and the verdict is....

we don't know yet....


UGH!!!

Results are NOT in... They should be there tomorrow or Monday.  So we wait... some more....

Dr Neuro decided to add an afternoon dose of Depakote.  So she will now get a dose at lunchtime.  We did labs.  They wrote a script for pull ups.  We can get them through DME (durable medical equipment) company.  They think between our primary and secondary insurance that the pull ups will be covered!! YAY!!!

so, for now, we keep on waiting....

home again...

We left the hospital on Monday morning....extremely frustrated.  No seizures or wetting whilst at the apparently, too fun to be at, hospital!!!  She still had the same abnormal spikes and wave slowings in the frontal and temporal regions.  This was mostly on the left side, but some on the right side too...

I really did not think these seizures were brought on by stress and over stimulation.  I was wrong.  She went to school yesterday and started seizing and wetting again.  ugh...  (no big surprise though)... She has started wearing pull ups now.  Morning and night.  She actually likes them better than poise pads.  Now I am searching to see if I can find help in paying for them...If anyone has any secrets, do tell!!!

So, tomorrow we go to neurology for her follow up.  Good news is, she has finally adjusted to the increased dose of Depakote.  I really think the behavior and increased seizure issues a couple weeks ago were because we increased too fast.  She has leveled off back to her normal...

We are hoping (keeping our fingers crossed) that the Dravet report is back.  It will only be 4 weeks, but the Dr. felt there was a good chance it would be there.  I am SOOO NERVOUS....  If she is positive for the gene mutation, more than likely he will change her meds completely (now that we are leveled off!!).  There is a good combination of medications that work well with Dravet kids.  If she is negative for the gene mutation... I have no idea what's next...  I guess that's what Dr. Neuro gets paid the big bucks for!!!  I feel like we will be back at square one....

Hopefully tomorrow is THE day.... the day we find out (after 9 years of searching) what syndrome Hannah has....  (BTW... still feel very torn as to how I feel about this... I will be absolutely relieved to know...but devastated with what it is.  Not a great diagnosis at all....)

frustrated....

Hannah has wet her pants almost every day, several times a day, since July....  We get to the hospital, all hooked up to leads, me... very excited to see what these seizures look like... and what happens????






NOTHING!!!!!!!!



UGH!  This is confirmation that one, this is not a urology problem and two, these seizures are also brought on by stress and over stimulation.  There is still hope, but it's fading fast to be honest.  I get so frustrated when we go to all this trouble and don't see her seizures.  She does continue to have almost constant spike and waves in her left frontal lobe (that's on full dose of meds).  They just aren't breaking through.  Apparently nana and I are not stressful enough!!!!

So we wait....

Please wait and PRAY with us.  We need to know what these are and where they come from....

EMU

Tomorrow....


off to the hospital we go.....


Praying we are able to see what these crazy seizures look like, where they are coming from, how often... you get the idea....


I will keep you posted...

~~what a week~~

Hannah and I went back to see her neurologist yesterday.  She was totally out of control.  I think we would have ended up in ER if we didn't have an appointment.   We all agreed this increase in Depakote was toxic to her system.  So, he lowered her dose back down and added in Klonopin at night (and also to use as a rescue med for clusters).  I think they are just buying time.  We are waiting for the Dravet results (hopefully will be back in 2-3 weeks).  If she is positive for it, then Dr. Neuro will be changing her meds all together.  So, he didn't want to change anything yesterday just to potentially change it again in two weeks.  I agree.  So, they want us to go back in two weeks to see how she is doing.  He also decided to put her in the monitoring unit to see what these seizures look like, how her EEG has changed, how many... and so on...  I have to admit, I am anxious to see how her EEG has changed.  They were able to get her in next Friday, the 22nd.  This should only be a 3 day stay... Hopefully seizures WILL cooperate!!!

She is already better today... MUCH better.  Amazing what lowering her dose did for her!!!  wow.  I still kept her home from school just to make sure she was more stable.  So happy she is feeling better...

still seizing...

Hannah cannot catch a break from this increase in seizures...  She is having a rough go at night with tonic's and tonic clonics; and a rough time during the day with absence and complex partials....  When she got up this morning, she was acting drunk.  really drunk....  I called her aide at school and gave her a heads up and sent Hannah to school.  The aide called me later, apparently the first half of the day wasn't too bad, but after lunch, nothin but seizures.  She was so out of it.  And then she fell asleep and they couldn't get her to wake up.  So, we brought her home early.

I called neurology again this afternoon.  They want her to come in on Thursday.  We may be looking at a med change...  I am hoping for an increase....

