Thursday, November 6, 2008

New diagnosis of sorts

For the last 1-2 weeks or so, I've noticed some new things that Matthew is doing; neurologically that is . I've noticed that he has started having seizures again, although not as many as before. I haven't seen him smile in over 2 weeks and his sleeping patterns have once again worsened. By worsening, I mean that I am getting VERY little sleep at night, AGAIN! Matthew tends to be up late and then wakes frequently through the night. The biggest thing I've noticed is some weird leg jerking. As soon as I saw it, I knew what it was. I forced myself not to believe it though, until I talked to the doctor. Neurology is not one of my favorite areas in Matthew's care. I don't ever feel like things are handled in a timely fashion. Now, that may be an incorrect assessment; but I'm not used to this 'wait and see' attitude. If I see something abnormal, my expectations are to have the testing done within 24-48 hours and see the doctor the same week. Not so with neurology, atleast in Nebraska. I called about this and they seemed pretty liaze-faire about the whole thing.

Neurology RN: " I don't want to inconvience you, do you just want to do the EEG in three weeks when he sees the neurologist?"

Me: "I'd like it done as soon as possible, I'm okay making a separate trip. I'd really like to have this taken care of."

Neurology RN:" Well okay, but I don't want you to have to make a separate trip, only if your sure."

Me: "I'm sure;I want this resolved."

So we get an appointment for today and this conversation happened 1 week ago. And we don't see the neurologist for 2 more weeks. I'm just not patient, I guess.

So today we have the EEG. The technician put the electrodes on and immediately I knew something was wrong. This is similar to what the screen looked like:

And just for refence, this is what a normal EEG should look somewhat like:

So, I'm no rocket scientist, or EEG reader for that fact, but I knew it WASN"T right. The technician calmly looked at me and said: 'I need to go wash my hands, I'll be right back'. Now I'm also NOT an idiot! No hand washing was not needed-this was Matthew's third EEG and NEVER did they leave the room. Quite the opposite, they need to document every movement he has while it's running, like eyes open, eyes closed, sucking on pacifier; etc. I've also used a similar line myself to excuse myself from the patient room, without sounding worried-only to call the doctor and tell them some important information. So I knew something was up. 5 minutes later (that was an intensive hand scrubbing) she returned. Now, she either has a case of over-active bladder, diarrhea, OR she called the doctor. I chose the third option, and I was correct. I said, " hum, I don't read these everyday, but that doesn't look even close to being normal." The technician said, "well, since you said that, I just want you to know, I've called the doctor and she may be showing up any minute." There, that's more like it- a bit of truthfullness. Well she didn't show up (I learned later that she had a packed schedule at the office) so the technician said that Dr. Wright was going to look at it and give me a call. She said that just to be sure, I should stay in town for a couple of hours till she called me.

2 hours came and went and no call, so off to home I went. Finally, at around 4 pm this evening, I recieved a call. The nurse said something to the fact of " Dr. wright has looked at the EEG and would like to start a new medicine, the person who officially reads our EEG's won't be in till Monday, but she's quite certain that these are Infantile spasms." My heart sank. I knew it, but refused to believe it. But it's true. I know a little about infantile spasms from my blogger friend Lisa , but have not yet allowed myself to think about it. I don't have enough information to give you right now, but I'm starting my research effective today. Unless you want to wait for my synopsis, Lisa has a link on her blog for more information or you can google it. I think it's a pretty cruddy thing and I'm not excited to learn more about. But information is power and that's how I've tackled everything in the last 9 months; with information.

For those of you who know me in 'real-life', please excuse me if my attitude sucks or if I'm a crab. It's not on purpose. I promise my true identity will emerge again, but I'm just going to ask for forgiveness early, because I know I won't be myself. On top of this information, I've also just now for the first time been processing some information that was given to me just prior to Matthew's discharge from the hospital and I will blog about that later, just not now. The combination of that information sinking in and this new diagnosis has put me a bit over the edge mentally.

