Thursday, March 10, 2016

March 10, 2016 -- The Newest Name on Hope's L-O-O-O-N-G List ofDoctors!!!

Hope met a new doctor yesterday. . . Dr. Buchhalter at the Alberta Children's Hospital Neurosciences Clinic. . .

Dr. Buchhalter is a pediatric neurologist who specializes in treating children with epilepsy.  Hope's current pediatric neurologist that has been with her since just a few weeks after her brain injury, has requested Dr. Buchhalter to see Hope due to her worsening seizures and complicated and puzzling history.  It was a bit humorous for sure, at this point, as the doctor and his nurse struggled to fit Hope's long history, as well as the current complicated seizure picture into the computer framework that they had to work with.  He said that it was not fitting!

Dr. Buchhalter was wonderful with Hope, and she was a little chatterbox trying to fill in as many details as she could around mom and dad . . . including letting the doctor know that she already has her own personal "seizure dog," as Hope affectionately calls her amazing little sister who is the very best at noting Hope's seizures!  It was a long appointment, over 2 hours, but we were very appreciative of his very thorough approach.  He reviewed all the "tools in his toolbox," as well as his desire to "start from the beginning."  "Tools in his toolbox" are the options for treatment that he has available.  Determining the best treatment will involve applying any clinical information that he is able to gather from "starting from the beginning."  So here is a bit of information as to where we will go from here. . .

"Starting from the beginning:"
He would like a new MRI of her brain (she hasn't had a complete one since she left the hospital in May of 2012).  Dr. Barlow, Hope's current neurologist, has already referred her for one about 6 weeks ago, but we still haven't received an appointment date yet . . . the wait list for MRI's in Canada are long!

He reviewed the EEG test done at the end of February.  It did not show anything that would prove helpful.  So he would like to do long term monitoring that involves both EEG and video recording for 3-5 days in hospital.  We will be waiting to hear back from them as to when this will be booked.  Again the waiting list is usually around 3 months, but he would like her to get in as soon as possible, so we will be on a cancellation wait list should any openings become available sooner, and we can swing it into our schedule.

He also want us to start using an online tool called Seizure Tracker.  It will take a considerable effort for me to set up due to Hope's complicated picture, according the doctor, but then he feels that it will be very helpful in gathering data that will help in precise tracking of all circumstances regarding Hope's seizures and factors possibly affecting her seizures.  As such, this information will help him to know what treatment(s) could be the better fit for Hope.

Finally, he would like us to call in weekly to his nurse with a progress report so they can stay on top of what is going on.  He is also going to talk to Hope's current neurologist and they will make a decision as to who is best to follow Hope from this point on.

"Tools in his toolbox:"
I won't go into a lot of detail at this point on each of these options, as we may never even get to some of these.  However, for those of you who might be familiar with seizures and treatments, you may recognize some of the terms used. . . 

Tool #1:  Increase her current seizure medication, Trileptal or Oxycarbazepine, to either seizure control or toxicity.  We left with another increase in Hope's current medication dosing.  She started that increase today.

Tool #2:  New medication . . . he gave us information to review regarding the next seizure medication that he will try if seizures do not stop before we hit the ceiling dose of Trileptal.  This new drug will be Keppra or Levetiracetam.  Hope has been on this drug before and reacted very poorly to it, so they took her off and moved on to a different option.  However, this was very early on in Hope's recovery after her brain injury (about 3-4 weeks after), and she was still so sick for so many other reasons, that they would want to try this drug again.  It is a preferred drug to other options due to it having less potential for side effects and less likelihood of damage to organs like the kidneys and liver with long term use.  We agree that it would be good to try a "safer" drug first, as Hope is very different than 4 years ago right after her brain injury.  However, it still is scary to think about as Hope has had so many very bad reactions to various meds that it's hard to imagine her doing okay without some level of complications.  If Keppra did not work for her, then they would continue down the list of seizure medication options, which are many.

