Logan 's Story
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Logan's Story
  Logan Andrew was born October 1st, 2004. He delivered on his due date and there were no complications with the pregnancy or delivery. As far as everyone was concerned he was a healthy baby boy.

For the first 6 months of Logan's life things seemed to be "normal." He was progressing at what pediatricians regarded to as being on track for his age. He was gaining weight and inches and again, as far as everyone was concerned he was doing fine.

On March 28th 2005 my wife noticed a funny movement our son was making. She described it as ever so subtle, where his arms went to his sides, his knees came up to his chest, and he made a "funny face". After discussing this we both agreed she should call the pediatrician. The nurse on the phone stated that it sounded like constipation, that he just needed to pass a bowel movement and everything would be fine. This made sense to us as he hadn't had a bowel movement in several days. Logan was nursing and my wife had eaten a few things over Easter that were not normally in her diet. In our opinion based on what we knew she ate, and the fact that Logan hadn't had a bm in a few days this made perfect sense. We gave him a little prune juice and everything came out fine. The next day she called me at work and he was still doing these funny movements and they were becoming more frequent, and more pronounced. She called the pediatrician again and they explained that maybe he needed to pass more and was "pushing" to make it all come out. 

After several days of these funny movements the intensity stepped up. Logan would have 5-10 of these in a row that were 3-5 seconds apart. He began having multiple episodes throughout the day (clusters) and the arm, leg, and eye movement become more pronounced. At this point we realized something was wrong. We video taped the movements and I took them to my medical director at work. I asked him if he thought this was constipation. He stated that he didn't think it was, and suggested we get Logan to a Pediatric Neurologist.

We were able to get an appointment that very day at Phoenix Childrens Hospital. As luck would have it Logan started in with his movements while we were in with the Neurologist. She stated that she thought she knew what it was and wanted to run a test (EEG). Logan was hooked up to the machine and 35 minutes later we were told that he had irregular brain wave patterns (hypsarrhythmia) and it was her opinion that he had Infantile Spasms. The neurologist stated that it's a form of epilepsy and can sometimes be cured with medication. She wrote a prescription for Topamax and said come back in two weeks.

It wasn't until we got home and searched the internet for IS (infantile spasms) that we learned how serious this was. We spent the next 4 days researching and getting Logan in front of a variety of people for other opinions.  After coming to the realization that he was very sick and needed to begin treatment he started on Topamax 4/7/05.

The day before Logan started Topamax he had 4 clusters with a total of 103 movements. (1 movement = arms going out to his side, knees coming up to his chest, and his eyes rolling back into his head.) He started on a small dose of Topamax and had a significant change in a short period of time. On the 6th day of Topamax he was SF (seizure free) for a total of 4 days.  The next day he had 1 cluster with 17 movements, the day after that he was SF, and the day after that he had 1 cluster with 3 movements.  From that point the seizures increased to 110-140 per day. 

The Neurologist at Phoenix Childrens Hospital was very nice but we did not feel she had the experience we were looking for with IS. After a lot of research and phone calls we were able to find a Dr @ Barrows Neurological Hospital who specializes in IS. He agreed to see Logan and agreed that the treatment he was receiving was not aggressive enough. This was a turning point in our situation.

Dr Jong Rho is an expert with regards to IS. He spent countless hours going over statistics, listening to our concerns, and discussing what options we had. He stated that the Gold Standard Treatment for children with IS similar to Logan's situation (developing fine up until seizures started ) was a drug called ACTH. It is a steroid that is injected into the child's leg.  He went over all the possible side effects (see Treatments/Medications) and discussed what we might expect over the next several months.We were familiar with ACTH as we had read about it when he was originally diagnosed. We both stated at the time that we would never give him that drug.

After watching him go through 100 plus seizures a day our thoughts changed. His first injection of ACTH was on 5/5/05. He was admitted into the hospital for the first 3 days of injections (they want to make sure there are no immediate reactions, and they also want to make sure the parents are comfortable giving the injections.) On May 10th 2005 Logan was SF and has been since. He continued with the ACTH until 7/1//05.

Logan was supposed to have stopped the injections on 6/20/05 but due to contracting the rotavirus while @ UCLA Medical Center for testing, he became very ill and ended up in the PICU (pediatric intensive care unit) @ Phoenix Childrens because he went into acidosis. After he was discharged from the hospital our Dr recommended switching from Topamax to Zonegran (another seizure medication) as one of the possible side effects of Topamax is acidosis. Logan was weaned off Topamax, started on Zonegran and ACTH was extended for another 11 days.

Once the injections were stopped we had him assessed for developmental progress. He was put 4 to 5 months behind developmentally.(at the time was 9 months old)  Before all of this started Logan was able to sit up (when we placed him sitting), roll over, smile, and babble. 4 days after the first group of seizures he stopped smiling and doing most of these things. (this was before he was started on any medication). On July 1st 2005 he couldn't do any of it. He was very big from the steroids and had a difficult time keeping his head up when we laid him on his stomach. (see Treatments/Medications page).

He started physical therapy, occupational therapy, and speech therapy the end of July 2005.  Each session is one hour and is done in our home. It was several months before we saw any major developments. He started smiling at us again, babbling a little and trying to roll over. In October he started to army crawl (just using his hands to crawl) and then learned to push himself into a sitting position.  In November he started to crawl on his hands and knees and was pulling himself up to things.

As of December 2005 he can crawl pretty good, pull up to everything, is attempting to stand without holding on to anything,  he says mama, dada, hi, claps,  and will walk if you hold his hands. For the first 6 months of Logan's life he didn't sleep more than 4 hours at a time. After IS it was more like 2-3 hours at a time. In November he slept for 8 hours (first time in his life) and has been doing much better.

In hindsight there were things that we noticed, or comments people made that now make sense with regard to the diagnosis of Infantile Spasms. For example after he was a few months old people always commented on how "mellow" he was, and how he was such a good baby. That most kids his age won't just sit still and not be concerned about their surroundings. He startled easily and we noticed he didn't make eye contact with us often, that even when he did he would look away shortly after.  His focus on things just wasn't that good.  

We are hopeful that Logan will be one of the "lucky ones" and beat this diagnosis. There is not a day that goes by where if he so much as makes a funny movement or looks at us differently, our hearts skip a beat. We are thankful for each day and try not to worry about tomorrow.

December 24th 2005. Logan looking for his presents.

(Page 3 Treatments/Medications)