Wednesday, November 30, 2005
We are doing well with seizures, but Jenelle continues to have "stuffy" days which confirms my suspicion that she has some allergies. If it continues to be an issue, I think we may need to start her on an antihistamine. We'll just wait and see because I hate to put her on more drugs if we don't have to!
That is all to report. Seizure wise things are great (knock on wood!) Now we're just trying to avoid the flu and other sicknesses that are common this time of year! Thank you for the continued prayers - I'll keep you posted!
Friday, November 25, 2005
Jenelle is doing really well at school, and big brother Jack got to visit last Friday morning. He really liked her teacher and her room. He thought it was very "safe" and very colorful. His teacher said he was a smart little boy (and she's right!)
Jenelle is very close to sitting up, and in fact has mastered rolling to her side and resting on her elbows very well. I was surprised the other morning when I walked into her room to see her sitting on her side with her head in her hand. It was as if she were relaxing or something. She only holds this position for a few seconds, but gets better each day.
Monday afternoon is our 30 day IEP with her new school. I'm confident we will all agree on everything, and I'm anxious to meet her new Physical Therapist and Occupational Therapist. That is the only thing I miss with Jenelle taking the school bus now; I rarely get to interact with her therapists, so I sometimes feel out of the loop. She still seems stuffed up, and I worry that she inherited my allergies (just what this child needs, more drugs!) Other than that, at least she is staying healthy (knock on wood!)
Hope your Thanksgiving holiday was wonderful! We're still waiting to hear from UCLA about the visit to genetics. Thank you for your continued prayers and support - I'll keep you posted!
Below is a photo of Jenelle as she arrived for Thanksgiving... all tuckered out with Grandma and we had only been there for 1 minute!
Thursday, November 17, 2005
Tuesday, November 15, 2005
1. Go into your archives.
2. Find your 25th post.
3. Post the fifth sentence (or closest to it).
4. Post the text of the sentence in your blog along with these instructions.
5. Tag five other people to do the same thing.
Here it is ... October 16, 2003: “He admitted her immediately because he was concerned with her being so sleepy.”
After waiting over an hour for a room we finally got in and took her out of her chair. Immediately she stopped fretting and was rolling around on the bed like nothing happened. The doctor checked her out quickly, and we were on our way home. The quickest stay in the ER next to the time we were directly admitted to the hospital! After it happened as I was driving to work, I called Brett to tell him what happened, and he responded, “Honey, she has already forgiven you.” I guess he wasn't exactly correct because if she had forgive me so quickly, we wouldn't have made the trip to the ER. But once we got in, she was fine - just a bump on the head... not that her brain wasn't already broken anyway.
I know I’m a great mom. Accidents happen and I’m sure I’ll never forget to do it again. I’m sure she has forgiven me, but I still feel horrible. It is a constant reminder that she is so fragile, and life for us is not normal.
Friday, November 11, 2005
Today, Jenelle seems to be getting sick as she seems congested and stuffed up. As she was falling asleep tonight, I decided to crawl into bed with Jenelle and stroke her hair. She seemed to enjoy it as she was quiet, but awake. All of a sudden, I held my hand in front of her face and said, "Hold my hand Jenelle!", and you know what?... She grabbed it! Well OK, she didn't really grab it, but she made a noticeable effort to put her hand into mine. She did it not once, but 5 or 6 times! I even called Brett into to watch - we're so proud!
Have a wonderful weekend!
Monday, November 07, 2005
Jenelle gets a window seat!
Here is Jenelle on her first day of school. This is a photo of the two little girls who are putting toys on her chest.
Here is Jenelle during circle time where her teacher is putting an object in her hand and making Jenelle hold the object - hand over hand!
And of course, here are the kids after trick or treating! Can't you just see the love?
Have a great week!
Friday, November 04, 2005
Remember a couple of months ago when I briefly mentioned that Jenelle's urine organic acid test results done in July had come back abnormal? Well, UCLA is still trying to figure out exactly what the results mean and Dr. Shields wants to refer us to Genetics as soon as possible. He was quite honest and said that with her abnormal results still pending, he absolutely did not want to put her back onto the Ketogenic Diet anytime soon. In fact, he thinks we may only ever revisit the Diet if and when we both agree that the potential risks outweigh the her current seizure state (i.e. he feels the diet could be potentially fatal to Jenelle, and until we know for sure, it is not worth the risk unless of course her seizures get so out of hand that they too could be fatal if we don't try something drastic.) While that is discouraging, he also felt that we are gaining great seizure control with the medications she is currently taking, and if this progress continues, we may start looking at weaning down these medications a few years from now.
Of course, Brett and Dr. Shields spent some time talking about the undefeated UCLA Bruins and both seemed pretty excited about "some big game" coming up on December 3 ;) I bit my tongue and didn't mention that my Father had gone to USC for undergrad. It's difficult to root for both teams when they are both doing so well and will eventually play each other… then again Jenelle is a Bruin fan for life because they have done so much for her. Should be a good game.
