It's NOT Infantile Spasms. Are we thankful we got another opinion after this guy told us that it was Infantile Spasms, despite having the data to back it up? Absolutely!
Are we celebrating? Unfortunately, no.
Yesterday was a long one. We were scheduled to be admitted at 11:00am. At 10:30am we were driving to the hospital when we received a call saying they were on "orange status" meaning there were no available beds and that we would have to come the following day. I explained that we were already on our way, and that Brian and I had both taken off of work. After they made some phone calls, we were told that they would make room, but nothing would be available until 2:00pm.
My mom is watching Carson while we are in the hospital, and planned to go to the zoo, so we decided to join them while we passed the time. I am so glad we started the day enjoying the cool weather and having a great time with the boys.
We made it to the hospital, checked in with admissions and were on our floor by 2:00pm. The room was still not ready, so we waited. Some time around 4:00pm we got in our room. Deacon was so exhausted from the busy day, we were hoping he would sleep through the electrode placement. I think he was too exhausted from our busy morning and being messed with was the last thing he wanted, especially since it took over an hour for all of the wires to be attached with the extra strength glue that was used. He cried pretty much the entire hour we held him in place.
After he was wrapped securely he tried to sleep, but just could not get comfortable with the wires, and people coming in taking stats and asking questions. His huge metal crib (really?? a metal crib for kids with seizures??) shook loudly every time he rolled around making it even more difficult, and couldn't snuggle with blankets like he usually does because they need to see all of him on the video camera. To add to our luck, he also has what seems like a cold, and has been running a low fever with runny nose and cough.
He was finally about to dose off at close to 10pm when the nurses came in to draw blood and put in an iv. By that point I was drained too, and cried along with him as we held him down AGAIN to fill up 6 viles of blood and insert the iv.
Brian and I slept on the full size pull-out couch along with Deacon, who stayed on top of the covers and in full view of the camera at all times. lol
This morning we were told by the attending Neurologist that the EEG does not support the diagnosis of Infantile Spasms. They have seen 3 seizure-types since we have been here: myoclonic, atonic, and epileptic spasms. Having more seizure types make seizure control more difficult.
The information I was able to drag out of the doctor didn't sound promising. Because of the slow background on his EEG/developmental delays, it rules out the better end of the spectrum for myoclonic epilepsy. The doctors don't know what exactly it is, or the cause, because it isn't "classic" symptoms for types they have in mind, and we were even told that there is a chance we may never get a clear cut diagnosis and that at any time new seizure types could come and diagnosis could change.
They have sent the bloodwork off for more B12 testing, that we should get today or soon after, and genetic testing that will take about 30 days. So, we are continue to wait for answers. I have done a little research online and read some terrible prognosis, up to severe dementia requiring institutionalization and have forced myself to stop.
We went to an amazing service at church on Sunday and this verse has been running through my head since:
Have faith in God. Truly, I say to you, whoever says to this mountain, 'Be taken up and thrown into the sea,’ and does not doubt in his heart, but believes that what he says will come to pass, it will be done for him. Therefore I tell you, whatever you ask in prayer, believe that you have received it, and it will be yours. Mark 11:22-24
Our pastor summarized with: Don't tell God about the mountains in your life, tell those mountains about God.
So that is what we are doing. God has already tackled the Infantile Spasm diagnosis, now we are praying for another dose of bad news to be shot down by Him.
10 comments:
Wow. I don't know what to say other than that I love the last lines in regards to telling the mountains about God. This is so true. I'm looking forward to seeing you Friday night and to giving you a big hug. XOXO
~Care
Hey Jackie! I read all your updates about Deacon. He is in my thoughts & prayers. I hope there is a positive outcome insight....and soon :).
I'm not sure how to put this nicely. And the first time someone told me this I was very upset. But, in the end, I have much respect for the person who led me down this path. So here goes...
I think you should pursue a surgery evaluation especially with things pointing toward the occipital lobe. My daughter's inital MRI came back normal. It wasn't until she got a PETscan that abnormal brain matter was detected. If all testing points towards the occipital lobe (seizure origination, abnormal brain matter) then the sooner it comes out, the better. My daughter's development really took off after surgery (she is now speaking in 5-7 word sentences compared to only saying a handful of words before surgery). It is very scary to even think about it. But with hard to control epilepsy, you just have to at least consider it. Sorry for dropping all of this on you when things are already tough. I'm here for you if you have any questions or want to talk.
We asked today if surgery was an option. When he has seizures, it is all over the brain, not just in the occipital lobe like they were thinking, so b/c of that, they said surgery wouldn't be possible.
How disappointing. I pray that you have a true diagnosis soon and treatment is available.
I came across your blog by accident. My son has a seizure disorder that was thought to be IS as well. He has several types of seizures of which there isn't a for sure answer as to why/where they come from. He had a muscle biopsy done a year ago that came back abnormal so the Neuro's are leaning toward a Mitochondrial disorder. Please feel free to hop over to our blog and take a read. I am recapping our Make-a-Wish trip we just returned from, one word AMAZING!
When a seizure fires, it fires across the entire brain. The key is to, hopefully, locate an origin point. That's Elaine's main thrust of her suggestion. The medical evidence you have shared is leaning towards that as a possibility, so an evaluation from a surgical team wouldn't be a bad idea.
Neurologists will always, well most of them most of the time, will want to steer you into the direction of medicinal options, it is their nature. Just as Neurosurgeons would want to steer you in a direction of surgery.
But having both groups look at the data and render an opinion might be a path worth walking down.
In the meantime, the misdiagnosis part sucks. As someone who spent a majority of the time battling my son's Infantile Spasms with a misdiagnosis, I know how frustrating it can be to not have the right information at hand. Very sorry to hear that.
How many different hospitals has Deacon been to?
He has seen 4 neurologist, but all at the same hospital. We have an appointment with another hospital scheduled in a couple of weeks, and have recently received a suggestion to a neurologist at a free-standing office that we may try as well.
Not to push the surgery thing but...
My daughter's EEG prior to surgery was ALWAYS CHAOTIC. There was NO focal point. It was the PETscan that showed the abnormality. There are few surgical teams that understand this. Since all data (besides EEG) pointed to seizures most likely originating in one hemisphere, they decided to move forward with surgery. It wasn't until she had grids placed (electrodes placed directly on the brain) that they were able to determine the seizures were actually only originating from the left frontal lobe. A lot of data from a typical EEG is lost through the skull and that is why grids are more accurate.
Also, in my past experiences, a "true" second opinion only comes from a doctor that is not in any way associated with your original doctor. And, like I said, there are a lot of surgical teams that place too much importance on the EEG. Of course, you want the EEG to show a focus. It would make the decision easier. But when you are dealing with hard to control epilepsy, things are never easy.
I hope I am not overwhelming you with all of this. I hope with all my heart that Scott finds seizure freedom soon.
It’s good that you can now cross Infantile Spasm off the list. I hope you have arrived at the right diagnosis soon after this, so you could avail of the correct treatment right away. How is he doing now? I hope everything is going great with you and your family. All the best!
Sabrina Craig @ The Law Offices of Joseph M. Lichtenstein
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