Katelynn's Story

My beautiful daughter started having seizures when she was 4 weeks old. We didn't know what they were at the time but she seemed to have about 2 or so a day every couple of days. By the 5th week we decided to take her to the hospital. She has since been hospitalized 4 times and has been in and out for a total of 26 days. She has easily been poked over 100x's between IV's, blood draws, spinal taps.(On one occasion she was poked 11x's in an effort to get an IV in her. When the PICU nurse suggested the veins in her head, I stopped her. She needed a bolus of Phenobarbitol which I administerd orally to her by mixing it w/ her formula.) She is 3 months old now. She was diagnosed with generalized myoclonic seizures with tonic-clonic. The Dr's had her on 24 hour eeg's because they were looking for the hypsarrhythmia pattern. They haven't found it yet, but seem to think the seizures may develop into IS.

This has been devastating for me and my husband. She had a cat-scan, MRI, and a spinal tap done for viruses and all came back negative. Her seizures last for about 25-40 sec, are very intense, and has had over 20 in one day. One seizure alone can knock her out for hours. After her 4th hospital visit she left on a cocktail of Phenobarbitol, Keppra, Dilantin, and pyridoxal phosphate (long shot).

Her Phenobarbitol and Dilantin level was finally controlled and she has a blood plasma level for both very close to the max threshold. Keppra has also been maxed at 2ml twice a day. She still has seizures but much less intense and she's averaging 4-6 a day. She also has very bad reflux which she is on Zantac for. At night she struggles to get good sleep even though her meds are more concentrated at night. The reflux seems to be able to wake her with wheezing and gasping.

I have cried rivers and that has gotten me nowhere. Now I want to do everything within my power to get her seizure free. I am her champion. This coming week she will have another routine eeg and a 3rd attempt at a spinal tap to see if she has a metabolic disorder. The first 2 attempts after 6 needle tries in her spine were unsuccessful. They will test for treatable metabolic disorders only and for a folinic acid defeciency.

She is starting to get behind developmentally with head control. Early Intervention will evaluate her tomorrow. I hope she qualifies for services. I don't know at this point if new medications will be adminstered to get her to zero seizures. I think it will only be a matter of time before she breaks thru completely. The Dr's did suggest the Ketogenic Diet, however that will mean another trip back to the hospital for monitoring. That may be our next step if the spinal tap comes back negative.

I don't know how other families get thru this. I cry everyday. Sometimes I feel so desparate with no solutions, no end to the seizures, no answers from the Dr's. Can my child outgrow this? Can this go into remission spontaneoulsy? I have a 3 year old who needs his Mommy too, but she is consumed 100% in tyring to help his sister. I am at my wits end. I asked for an extension from work and will go back in a week. How will I manage? My parents (God bless them) will take on the huge responsibility of not only caring for my 3 year old but also my daughter and administering her meds. This is truly the most difficult thing I have ever had to deal with. I need strength. Can you offer any advice/stories/medication that may help?