but at this point he seemed to lose all interest. I have never thrown so much food away in my life, he would only take a spoon or 2. I never thought I would see the day, but he ended up on a pump feed to his gastrostomy (which is normally just for his fluids as he can’t drink), I was devastated to see him getting thinner and thinner, he looked gaunt and I was scared he would loose the will to live. The constant small seizures seemed to make him feel so ill, then along came phenobarbitone which made him highly agitated and unable to sleep, hence further weight loss with all the activity. He lost the use of his right arm (temporarily) with all the twitching, but I was told by medics the twitching wasn’t epilepsy related repeatedly, we had “a tic”, part of his involunatary movement (like I can’t tell the difference), etc etc. Eventually an EEG showed seizure activity spiking up every second, we were sent home, having been told he had tried all the meds that there were, BUT look into the KD and VNS. And there was the gem in all the ****, hope amongst despair. When I read Matthew’s story I knew I HAD to try it, I would do anything, to feel I was able to help my poor little man who seemed to be in some sort of hell.
Fortunately, trying Keppra again (he had had a few months of sucess on it at age 6) got him out of his dreadful state while we waited for the diet to start. He immediately started eating again and was on good form by August when he went to Alder Hey for an operation to stop his persistant vomiting. This couldn’t have come at a better time, as he would have probably been unable to tolerate the diet without the op. Talk about bounce back, Timmy was home within 48 hrs of the op, and proved to me how special he is for his persistance to keep going, no matter what!
A month later he started keto, with a very nervous mummy, we were lucky to have a fantastic dietician. Unfortunately, the first 2 months were horrendous, with Timmy being violently sick, unable to get his head off the floor where he sleeps, white as a sheet, more poorly than I had ever seenhim. Again, guilt ridden, devastated mum, how could I put him through this…. Thanks to Carol the dietician, and MF, it finally became apparant that Timmy was mega sensitive to ketones and liquigen, and once they were slashed we began to get somewhere. THANK GOODNESS I didn’t give up!
By Christmas we could all see a change in Timmy, although still having many bad days, the good days were VERY good.By Easter I was bowled over by my boy, switched on, alert, calm, happy, sociable, just odds and ends of jerks, absences etc. Now it is June, 9 months into diet, Timmy is transforming back to the boy with the bright eyes, few bad days, just some trouble sleeping at present. He has been able to come off all his anti sickness drugs post op (3), one AED lighter, 1 sleep med less, plus no more calming down drug. How much better must he feel? I can only speak for myself, I feel relieved, overjoyed, empowered, calm, no longer on the edge of my seat….. I don’t know how long he will stay this good, I’m not expecting seizure free or med free, and Timmy will always be severely disabled, but to see his quality of life improve 1000% from this time last year is priceless.
I think it is a good example of how the diet should be used, not just for the most severe cases of life threatening epilepsy, but just where it is impeding quality of life. Timmy’s fits have rarely been the unstoppable tonic clonic type, but to have constant small seizures day in day out, month after month is pretty grim too. Now we have been given a fresh start, and if anyone is going to grab life by the horns it’s Timmy, go for it boy! I am so proud of you!
Update May 09
At long last I am sitting down to update Timmy’s story, which is long overdue. What has prompted me into action (apart from a rare quiet moment) is that last night he triumphantly mastered getting up into a standing position without needing a hand hold. He was SO thrilled with his new skill he was still practicing 3 hours later, and had to be given chloral hydrate to persuade him to give it a rest and go to sleep!!!!
This to me is a miracle, could this really be the same child who went through all those years of drugs and seizures and trips to hospital? It is now over 2 and a half years since Timmy went on the diet, he began to respond after a sticky first few months, and after a year the seizures gradually tailed off. He was weaned off all but one drug (keppra) which remains on a very low dose. I can’t actually remember the last time he had a tonic clonic or needed midazolam. The last time he had a day in NCS (which used to occure as often as every 3rd day) was Sept ’07.
I am stunned! When we embarked on the diet I would have settled for any improvement. We have been incredibly lucky. Timmy still has occasional myoclonic jerks, and some absences now and again, just to remind us he does still have epilepsy, but NOTHING to compare with how he lived for year after year pre diet. In December ’08 we bravely went forth to wean him off the diet (encouraged by you guys!), he has been back on normal food now for 3 months with no sign of setbacks, it really is more than we could ever have hoped for.
So now we have a really cheeky boy to contend with….. he laughs all day from morning til night (we used to wait all day for a smile when he was poorly). He crawls EVERYWHERE! A real monkey, exploring his world again, communicating, now mastering getting up on his feet without anything to hold on to, it really is amazing to think that none of this would have happened without access to keto, how different his life would have been if he had continued the downward spiral he was in.
He is plump and eats like a horse, no sign of the failing little skinny man he was. He is LOVING all the chocolate cake he can get his mouth round now he is off the diet, well really he is just loving life, and living it to the full. He is the child he should have been without the intractable epilepsy, and has picked up and carried on teaching himself things like using symbols to communicate, and standing up, that he was doing 7 years ago before his seizures got out of control.
How lucky have we been? Every ounce of effort preparing, weighing, cooking, sweating over keto cooking has been worth it over and over again. We don’t know if he can carry on like this, but for now we are glad of every day that he grows stronger, and his happiness is infectious. Thankyou so much for all who encouraged us along the way, and we really hope others have positive experiences for their children on the diet. I will always remember how it feels when things are bad, and my heart goes out to all who continue to struggle with epilepsy.
Best wishes, Alison and family.