 |
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
|
Infantile Spasms |
|
|
|
 |
|
|
Hannah's Story |
|
|
|
|
|
Click here for more pictures of our Angel Hannah, and our family! |
|
|
|
|
|
|
My name is Christi, the mother of three beautiful children - Jared, Hannah and Ryan. This page is dedicated to my daughter Hannah. |
|
|
|
Hannah was diagnosed with infantile spasms when she was 3 � months old. At that time I searched the Internet for any information I could find. I found several sites like this that gave me light during a very dark time. I knew then that no matter what Hannah's outcome I would tell her story so other parents could find strength in knowing they are not alone. |
|
|
|
JANUARY, 2004 UPDATE:
Hannah is doing wonderful. She has exceeded all medical expectations and is our true miracle. Sometimes I forget where we have been, other times I sit and watch her and thank God for keeping her healthy. Despite the scary start with IS her development has remained normal. She tested age appropriate or above in all areas. We now see our neurologist only once a year... and soon will be released. The infantile spasms diagnosis still remains a mystery. I suppose we will never know what caused it. Though she is already four, it is still just the beginning. No one ever knows what may lay ahead...but I do know we can handle it! Hannah has an amazing spirit and love of life. She is a survivor! |
|
|
|
Hannah's story begins on September 2, 1999 when we were blessed with a beautiful baby girl. Hannah was born at 37 weeks gestation weighing 5 pounds and 14 ounces. I was on bed rest for about 3 weeks due to having early contractions but otherwise the delivery was normal and Hannah had been healthy until December 1999. When she was 2 months old she got her first immunizations (DTaP, Hep B, Hib, IPV) with no apparent reactions. A couple of weeks later as her third month approached she started to become fussy and unhappy (what I thought was probably colic). The first sign that something was possibly wrong happened one evening when I was holding Hannah. I noticed her right arm beginning to twitch. It lasted for less than a minute. It was unusual enough to notice. I even pointed it out to my mother-in-law who was sitting close by but neither of us thought much of it. |
|
|
|
The next day (December 23, 1999) Hannah was in her swing and started fussing. As I was taking her out of the swing her arms and legs started twitching, she started panting and her eyes became fixated. I knew immediately that she was having a seizure. It lasted less than 30 seconds. I immediately rushed to our doctor's office. She appeared to be fine before I even got out of the driveway. I was there in less than 10 minutes after her seizure. I explained what happened and the doctor on duty agreed that by my description it was most likely a seizure. He sent us directly to the lab to have blood drawn. The results were normal. I was told that if it was a seizure it was a very mild one. (apparently after a seizure certain electrolytes are elevated in the blood but Hannah's were normal). We were dismissed and told if it happens again to come back. |
|
|
|
Worried that it would happen again I watched her every minute of the day and I slept with her at night. As the next five days went by (Christmas Eve and Christmas) I noticed her doing a sudden bend almost as if she was doing a stomach crunch. Sometimes it was a single one and other times it would be three or four in a row. It happened once or twice a day and afterwards she would breath a little heavy and look startled. I had no idea this was a seizure. I decided to try and catch her doing this on the camcorder to show the doctor. On December 28th. Hannah woke up around 5 AM and had another seizure (not the spasms that I had been observing). This was just like the one that happened 5 days earlier. It lasted for maybe 30 seconds. Somehow I managed to record a little bit of it on tape (about 10 seconds). I showed the tape to our pediatrician and then told her about the bending motion Hannah had started doing since the first seizure. Without saying much our pediatrician sent us to Children's Medical Center. When we arrived we were sent for an EEG. After the EEG we were introduced to a pediatric neurologist Dr. David Siegler. We again showed him the tape and described Hannah's behavior the last week. He left the room for a moment and while he was gone she began doing the bending, crunching motion again. He returned to see the tail end of a row of crunches himself. He then said, "it is infantile spasms". That was the first time I had ever heard the term, and thought it sounded innocent. The EEG confirmed it and he showed us the hypsarrhythmic pattern (spike) in the EEG reading. We immediately started talking about the treatment available and her prognosis was barely discussed. We had asked questions regarding prognosis, but it was kept general because further tests needed to be performed. We were very unaware of the seriousness of Hannah's diagnosis until a few weeks later when I got on the Internet. I was devastated by what I read. I remember calling our doctor and asking him if he agreed with the horrible statistics and prognosis I had read. He said they were accurate but not to look too much further into it because statistics don't mean much (remember that). Infantile Spasms is rare...Hannah still got it so we thought why would it be unreasonable for us to believe we would be in an even smaller percentile that has a happy ending. In hindsight I am so grateful for his bedside manner and advice. It was much easier for me to believe things were going to be just fine. I also believe positive thoughts can help the outcome. |
|
|
|
