Friday, January 30, 2009

Hard Pill to Swallow

If you've been following the post this past couple of weeks, you know that Daniel has been re-diagnosed with Infantile Spasms.

Being in SHOCK is an understatement.
Being in denial? Perhaps.
Grasping at straws? You bet.
Researching again? Hours upon hours!

Trying to come out of the fog I've been in since I heard the nurse practitioner say Infantile Spasms.
I just lay in bed at night and something doesn't feel right this time. The other two times Daniel had the seizures, I was like ok, I see them I understand. Not so much this time. There are too many things that just don't fit this time around. Now mind you, some of you will probably read this and say to yourself, "that poor girl, she just needs to come to the reality that Daniel is having seizures, and let it go, move on." And to that I say you might be right, but until I can get this nagging feeling to go away, I can't put it to bed yet.

This is what is odd (in my book)
  • no new outward appearance of clusters/seizures
  • the movement that we did push the video button on in the EEG we have pushed on 4 different EEG's previously and we were told they WERE NOT seizures.
  • there is no hyppsarrythmia
  • there seems to be no regression, only slow progress which is typical for Daniel
  • there are two parts to the VMR. The actual EEG and then the video recording. We found out that only the EEG is looked at through a computer program then a doctor reviews if anything is found through that detection. They only review the video if the parents push the button when they see a funny movement. That being said, it is my understanding that from the review of the EEG, there were spikes but they did NOT see seizures. Only upon review of the video (where we hit the button) did the doctor who read the report call it IS. because of the 'movement' only. Not completely based off the EEG. (see report under Interictal Findings).
  • Also note under Clinical Findings (meaning the video) the report reads: These spasms showed minimal EEG correlation or sometimes the EEG correlation was obscured by EMG activity. Some spasms showed diffuse spike wave activity followed by attenuation. We would not localize the seizure onset..
To me this means; had they been looking at just the EEG they would not have seen a seizure. and that when the movements of the video happened there was little or NO correlation with the EEG. Now mind you yes Daniel is doing a movement, but one that he has ALWAYS done. So if this is indeed a seizure, he was never really seizure free EVER. and if it is Infantile Spasms- I can induce this seizure. I can tell you when and why Daniel does the movement. I can make it happen and I can stop it instantly. If this is a seizure, why am I am to do that?

I know grasping at straws, and its all confusing for people to read. I an not saying Daniel isn't having seizrues of some kind, or he has a high potential. We have always know this because of his brain malformation he will never have an absolutely perfect EEG, its impossible. He has spikes, which means there is potential for seizure activity. There are no hypps. When he was having the "seizure" (odd movement) it didn't cooralate with the EEG. I can induce it. Seizures?? Maybe, but I need more to think that it is infantile spasms again.

But who am I? I am not a doctor and I am new to this (3 yrs only) seizure stuff. I have researched a ton, but again I am not a doctor and I don't pretend to be one. But it is a gut feeling that i have, and I am around him pretty much all the time. I am his mom, and yeah probably grasping at straws.

But wouldn't you too?

We have an appointment on Tuesday with the neuro. Then I will point out all my thoughts and he'll probably think I'm nuts....


Jessica mommy to Alex/ RTS said...

One thing I have learned with Alex is mommas instincts mean somthing!

Anonymous said...

I totally agree with Jessica. Doctors... well, yes, they are doctors, but no one knows your child as you do.

The brain is something absolutely new for science, they know almost nothing about it yet. I would not take seriously the last EEG. I would take very serious what you think, what you see.

Tell everything to the neuro and if he doesnt listen to you or his answers doesn't satisfy you, change it!

Taking meds is a big deal, you need to be absolutly sure that Daniel needs them.

And follow your instincs, really, you are not alone!

Anonymous said...

You are an amazing, intelligent, fierce, loving mother who would (and does!) go to the ends of earth to fight for her son's health and well-being. You take that fierceness and you question that neuro and make him satisfy every single doubt in your mind. Because you know your son better than anyone on this earth--and your observations are valid and need to be taken into account. Medical degree or not!

Jennifer said...

A mother's instinct is always right. If your heart is saying its not what they say it is than it's probably not. You know your child better than science, better than medicine, better than any thing or anyone one.

Erin said...

Hugs Melanie!!

