Within 30 hours of birth: For small amounts of time, separated by an hour or so, Gwen's head will turn to the left and her eyes will "tick" to the left.
Week one: EEG shows seizure activity from both sides of her brain. MRI, CT scan and several other tests confirm systemic infection and brain injury. (We were originally told the brain injury was hypoxic, from lack of oxygen. However, I've been told by a later special care doctor, that her brain injury is not consistent with a hypoxic brain injury.) We start
Phenobarbital for seizures, and antibiotics for the infection.
Week two: EEG shows seizure activity has been controlled with phebobarb, but G is sleeping through her feedings (which in the NICU, must be every 3 hours...on the dot.) Phenobarb dose is lowered, Keppra (Levetiracetam) is added. At the end of two weeks, we are released from the NICU on only Keppra; Phenobarb is discontinued.
Our Pediatric Neurologist is a doctor in his own practice near our home in Henderson, NV.
2-4 months: Gwenny smiles socially, on time. She also reaches for toys on time (left hand only.)
First 6 months: Gwenny stays seizure free on the Keppra until she hits 6 months, but at what cost?
She is highly agitated, crying very often...crying an intense, furious cry. There are some nights she is crying for 5 hours, almost straight, before she'll give into sleep at 1am. This is after sleeping little during the day, and being fussy most of the day.
We try everything. Rocking, bouncing, walking with her, feeding on demand, feeding on a schedule, burping, massage, diluted peppermint oil on her tummy, lavender oil on her feet, car rides, swinging, swaddling, bathing...everything. And she just cries through it all. On accident, we find that the sound of loud running bath water in our dark, small bathroom seems to calm her (if she is also swaddled and being rocked.) We then waste a lot of water- no recording or other sound has the same effect. And many times, she continues the intense crying as soon as we turn the water off. (This book was of some help: The Happiest Baby on the Block.)
We're told it's probably colic, and will "magically" go away when she hits 3 months of age. We wait.
She hits 3 months. It doesn't change. Maybe we just have an ornery baby, we think. But I start getting online...and reading about keppra. I read the regular side effects that they have to list, but then I come across blogs. Blogs of parents of children and spouses of adults who have gone from knowing sweet, caring people, to...being on Keppra. Temper tantrums and shouting and crying fits. They describe the behavior as "kepp-RAGE" from their beloveds...and I begin to wonder about this drug I am giving my infant under a doctors orders.
Our neurologist says if Gwenny stays seizure-free, we can try to wean the Keppra at 6 months. I become hopeful...and impatient. I don't want my baby to suffer seizures, but I don't want her to be angry all the time, either....for our whole family.
6 months: We start to wean (go off) the Keppra. We wean, under doctor's orders, very slowly, taking the dose down a little each week. It will take 6 weeks total for G to be completely off the keppra. Gwenny has been breastfeeding only up until this point (and gaining weight perfectly), and we start baby foods. Her first attempts to eat the food are hindered by her agitation. However, as the weeks pass on the wean, she begins to really enjoy trying new foods off the spoon.
7 months: Roughly half-way through the wean, we start to see something new...something bad. Gwen looks like she's been startled, a full body "scare," with her head and limbs being thrown back simultaneously again and again with 2-5 seconds of rest between the "jerks." These episodes last 1-5 minutes.
It's a Saturday when we decide it's something bad, we need a doctor, and the ER is the only place we can get a doctor in Las Vegas on Saturday night. We've spent sometime online and tell the ER nurses we suspect our daughter is having I
nfantile Spasms (aka West Syndrome.) After several hours, they send us home and tell us to make an appointment with our Neurologist the next week. We don't get in until Wednesday. The spasms continue until then.
We see our neuro, armed with video of the spasms this time. He believes G is having Infantile Spasms (this is later confirmed by the hypsarrhythmia in the EEG.) I beg to try a different drug as I do not want to up the dose of the Keppra. We begin
Topamax (Topiramate) and continue a low dose of Keppra. She also has to take
Cytra-2 to protect her kidneys from the Topamax. This is the beginning of the medicine circus.
8-9 months: Gwen loses 1 pound in a month of starting the Topamax. I have to take a 2 day trip for work, and she will not breastfeed when I return.
The keppra has a thick syrupy medicine taste to it; the topamax is intensely bitter, even with the "flavoring" the pharmacy puts into the liquid compound. When I taste a little drop of the topamax, everything I put in my mouth afterward tastes bitter as well.
