I feel so guilty even mentioning this...
...because I know so many parents who have to fight tooth & nail for their child to get just one EEG. And it seems like Trevy is in for a once a month-er! You must hate me! And while I cherish the access we've had to these kinds of invaluable tools...it makes me sensitive & angry knowing others are donning I'll fight for my child fatigues and going to war for just one! This is one of those issues that I have soul-struggles about often. How to resolve the lack of real protocol when it comes to dealing with IS?! No parent has the same experience. And I feel to my core that there should be some absolutes! Like at least bi-annual EEGs...if parents so desire. Or like genetic testing...minus the insurance battle...should parents choose to move in that direction. I understand that not every parent wants to pursue every option. But it would make those who do have less battle...more discovery...if it wasn't a fight. But an indisputable protocol!
Soooooo...all that to say....
Late Wednesday night Dr. Neuro called. A six hour EEG slot had opened for the next day...and she wanted Trevy to fill it. After making sure with Grams that she could keep the big kiddos (which btw she has NEVER said no!) we agreed. And arrived at the un-godly hour of 7:30 am! Thank God the hospital has decent java! We were not without our share of unfortunate miscommunication...including asking how we felt about switching to an over-nighter because we had errantly been penciled in for an admission! We graciously declined...because frankly...EEG over-nighters are now on my most hated things to do list! Trevy's too!
In fact...when Trevy caught sight of the rainbow noodles. Attached to the recorder box. Attached to the electrodes. Which would be attached to his little curly top. He did the most amazing thing! He angry cried! And grabbed his head in protest! The technician apologized profusely. But Jonathan & I laughed because it meant that he remembered! And as any parent of a Special Needs kiddo will agree...that is HUGE!
Other than Trevor being VERY cross with the impromptu brain recording...it went well. We captured three clusters of seizures. He slept for two hours. Dr. Neuro came for a short visit to speak in person. And...much to our delight...we were released 30 minutes early! Typically it works the other way. To an extreme!
Late that evening...while I was still steeping in exhaustion because that's how we always feel after extended hospital visits...Dr. Neuro called.
Trevor's EEG has cleaned up a wee bit. Although it's still markedly concerning especially during sleep...with patches of disorganization which resemble the beginning stages of hypsarrhythmia. She said that Trevy's seizures from a clinical (meaning visual) presentation look to be myoclonic. Jerky...quick movements. The contrast is...on the EEG presentation...they take on the slow spike pattern of a Spasm. There was no mention of anything Complex Partial...although wouldn't you know there was no lip smacking yesterday!
The only new piece of information is that there is now activity showing at times in his right hemisphere.
I'd be a fraud if I didn't say that hit me in the sappy spot of my heart. Even though the thought of Trevy's little head lying sedated in the hands of surgeons skilled to do the unthinkable has made me weak in the knees. It was a real option. A real...perhaps miraculous option. Which I kept tucked away in my back pocket. To randomly take out and stroke knowing that I had the ACE hidden safely away. And the thought that the option could be a mirage...makes me weak in the knees too.
So the plan from here is to continue increasing the Zonegran for the next two weeks. If we see no improvement...we will move to Vigabatrin. Of which...due to the amazing donation of another amazing IS family...I have on hand already! Thank you SO much little Madeleine & Mommy!
And Sunday we head to Boston Children's for a 3T MRI. Which will hopefully reveal if Trevy does in fact have foci in his left hemi. And if my ACE is still tucked away in my back pocket. Safe for the random hope stroking.
It has been a very twisted...and hit by a bus...few weeks. I've felt my share of sadness. Shed oceans of tears. Damaged the psyche of my two older children I'm sure. Fought the feeling to just curl up and sleep...forever.
But honestly...I'm feeling good today. Okay. I have been held up by the support of my faith spending frequent time in the Book of Psalms...my amazing rock of a husband...my ever ready to do anything for Trevy parents...
...and from a whole slew of others! The friendships I've made with other IS families...is a thick glue...holding the fragile pieces of my heart together. The strangers who have offered prayers for our family...have been comfort & community. My friends & family...who follows Trevy's blog...and takes the time to email or call or even visit to offer love & encouragment...secures me that I am surrounded by Love.
By a three-fold cord. Which as a child I learned is not easily broken.
If you're reading this post today...thank you for being a part of the fiber of my three-fold life cord. Making us stronger. I'm feeling particularly vulnerable...and evidently chatty today!
And inclined to just say thank you.
And I know that I'm...that we're...going to be okay. Promise!
::smile::
8 comments:
In the midst of all of this, all I can think about is that Trevy remembered. WOW. That is amazing. Sophie has had at least a dozen EEGs in her short lifetime and she never remembers. She has had probably 10 in her neuro's office (they have their own EEG tech and EEG room). She always walks into that waiting room without even a whimper. It is not until they actually touch her head that she starts crying. Trevy is making the connection. His brain is processing the information. Hold on to that.
it's so good to hear such hope & promise in both ur's & shanna's blogs lately! glad that things r looking bright for the both of u! glad u're both "feeling the love"!!! ;0)
u're my hero!
sharon
Love you bunches, Mom
I am only so happy to be part of the support team!
Don't panic about the right side activity... there is a very real possibility that you are just seeing some generalization of the activity. If it's STARTING on the left, there can still be a left foci. If that foci is removed, the generalization "should" cease.
Hoping for an easy trip to Boston!
I know what you mean about feeling a bit guilty for easy access to essentials, such as the EEG. I wanted a 24 hour VEEG last week, so I called Jen, the EEG tech at Hope and she had already read KC's caringbridge page and was expecting my call. We checked in less than a week later. My heart hurts for the people who have to fight for that. It should be a given. Anyway, sending lots of prayers your way. For what it's worth, I'm so proud of you for how you are handeling everything with grace and courage. Your kids are lucky to have you for a Mom.
Karen
I'm moving to where you live!!! I don't know why we've had such struggles, but i'm ecstatic for anybody that has a great team surrounding them! I'm all for there being a standardized protocol for IS kids. That would be amazing!! I felt bad for reading about Trevy's angry cry with a smile on my face, but that is sooooo good that he has the recollection. I' m so glad to be there to support ya, you've been my sunshine on some cloudy days too! Here's to hopefully some brighter days for us all soon, b/c the rain storms have lasted for long enough.
First, always feel grateful for treatment...let the guilt go. Trevy deserves all this and more! I too feel this gulit being in Canada and not having the financial concerns of care that you all have down south...but it doesn't help either of us other than it makes me more aware and grateful. Some days it's hard to find things to be grateful for when in the midst of health challenges isn't it?
Second, oh your heart must be aching and twisted and hopeful and more through all of this. I do hope for answers and plans of action for Trevy as an outcome of this testing/EEGs, etc. Lean on all your supports through this. I hope you have a good trip to Boston, that your family does well while you and Trevy are away, and that you find kindness in all the strangers that you meet on this journey.
The mad cry from Trevy cracked me up! I get that. That was the FIRST time R yelled/screamed in absolute anger was when we went in for his third EEG. He was not impressed with being held down to have the electrodes attached and he YELLED....it was fabulous!:) Yay for Trevy!!
I'll be praying and thinking of Trevy, you & your family daily.
Good luck!
Love you all Danielle! We carry you in our hearts and prayers.
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