Merry Christmas from the Akhaabi Family...

One year later...

It has been exactly one year since we given the news about Caillian's condition. And as heartbreaking as it is, we continue to have a positive outlook about his future and take each day and each milestone as it comes. Since my last post we were given the news that he was seizure free since being on the new medication, Viagabatrin. In the past few months we have noticed that they have returned however they are nothing like they used to be and his medications have been adjusted accordingly given that he now weighs more. Since August he has been released from his cardiologist and continues to progress developmentally each and every day with the help of his PT and OT. He also sees his Ophthalmologist every three months to check for any vision loss. So far so good, he has passed his vision tests with flying colors. We couldn't be more proud of him for the progress that he has made and continues to make. He continues to show us every day that he is a fighter and nothing is going to stop him. I know that this update is long overdue and I promise to keep it updated more frequently than I have done in the past.

A trip to NYC....

So last Thursday Caillian and I drove into the city for the first time for his Ophthalmologist appointment while Regina stayed home with daddy. Caillain has to have a special eye test done called a electroretinography (ERG) to check for vision loss, more importantly peripheral loss due to the new medication that he is now taking called vigabatrin. Well everything checked out and the test went well even though he wasn't very cooperative. We will go back every 3 months to have the test repeated while he is on the vigabatrin.

My Little Trooper...

Last week we met with the neurologist and she increased the Vigabatrin which seems to be working except for a few little twitches. However since she increased the medication he has been seizure free. We will have to wait another two weeks and if he continues to be seizure free, she will have him go back into the hospital to undergo another 24hr video EEG to confirm that he is in fact seizure free. We are also in the process of tapering him off of the Phenobarbital and the Predisone. I am not sure how much longer he will be on the Phenobarbital but he has four weeks left on the steroid. We also had our weekly appointment with the Pediatrician to have his blood pressure checked and it was normal. Thank goodness, so hopefully now that we are almost done with the steroids, he will continue to have normal blood pressure checks.

Can I just tell you how much happier he has been since he has been seizure free and since we started cutting him back from the steroids. He actually now enjoys his therapies and is self-soothing. He also started going to bed on his own and no longer needs to be nursed at night in order for him to go to sleep. He is actually starting to wean himself. I am so proud of him. He is my little trooper. He is becoming much more active even though the new medication seems to make him sleepy at times.

I wil post some pictures of him soon.

Update

Caillain was admitted into the hospital last week on June 15 for another 24hr EEG follow-up. We were told that the steroid had stopped working and there were no signs of improvement since our last visit. They decided to start him on a new medication called Sabril (Vigabatrin). Sabril was just recently approved in United States by the FDA in September 2009. Prior to that, their patients had to get the medication from Canada. The reason that it was just approved by the FDA is because it has a serious side effect. It can cause peripheral vision loss which is not reversible. Therefore he must see an Opthamologist within in two weeks of taking the medication. If there is any sign of vision loss they will stop the medication. On the upside we have noticed very little to no seizures since starting the medication. Dr. Glicksman has also told us that they have never had to stop the medication due to vision loss. We are very hopeful that this medication will stop the seizures completely. He is still on all of the other medications as well including the steroid. They can not just stop it because his body will go into shock, however they have started to taper it and will continue to do so for the next 8 weeks.

We saw the pediatrician today and his blood pressure was normal.

Background Story

It all started last year when Caillain was about 6 months old and he wasn't meeting his milestones like his big sister had when she was his age. He wasn't sitting up, playing with toys, holding his bottle,or starting to crawl. Everyone had told me not to compare and that boys are usually lazier than girls. We were told by the pediatrician that we would wait until his 9 month appointment in December to assess it further. At his 9 month appointment he was still not meeting his milestones so the pediatrician referred us to a neurologist and early intervention. We got an appointment right away with the neurologist and she ordered for an MRI and EEG to be done. So on Monday December 21, 2009, he was sedated and had his MRI and EEG done. The next day we got a call saying they found something on the MRI and asked if we could come in the next day. When we went in the neurologist told us that his brain did not fully develop in utero and that the EEG showed possible signs of seizures. In regards to the seizures, we started noticing jerky movements like he had been startled. After it was confirmed that these were in fact seizures, the neurologist stated Caillain on an anti-seizure medication called Phenobarbital which is a sedative used to calm down the brain. The seizures were still there and not getting any better so when we went for our follow-up appointment, the neurologist increased the dosage of medication.

In the meantime we had made another appointment with another neurologist out of the Children's Hospital in Hackensack and was scheduled to meet with her on April 5 for a second opinion. When we met with her, I knew from that point on she would be Caillain's new neurologist. She spent an hour and a half talking with me about Caillain's condition and was very compassionate. The other neurologist was very cold and did not rub us the right way. While in her office, Caillain proceeded to have two seizures within 10 minutes of each other and she wanted to get him in for a video EEG where they would hook him up to a machine and he would be recorded, however there were no beds available so we had to wait. Finally on April 22nd, Caillain was checked into Hackensack University Medical Center and underwent the video EEG. The next day he was diagnosed with Infantile Spasms.

Taken directly from http://www.epilepsy.com/epilepsy/epilepsy_infantilespasms

Infantile spasms (also called West syndrome because it was first described by Dr. William James West, in the 1840s) consist of a sudden jerk followed by stiffening. Often the arms are flung out as the knees are pulled up and the body bends forward ("jackknife seizures"). Less often, the head can be thrown back as the body and legs stiffen in a straight-out position, or movements can be more subtle and limited to the neck or other body parts. Each seizure lasts only a second or two but they usually occur close together in a series. Sometimes the spasms are mistaken for colic, but the cramps of colic do not occur in a series. Infantile spasms are most common just after waking up and rarely occur during sleep.

Infantile spasms begin between 3 and 12 months of age and usually stop by the age of 2 to 4 years. They are uncommon, affecting only one baby out of a few thousand. About 60% of the affected infants have some brain disorder or brain injury before the seizures begin, but the others have had no apparent injury and have been developing normally. There is no evidence that family history, the baby's sex, or factors such as immunizations are related to infantile spasms.

His new neurologist, Dr. Glicksman, started him on Topamax right away however there was little improvement so upon discharge they decided to start him on Predisone, which is a steriod. He was discharged from the hospital on April 26 the same we started the steroid medication. The following weekend we checked back into the hospital for a 24 hr follow up. There was only a 10% improvement, however he had only been on the medication for about 5 days when we did the follow-up. Dr. Glicksman decided at a follow-up doctor's appointment a week later to increase the dosage from 40mg to 60mg per day. Caillain then checked back into the hospital for another 24 hr follow-up on May 22. At that time we were told by Dr. Glicksman's partner Dr. Thompson that the EEG from this visit compared to the EEG from the previous visit were night and day and that we were close to being seizure free. It had given us a sense of relief. Since being on the steroid Caillain has struggled with inconsistent blood pressure readings but overall is tolerating it well. He has had to see his pediatrician on a weekly basis to have his urine checked for glucose and blood pressure. Due to the high readings, he has also had to see a cardiologist. The cardiologist has told us that the steroid has not affected his heart and has decided not to treat the high blood pressure.

Caillain also started seeing a physical therapist and a occupational therapist twice a week at the end of January and he is progressing. He is sitting with limited support and is holding his head up better.