When we discussed treatment our doctor told us that ACTH was the most common treatment but that we should also consider vigabatrin. My husband and I decided together that the ACTH would probably be the best route for us. We felt better about the fact that it was temporary (she would get shots for no more than 6 weeks), where the vigabatrin was something she would have to stay on for a longer time. Our doctor also recommended we start B6 (pyridoxine) vitamin because of some studies he had read. We started a B6 vitamin (100 mg twice a day) that day and began the ACTH injections (40 units) on December 30, 1999, seven days after her first seizure. We were warned that during the treatment she would be extremely irritable and probably not sleep much (which was true). Amazingly after the first week on the steroid injections she became less irritable and much happier. Even though it seemed like she did not sleep the whole month of January, at least she was in a better mood. Hannah's last spasm was on January 8, 2000. After two weeks of ACTH injections an EEG was repeated and it was normal. We began weaning her from the steroid but continued giving her the B6. An EEG was repeated during the weaning and after being off the ACTH for a week. The EEG's remained normal. I should also mention that during that month we also had an MRI and tons of blood work. All of the tests have been normal. We located another pediatric neurologist who specialized in infant seizure disorders in Dallas, Texas. His name was Dr. Van Miller. We took Hannah down for more tests and a second opinion. He confirmed the IS diagnosis but was very encouraging about other patients he had seen with the disorder who were doing well. |
|
|
|
Eight months went by and Hannah was doing great (development was right on track). She was taking nothing but a B6 vitamin and it was down to 100mg once a day. We also had decided to hold off on immunizations because we were not sure if one had anything to do with the other, but felt comfortable waiting awhile just to be safe. After purchasing and reading books on immunizations (which seemed pro-immunizations) we decided to pick and choose our immunizations. After Hannah's first birthday she had her second set of shots (Hep B, Hib, Prevnar). Four days later while Hannah was spending time with her Grammy (my mother) she noticed Hannah stop suddenly and drop her head and chin. She stared down at the floor with her mouth open and would not respond when her name was called. It lasted 3 or 4 seconds and happened 4 to 5 times within 15 minutes. My mother was afraid Hannah may have had a mild seizure. I trusted my mother's opinion and we took her back to our neurologist and an EEG was done. An abnormality showed up with a left frontal focus. Even after the EEG findings Dr. Siegler was not convinced she had a seizure. He said an abnormality like this may or may not cause a seizure and could go away over time (2-3 years). He also reassured us by telling us that millions of people are walking around with abnormalities and just do not know it because it has not caused them any problems. We were still given an option to put Hannah on epileptic med as a precaution but we did not feel it was necessary since it had only happened once. We opted to wait. A year has passed since then and she has not had any other "spells". |
|
|
|
Shortly after her diagnosis our pediatrician recommended we enroll her in an early intervention program called "Sooner Start". I believe most states in the U.S. have an early intervention program for children with developmental issues. Although she was showing no delays her IS diagnosis qualified her for services. It is a wonderful organization that is free of charge and available for children under the age of 3. She has had a number of developmental screenings and she has always tested at or above age level in all areas (Social/Emotional, Adaptive, Gross and Fine Motor, Cognitive and Communication). The only thing developmentally which was unusual was at 4 months old she was showing a strong preference for her left hand and not using her right hand (at that age babies do not show a right or left hand preference). We really worked and encouraged her to reach and grab with her right hand. As time went by we realized she could use her right hand just fine but just strongly preferred her left. Interestingly though, her abnormality showed up in the left frontal lobe and she had a left hand preference. The left side of the brain controls the right side of the body. I somtimes wonder if it was somehow related. It could also be hereditary, her grandmother is a lefty. |
|
|
|
Hannah remained on the B6 (100mg daily) until she was 18 months old. We do not know if the B6 helped her or not but knowing it couldn't hurt (excess pyridoxine is excreted through the urine) we didn't want to take any chances. We see our neurologist every six months now, and will probably continue for a few years. But thanks to the many continued prayers and wonderful doctors, Hannah continues to be a normal healthy toddler. |
|
|
|
About Hannah - Hannah has been enrolled in a preschool program since she was 16 months old and loves to go to "school". Her favorite activity is music, she loves to "sing" and "dance". She can charm anyone she meets and will reel them in with her sweet smile and soft brown eyes. She has a sense of humor and a giggle that comes from the belly. She has so much personality and a beautiful spirit that shines through. She has taught me more in the last 2 years than I could ever express. It has been a humbling experience and put everying into perspective for me. I take nothing for granted and thank God everyday for keeping our children healthy. She is my angel and I am so lucky to have her in my life. |
|
|
|
If you or someone you know is dealing with IS just remember that you are not alone. There is hope. I know how awful, helpless and lonesome an experience it is to watch your innocent little child have seizures. It is an experience I would have rather not had. But never the less, it has changed my life. |
|
|
|
There is a lot more information on the net about IS. Below are more stories of kids and their families who have been through the IS ordeal. These stories illustrate the wide-ranging results children with IS can achieve. |
|
|
|
Click here to read all stories registered with the IS web ring |
|
|
|
 |
|
|
|
Special Thanks To:
Dr. Dawn Mayberry and Dr. David Siegler for their prompt actions and for taking such excellent care of Hannah.
To our cousin, Nicole Boyles for creating this web page.
And our friends and family for the prayers and encouragement. It made all the difference. |
|
|
|
Click here to read Mommy's letter to Hannah |
|
|
|
 |
|
|
  |
|
|
|
|
|
|
 |
|
|
|
|
|
|
|
|
|