End of Titration

Over a week ago Izabelle reached the end of her Titration off of Treleptal. At the same time, we removed the stimulant Vyvanse. Although hyper and seemingly out of control at times, it seems we have our Izabelle back personality wise. She is bubbly, creative, loving and a joy to be around! 

The downside of the titration though, is that Izabelle is still seizing quite often and for longer durations. One night last week, she had three, large, almost tonic clonic events. Learning has not significantly improved yet, we don't believe. It may take a bit longer to see cognitive gains. 

We have an EEG set up for Tuesday in Portland. I am really crossing my fingers for answers. 

As I said in a past post:

"Both Dr. Bergin of Boston Children's Hospital and Dr. Morrison of Maine Medical Center concurred that the irregularity and new severity of Izabelle's seizures were due to harmful side effects from the medication Treleptal. Treleptal was the first seizure med that actually seemed to work for Izabelle when she was first diagnosed at age four. The doctors feel that Treleptal has also made Izabelle's EEG's harder to read by creating fragments/irregular electronic discharges that resemble mini-seizures in the background. Basically, Izabelle's little brain has been having irregular activity, 24 hours a day, even when she isn't having a full blown seizure. It is our hope that once off of treleptal, that not only will the ketogenic diet work better, but seizures will become more centralized to one location in Izabelle's brain. Therefore, possibly allowing us the chance to revisit the idea of surgery. The EEG will look more clear and the techs will be able to determine more easily what type(s) of seizures Izabelle is having. The horrible side effects will go away, hopefully allowing Izabelle to develop at a more developmentally appropriate rate."

So... on Tuesday-Wednesday we are hoping that the EEG will tell us weather or not to continue Treleptal. If it is determined that we need to keep her off of Treleptal, we may need to add another med to stabilize her... The diet did work to cut seizure activity in half between May and September but the diet isn't strong enough, it seems, to continue decreasing seizure activity without seizure medication. 

We have a follow up with Dr. Morrison on Dec 10th to discuss the results of the EEG. 

Seeking Superhuman Parental Endurance

Somedays are harder then others, but it's going to require a ton of extreme parental endurance to see Izabelle through this phase of treatment or 'medical experimentation'. Let's see how much we all can handle without going a little 'coo coo' ourselves. 

As of today, Izabelle will be completely off of Treleptal. Last week, Izabelle gave everyone her best fight again with regards to eating her food and taking her meds. After a visit to the pediatricians office, it was decided to take Izabelle off of her ADHD stimulant in order to spur appetite. The diet continues to get harder and harder to administer. I had to re-create meals as well as change meal spacing and portion size to get Izabelle to eat all her food. You see, If she chooses not to eat, it is basically a medical emergency because her body is in ketosis. 

Meal time has become a chore, no longer a 'joy' for Izabelle. This week my challenge was to take the stress out of eating. I split all meals into two equal halves. Each meal has the perfect ratio so we don't have to time consumption. Eating in thirty minutes was just a huge pain. We are using the 'first/than' method  at MaMa's house. First we must eat, then we can play, etc... It's going really well. I just wanted to quit the Ketogenic diet this week. It's soooooo stressful!!! Plus, I'm still unsure of its effectiveness. With that said, I would like to see Izabelle through at least the end of her medication trials until we decide if the diet is actually helping her brain. It is true that seizure frequency has gone down but the intensity of the seizures is 10 fold. I still believe a violent convulsive/paralyzing seizure wreaks just as much havoc as five small staring seizures. In addition, we have not seen any academic gains during the time on the diet until recently. Izabelle may be starting to read again... which is so exciting... although possible to change any moment. This can be because of the wean off of treleptal, an increase of her medication zonisamide, etc... 

Izabelle's seizure disorder is such a mystery. There doesn't seem to be any rhyme or reason why things happen as they do. 

Here is part of a medical update I sent to Izabelle's educational/behavioral team: 

MEDICATIONS

- Izabelle will continue the titration off of Treleptal. She will be completely off the medication as of Monday night this coming week. The wean will still continue for a couple weeks or so longer because Izabelle has been on this medication for three years. The doctors are not certain when the medication will completely be out of her system. It may take longer. 

- Izabelle will stay at an extra 25mg of Zonisamide until further notice. 

- Izabelle will abstain from taking her ADHD medication until further notice to spur appetite. This morning she took her meds and ate quite easily. I do feel though that she requires a something to help monitor impulsivity,  behavior and maintain energy throughout the day. We will look into other options for this. 

SEIZURE DATA: 

11/6/14-11/10/14 Izabelle had 8 seizures lasting between 40 seconds and 5 minutes.

10/29/14-11/5/13 Izabelle had 13 seizures lasting between 32 seconds and 3 minutes.  Out of the 13 seizures, most were of the more intense screaming kind, therefore, I notified Boston children's and Zonisamide was upped 25mg. This seems to help. 

WATCH OUT FOR:

- Longer duration of seizures

- Higher frequency of seizures per day

KETOGENIC DIET:

- Izabelle will be going to a 7 small meal schedule at Mom's house consisting of three pairs of 1/2 portion meals and one snack. She will eat these small meals at: 6:45am, 9:15am, 11:30am, 1:30pm, 3:30pm, 5:30pm and 7:30pm. 

- No time outs will be used in relationship to eating at Mom's house or by Full-circle BHP services. 

- All Keto food prepared at Mom's house will be all-in-one which means that all the fat, protein and carbs are evenly distributed. We have permission from the dietitian to offer Izabelle remainders of these all-in-one meals at a later time. Izabelle must eat all the food by the end of the day. I have been using the first/than method for Izabelle and positive reinforcement for drinking/eating/med-ing when prompted. 

- We will stay on the diet at least until Izabelle's titration schedules are complete and we receive data from both neurologists confirming suspicions that one or both of the seizure medications are inhibiting Izabelle's learning or making her EEG appear worse. 

- I am attempting to schedule a 24hr EEG in the next three weeks at Barbara Bush children's hospital to see if we are able to see a difference with the removal of Treleptal. 

- If no difference is noted, other steps will be taken to isolate the cause of Izabelle's academic and cognitive regression. 

- Meanwhile, Dale, Miri, the doctors, and I will decide weather or not the Ketogenic Diet is actually helping. The decrease in seizure activity this week could be because of the addition of Zonisamide, who knows...

- Seizure tracker.com. Both families are now using the website. A pathways Ed tech will be working on setting up a school iPad with the app so that we may video a longer version of one of Izabelle's newest form of seizures. 

PSYCHOLOGICAL:

-As you heard, we are quite disappointed with the inadequacy of the data provided within Izabelle's neuro psych eval by Dr. Cecilia Kinast. I am seeking a second opinion. Dr. Bergin of Boston Children's will be looking over the neuro psych eval and will possibly refer us to a professional there. Izabelle's pediatrician, has referred us to AOS 93's psychologist. We are hoping that the school district will pay for another Psy. eval ASAP. The doctor will be drafting a letter and will send it directly to the Special Ed director.  

- The social worker at Boston Children's Hospital has suggested that Izabelle see a social worker/psychologist/

counselor because she may have some emotional needs that may be caused by her medical condition/hospital stays. etc. I have seen a counselor on occasion myself to cope with the emotional stress/trauma involved in parenting a child with medical needs such as ours. It has been quite beneficial. I see this as a strength, not a weakness. 

I will need some superhuman mamabear powers to get through this week. Prayers are appreciated!