Incredible Story on Nightline Last Night

Not sure if anyone was able to catch Nightline last night, but it was about the incredible story of a one year old boy, Evan, who suffered from Infantile Spasms and had a radical surgery to remove half his brain to stop the seizures. I thought his story sounded familiar, and sure enough I got an email from Evan's dad this morning with a link to the story, as he is from the IS support group I recently joined online. The surgery is called a hemispherectomy and this is the surgery that Dominic will be evaluated for should the ACTH not work. To watch Evan's story has so far been like a mirror of Dominic's. It's pretty incredible. We are hoping to not have to pursue the surgery route, but should we have to, Evan's story definitely gives us hope. Here is a link to the story on ABC News or you can view a short video clip below. Check it out!

Looking Ahead to the New Year

I'm hesitant to post today, since things seem to change daily, but the neurologist assured me that Monday is the day! Dominic's levels came back and 100 copies of the CMV virus is considered dormant and his were 110. So, it is low enough that they would not treat it with an anti-viral and they are not concerned about starting ACTH now. We could have been admitted at the end of this week, but we were hoping not to ring in the New Year in the hospital. So, the doctor feels comfortable starting the treatment on Monday. So that's the new plan!

New Year's Resolution

The reason IS is considered a "catastrophic" form of epilepsy is because is causes developmental delays. We have already started to see regression in Dominic's development, which is devastating to see. From the day he was born he would try to hold his head up on his own. He was a strong little bugger. He is 3 months old today and can't hold his head up anymore, it's almost like holding a 12 pound newborn. So, just like most people who make the new year's resolution to exercise more, Dominic has the same resolution. He has an occupational therapist that comes once a week to teach us different exercises to help strengthen his neck and muscles. Tummy time is a struggle but we do it. And we've found the Bumbo seat helps with his neck strength too. Some kids with IS only have delays, while other's development stops altogether. We're hoping with enough exercise and "strength" training that Dominic can get back on track developmental. We realize he'll be behind, but any progress at this point is a good thing. And hey, who knows, maybe the steroids will help with his strength. It works for body builders, right?

As we look ahead to the coming year, we have no idea what the future holds. But even with everything that has happened in the past month, we are sure that our greatest gift of this year has been little Dominic. Although his condition has brought a lot of tears, heartache and worry, he himself has brought us great joy. Just looking at his little round face makes our hearts melt!

April Fools..in December

Agggg! The hospital called this morning all ready for us to be admitted and had his room all ready. As we were getting ready to leave, the neurologist called and said they found a virus, Cytomegalovirus (CMV) in his urine test from last week. CMV is a common virus that infects most people at some time during their lives but rarely causes obvious illness. It's a member of the herpes virus family (yeah, I raised my eyebrows at that one too, but it's not the same kind). It can become dormant for a while and may reactivate at a later time. They aren't sure if he contracted it when he was born or after that. In infants, 9 out of 10 will have no systems, but 1 may have significant illness involving nervous system damage or developmental disabilities. There is a chance that the virus may be related to his IS. The doctor said CMV can affect the way the brain develops, but they don't know for sure. It might also just be a coincidence. The doctor said there is no way to tell when he got it but they drew more blood today to find out if it's in his bloodstream. If it is, that means the virus is still active and they cannot start the ACTH because the treatment suppresses his immune system and he could get really sick. If it's not in his blood, they will move forward with the ACTH. Unfortunately, it can take a few days to get the results of the blood work back from Mayo. So, once again, we wait. I wish I would have gotten into boxing, because I would love to jump in the ring right now and knock a few people out. This constant change day to day, hour to hour is exhausting and at the end of the day, my baby is still having seizures. I just want someone to DO SOMETHING NOW!

Living On a Prayer

Today is not really an update, other than to say we are for sure heading to DeVos Children's hospital on Monday to begin the ACTH treatment. Unless, for some reason, there is a Christmas miracle and Dominic stops having spasms over the weekend, we head in Monday morning. He will be there for 3 days so they can monitor him and see how is body responds to the meds. Mike and I will be instructed on how to administer the shots. Once he is sent home, we will have a nurse come to the house to monitor him and he'll see the pediatrician 3 times a week to keep an eye on his blood pressure. The side effect I'm dreading the most is the irritability. From what other mother's have shared with me, by "irritable", they mean non-stop crying all day, every day, even at night. I know every child is different, so I am praying it's not going to be as bad as they say. But if it is, it's going to be a very long 5-6 weeks.