We won't see Dr. Wright for 2 more weeks, but will be starting this new medication immediately. Please pray that Matthew tolerates this medication, that will all the medications he's on that he won't have any side effects and that this will be the trick for him. Pray that his neurological health surpasses that of what the doctor's are predicting. Please also pray for our family. The other kids don't really get it; but they see our heavy hearts and know something is up.


Anonymous said...

Just letting you know that I am praying for your family. I can't imagine what you're going through.

Hang in there!

Sherrie Binder

Sherri said...

Jill- I am just devastated to hear this. Please know that Matthew and your entire family will be in our prayers daily. He's an amazing little boy and I'm sure the Dr. will be able to find the right treatment for him. Please call if you need to vent! Big, big hugs. Sherri

Kristen said...

Jill, our hearts just break over Matthew's latest report. If I knew you in person I can tell you I would be a friend that would totally love you and let you have a stinky attitude. It's a stinky situation so it's quite acceptable and understandable that you would feel it so strongly. We send many prayers towards your way. Love and hugs!

The Donald said...

I really enjoyed this post. Not because Mathew is having problems, but because I can RELATE 100 percent. I know how scary it is to see your child have spasms. Elisabeth had a rather violent set tonight while I was holding her, and there was nothing that I could do about it.

I (and Lisa when she sees this post) wish you all the luck in the world that the ACTH therapy works the way it is supposed to if they are indeed infantile spasms. It does have an 80 percent success rate, so with hope and prayer he can fall into the success category.

We will be thinking and praying about you guys here in WA. Good luck with everything!

Lisa said...


I just got home and Donald told me right away about Matthew and the infantile spasms. My heart sank. I don't wish anyone to have to go through this.

I am going to assume that they are starting him on the ACTH therapy. It seems to be the first choice with Neurologists due to its high success rate for curing (not just controlling) infantile spasms.

There is a man who lives a few hours from us that contacted me several months ago when his daughter was diagnosed with IS. He had come across my blog and was seeking advice. His daughter did the ACTH therapy and hasn't had any spasms since!

That is usually the way things turn keep your spirits high. Elisabeth just happens to be an unfortunate case. Donald and I are pretty sure at this point that nothing will cure her of the spasms. The Depakote has definately helped her (she smiles again!), but it has in no way diminished the spasms. So it looks like we are going to just have to wait this out and hope that she survives it all :)

Let me know if there is anything I can do. I know I am far away, but feel free to shoot me an email if you need to vent. I know it helps having someone that can relate.

For now we will keep sweet Matthew in our prayers and hope for a quick solution to the IS.

Michelle said...

*hugs* lots and lots of *hugs* We will pray that the ACTH works for him. You should also feel that you are perfectly right in not being happy when a doctor expects you to wait for weeks when you know something isn't right. When will they learn that not everything can wait until it's convenient? You go Momma Bear! Matthew is very lucky to have such a determined Mommy!

Echoes of Mercy said...

Jill (and family)...we are PRAYING! And if you're not chipper for a while, that is totally ok. You have a lot to process. We, your friends in real life, want you to know you're cared for.


Keesler Chaos said...

I wish I'd read this before I saw you so I could've given you a hug! We will pray for both of you. I already love your little guy!

Lisa said...

Still thinking of you and sweet little Matthew...

Lisa said...


I just got your comment, I have no idea why it wouldn't let you email me.

If you haven't already figured it out...I got rid of my MySpace.

You might want to try sending the email to my husbands account:

Hope that works :)

milky1980 said...

I just wanted you to know that you are not alone...((())) My son has been having IS for 5, yes FIVE years. He is seven now. I will be praying for you.

saucysarie said...

Hi, my name is sarah and I saw that someone had posted about you and your son on the bump "the nest" and asked that anyone with babies that have infantile spasms come and read your blog. Well I have triplets and my identical girls both have infantile spasms. I am so sorry that you had to go through all of that and am right in the same boat you are. If you ever feel like talking- or reading about infantile spasms months later (my babies will be 1 on saturday) my blog is or you can e-mail me anytime at