Tool #3:  Seizure surgery . . . if the MRI and long term monitoring find that Hope is having focal seizures (seizures all originating from one spot in her brain), then she would be a candidate for seizure surgery to treat and most likely cure her seizures.  However, if Hope is having seizures on both sides of her brain and coming from multiple sites, then this option will not work for her.

Tool #4:  Vagal nerve stimulation therapy . . . I will not bother to go into this at this time, as it is further down the list of possibilities.  We'll cross that bridge if we get to it!  We do have reading material to review though, in the meantime, to give us a little idea of what that treatment would involve.

Tool #5:  Ketogenic diet . . . this is a specialized diet that has been known to greatly help people with seizure conditions.  Again, I will not bother to say too much more at this time, as it again will be a later option if others are not working.

That's it!  The doctor also recommended that we go ahead and begin the new medication and treatment for management of Hope's hormones, that was prescribed by Dr. Brain at the end of February.  As we wait for the brain MRI and long term EEG/video monitoring, we will use the seizure tracker tool to see how the new hormone management medication and increased dose of Trileptal affect Hope's seizures.

We do so appreciate your prayers!  Hope has not felt well for most of this past month.  Last week, she was only able to complete 2 full days at school (she came home early one day, missed a full day, and came home after only an hour at school another day).  She finished the week with another seizure, out of the blue with no precursors or warning it was coming, on Friday evening. . . it was an old kind of seizure that she hasn't had for about 3 1/2 years . . . we call them her catatonic or "freezing" seizures and they are unique in that she doesn't even know that she had a seizure!  Hope is having headaches and "feeling" seizures in her hands, eyes, and head almost daily.  She frequently feels dizziness and vertigo (room spinning).  She is getting the involuntary jerks in her arms, and she often cannot sleep very well, which only exacerbates her unwell symptoms.  All of these symptoms add up to a lot, and frequently prevent her from attending school, youth group, even church, or she is able to attend but cannot enjoy it and only makes her feel more unwell.  It is making it a challenge to stay on top of her schoolwork, but thankfully the Lord has enabled her to push through most days, and with the flexibility of her wonderful EA, Dawn, who will come to our home to work with her on those unwell days, she has been able to mostly stay caught up. . . but it is wearing her out . . . we see it in her . . . she's just tired, and tired of feeling crummy!

Other prayer requests that I'll quickly share with you while I'm filling you in on this doctor appointment . . . 

Tomorrow Hope will be attending a CNIB (Canadian National Institute for the Blind) workshop put on by Vision Specialists.  This workshop is called Social 'Eyes' and will cover topics like socialization, relationships, communication, body language awareness, etc. from the perspective of kids with low vision or full blindness.  It is a full day workshop and we are hoping and praying that Hope will feel well enough to attend and fully participate in the whole day . . . this feels like a big ask when she hasn't felt well the last two days, and was pulled out of classes this afternoon to work quietly independently due to not feeling well.  This is an exciting opportunity for Hope, and her very FIRST time that she will be able to meet other kids who have the daily challenge of living with visual impairment!  We think this will be great for Hope!

Finally, Hope had another orthodontic adjustment of her braces on Tuesday this week.  She has been doing fantastic with her braces for the last year, and things have moved along very quickly and are looking great!  The orthodontist added in the last tooth that needs to be moved drastically on Tuesday, and Hope has been in a lot of pain since.  It is manageable, but on top of the other unwellness that she experiences, it just adds another layer of crummy!

Thank you so much, dear ones, for continuing to keep our sweet girlie in prayer!  And for keeping Hope's wonderful doctors in prayer . . . for wisdom in how best to treat her, and also that they would see God's hand at work in and through her and be brought to saving knowledge of Jesus, if they are not already there.  That is always our greatest prayer in this continued journey and marathon . . . each new person in Hope's story is another person that God has divinely appointed to cross our paths and we deeply desire to be a witness for Him!  You are so loved, dear ones!!!

1 comment:

  1. Praying for Hope and your amazing family! I am so thankful for the new Dr. And pray that things will get better for Hope.