I've definitely had my good days and bad days over the past several weeks. Most days my faith is unwavering and I know that God will provide. But my bad days can be really bad. I worry and am anxious about the future. About what Dominic will or won't do and the struggles he'll face. I worry I am putting him through all these procedures and treatments only to have them fail. What are these toxins doing to his tiny body? As a mother, am I making right decisions? Am I doing everything I can to give him the best possible future? I've realized this is why God gives us friends and family. To be there to support, pray and be strong for me on the days I just can't. I pray daily that God will heal my little boy, and I know that if he doesn't, he will at least give us the strength to endure what's to come. These days we seem to be living on prayer, which I suppose is what God really wants from us. To come to rely on him for everything - for each breath, each heartbeat.

It's funny how God gives us exactly what we need when we need it. I came across this verse today, which I know by heart and have read hundreds of times. But he must have known it's exactly what I needed to hear today:

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus" ~ Philippians 4:6-7

I'll Be Home For Christmas

We met again with the neurologist today so I thought I'd post another update. Not a whole lot has changed, but they have now received almost all of the test results that were done. Some had been sent out to Mayo Clinic, so they took a bit longer. Of the hundreds of metabolic disorders they tested for, all of them came back normal. After consulting with the metabolic specialist, this leads our neurologist to believe that Dominic does not have a metabolic disorder. This can be a good thing and a bad thing. Most metabolic disorders cannot be cured, they simply treat the symptoms, which are the seizures (which is what they are trying to do with meds). If it's structural, which he thinks it probably is, this can hopefully be treated. If not with medication, with surgery. This of course will all depend on how Dominic's evaluation with Dr. Chugani and what the PET scan shows. We will be making this trip to Detroit in early January.

The doctor decided one more time to up his dose of Vigabatrin for the next two days. If things get better, we will keep him on it. If things stay the same or get worse, they are tentatively planning on admitting him back into the hospital on Monday to start ACTH (adrenocorticotropic hormone), which is a steroid treatment. This requires daily injections and he'll need to be in the hospital to monitor him for the first few days to make sure he handles the medicine ok. It has very strong side effects - high blood pressure, irritability, weight gain and hypertension. He'll need to see the Pediatrician 3 times a week to make make sure his blood pressure is under control and he'll have to be on a stomach protector as well. ACTH is an aggressive treatment with a lot of side effects, but has proven effective in treating Infantile Spasms. We're just preparing ourselves for a rough 4-6 weeks in hopes that this will stop the spasms.

So, it looks like we will be home as a family this Christmas, instead of the hospital, which is a huge blessing. We continue to pray for answers and peace during this time of waiting. It's so hard to believe it's only been 3 1/2 weeks since this all started, it feels like MONTHS! We have realized that with this disorder, we have to take each day one at a time. So much can change from day to day and we don't know where we'll be six months from now, let alone a week from now. We're learning to appreciate the good days and to pray for strength to get us through the tougher days. Until next week, the Dunlaps wish you all a very merry and blessed Christmas!

We've Got a Plan

Mike and I met with the Neurologist on Monday and set out a game plan for Dominic's treatment. Because they haven't received all the test results back and they still don't know what is causing the spasms, there are several routes we will need to start down before we know what the best treatment will be.

The plan starts with adjusting the dose of Vigabatrin. Sometimes if a baby is on too high a dose, it can actually have the opposite effect, which is what he thinks happened. So, he lowered the dose and will monitor him over the next few days. He's keeping him on the Carnitine supplement as well, since the second round of lab work revealed he still had low levels. Dr. Arndt does not believe this is what is causing the spams, simply a secondary deficiency. We're going to talk Friday to see if we continue on the Vigabatrin at the same dose over the weekend or up it. Next week he'll probably determine if it's time to switch to the ACTH steroid treatment. In that case we'll be admitted back to the hospital to begin treatment.

Dr. Arndt decided that the Vitamin B6 and Pyradoxine weren't really having an effect, so he took him off that on Tuesday. Which is good because it's a lot less meds to fill up his little tummy.

Dominic had an EKG and an ECHO Cardiogram on Monday to make sure everything looked okay. I guess an enlarged heart can be associated with some metabolic disorders. Everything looked normal, which is great!

In the meantime, since a closer look at the MRI showed one side of his brain is slightly asymmetrical, Dr. Arndt is referring us to Dr. Chugani in Detroit for a PET scan and an evaluation of potential brain surgery. He will evaluate Dominic to see if surgery may be a solution. (Here is an article on a child he treated with the same condition that was successful). So, sometime in the next few weeks we will be heading to Detroit for that.

Though we are still waiting for all of the results to come back from the metabolic workup, we will also be consulting with a Metabolic specialist who will also evaluate Dominic.