We had a bit of excitement this morning as Jenelle took her first bus ride to school. Unfortunately, because of a power outage in our neighborhood last night due to a traffic accident, one of the main streets leading to our house was closed off, and the school bus was 30 minutes late! I got some great photos of Jenelle getting onto the bus and will send them as soon as the power returns to our home so I can download the photos! Jack was very excited about the bus, and waved goodbye while yelling "Have a great day Boo!"
Thanks for the continued positive thoughts and prayers. I'll keep you posted!
Tuesday, November 01, 2005
Three days a week "typical" pre-school peers (i.e. "normal kids") are in class with the special needs students, and yesterday was one of the typical peer days. After handing off all of Jenelle's supplies (3 day emergency medicine supply, diapers, formula, etc.) Jenelle's new teacher took her out of her stroller and put her on the floor where the other children were playing. Two "typical" girls immediately took notice of Jenelle and held her hands, and put toys in her hands trying to play with her. Jenelle just kept looking back and forth to each girl and really seemed aware that they were interacting with her. It was really cool because I've never seen Jenelle react like that.
After introducing Jenelle, we had a quick meeting with the teacher, nurse and principal. We will be meeting again in 30 days to re-address Jenelle's IEP and change her goals as needed. I talked about the "one thing" the District wouldn't agree to change at our IEP, which was placing Jenelle down as qualifying for "low incidence funding" (additional funding) because of her blindness, and they immediately changed it on her IEP. They told me they like to use as many recourses as they can. I am very pleased with this school, and I really feel they know what they are doing with children like Jenelle.
Later around 3:00 p.m., Brett and I went to pick up Jenelle (so they could meet Brett.) Because of Halloween, she was in her costume as they had a small Halloween party that day. Jenelle won "Best Dressed Doll" for her Raggedy Ann costume which made me very proud. She slept well last night, which means she was very active all day. Jenelle seemed happy to return this morning, and should start riding the bus sometime later this week.
Halloween was a big success for the kids. I have some photos to share later, as well as photos of Jenelle's first day. Thanks again for keeping us in your thoughts and prayers. I'll keep you posted.
The chosen color to represent the fight to find a cure for Epilepsy is purple. We encourage you to wear a purple ribbon, a lavender awareness band, or Jenelle’s bracelet during this month to help increase awareness against this condition that affects so many lives including ours. And if you have the means, we encourage you to make monetary donations to an organization called the Epilepsy Alliance of Orange County, (please send an email to JannaEpilepsyOC at aol dot com if the link is not working) the organization that directly supports our family and Jenelle. If not a donation to the EAOC, please donate to the Epilepsy Foundation or your local Epilepsy support group.
Here is some information that I shamelessly stole from the Epilepsy Foundation website to help further educate everyone about Epilepsy, and about Jenelle’s specific type of Epilepsy.
WHAT IS A SEIZURE?:
A seizure happens when the electrical system of the brain malfunctions. Instead
of discharging electrical energy in a controlled manner, the brain cells keep firing. The result may be a surge of energy through the brain, causing unconsciousness and massive contractions of the muscles. But if only part of the brain is affected, it may cloud awareness, block normal communication, and produce a variety of undirected, uncontrolled, unorganized movements. Most seizures last only a minute or two, although confusion afterwards may last longer. An epilepsy syndrome is defined by a collection of similar factors, such as type of seizure, when they developed in life, and response to treatment.
From this mixture of sources, leading experts in the field have arrived at the following estimates of the incidence and prevalence of seizures and epilepsy in the United States:
Incidence -- Seizures:
300,000 people have a first convulsion each year.
120,000 of them are under the age of 18.
Between 75,000 and 100,000 of them are children under the age of 5 who have experienced a febrile (fever-caused) seizure.
Incidence -- Epilepsy:
200,000 new cases of epilepsy are diagnosed each year.
Incidence is highest under the age of 2 and over 65.
45,000 children under the age of 15 develop epilepsy each year.
Males are slightly more likely to develop epilepsy than females.
Incidence is greater in African American and socially disadvantaged populations.
Trend shows decreased incidence in children; increased incidence in the elderly.
In 70 percent of new cases, no cause is apparent.
50 percent of people with new cases of epilepsy will have generalized onset seizures.
Generalized seizures are more common in children under the age of 10; afterwards more than half of all new cases of epilepsy will have partial seizures.
Prevalence -- Epilepsy:
Prevalence of active epilepsy (history of the disorder plus a seizure or use of antiepileptic medicine within the past 5 years) is estimated as approximately 2.7 million in the United States. Prevalence tends to increase with age.
326,000 school children through age 14 have epilepsy.
570,000 persons over the age of 65 have epilepsy.
Higher among racial minorities than among Caucasians.
Cumulative incidence (risk of developing epilepsy):
By 20 years of age, one percent of the population can be expected to have developed epilepsy.
By 75 years of age, three percent of the population can be expected to have been diagnosed with epilepsy, and ten percent will have experienced some type of seizure.