Our neuro lowers the dose of the Topamax in hopes that Gwenny will start gaining weight again. The Infantile Spasms do not return, but a new seizure begins and her appetite does not improve.
9-16 months Gwen is having seizures from the left side of her brain, affecting the right side of her body. (I think these are considered Simple Partial seizures.) She stays conscious through them, sometimes they upset her and she fusses through them, and sometimes she'll play through it (dropping anything in her right hand.)
Through this time period we continue the Keppra, Topamax, and Cytra-2 while adding
Tileptal (Oxcarbazepine), Zonegran (Zonisamide) and
Klonopin (Clonazepam) at different times. For a few months we are giving Gwen 5 seizure meds, 2 to 3 times per day...and she is still seizing 20-50+ times a day.
Gwenny does not gain weight during this time period. It is an everyday struggle to get her to eat. She has very little energy to do anything. She is lethargic from so many meds.
When I go back to work from August to December, we go through 3 babysitters.
Finally, by upping the dose of the Klonopin, we have a little relief from the seizures.
Development: Gwen rolls over for the first time around 9 months, for about 5 days. Then she stops.
After starting
CST (craniosacral therapy) and seeing a homeopathic doctor around 13 months, Gwen makes some small progress.
She says her first consonant (Ba-ba), starts clapping, starts laughing and begins to roll over again at 15-16 months.
At our last visit with the Vegas neuro, he says he is "amazed" at Gwenny's eye contact.
Just before 16 months, Gwen and I move to Utah and get her started with Primary Children's Medical Center, doctors and therapists.
17 months: With UT neuro, we up doses of Keppra and Klonopin, wean all other meds. Seizure control is achieved.
18 months: Gwenny will reach for the person she wants to hold her, and begins scooting using only her arms to move around the room.
Gwenny is now 2 years old. We occasionally see break through seizures, usually due to sickness or fever. She is gaining weight, and is on the charts for weight finally. Although, she is not yet on the chart for BMI (she is too tall for her weight.)
I've been doing some reading on the Ketogenic Diet. This is a diet therapy that I came across in some blogs last year and asked our Vegas neuro about. I was kind of brushed off, being told the diet was difficult and possible dangerous. I was told there are no dietitians in Vegas that specialize in this diet, and therefore there would be no medical team to oversee the diet therapy.
The quick and dirty explination for the Keto diet is this: it's a high fat diet (80-90% of daily calories from fat) that is very restrictive in carbs and calories in order to achieve fewer seizure or become seizure free with no or lower meds. I called our neuro at Primary Children's to ask if she had a recommendation for me.
This is it: Ketogenic Diets: Treatments for Epilepsy and Other Disorders.
Some of the information that has hit me the hardest are excerpts such as,
"Studies show that the diet is particularly effective for conditions such as infantile spasms..."
"West syndrome is the most studied and there is lots of information that in about half of children who are started on the diet, about 90% of the spasms may go away. What is most interesting is that the sooner the diet is started the better the outcome. Knowing this, why not use it first?"
Hmmm...first? Like before trying Topamax that might make my child stop eating all together...?! Yes, why?
Another very interesting bit of info that I've learn from this book, is the existence of a Ketogenic baby formula. Yes, a Keto diet for an infant where all one does is make a bottle, like one would anyway if the child wasn't breastfeeding, and the formula is balanced to be high fat specifically to treat seizures WITHOUT medication. No measuring or mixing of foods like the diet requires for an older child.
In studies done on this diet, 10-15% were seizure free, about one-third have more than 90% improvement and slightly more than half will improve by cutting seizures in half- without meds. That means less meds may be used for 100% seizure control. This diet is also not necessarily a lifetime commitment. Some children show improvement and go off the diet after 2 years with the seizures not returning. Some children go to a modified diet, that is not as strict but controls the seizures.
There are possible side effects, (possible slight elevation in cholesterol, possible stunted growth) and that is why a doctor would monitor the child.
So, long story coming to an end is this: I'm speaking with a dietitian about this diet for Gwenny within the next few months.
She is now gaining weight which means some decisions need to be made with her meds. She may outgrow her med dose and magically not have seizures. However (and more realistically) she may outgrow the doses and the seizures may come back. At that point, the doses will need to be raised or meds changed. And at what cost? Klonopin is addictive and she can develop a tolerance to it. Then it will be a new med.
I'm excited about the possibilities this diet may hold for my baby girl, and I'm a little frustrated that we weren't given this opportunity last year when we needed it so desperately.
