Q: How do you get any sleep?
A: Not easily and never enough! Ryan sleeps in his own crib in his own room. We have both an audio AND a video baby monitor trained on him about 8 inches away from us. The audio is loud enough to hear him breathe. We also have an EMFIT seizure monitor that sounds an alarm when there is excessive or no movement. While this is no guarantee that we will catch every nighttime seizure... we've caught enough to have a decent degree of confidence in this setup. Ryan is never far from a watchful eye in the daytime. He cannot play or be alone for any length of time.
Q: Won't Ryan grow out of his seizures?
A: That's a very difficult question to answer as no one has a magic crystal ball. Our hope is that Ryan will be able to medically manage his seizures with enough control to live as "normal" a life as possible.
Q: Does Ryan always have seizures when he is sick?
A: Very often. Ryan will even have seizures with fever as low as 99.5! We recently were given a second "sick-day" drug that should offer him some extra protection as long as we have enough signs of illness to begin administering it in advance. If he spikes a fever, especially in the night, this medicine will be of no help so we have to remain ever vigilant about protecting his health.
Q: Does he have frequent seizures? What types does he have?
A: Ryan suffers mostly from Generalized Tonic-Clonic (grand mal) seizures. Thankfully, we have not seen other seizure types manifest except when ill. The troubling thing about his seizures is that while relatively infrequent, they are extremely severe. We have to carry emergency medicine (on top of the 3x daily meds) everywhere we go, even just down the corner to the park. Additionally, the emergency medicine does not always work or multiple doses are required putting him into respitory distress. We are very familiar with our local EMS team (and they with us!).
Q: Good thing you have medical insurance!
A: Yes, medical insurance has kept much of the financial pressure off of us but it has its limits as well. We still have deductibles, prescriptions, coinsurance, copays and the portion deducted from the paycheck.
Q: Do you have any advance warning that a seizure is coming?
A: No. Ryan has had a seizure in the brief amount of time it took one parent to use the restroom. We've put him to bed happy and healthy only to be woken with a seizure in the night. Ryan has proven vulnerable with illness. Additional triggers can be overtiredness, overexcitedness, body temperature changes, strange/new places. Adults and older children sometimes have "auras" and can sense a seizure coming on. Hopefully Ryan will develop this awareness with time.
Q: Does he have complications from his seizures?
A: Ryan's recovery periods from seizures have varied with the length & severity of the seizure compounded by the volume of medicines needed to stop them -- from hours to days. He even once suffered from Todd's Paralysis, a temporary paralysis after a Hemi Clonic (one sided) seizure. Prolonged seizures can cause temporary or permanent brain damage which is why there is such a push to control and limit them as much as possible. Now that he's older and more mobile we are seeing seizure related injuries such as concussions.
Q: I know you don't have any local family. How do you handle emergencies?
A: We have been truly blessed with WONDERFUL neighbors (Morris, Spears & Cumings Families) who have run to our aid on more than one occasion to provide a safe haven for a frightened 6 year old or a driver for a frazzled parent. Several parents at Jacob's school have also stepped in to help with getting him to & from class or keeping him after school on short notice. Members of our local MOMS Club have been wonderful as well with meals, playdates and shoulders to lean on. We could not do it without you!
Q: I can't believe Ryan is sick!
A: Neither can we and we try our best not to treat him that way! Within reason we do our best to let him fully participate in a normal childhood full of fun & friends. One of our biggest regrets about this disorder is our relative inability to travel with him. We dearly miss all our friends & family back home in CA, CO and abroad.
Q: Where is Ryan Treated?
A: Ryan is treated at Texas Childrens Hospital, Blue Bird Circle Clinic for Pediatric Neurology. He is under the care of Dr. Angus Wilfong and the Epilepsy Center. TCH was recently ranked #5 nationally for Pediatric Neurology. We are confident that he is in good hands.
Q: I clicked onto that IDEA League site and read about Dravet Syndrome - that's terrible! I really feel for those families and children. Is that what Ryan has?
A: No. Ryan has not currently been diagnosed with Dravet's Syndrome although his genetic mutation has him predisposed to developing it. In Dravet's, the onset of more frequent seizures (especially those not triggered by fever/illness) and different seizure types is common and this usually happens by age 5-6. The diagnosis is based on Clinical Presentation and not just genetic testing alone -- we will be in a waiting pattern for the next few years, taking it one day at a time and hoping for the best.
Contact Information
|