On December 3, 1997 little Alex came to us with usual fanfare and no complications. What surprised us about Alex on the day he was born was that he was holding his head up and his eyes were open immediately. He was beautiful and we loved him instantly. The first 3 ½ months of growing up went much like his brother’s until April 15th, 1998, a day that would forever change our family. My husband and I dedicate this page to our little miracle Alex.
***Read Alex's full story below and/or click here to go to his HOME PAGE where you can see many pictures, get more information on surgery, and see more links (medical, other stories, testing info, etc..)
When Alex was about 3 ½ months, I started to noticed that he would “startle,” but what made it different than a regular baby startle was that it was a series of 4 or 5 “startles.” This would happen when it was quiet, noisy, and at anytime of day. Around that same time we had been visiting the pediatrician trying to figure out why he was having “crying spells” at about the same time every night. First the doctor thought gas, then colic but the crying continued. I knew something was not right so I continued to keep a close eye on Alex.
One day while I was working in the kitchen, I heard a bang and Alex started to cry. I ran over to the next room where he was in an Exersaucer playing with his brother. He was fine and had stopped crying. Two seconds later, before I could reach him to pick him up, I saw him slam his head down and begin to cry. I picked him up and as I held him close I noticed a series of “crunches.” I immediately called the pediatrician who said, “It sounds like you’re describing seizures”. Needless to say, I fell apart. My oldest son stared at me while I cried and finally composed myself. Alex was seen that day. The pediatrician didn’t witness any spasms. Nevertheless, she scheduled an EEG for that Friday. For two days my husband and I tried hard to stay positive, stay strong and act “normal” for Alex and his brother Anthony.
On Friday, April 17, 1997, (his brother's 2nd birthday) we were told that the EEG showed hypsarrhythmia and Alex was diagnosed with infantile spasms. We bombarded the neurologist with questions “Will he be normal? ..Does this cause brain damage?..” Almost all were answered with “..anything is possible..we can’t know for sure..”. Two days later, he was admitted to the hospital for the whole routine (urinalysis, bloodwork, spinal tap, MRI..all results negative & normal.) Alex fell in the idiopathic subgroup of infantile spasms, thank God. The next day, we were taught how to give our baby boy his ACTH shot. For days I cried every time I gave him his shot.
After about 4 weeks on the ACTH and clonazepam, the spasms stopped and his EEG was looking good!! However, it didn’t quite feel like the nightmare was over. Alex was doing nothing. Since beginning treatment, he had stopped doing raspberries, holding his head up, moving his arms, kicking his legs, rolling over, etc. We also knew deep inside that there was a possibility that the spasms would return.
About a month after the last spasm, Alex had his last shot of ACTH, but continued on clonazepam. We were forced to wean him off the ACTH faster than the neurologist had wanted, due to hypertension and an enlarged heart.
One month after Alex’s last ACTH shot, after having been seizure-free for two months, I saw what I feared most. He dropped his head several times while I held him. I suddenly felt sick to my stomach and inside I was crying, “Noooo!” I was just getting used to the idea that Alex was all better and I just could not believe that the nightmare was starting again!! I immediately called my neurologist and asked her to schedule an EEG. This time the EEG showed abnormal activity on the left hemisphere.
Our next step was to head to Montreal in July, where he would be prescribed Vigabatrin, a drug not available in the United States because it is not FDA approved. The Vigabatrin did nothing and he was weaned off after about 2 months. We then added Valproic Acid in September which didn’t make a difference until we added topamax one month later. The topamax cut the number of seizures in half. We then weaned him off the clonazepam (very addictive). We had also tried Vitamin B-6, but had no luck. At this point the prospect of drugs curing Alex was growing remote.
In October 1998, Alex spent three days in yet another hospital for further testing to conclude whether he was a possible surgical candidate (continuous EEG monitoring, PET scan, SPEC scan, BEAM). We found nothing new. The EEG indicated a focal point suggestive of cortical dysplasia, however the PET scan revealed nothing.
My husband and I were not giving up on the possibility of a reason and solution…a possible focal point. I contacted Dr. Harry Chugani, a neurologist in Detroit who specializes on PET scan studies. When I called, he answered the phone! He was interested in seeing Alex and asked us to bring him for more PET scan tests. We flew down in December 1998 and about 30 minutes after the PET, the doctor sat us down in front of the computer with the image of our son’s brain and told us he most definitely had a focal point, possibly two all in his left hemisphere. If more than one focal point had been found and in both hemispheres, surgery would have been out of the question.
Dr. Chugani said that the seizures would continue to damage his brain and by age three the damage would be irreversible, meaning that he would not be capable of further learning…he would remain at that age level the rest of his life. We had a mixture of emotions. It was upsetting to find a problem with his brain, but a relief to know there might be a way to end it. This was the opportunity we were looking for to end these seizures for good and give Alex a second chance at a normal life.
To make a very long story short, Alex’s case was discussed at the surgical conference in January 1999 where everyone agreed that surgery was an option. He was put on the surgical list and on March 9 and 12 he had his surgeries. The first was invasive monitoring (where grids of electrodes are placed directly on his brain) to further pinpoint the problem area. The second was the actual resectioning of his brain where they removed 70% of his left hemisphere. They spared his motor and sensory cortex.
