No news is good news

We've just been having normal, busy, fun times.  Madalyn continues to do very well with no signs of seizures or problems caused by spiking.  We did decide not to wean off of Depakote, but instead stay on both seizure medicines for now.  When I got to week two of weaning,  I saw some warning signs of seizure behaviors.  Her doctor agreed to go back back to the regular dose and within a couple of days she was back to doing great.

Since Madalyn is doing so well, I am postponing my consult with Cleveland Clinic.  I have her records ready to go if the need should arise again. 

Our forever family day with Josephine is coming in less than a month!  This time last year we had Travel Approval (TA)  and were anxiously waiting to fly to China! 

Josephine is growing and changing every day.  She still loves imitating anything Madalyn does!  Yesterday Madalyn and I told her she was going to Grandma's house while we went to a birthday party.  Josephine was so excited to be going alone (she normally watches Madalyn go alone). She immediately said "bye bye Madalyn, I wuv you".  Then she looked at me, "bye bye mommy, I wuv you".  Then to her crackers in her lap, "bye bye cwackers".   Fifteen minutes later when we pulled up to Grandma's house she proudly and happily walked up the side walk to Grandma. I was surprised that Josephine had so clearly understood that she was going to stay with Grandma while Madalyn and I went somewhere.  So precious!

Waiting children

Below is a link to the family that took pictures of my Josephine while I was still waiting.  Their Ivy and my Josephine are from the same orphanage.  This link gives a beautiful summary of their adoption journey to Ivy. 

I hope it touches families and gives them the courage to bring home their own waiting child.  When you visit an orphanage, you meet the children waiting....and the rows and rows of cribs and cubbies with their little picture taped to each.....with their little tooth brushes and cups.    All kids deserve a loving family.  

Here is the link : 

http://28daysofhearts.blogspot.com/

Great news-NORMAL EEG

Can I just say the whole world looks brighter, my mind feels clearer, and I feel more thankful when I get an EEG report that says "normal"!

This is the first normal EEG she has had in two years!  I didn't  know normal was possible!  I am so happy!

So, what we all noticed with Madalyn, that is, the return of her smile, her personality, and her reasoning these past few days can be seen on the EEG. 

So, to summarize our medication journey.....Lamictal worked best. Stopped due to rash.  Keppra was a nightmare.  Changed to Depakote.  Depakote reduced spiking, but spiking was still happening at least every 3 seconds.  Adding ADHD medication (first Focalin, then Vyvanse)  made seizures worse (and probably spiking worse).  Adding Vimpat to Depakote with ADHD medicine improved things.  And finally staying with Vimpat and Depakote, but changing from Focalin/Vyvanse to Adderall brought us to this happy place.

To complicate things however, we plan to begin weaning off Depakote.  We are hopeful she can use just one seizure medicine, Vimpat.....and continue to be seizure free.  I also think Depakote may be causing hair loss, and may be some of the attention/processing problems.....

Today, I am thankful!!!

Madalyn's EEG

Madalyn had her sleep deprived EEG this morning.  My sister kept her up until the first half of the night.  At 11:00, she was so tired, we decided to let her go to sleep for awhile.  She fell asleep the second she layed down next to me. I woke her up at 3:00 am.  She ate nachos and cheese and fell asleep.  I continued to wake her all the way until the time of the EEG.  The great news is that she was not nervous about the test, and said the glueing process was RELAXING this time!  When the technician told her to close her eyes and go to sleep, she did. EEGs are easier now that she is older.  It helps that the seizure medicine is doing its job and her intense fears and meltdowns are almost non-existent!

We should have the results early next week.  The good news is that on day 3 of Adderall, she seems to be doing better than she did on Focalin and Vyvanse. She is more awake, and her processing speed seems to be much better.  Her overall mood seems much improved.  I'm thrilled with this, but am afraid her EEG might not show the same as it would have had we had it a few days ago.  But, that's okay....as long as she stays good!

Madalyn also had her 6 month eye checkup with Dr. Mungan today.  At each checkup after her third surgery, her eyes have been turning in less and less.  And today, he said that her eyes showed no turn in! She will continue to be checked every 6 months.

My first IEP meeting at Madalyn's new school was rescheduled from today until next Friday. So, I'll update on that later.  For now, I'll leave you with this video I found yesterday as I searched for information on IEPs....it's a comedy, and for some reason, it absolutely cracked me up, which was a nice release from this special education learning experience!  http://www.youtube.com/watch?v=-fBTWuIX_DA 

Update on Madalyn

Many people do not realize that seizures are not limited to the tonic clonic type (previously called grand mal).  They can be simple partial, complex partial, myoclonic, absense, and more.  These other types may be more subtle, but just as dangerous.  People can often talk during a seizure, and even remember a seizure.  For Madalyn, there is a certain blank look that I have seen at the start of her big seizures, and now more often in these shorter episodes. 

Last time I updated I had noticed a possible seizure on Christmas Eve.  A couple of weeks ago I saw the same look and behavior, but this time I video taped it.  At the time of the video  I wasn't sure what was going on.  She had just finished a meltdown, so I wanted to be sure I didn't lead her into faking anything.  But in hindsight once I re-watched the video it was clear that she was not faking it.  Also, it looks too similar to the previous events.  At one point the smile she gives me  is the same smile she gave during a longer seizure a few months ago. 

When, I showed it to her previous teacher, both her teacher and the assistant said "we've seen that look a lot lately". 

I sent this video to her neurologist and she felt like it was seizure activity.  She increased her seizure medicine again.

Also, because these events have increased in frequency since she started after Focalin (ADHD medicine), we tried Vyvanse for the past 4 days.  However, she is so drowsy on it, her neurologist said to stop it.   Tomorrow she will try Adderall.  The interesting thing is that ADHD medicines are stimulants that don't often make people drowsy.  This worries me that these are causing more spiking/seizures.  However, without the medicine, and since the onset of her seizure disorder,  she cannot focus enough to learn and her hyperactivity would make even the most patient person need a glass of wine. 

She has an outpatient (one hour) sleep deprived EEG at 8:00 am on Friday. 

Once I get the Tracing from this EEG I will be mailing her MRIs, and all past Tracings, etc. to the Cleveland Clinic for an E-Consult.  I am hopeful they will have some insight or something new for us to try.

Tonight she wrote in her journal that she likes her school.  She also wrote that she likes music and lunch.  I have resorted to sending nachos and cheese lunchables just to get her to eat at lunchtime these days!  THAT's why she likes lunch :)  But I'm very thankful that she likes her new school.  We both still miss our friends and teachers at St. Anthony.  She still does not know anyone's name in her new class.  That's just further proof that her mind is not working like it used to..but, I'm on a mission...