You have been in this "game" for a few years now, and you have learned, rightly so, that you can't blindly take a diagnosis based on one little test. While it is true that they may have seen something indicative of seizures on the test, I think it is your right, and your duty as a mom, in fact, to question and make sure the doctors are focusing in on the whole kid, not just one little line on a graph or one little startle (which we know can be due to many things with our kiddos).

I have never even talked to a neurologist, and Fletcher has never seen one, so I cannot help you substatively. But I can cheer you on and let you know that a good doctor will seriously consider and give great weight to a mom's observations and comments. It needs to be a team effort with our docs, and I think the good ones get that.

Good luck on Tuesday, please keep us updated.

JoAnn said...

Never doubt your mother's instinct! You see every hour, every minute of Daniel's life and you know him as no one else ever will.

Write down every question, every thought, every scrap of evidence to present to the others have already pointed out, you're an intelligent woman and your observations are valid! Print out medical journal articles if needed and take them to the appointment; I've done this many times.

You and Daniel are in my thoughts and prayers....

Bird said...

Ok--I read the report and frankly, I'm not convinced. If those aren't the spasms as you know them, then I would be willing to bet that they aren't spasms. I said this before, but I had someone tell me that Charlie's startle response was a seizure. Never mind that his seizures looked nothing like that. I think that a lot of these people have had a little or no experience with IS and just go off of what they've heard. I'd state your case with the doc, but in my experience they sure do like to be right. . . hopefully you guys can reach some kind of agreement.

tara @ kidz said...

I was on the edge of my seat reading your post.

If there is ONE thing I have learned, it is that mom's are smarter than doctors. I have even had several doctors TELL me that. Ok, maybe it's not actual intelligence, but it is something undeniably powerful and real. One doctor said DM (dr mom) is smarter than MD.

We KNOW things are kosher. We may not know how to define when things are askew or the scientific reasons for why things happen or how to fix them. But we know intuitively if a diagnosis is something to accept or something to cock our head to the side and say, "Wait a minute... are you sure about this? I think there's something more to it, or something different."

Trust me. You know.

I would definitely get a 2nd or 3rd opinion. If you still don't feel comfortable with the IS diagnosis (which w/o the hypsarrhythmia and cluster jerking I would have serious questions myself), then ask okay, what is it that makes his brain activity meet the IS definition because it's not anything I've been told or read about before. Basically, force them to catch you up to speed in Neurology 101. Or at least make them think about it enough that if it is wrong, they can recognize it and figure it out.

Sorry for rambling. This is just a battle I have and most certainly will fight. I am so on your side and will look forward to updates. You are an amazing mom.

Ellen said...

Well, as I was reading the post all I kept thinking was, trust your gut, trust your gut. Like everyone here agrees, we know our kids best. And while doctors do know some thing about the brain, like mamaterapeuta notes, it's still largely a mystery for them, too. Lay out every single one of your thoughts to the neurologist. And, would it be possible to get a second opinion from a seizure expert? I think that would be such a good thing, if you can.

Connor's Mom said...

I completely agree with what everyone else has said. Doctors are just human, and they make mistakes just like everybody else. I think you are perfectly right to bring up your concerns with the neuro doc.


Anonymous said...

While my son does not have IS, he does have a seizure disorder. I do not believe you can induce a seizure and you certainly can't stop one before it's ready to be done or by medically intervening. So, those movements you talk about Daniel having just do not sound like it could be a seizure - especially if the EEG doesn't seem to corelate. It surprises me that the person reading the EEG and the video would say that it's a seizure when my common sense does not believe it is. Anyway, I analyze things just as much as you do, Melanie, and I totally believe in gut instincts - a woman's intuition. If something is nagging you, listen to it. I think your idea of talking about all this with the doctor is a good idea. So what if he thinks you are nuts? Though, I don't think he will. A good doctor should be able to explain things so that either your worries are put to rest OR he concurs with you - that it just doesn't seem to be a seizure after all. So, good luck at the doctor. --Amy

C said...

Well, Melanie, I'm hanging by my fingernails waiting for Tuesday. If there's no Hypps, there's no IS. If you can interrupt or instigate it, it's not a seizure, right?

A doc in my family once told me that reading EEGs is like practicing voodoo -- art vs. science. She was (mostly) kidding, but even our neuro and peds docs have acknowledged the difficulty in getting all things right and useful every time with EEG.

Hugs to you all. I sure hate the pins and needles thang.