This is one of my FAVORITES! I guess it's the silly look on his face! He was exactly 5 months old here.
I sincerely started this blog to share all of our exciting news with everyone. If I remember correctly, I started it when I thought we were nearing an end to this struggle of IS. Austin was improving and not really showing any ill effects just yet at that point. But, unfortunately, I have realized that updating you all includes sharing the not-so-happy news along with the grand and exciting. I don't have particularly bad news, just a new insight on Austin's condition to share. I have been debating for several days just how to share this with you all. I do not want to sound sad and pessimistic. I am trying to recollect my thoughts and gain a new perspective so as not to come across as our doctor did -hopeless. With that, I hope you all will bear with me as I attempt to explain this new insight.
First of all, nothing has really changed in Austin's condition. There are some issues that I tried to blow off because I did not want to see them. We did not find anything new at our appointment, we just were more informed and the veil I was using to conceal the unwanted was lifted.
Unfortunately, Austin's EEG showed no improvement. It only further confirmed how much he is struggling with. He has what they call "myoclonic seizures", some of the most difficult to control. I'm not going to get into very much detail on that, just enough to explain what we are up against. In fact, I still consider myself uneducated in that area...although I'm trying to learn more. The fact that his seizures have not been controlled by ACTH, Zonegran, or Keppra is a big concern. It indicates that we may be dealing with "intractable seizures", seizures that are difficult to control with anti-epileptic drugs. However, I have not accepted that just yet. There are still several options we have yet to try. It may just take longer to find that right dose and/or drug. Vigabatrin is still an option, even though the doc did not want to give us false hope that it will work.
Now, the hardest part. We have loads of new testing we will be doing. We had to repeat a genetic test to rule out a genetic disease as the underlying cause (it will take several months to get the results). We had to repeat because the first came back inconclusive. Second, we will also have a repeat MRI to check his brain again. I was misinformed by his neurologists earlier on about this one. It was done while Austin was in the hospital the first time. It came back normal. However, we were just informed that an MRI done that early in life is unreliable. He will also have a lumbar puncture (a spinal tap to test the spinal fluid) following the MRI. I guess those results will determine which direction his treatment will go. These tests are crucial. We want to rule out these possibilities and we do NOT want to find what they are looking for in them. Anything found can negatively affect his prognosis. Unfortunately, I have to add that his doctor implied that we may. I pray that we don't. A truly idiopathic case (meaning there is no known cause) has the best prognosis of all. Especially when the child is otherwise normal (developmentally)...AND has a quick response to meds.
We have two of these factors working against us right now...and one more to be determined -the testing. I have raved about Austin's development, I know. And, his gross motor really is something for me to rave about. But, I have left out all the other details. I have not shared much of my concern about his other skills -except maybe his babbling. He has not made much progress socially/verbally/communicative since he was diagnosed nearly 5 mos ago. I blamed it on his meds. It's possible some of it may be due to the meds, but not all. I wanted to blame it on everything but what it is. Regardless, Austin is taking steps...a truly miraculous milestone in my eyes, and I'm not trying to take away from that by pointing out negatives.
The spasms continue. We increased the Zonegran by 50 mgs/day and decreased the Keppra by 2mL/day and are adding B6 as well. We will have him completely off the Keppra by Friday...it was a joke to begin with, but that's another story...maybe I'll share that one later!
I'm trying not to put a negative spin on things here. Truth is, it's not all as negative as I may sound. There's still a lot to be determined and so much can change over time. It's just far more serious than I let myself believe or accept. I knew that this diagnosis of IS was going to change everything from now on, but what I didn't realize was that it is going to be this hardest battle we will ever face. It is going to take all the patience, persistence, faith, prayer, hope, and love to get Austin through this. I'm not prepared to do anything less than what it takes...regardless of how much hope the doctors think we have.
There is so much more to say, but I think this post is long enough for today. Thanks for all of your encouragement and prayers! I will definitely keep you all posted on how he responds to the latest increase of meds.
First of all, nothing has really changed in Austin's condition. There are some issues that I tried to blow off because I did not want to see them. We did not find anything new at our appointment, we just were more informed and the veil I was using to conceal the unwanted was lifted.
Unfortunately, Austin's EEG showed no improvement. It only further confirmed how much he is struggling with. He has what they call "myoclonic seizures", some of the most difficult to control. I'm not going to get into very much detail on that, just enough to explain what we are up against. In fact, I still consider myself uneducated in that area...although I'm trying to learn more. The fact that his seizures have not been controlled by ACTH, Zonegran, or Keppra is a big concern. It indicates that we may be dealing with "intractable seizures", seizures that are difficult to control with anti-epileptic drugs. However, I have not accepted that just yet. There are still several options we have yet to try. It may just take longer to find that right dose and/or drug. Vigabatrin is still an option, even though the doc did not want to give us false hope that it will work.