The surgeon told us after the first surgery that she could see that his brain was abnormal. The blood vessels were not organized normally (something that could not be detected by MRI alone). The pathology report later stated that there was an irregularity in neuronal density of layer 3.
Alex had minor complications after surgery, including getting sick in the hospital, a fever of 102-105 F that lasted weeks and four seizures within 5 days post-op (these are not uncommon after major surgery). Alex has been seizure-free since March 17th!!!! **Update: he was seizure-free 6 months..read his updates by clicking on ALEX's HOME PAGE below**
A year has passed since our nightmare began and our lives are now filled with hope and joy. We are confident Alex will catch up for he is already making progress. Two weeks after Alex’s surgery, he began doing new things. We released what was once trapped in his continuously seizing brain. He is a little sponge and we call him Curious George. So far the surgery has been a success.
Alex is now 18 months old and has been evaluated at about a 10- month level (it all depends on the skill). Early Intervention has been coming to our home since June ’98 for physical and occupational therapy. They have been great. We have added speech since March ’99. Alex pulls up to standing and walks with “push toys.” He has 5 consonant sounds (4 more than before surgery). He makes noises all the time now! He’s always clapping and smiling and his brother always makes him laugh. The last two weeks of May he began waving “bye-bye”, said his first string of consonants/vowels (ma, ma, ma..), he shook his head no, and he picked out a toy I asked for. In June, he learned to give (voluntary release) which is a milestone accomplishment.
My husband and I are very grateful to our loving family who has been wonderful through this whole ordeal and to our friends who have been very supportive and strong for us. I’ve also made friends over the phone with other mothers of IS children and other seizure disorder children...many have been a wealth of information. We will always be grateful to Dr. Chugani and the team of experts who examined and operated on our son. Thank you all!
June 1st, 1999
My name is Emma Catanzaro and I decided to write this page hoping that it will give hope to other families faced with this ordeal. Although surgery isn’t the answer for everyone, it was for us. We are confident we did the right thing for Alex and we are very happy with the results. My heart goes out to all who are living in the world of epilepsy…God Bless!.
If you’d like to know more about our experience with the surgery you can look at our personal journal or email me at thecats5@yahoo.com.
January 30, 2000
There have been some changes to Alex's story since writing this page in June, 1999. First, Alex had a four month follow-up in Detroit in July. Things went really well. Dr. Chugani was happy with what he saw. Dr. Alexa Canady (neurosurgeon) greeted Alex with a kiss and was also pleased. It was quite a different experience form the last time we were there. His EEG showed some abnormal activity on what remains of his left hemisphere, but no seizure activity. We were told this is normal after such surgery. The brain needs time to heal.
In September, 1999, Alex had a cluster of spasms. The spasms fortunately didn't affect him. They were very slight and barely noticeable. We immediately had an EEG done on him. It showed no change since July of this year. Alex was put on Vigabatrin and a week later the spasms were once again gone! Even though Alex's spasms came back, we don't regret the surgery for a second. Alex has been doing a lot of progressing developmentally. He is doing many new things!! For example, he is pointing and vocalizing all the time. You can now show him new things and he mimics them. For example, he raises his arms up and down when you sing, "the people on the bus go up and down....", he brushes his hair and teeth, he pretends to put lotion on his hands when he sees you put it on, he figures out learning toys after you show him how first......etc...etc... He says 4 words. His OT evaluation in December showed that he is (depending on the skill) at a 13-21 mos. level. His lowest scores are in receptive and expressive language. His highest was in interpersonal/ social behavior. This month he had a speech evaluation in which he tested at a one year level (he is now 2). As far as I'm concerned, he has done 1 year of catching up in speech in the 10 months since surgery. He's a friendly, happy little boy who loves chasing and playing with his older brother, Anthony. On December 9, he gave us the best Christmas present anyone could have given us........He started to walk. Needless to say, we are very happy and had the best holiday season ever!
This is a short update even though I could go on forever about the new things he's doing. We are very blessed!! I will continue to update his page periodically. Thank you all for reading Alex's story!! I have updated the photo album with new pictures of Alex! Click on Alex's home page to see them!
Click here to go to ALEX'S HOME PAGE
If you'd like to sign Alex's guestbook, click on it below. We'd love to hear from you!
Click here to view Alex's 1999-2000 guestbook.
When first finding out about Alex's diagnosis and the uncertain future that lay ahead, we were fortunate to come across an optimistic web page about a little boy named Eddie. Click here to go to Eddie's Story. It helped give us hope when our world seemed to fall apart.
SURGICAL LINKS:
The following are links to Alex's "surgery buddies." I have met some wonderful people in the past year. Two mothers that are very special to me are Tonee and Sheila.
Tonee's son Matthew (three years old) had surgery in Oct. 98. I came upon Matthew's story 4 months before Alex's surgery. I read his article and was fortunate to find Tonee's number and speak with her. She helped me get through the anticipation, the actual surgery and the recovery period. We communicated for about 6 months and finally had the pleasure of meeting one another. The following is Matthew Hummitch's article. If you are the least bit interested in surgery as an option, click here to read his miraculous story.
Sheila's son Trevor (six years old) had surgery one month after Alex. Tonee told her about us and she visited us at the hospital after Alex's surgery. It was so nice of Sheila to pay us a visit. Ironically, we were of some help to her because seeing Alex post-op was like a preview of what was to come for her son's soon-to-come surgery. Click here to read Trevor's story.
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