Good Is Good

A little crabby these days

Today was a good day. Today was a very good day. We had an appointment with Dominic's neurologist to review his progress and his EEG from yesterday. Dominic has been spasm-free now for 10 DAYS. In the long scheme of things, it is still very early to get excited, but for us, it's been 10 days without any of the devastating spasms we have seen since Thanksgiving. Dr. Arndt was very pleased with his progress and thought he looked very alert and seemed to be doing very well. He assured us that Dominic is carrying a lot of "water weight" (yeah, I use that excuse too) and that it will come off when he stops the ACTH. He also said that his EEG looked much better. He said that his brain activity is continuing to normalize and his EEG was almost "normal". Not normal for a baby with IS, but NORMAL, like for a normal 3 month old! This is incredible news and Mike and I are over the moon that the ACTH is working and Dominic may have a chance of leading a "normal" life. Tomorrow we reduce his dose again and the plan is for his last day on ACTH to be next Friday (1/28). From there, they will slowly begin to reduce his dosage of Vigabatrin and hopefully wean him off that too. The goal is to have him on Topomax for at least a year with no seizures. After a year, if all goes well, they may consider taking and keeping him off all meds.

He knows what's coming...

We also met with his Infectious Diseases doctor because he is still showing some CMV in his blood and urine. He will continue with the anti-viral therapy for another 3 weeks. They are concerned that he did not pass his hearing screening in the hospital and we rescheduled his diagnostic BAER test out a few weeks. His neuro didn't feel any baby on ACTH (as well as his other 7 meds) could handle being sedated for that test. But this test will give them a much better idea if Dominic does in fact have hearing loss and what to do about it. He started talking about hearing aids and cochlear implants - what??? But he then said that he could just have had wax in his ear. REALLY? I hate when people freak you out for no reason...

Mike giving him Dominic his evening injection

Sleeping if off

With all of this happiness and good news, I can't help but drag with me the perpetual dark cloud over my shoulder. I read the blog of another mom in my IS support group and read the story of her son who was seizure-free for 8 months after ACTH. They then came back with a vengeance and even after another round of ACTH, the spasms wouldn't stop. Eventually he had brain surgery in Detroit (where we are supposed to have a consult) and had half his brain removed. 

I'm filled with mixed emotions today, but Mike reminded me that today was the best news we've heard in almost two months and to take today as a good day and leave it at that. I am trying to do that, to live in the moment and enjoy it. But I can't help but worry about the future - 5 days from now and 5 years from now. I've come to terms with the fact that this will be something Dominic may struggle with for the rest of his life, but it's the roller coaster of emotions that takes it's toll on me. I'm afraid to be happy, afraid to feel relief. Because I'm afraid that if I allow myself to feel that, it will be yanked out from under me. But, today was a good day and there is always tomorrow to worry about tomorrow.

Home Is Where the Heart Is

We were released from the hospital yesterday and our first night home went pretty well. Dominic went 13 hours yesterday with no spasms, but then six hours later had an episode. Dr. Arndt assured us it's still early and to not lose hope. We have to look at the overall trend over a few days as opposed to one day at a time. So, if two days from now he's had less episodes on average, that's a good thing. If they have not completely stopped after two weeks, they will probably take him off the ACTH and assume it's not working. At that point we would head to Detroit for a surgical consult, PET scan and second opinion from Dr. Chugani. He will also be scheduled for genetic testing to determine if he has some chromosomal abnormality that is causing the spasms. It's hard to pinpoint genetic disorders, but they want to test, just to rule other things out. If it is a genetic disorder, there isn't anything different they would do to treat it, it would just give us an answer. We're reminded once again what a guessing game this disorder is.

Getting his hearing test

While he was in the hospital, the Infectious Diseases doctor put him on an anti-viral because of the CMV he had in his blood/urine. Even though his levels were low, suppressing his immune system with the ACTH could cause the virus to reactivate. He also mentioned that congenital CMV can cause permanent hearing loss. So Dominic had a hearing screening, similar to the one he had when he was born (which he passed then). Unfortunately, he failed this one and now has to have a diagnostic hearing test to determine if he does in fact have hearing problems. Mike and I looked at each other like "great, add it to the list". This poor kid, how many more things can we find wrong with him this week!

Our visiting nurse came this morning and says I'm already a pro at giving the injections, I guess that's a good thing. Dominic is a champ when it comes to getting them too, he didn't even cry this morning! He actually hates getting the other 7 medications more. We can tell he's happy to be home and off all the monitors and wires. He just seems so at peace in our arms, in his own house. He's not as cranky and irritable as I expected, although I'm told it might take a few days before that kicks in. He was actually alert this morning and I even caught a few smiles!

Hit Me With Your Best Shot

Well, we're back at Helen DeVos Children's Hospital and began the ACTH treatment today. They have him all hooked up to the monitors and has had a chest x-ray, urine sample, blood draw (which again, they had to poke him 4 times to get enough blood) and his first dose of ACTH. After they finally got enough blood,  he just looks over at me with sad little eyes and gave me this look like "Not again, Mom! Why are you doing this to me??." It is so incredibly hard to watch him go through all this and know there is nothing I can do to make the pain stop. The poor thing, I don't know if there is any place that he hasn't been poked and prodded.

Mike and I spent part of this afternoon practicing drawing from a vial and learning how and where to give the shot. I'm petrified, I can't believe they think I'm qualified to give him two shots a day! You have to be so careful to keep everything sterile and not touch anything that will touch him and you have to give the exact amount. It's not like accidentally giving too much Tylenol. It's a good thing they are setting us up with a visiting nurse when we go home. He or she will come 3 times a week to monitor his blood pressure and glucose levels and other vitals. All of this just makes me really nervous for the coming weeks. Besides the irritability, high blood pressure, diabetes, low immunity, ulcers and insatiable hunger I've been warned of, there is just so much that goes with caring for him during this treatment. I have to test his urine everyday, his blood pressure 3 times a week, watch like a hawk for the first signs of infection and give the shots twice a day. Besides the ACTH, he will also continue to take his Topomax, Vigabatrin and Carnatine and they're putting him on a stomach protector to hopefully avoid ulcers. I can't really take him anywhere because of the risk of infection, so I'll basically be a hermit for the next 6 weeks. I will welcome visitors :o) On top of all that, I have to try to find time to care for his 2 1/2 year old big brother! I am just praying for peace and strength to get through the next several weeks. My biggest fear is that after putting him through all this hell, the spasms don't stop. I honestly don't know if I will have the strength to handle that.

Dominic has continued to have the spasms today, but it's not surprising. They hope to see a decrease in them by day 3 on the ACTH, but we may not really know if it's working until after 2 weeks. The goal is for the spasms to stop and wean him off the Vigabatrin, then ACTH and have him continue on the Topomax indefinitely. I'm trying not to get my hopes up that this will stop the spams. Maybe that way, if I'm prepared for the worst, I'll be pleasantly surprised.



On a final note, Mike and I just wanted to thank you all for your prayers. I swear half of America is praying for him. From our family and closest friends, to incredible co-workers, to complete strangers, there are SO many people praying for him. Just last weekend, the Archbishop of Chicago was visiting our church and he blessed Dominic and said he would hold him in his prayers as well. We feel so fortunate to have such an incredible support system, so thank you all so much!