Now, the hardest part. We have loads of new testing we will be doing. We had to repeat a genetic test to rule out a genetic disease as the underlying cause (it will take several months to get the results). We had to repeat because the first came back inconclusive. Second, we will also have a repeat MRI to check his brain again. I was misinformed by his neurologists earlier on about this one. It was done while Austin was in the hospital the first time. It came back normal. However, we were just informed that an MRI done that early in life is unreliable. He will also have a lumbar puncture (a spinal tap to test the spinal fluid) following the MRI. I guess those results will determine which direction his treatment will go. These tests are crucial. We want to rule out these possibilities and we do NOT want to find what they are looking for in them. Anything found can negatively affect his prognosis. Unfortunately, I have to add that his doctor implied that we may. I pray that we don't. A truly idiopathic case (meaning there is no known cause) has the best prognosis of all. Especially when the child is otherwise normal (developmentally)...AND has a quick response to meds.
We have two of these factors working against us right now...and one more to be determined -the testing. I have raved about Austin's development, I know. And, his gross motor really is something for me to rave about. But, I have left out all the other details. I have not shared much of my concern about his other skills -except maybe his babbling. He has not made much progress socially/verbally/communicative since he was diagnosed nearly 5 mos ago. I blamed it on his meds. It's possible some of it may be due to the meds, but not all. I wanted to blame it on everything but what it is. Regardless, Austin is taking steps...a truly miraculous milestone in my eyes, and I'm not trying to take away from that by pointing out negatives.
The spasms continue. We increased the Zonegran by 50 mgs/day and decreased the Keppra by 2mL/day and are adding B6 as well. We will have him completely off the Keppra by Friday...it was a joke to begin with, but that's another story...maybe I'll share that one later!
I'm trying not to put a negative spin on things here. Truth is, it's not all as negative as I may sound. There's still a lot to be determined and so much can change over time. It's just far more serious than I let myself believe or accept. I knew that this diagnosis of IS was going to change everything from now on, but what I didn't realize was that it is going to be this hardest battle we will ever face. It is going to take all the patience, persistence, faith, prayer, hope, and love to get Austin through this. I'm not prepared to do anything less than what it takes...regardless of how much hope the doctors think we have.
There is so much more to say, but I think this post is long enough for today. Thanks for all of your encouragement and prayers! I will definitely keep you all posted on how he responds to the latest increase of meds.
5 comments:
OMG!!! He is such a cute little guy. I hope all is going well with his IS journey. My son also had IS because of a brain malformation. I know things are hectic and you might feel like you're losing your mind, but it gets easier, you just need to hang in there and stand strong!
good luck.
5 months and 3 meds does NOT equate to hopeless to me. My Austin was having IS for 5 months before they even knew what it was. It took another 3 months to get control. Yes he lost a ton of development, yes it stunk to watch, but I truly consider my Austin a success. While he still has delays (gets PT, OT, speech, reading) and probably ADHD, he is in a typical 1st grade class now. And for the most part is doing well.
Don't give up, there are so many more meds to try. And don't let them stop trying meds just because they want to do testing. Also, try and have them do the LP while he's already under anesthesia for the MRI. No point sticking him while he's awake!
And get him started with therapies. I believe TX is pretty good when it comes to giving therapies to IS kids. I know there are a bunch of Texans on the IS group so ask there. Even if he doesn't seem too delayed, his IS diagnosis should qualify him for services.
Vigabatrin stopped my Austin's IS. WE weaned him at 8 months SF. Six months after that he started having myoclonics. We put him back on Vigabatrin and it worked on those too. While you should never pin your hopes completely on one drug, don't count it out either!!
Good luck,
Jen
Forgot to mention... when they do the MRI, make sure they are doing a contrast MRI. Austin brain lesion was NOT seen on CT or on the MRI without contrast. They say the lesion is not important in his diagnosis/prognosis, but still better to know it's there.
It is so hard this darn IS. It comes out of left field for many, like us. I agree with everything Jen said. NEVER give up hope that the right meds will work. I always hold onto the fact that there are children who can come out of this. And just keep searching.
Take care,
Molli
Demand contrast with the MRI. Double check contrast with the techs!
I wish I had pushed harder...and the thing is once the MRI is done...it's done for another 6 months to a year. So make sure they do it right the first time! Yes...this is experience talking!
...danielle
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