Hannah & her Carer
Hannah was born on the 26th January 1997.
She lives in Victoria with her sister Rebecca (11yrs) and brother Ben (nearly 9yrs).
Hannah started the ketogenic diet in June 2000. Her seizures reduced by more than half. Hannah is fed a formula version of the diet, consisting of Ross Carbohydrate-free formula, Calogen (medium chain fatty acids) and Polyjoule. She is managed by the dieticians at the Royal Children's Hospital in Melbourne.
|Hannah's story as told by Karen (her mum)|
"We first noticed seizures when Hannah had 2 tonic clonic (grand mal) episodes at 10 weeks of age. When she was hospitalised for this we were told she was epileptic and also informed that many of her postures were evidence of lesser seizures. At that point we realised she had in fact been having seizures since soon after birth.
She was diagnosed with complex partial epilepsy, and her seizures were mostly focal (partial), with some of them becoming generalised tonic clonics in the first year or two of her life. The number per day has changed as medication and diet have changed. At one point she was having up to 20 partial seizures a day, but since starting the ketogenic diet they are now less than 10 per day. Once medication was started tonic clonic episodes were controlled quite well, and now rarely occur."
"Blood tests were done to determine if there had been any inutero infections such as CMV, and chromosome studies were also done as there was some suggestion that Hannah may have Down Syndrome. When all tests failed to give any useful information, an MRI scan was done. This showed an extensive malformation of the entire brain and the diagnosis returned was "diffuse bilateral polymicrogyria." As far as we are aware this is a congenital abnormality."
"Hannah has cerebral palsy (spastic quadriplegia) which has caused her to need surgery for tendon and hamstring releases, and has caused the shortening of one leg and the beginnings of scoliosis. She also has cortical vision impairment, severe developmental delay, swallowing difficulties and respiratory problems. She is 100% gastrostomy (tube) fed through a Bard button. She is non verbal and communicates only as well as we can interpret her different cries. She is non mobile and requires total care. There may be some hearing loss. Hannah's general health is quite good."
"Keeping Hannah comfortable and occupied are our biggest challenges. She likes to be on the move as much as possible, whether in your arms, in a pusher or car, on the mobile change table, or in a hammock. We need to be diligent in repositioning her and changing her activity frequently enough so she doesn't become bored. She is 14kg and transfers are becoming difficult. Constipation is worse since starting the diet and pain associated with this can be extreme. Hannah does not usually sleep during the day so we dont get a break in the daytime. At night she can't get off to sleep without sedation. The CP causes Hannah to get herself into awkward positions from which she requires rescuing. She has little cognitive ability and no speech skills, so it is difficult to keep her happy at times, because she understands very little of her environment and cannot be comforted with words, only by physical contact."
|Phenytoin (Dilantin) was tried unsuccessfully in the early weeks of treatment and not continued.|
Pyridoxine hydrochloride (Vit B12) was tried as a one off treatment in case there was a deficiency which commonly causes seizures. It was unsuccessful.
Clonazepam (Rivitrol) was introduced at 3 months of age and is still used. Side effects - copious quantities of saliva are produced.
Lamotrigine (Lamictal) was first used in conjuction with Rivitrol, was weaned and then re-introduced later with other drugs. We are currently weaning this drug from Hannah's regime. Side effects - none observed.
Sodium valproate (Epilim) was tried in the early months but discontinued. Side effect - Hannah was too sedated.
Topiramate (Topomax) was introduced nearly two years ago and is still used. Side effect - none observed.
Other medications - for reflux (omeprazole), constipation (lactulose), and nighttime sedation (chloral hydrate)
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