Epilepsy risk in special populations:
The basic, underlying risk of developing epilepsy is about one percent. Individuals in certain populations are at higher risk. For example, it is estimated that epilepsy can be expected to develop in:
10 percent of children with mental retardation
10 percent of children with cerebral palsy
50 percent of children with both disabilities
10 percent of Alzheimer patients
22 percent of stroke patients
8.7 percent of children of mothers with epilepsy
2.4 percent of children of fathers with epilepsy
33 percent of people who have had a single, unprovoked seizure
70 percent of people with epilepsy can be expected to enter remission, defined as 5 or more years seizure free on medication.
35 percent of people with mental retardation, cerebral palsy, or other neurological condition will enter remission.
75 percent of people who are seizure free on medication for 2 to 5 years can be successfully withdrawn from medication.
10 percent of new patients fail to gain control of seizures despite optimal medical management.
How Epilespy affects our daughter Jenelle:
Jenelle’s type of Epilepsy is considered to be in the category of “Devastated” Epilepsy.
Children and adults whose lives are devastated by epilepsy are likely to have epilepsy as a result of brain disease or injury that also impairs learning, memory, attention, and motor and emotional function. Their seizures probably started early in life and may never have been controlled despite the use of multiple medications and combinations of medications. They are likely to be heavily medicated; they may experience some retardation or slowing; have difficulty in maintaining family support and social relationships; require help in everyday living; and may be more susceptible to bouts of continuous seizure activity (flurries) and status epilepticus. People of all ages in this category have a lifelong need for services and are substantially limited in their ability to function independently.Jenelle's seizures are most likely caused by something metabolic in nature and/or some type of birth defect or problem (ie: loss of oxygen or infection) that occurred very early during her development in the womb. Although she looks quite "normal" in photographs, Jenelle is severely mentally retarded and will always have seizures. This is not something she will simply “grow out of.”
The risk of seizure-related deaths is increased among people with poor seizure control and other neurological problems; sudden unexplained death occurs across all three groups.
Jenelle’s seizures began around the age of 8 months as something called “Infantile Spasms.”
West syndrome and infantile spasms are two conditions which occur together so
frequently that the two terms are used interchangeably. West syndrome involves
developmental arrest and possible loss of developmental milestones and has a
distinctive EEG pattern called hypsarrhythmia.
Infantile spasms are clusters of brief seizures involving various combinations of flexion and extension of the trunk and limbs, most common in the early morning or upon wakening from naps. In the most common form, the body bends as the outstretched arms jerk forward -- so called "salaam seizures. The condition is often mistaken for colic, at least initially, because the babies double up during the spasm and cry afterwards.
Eighty-five percent of children who develop infantile spasms do so before the age of 12 months; most stop having spasms by age 5. During this period, 40 percent will have other types of seizures.
The most common causes are tuberous sclerosis and perinatal asphyxia (lack of oxygen). In 40 percent of cases, there is no known cause and these children have the best prognosis; causes that are symptomatic have the worst. As many as 20 percent die before age 5; 75 percent are mentally retarded; and more than 50 percent have persistent epilepsy, half of whom develop Lennox-Gastaut syndrome.
And sometime at around age 18 months, she was diagnosed with "Lennox Gastaut Syndrome":
LENNOX GASTAUT SYNDROME:
Lennox-Gastaut syndrome (also known as myoclonic-astatic epilepsy) is a combination of seizures usually including atypical absense seizures (startingPlease "Think Purple" in November and try to spread the word about Epilepsy. Our daughter's case is one of the more devastating, however there are many people who are affected by Epilepsy and still manage a fairly "normal" life. Those with the occasional seizure also deserve a cure. Many do not have the freedom to drive, teens are often teased, and students have a hard time functioning in classrooms. Independence is a very foreign concept for anyone with Epilepsy because there is always the risk that a seizure will happen.
with automatic behavior without conscious control); tonic seizures (stiffening)
atonic or astatic seizures (drop attacks); mental retardation; a distinct slow spike-and-wave EEG; and onset between 1 and 5 years of age.
Some children are developmentally normal when the syndrome begins, but then lose skills, sometimes dramatically, in association with uncontrolled seizures. By age 6 most children with Lennox-Gastaut have some degree of mental retardation.
Children with Lennox-Gastaut syndrome typically have more than one type of seizure. The atonic-astatic (drop attack) seizures are most troubling because of the injuries caused by repeated falls. Many children wear protective helmets. The tonic (stiffening) seizures are most common during sleep, including nap time, whereas generalized tonic-clonic seizures (convulsions) occur most often on awakening.
Some of these children are prone to develop non-convulsive status epilepticus (a continuous seizure state that is associated with a change in the child's level of awareness. This requires medical intervention to bring it to an end).
As children with Lennox-Gastaut syndrome grow older, the types of seizures change. In most cases, the drop seizures abate. They are replaced by partial, complex partial, and secondarily generalized convulsions. Among teenagers with Lennox-Gastaut, complex partial seizures are the most common form.
This seizure syndrome is difficult to treat and often does not respond to the usual seizure medications. Other treatment choices may include the ketogenic diet, vagus nerve stimulation therapy or occasionally corpus callosotomy surgery.
The spectrum of individuals who are affected by Epilepsy is wide; our Jenelle just happens to be on one extreme end of the spectrum. Because of this, we feel compelled to share her story in order to increase awareness for all.
Again, we thank you for your prayers and support!