Answers from Cleveland

Well, several weeks ago I wrote the post about what we learned in Cleveland, but it never went through.  So, the short version is that she never had a seizure while in Cleveland.  The final opinion was that if her seizures come back and don't respond to medicine, she is a surgery candidate.  However, her spiking is in a large portion of her right hemisphere, so the surgery would not be as small as I'd like.

But for now, they agree with our doctor in Jackson that medication management is an on-going process and that you have to weigh the side affects with the benefits and just keep trying.

When we first left Cleveland, we had several really tough days (behavior/cognitive/attention).  After  a few days I realized it was because she had abruptly begun her seizure medication back and had to adjust to it again.  That tells me her medicine is helping her functioning, but that starting it back abruptly makes everything worse.

The best part of Cleveland Clinic was hearing the best pediatric epileptologists agree with our Dr. Parker.  Also, every person I met told me how wonderful Dr. Brad Ingram is.  Dr. Parker had told us all about him before we got there.  He studied at UMC and just completed his fellowship in pediatric epileptology at Cleveland Clinic.  He studied under Dr. Parker at UMC. There are less than 60 pediatric epileptologists in the US, and we are so lucky to be getting a great one. It will be the first time UMC has had a pediatric Epileptologist.

Dr. Ingram visited us at Cleveland Clinic and chatted for over an hour.  He is the most personable and kind man I have met!   He said the reason he is returning to Jackson to work is because of Dr. Parker!  He will be the one we see in Jackson whenever we are in for video EEGs.  He and Dr. Parker will be working closely together.  He already knew we were because he and Dr. Parker had consulted about Madalyn in the past.

In addition to chatting about random things, he shared that he has epilepsy.  He also shared some stories about Doctors that didn't help him in the past with his epilepsy.  He also said he got the 'lamictal rash" just like Madalyn did, and being an adult, postponed getting off the drug (very dangerous, and he admitted not a smart decision at all) just because it gave him the best seizure control with zero side affects.  SO, when I complain about missing the days Madalyn could take Lamictal, he totally gets it!  So, great :)

So, a great trip, all in all!  I don't think we will need to return, unless seizures get out of control and require surgery.   I honestly don't think that will happen, but Cleveland Clinic is  there if we need it.

Bedtime and no news yet

Sent from my iPhoneThe team conference is tomorrow. She hasn't had a seizure yet. Tomorrow should provide the plan and maybe the going forward recommendations.

Waiting for answers, learning a bit each day

Dr. Gupta was very nice. He said her EEGs are very complicated. He is seeing spiking. He has not seen a seizure. He thinks she could be a surgery candidate if her medicine quits working again and therefore we will stay as long as feasible to capture a seizure so that if it comes to that later, we will have that information.

He thinks the previous 4 hour episodes were seizures, not medicine effects because they are consistent with her type of seizures and because they were "episodes" with a start and end time. This is a different opinion than the other doctor here so this proves it must be a difficult call since we also had varying opinions in Jackson.

Madalyn's Jackson neurologist thought they were seizures as did one other neurologist in the ER. One other doctor in Jackson we saw while she was inpatient during an episode felt it may be medication induced. I go back and forth on it. I hate not knowing!

Today Dr. Gupta explained the results from her MRI. It's the same news as 7 years ago, but very helpful to hear it again, and he used a model of the brain and her scans to explain it to me. The summary is that more than 50 percent of her right hemisphere was damaged, but more significantly is that the area of damage are the primary pathways of the hemisphere, so it is is in an area that is more significant. It affected all the lobes of that hemisphere.

The injury isn't very significant except to point to the origins of her seizures. Most of her functioning has been transferred to the non-damaged hemisphere.

So, for now she will stay in the monitoring unit to see what happens since she is off her medicine.

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Moving hotels

Ronald McDonald house just called and they have a spot for us! Yeah! Our current hotel is expensive and not-so-great! But all  else is good here. 

She had an MRI and PET scan, so thar was two stressful days of no eating and anesthesia...

As of last night we stopped her seizure meds to wait for a seizure. Last night the monitors pressed her seizure alarm button and many nurses came in our room to check on her. I'll find out this morning what they saw and if it was significant.  Now that they have collected a few days of  data, today's doctor visit should give much more insight.

A volunteer is now coloring with Madalyn, which she loves! The volunteers here are amazing! They have given her a soft  hand made blanket and a pillow case. They bring lots of treats every day. It really helps Madalyn keep her mind off all the procedures and long days of staying in bed.

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Sweetness

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Dr. Wyllie Appointment

Madalyn, my mom, and I met with Dr. Wyllie today.   I gave her a copy of the MRI and EEGS.  She asked a lot of questions.  She is very direct and methodical.  I was scolded a few times for asking unsolicited questions and/or offering additional information.  However, I was told this is how she is, so I was fine.  I liked her quick thinking and decisive conclusions.

In the end she went over the fact that there are 4 avenues to manage epilepsy.  Medication is first, which she said we had given long and dedicated trials.

Next is surgery, which has basically 3 categories of patients.  One is cut and dry (that's not us), two is the "maybe" category. That's where she said Madalyn is.    This means we have to carefully weigh the benefits and risks.  Her biggest concern is that Madalyn has very good function of her affected side and if surgery needed to take out any of her motor strip, her hemiparesis would be worse.  And the third category is the patients that are not a good candidate, either because their seizures do not have a focal point, or are not in an operable area.

