Our little girl Jessica, age 9, was diagnosed with Ring20 (mosaic) in August 2015 following a period of seizure activity that commenced February 2015. Prior to this, Jessica was a very fit and active little girl.
Almost overnight, seizure activity increased to circa 40 per day. This, combined with a number of different AED combinations left Jessica with little confidence, where she spent most part of her day asleep.
Seizures consisted of tonic, complex partial, absence/status, and sleep.
Behaviour during these next few months was also extremely challenging. I guess we’ll never know just how much the AED’s and combinations of such were contributing to poor behaviour and abnormal sleeping patterns. Mothers instinct was however to withdraw as much of the medication as soon as possible, as we could see very little seizure improvement.
Jessica remains on her base AED, Carbamazapine/Tegretol. Other AED’s prescribed were in combinations of:
• Carbamazapine and Clobazam
• Carbamazapine and Keppra (was weaned very quickly due to change in behaviour)
• Carbamazapine and Sodium Valporate
To date, we have not had to consider the use of emergency AED’s, as Jessica has remained semi-conscious throughout all of her seizures. Status seizures have also lasted no longer than 30 minutes.
On the 12th November 2015 we commenced our ketogenic diet journey, as we were clear at this time we had given sufficient consideration to AED’s. With the support of our Neurologist and Dietician at the Royal Hospital for Children, Glasgow, we embarked on our keto journey, knowing that a lot of patience would be required.
Having considered all versions of the diet and what was best for Jessica, we agreed to try the MCT version, thus allowing a higher percentage of carbohydrates to begin with. Jessica adapted well to her change in diet, much better than what we had anticipated. We cannot begin to tell you how proud we are of our little girl. All family members have been very supportive and are extremely considerate to our food choices whilst at home.
As we became more confident with the diet, we began to eat out in restaurants and have now been on two short breaks, where I prepared all of Jessica’s food in advance. The hotels where we stayed were very accommodating and we managed to have a lovely family break without worrying too much about food.
During the first 3 months of commencing the diet, we struggled to obtain a constant state of ketosis. We continue to make small tweaks such as increasing MCT percentage, whilst very slowly reducing protein and carbohydrate. At this time, Jessica has a ratio of 55% MCT, 10% protein and 12% carbohydrate.
Whilst we are only now beginning to see an improvement in seizure control, it is clear that the diet is having a huge impact on Jessica’s quality of life. We can’t emphasise enough that we have our little girl back, her energy levels have returned, she is much brighter and alert and is back to being the active little girl she was, playing with her football team and attending her dance classes once again.
Since commencing the diet, Jessica’s seizures activity has now reduced on average to 10/15 per day and the duration of each seizure has considerably reduced. Status seizures that previously could last up to 30 minutes have almost disappeared and complex partial seizures tend not to last any longer than 30 seconds. Night time seizures are still sporadic but again the volume is beginning to reduce. The cluster seizures that we faced every morning no longer exist.
As parents to Jessica, we now feel in control of being able to help our little girl now, compared to those first couple of months where we felt devastated and so helpless. I cannot encourage others enough to consider the ketogenic diet therapy and to do this as close to diagnosis as possible.
We have embarked on this journey with a realistic expectation of better seizure control, but at no point believed we could eradicate seizure activity completely. The mere fact that my little girl is living life to the fullest once again and only having to cope with the side effects of one AED, is more than enough reason to remain on the ketogenic diet for the next couple of years.
The diet does require full commitment and is very time consuming but as mum to Jessica, I wouldn’t have it any other way. The diet has been our lifeline, where every step of the way we’ve been supported by our Dietician, Matthew’s Friends and The Daisy Garland. You will not be alone.
I hope by sharing our journey we can help reach out to other parents of Ring20 children who may just need some hope, inspiration and encouragement to see that the diet has so many other benefits in additional to improved seizure control.