The last couple days Dominic has been doing okay - no better, no worse, seizure wise. He has been eating much better, which he was struggling with since being in the hospital. We did some tummy time today and he wasn't able to lift up his head. I know this is all part of it, but it's hard to see that he's already regressing. The Occupational Therapist comes tomorrow, and will be coming once a week, so hopefully she can help get him back on track. He has been more alert and "with it" since he started on the lower does of Vigabatrin. I'm starting to see again some signs that my little guy is still in there :o)

And the Journey Begins

So, I did it. I decided to jump on the blog bandwagon. I'm doing this mostly for myself, as a sort of journal, but also for family and friends to follow Dominic's journey with us.

Dominic was born September 29 of this year a perfectly healthy 7 1/2 pound baby boy. The first few weeks were exhausting with a newborn and getting used to having two kids. But overall, Dominic was a very typical baby. The day before Thanksgiving we were in Naperville and he had what I thought was a seizure. Over the next few days he continued to have more and more. When we got home Saturday, we called the Pediatrician and after taking one look at him, sent us straight to Helen DeVos Children's Hospital in downtown GR.

His fist couple days in the hospital he had an CT Scan, MRI Lumbar Puncture (spinal tap), blood work and a 36 hour EEG in hopes of finding what was causing the the seizures. Based on his EEG they saw he was having complex partial seizures as well as numerous clusters of spasms. He was put on phenobarbital and a slew of other meds before they finally diagnosed him with the catastrophic epilepsy disorder called Infantile Spasms.

While Infantile Spasms don't sound all that bad, it is actually a rare form of epilepsy that affects only 4 out of every 10,000 births. It's considered "catastrophic" because it is very difficult to treat and has a pretty poor prognosis. Most children with infantile spasms are mentally retarded later in life. Those whose spasms are related to an underlying developmental brain disorder or injury have a higher likelihood of moderate to severe retardation. The outlook is brighter for those who were developing normally before the spasms started: 10 to 20% will have normal mental function and some others may be only mildly impaired. Some children with infantile spasms develop autism. Many doctors believe that the quicker the seizures are controlled, the better the results will be. There are two categories of IS - Etiologic, which means an underlying cause is found, or Cryptogenic, in which a cause cannot be identified.

So, after finding out this news, my heart nearly broke in two. I could not believe that my perfect little angel was faced with such a horrific prognosis. They began treating him with Vitamin B6, Pyridoxine and Topomax. He responded a little to the Topomax and the spasms lessened a bit. But within a day, they were back to full force, even worse than before. They then decided to put him on Vigabatrin, which is a pretty heavy duty drug that was just approved by the FDA in 2009. The biggest side effect is permanent peripheral vision loss. He seemed to do well on it and they released us from the hospital after 6 days (on my birthday!) and sent us home to continue on the Vigabatrin as well as the 3 other meds.

The first few days were amazing! He had maybe one spell of just a couple minor spasms. The medicine was working! Praise God! He was smiling and cooing and alert and I was overjoyed. We started Occupational and Physical therapy immediately and they said he looked great. He was behind a little in some areas, but considering his prognosis, he seemed to be doing very well. Sadly, 4 days after starting the Vigabatrin the seizures and spasms returned. Small at first but then became more severe and we were back at square one. Last week he went back to the neurologist for another EEG. It showed that not much had changed, but they didn't see any Hypsarrhythmia, which is chaotic brain activity consistent with IS. This is great news! However, if the spasms don't stop, it will eventually show up.

So far, everything has come back normal - MRI, CT, spinal fluid, blood work with the exception of one thing - his Carnitine levels came back low. I won't go into what Carnitine is, other than to say that it has something to do with amino acids and how energy is used in the body. They took more blood on Friday to re-test, just to make sure it wasn't just a fluke and put him on a Carnitine supplement over the weekend. We'll see if it helps.

So, this leads us to today. Dominic is still having a lot of spasms and seizures and at times I lose hope. We are meeting today with the neurologist, epileptologist, and metabolic specialist to determine which path to go down for Dominic. The next logical step if they don't keep him on Vigabatrin is ACTH, which is a steroid treatment. It has some severe side effects (major weight gain, diabetes, hypertension, irritability etc.) and it needs to be injected into his thigh twice a day. It would mean another 4 day stint in the hospital and then me giving him the injections at home after that. They will also be setting up an extended EEG that will last a couple days. There are other medications as well as a ketogenic diet to try if the ACTH fails. It seems to be a game of trial and error at this point.

It's hard to believe this all just started 3 weeks ago. It has been quite a whirlwind and a huge emotional roller coaster for our whole family. While Dominic is much of a question mark at this point, one thing we know for sure is that our Almighty God is holding him in the palm of His hand. He knows the plans he has for Dominic and for our family. We are holding tight to this promise, knowing that God has given him to us for a reason and we feel privileged, as parents, that God has entrusted him into our care.