Since she is doing good on her new medication (Oxtellar), the plan is to NOT consider surgery right now, but go ahead and see if she is a candidate so that if we are in yet another "honeymoon" phase of a new medication, we know what our next step can be.  To determine if she is a candidate they will be looking to see if her seizures have a focal point (which Dr. Whyllie thinks they probably do (I'm guessing since they are partial onset seizures and a brain injury is the root cause of her epilepsy.)  Second, they will be looking at how much would need to be removed and what deficits that may cause.  After this, we will know if she is a surgical candidate if/when Oxtellar stops working, and if not we will know that we will be looking at the next two avenues.

If surgery is not an option, the other two avenues are ketogenic diet and vagal nerve stimulator.  These are discussed for patients that are not surgical candidates.  The diet is VERY limiting, and not without its own risks.

So, tomorrow's plan is to have an eye doctor appointment in the morning, then MRI with sedation.   Next she will be admitted for monitoring.  She will stop her medications and Dr. Whyllie says we will be here until she has a seizure.

Of course, my fear is that she won't have  a seizure.  My other fear is that they won't see the spiking or the seizures, and that could mean our problems stem more from her stroke and less from seizure activity.  What I hate about that is that would mean our problems are not fixable.  By problems, I mean her huge swings in the ability to learn, as welll as periods of big meltdowns and regression in everything.  For example, for a time, Madalyn had stopped being able to do monkey bars, stopped making her own snacks/lunch, unable to understand the difference in addition and subtraction.  Since starting Oxtellar, all of this has come back.  But, she has done this several times over the past 3 years.  That's why I'm afraid after a few months on Oxtellar, her gains will once again disappear.

Her history points to seizures, but at this point, and after trying so many medications, it's very difficult to tell what was medication side affects and what was seizures.  We do know, and Dr. Whyllie reiterated, that epilepsy and behavior and cognitive problems go hand and hand.  She said her plan is to  work very hard to get to the bottom of Madalyn's issues.  They will then present her case to 30 professionals and come up with a plan for us.

So, a whole lot depends on what they see on the EEG.  One year ago, Madalyn's EEG showed a lot of spiking in three lobes.  But, the past 3 EEGs (on medications) didn't show anything.  So, the question is what will her EEG show when she is off her medications.

Hopefully we will know a little more tomorrow, and even more the next few days as her medication leaves her system.

First appointment

Sent from my iPhoneMadalyn's appointment at Cleveland Clinic with Dr. Wyllie is at 9:45. I'll post more after.

Update

After having a total of 4 episodes in one week, Dr. Parker admitted Madalyn for inpatient Video EEG monitoring.   Her last episode was 5 days ago, so I'm not sure we will be able to capture anything.  But the nice surprise was that Dr. Parker is on call this week, so we get to see her each day we are here.

So far today she has not seen any spiking on her EEG.  She does see intermittent slowing, but that is likely from her known stroke.  When asked if intermittent means it could be from a seizure, she said sometimes even from a known injury, it can still be intermittent.

I asked her the liklihood that spiking or seizures could be deep in the frontal lobe, and therefore not detected on the EEG.  She said "that's always the concern with frontal lobe seizures...that they can be hidden".   I asked her if the location of Madalyn's injuries made that likely, or not.  Since she hasn't looked at her MRI sinc 2007, I showed her a copy of the report on my phone and she was able to tell  it was in the _______ section (going to get her to tell me again tomorrow) and therefore not the most likely to be hidden, but doesn't rule it out.

I asked her if we should still go to Cleveland Clinic.   I told her I was worried that if we can't pick anything that it would be a wasted trip.  She said definitely go.  She said that's our ticket to being seen if we get into a crtitical situation.  She referenced how fast this issue came up, and said it would be great to already be established as a patient at the Cleveland Clinic if things stay the same or worsen.

I asked her if we could decrease her current medications to see how she does.  Since she is having  episodes, something isn't working.  Plus, the Depakote is doing what Dr. Parker calls the "depakote perm", meaning her hair is frizzy and fried looking.  So, depending on how her EEG looks, we may consider weaning off of at least one medicine.  She said we just have to make only once change at a time and see what happens.

I asked her the likelihood that the EEG given in the ER and on the floor last Saturday would have showed "slowing" indicating a recent seizure.  She said, not likely, therefore the fact that it didn't show anything isn't very significant.

Fwd: Update, at UMC for observation

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Begin forwarded message:

From: Cheri Bergeron <cbergeron@holmescc.edu>
Date: April 14, 2013 1:48:14 AM CDT

Subject: Update, at UMC for observation

Madalyn threw up again on Saturday (after not since Thursday at school). It started with her stomach hurting while I was teaching at the gym. It started at 9:15 am.

This time she looked dazed, slow to respond, and unsteady. During the episode she slept intermittently hard....and then would wake and throw up and be out of it. She stayed this way for over an hour, and I drove her to the ER. She was still this way for several minutes after being in the ER and they chose to give her Diastat shortly after we arrived (around 11:00 am).

When she woke up at 1:30 pm she began to return to normal. By the evening she was completely normal.

They did an EEG after they admitted her to the floor, but she was over the episode by then. She is being watched over night and we will get To see the neurologist on call tomorrow.

I think the doctors think it was seizure related (her blood levels were all normal and medication levels where they are supposed to be). But I did not want to give the Diastat at home without the ER because I fear the AEDs could  be causing nausea, vomitting, and dizziness. I trust Dr. Parker, but much of what she has to go by is my observations....which seem so subjective.

So we are at the hospital and hopefully a step closer to knowing if the newest and even longer episodes are seizures.

Also since this would be the second time in a week Diastat was needed, I need to find out how likely it may quit working ......and what To do then....

I'm worried I should have given her Diastat at the 5 minute mark, but I was unsure that it was a seizure. And afraid that she was throwing up because of already sedating medicine.  The problem is, each time looks different! It's hard to know:(

Cheri
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