~the aftermath~

fabulous time at camp...

canoeing, zip line, crafts and so much more...

played with old friends...

made some new ones....

and became very sleep deprived=

LOTS of seizures when the worn out camper came home....  ugh

BUT.... it's still worth it.  She has the time of her life and gets to be "normal"... at least for a little while....

It's that time again.....

Wow... Can't believe camp time has arrived again!!  Hannah is off to her epilepsy fall weekend camp this evening... She is, AS ALWAYS.... SOOOO excited!!!  This child lives for this camp experience.  Hannah loves to re unite with her friends that she only gets to see at camp.  I love that for her....  This is the one place where all these kids can be normal.  No one judges them... No one makes fun of them... No one looks at them weird.  EVERYONE has one thing (and probably oodles more) in common.......... seizures.
The camp staff is amazing.  They love the kids like their own....  I don't worry (okay maybe just a wee little bit) about Hannah.  She is fantastic hands...

Thanks Camp Flame Catcher for all the wonderful memories your provide for Hannah!!!  It's an unforgetable experience......

new neuro...

This past week we went to a new neurologist.  This doc was recommended by her pediatrician and was a fantastic referrral!  He is part of Cincinnati Children's, but is at a different location.   Hannah and I both LOVE this new neurologist.  From even the first moments, he seemed to really "get" Hannah.  It was a very daunting feeling for me to try to explain Hannah in a 1-2 hour session.  Dr. Neuro really eased my feelings and made it very easy to talk.  We talked about these new seizures.  He agrees that puberty is reeking havaac.  He basically said to pull up my boot straps and know that it isn't going to be an easy time, but we will get through it.
About half way through the appointment, Hannah was being... ahem... very distracting.  I was having difficulty concentrating on what he was saying because I was having to "manage" Hannah.  He saw and understood this.  He stood up and told Hannah "come on... let's go for a walk."  He took her down the hall and to the nurses station, sat her down at a comupter to play games.  He came back and in the room and we continued to talk.  He said "it's okay... i deal with this all the time.  She will be fine out there and she is entertaining the nurses!!"
He really gave me hope that there ARE more medications to try.  But, he wants to continue to give Depakote a try.  But he DOUBLED her dose and changed her to an extended release tablet.  Dr Neuro thinks it should work better.  He said she wasn't on near enough Depakote.  He also increased her Diastat to 20 mg from 12.5 mg.  And, Dr. Neuro wants to add Ativan into her resue meds.  He said it works a little better and is much easier to give (squirts in the mouth in between cheek and teeth).  We will go back in 2 months to see if the changes in meds are making a difference in her seizures. 

At some point, I started to cry.  I was feeling so overwhelmed that we finally have  a doctor who understands Hannah.  He can see the "whole Hannah" and not just looking at one part of her and sending us on our way....


And then he dropped the bomb shell..........










He asked if she has even been tested fro Dravet Syndrome.  I told him I had talked with genetics a year or two ago about testing for it.  They poo pooed me saying she wasn't "severe" enough.  Dr. Neuro said that absolutely is not true.  There is a range of severity just like in Down Syndrome. He said there are kids on his caseload that look just like Hannah.  They are considered Higher Functioning Dravet kids.... He said they are really smart over there (genetics), but they don't know seizures....  He really feels she has Dravet.  Dr. Neuro thinks given her history, how she looks, how her seizures have changed, how she acts... that we may have FINALLY found a diagnosis.  Holy cow.  I really don't know how to feel.  Part of me is relieved and the other part of me is freaking out!  I am scared and giddy all at the same time.  At one moments, I feel like, yes, this really fits her.  And then other moments, I feel like, nope, no way...

From the Dravet Syndrome Foundation:  http://www.dravetfoundation.org/

Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of epilepsy for which there is currently no cure. Seizures begin in the first year of life in an otherwise typically developing infant. Initial seizures are most often prolonged events and, in the second year of life, other seizure types emerge. All seizure types are remarkably resistant to medical therapy and the prognosis for Dravet syndrome is poor.



Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and have associated conditions, which also need to be properly managed. These conditions may include:


•behavior and developmental delays


•movement and balance issues


•growth and nutrition issues


•sleeping difficulties


•chronic upper respiratory infections


•sensory integration disorders


•disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating)



Children with Dravet syndrome do not outgrow this condition and it affects every aspect of their daily lives.


Unless a cure or better treatments for Dravet syndrome is found, individuals with this disorder face a diminished quality of life. Current treatment options are extremely limited. The constant care and supervision of an individual with such highly specialized needs is emotionally and financially draining on the family members who care for these individuals.




So, we did lots of bloodwork and urine testing.  And now we wait.... we should have the results in 6 weeks.  I know it won't change the treatment... to have a name.... but we will HAVE A NAME!!!  All the doctor's for 9 years have all felt there is a syndrome, but have not been able to come up with one....  We will see...