It’s been so long…

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I don’t even know where to begin! We are in a happy place, with less seizures, more smiles and lots of laughter! The Aptiom has been amazing for Brett, in addition to drastically changing his VNS settings. He has gone down to minimal seizures, with having only a few a week. Recently, he went the longest ever without a seizure for 11 days! He has done a year of PT and OT, worked really hard in both and made exceptional progress. He hasn’t used his wheelchair except for a handful of times, in almost 2 years. Initially Brett had fine motor control of a 2-4 year old. He is in range with his IQ now at 6-8 age level. He will start up OT and PT again soon and we look forward to seeing more progress. We also hope to get him into vision therapy, as he has a visual disorder that they haven’t figured out just yet. We will finally get Brett’s Service Dog in a few weeks. It has been a LONG and painful journey to get here… but it’s time. He has been through a lot and healed so much since then. I am forever grateful for the anonymous donor that donated through the Chelsea Hutchison Foundation as well as DomestiPups for this amazing miracle for Brett! 

I still can’t believe my Epilepsy Warrior Boys are 18 and 13 already!! 

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Brynnon is a handsome man now, at 18 he is still funny as ever. He still has a few seizures a week, which causes some aggression and irritability, but other than that he does relatively well. He has done well adapting to the world with his moderate intellectual disability and still loves to fix things, especially taking apart things to see how they work! 

With the time available and money needed I figured out that for me, sewing is therapy! I started the adventure wanting a quilt for Brett. When I saw the prices, I decided to make one for him. Well, that led to me making ones for all my children. I started making VNS Magnet Bracelets along the way too. Oh how I do so greatly enjoy making special needs items that will help a child feel special. I started doing vinyl decals for EMS alert, since we use them I knew other parents had a need for them as well. I got busy enough that I opened my own Shop on Etsy! Check it out! 
http://etsy.com/shop/EWB
Here are some of the items I have made for our family and other special needs families! 

Say Bye Bye to those black  plain medical bracelets that come with your VNS magnets and HELLO to having your favorite colors and your name embroidered on yours. Wear them
confidently because they are stylish, adjustable and comfortable. What are your favorite colors?
Let me make yours today!

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We are making progress, progress is good!





It’s been a while, here I am again catching up! We are pretty excited that the Neurology Clinic we are going to sent us to a Geneticist! He will be researching the two genes that Brett’s Epilepsy Panel came back with. He also ordered a Fragile X and CGH+SNP Microarrays. He doesn’t think they have Fragile X, but he felt that we should do it just to cover that. The Microarray test may or may not give answers, but it will answer some questions.
The geneticist also feels that whatever we are dealing with is a female carried problem, and all my male children had a 50/50 chance of having it. I suppose only time will tell and it appears that we will wait several weeks to 6 months to get the full test results. YIKES! What is the test? Well, it test for chromosomal imbalances that may be the cause of developmental delay/disability on the boys by looking for any imbalance of genetic material such as additional copies or loss of whole chromosomes or deletions and/or  duplication in segments of chromosomes. The information we gain may have no clinical value as for treatment protocol, but it is possible it could. If nothing comes back the test will act as a baseline, and we will know what it is not. It will be good to have it done even if we get no answers, so at least we can say well it’s not _____. I have taken the test with a grain of salt, as I have seen so many parents hope that it would give answers and they were disappointed. I have also seen a few that did get answers from the test, so I still have hope for answers!  It would be a great benefit to have a name for this journey other than Cryptogenic Refractory Epilepsy. Even greater a benefit if we could know for future generations how likely it is that this will be passed on. Brett is still having a hard time,  

since the hospital admission he has not had cluster or big seizure freedom for more than a few days at a time. He seems to consistently do better after it gets dark until bedtime over the last several weeks. We have the Nasal Versed, Diastat and Ativan to use when they get out of hand. Fortunately, I find that the Ativan given soon enough can help him to not need the others. He is handling it well, and I know he is working at understanding his seizure disorder.  

He knows when his body needs rest and does not have to be told to sleep, he just lays down and sleeps when the “seizurish” feeling hits him. This is a wonderful accomplishment because resting is the first defence against clusters for him it seems. We purchased an awesome Purple Wheelchair for him from a kind seller on ebay. He let me trade a CARE bracelet I had for sale for the wheelchair and I paid the shipping. It is an Invacare Solara Tilt in Space model. It’s a bit big for





Brett and we have no way at the moment of transporting it. The idea came about when Brett went into status at the physical therapy office and having the Tonic Clonic seizure in the standard chair we saw how dangerous that was. What we need is a chair that can be adjusted when seizures happen to lean him back and keep him safe. CRS referred us to Easter Seals, who is working with us for a solution. We will need a Hitch for the family vehicle, but the amazing sweet lady at Easter Seals decided that he really needs a smaller chair, with wheels that he can move himself when he is able. They possibly even have a lift available for us to use to attach to the back so that we can still access the hatchback. Blue will be home soon and we will  not have a lot of extra space in the family vehicle. We expect to have it for at least a few more years, so we have to adapt it to make it user-friendly as our needs change. We are looking forward to getting out the house and truly obtaining “Positive Seizure Management” when Blue gets HOME!  It sure will be wonderful to finally be able to do things in spite of the seizures. As a family, we need to learn to live life to the best of our ability, through the seizures! I find myself in a great amount of gratitude for those that have donated to make Blue possible. Her balance is down to $410 as of today. It is amazing that a few people, churches, and one business came together and got us this far. We all have great happy feelings knowing that people have seen the need, reached out and gave.

Here is a link to the Red Basket site set up for Brynn and Brett’s Seizure Alert K9 Blue:


https://redbasket.org/320/bring-blue-home
All donations through Red Basket are tax deductible. We would like to thank Red Basket for their help in setting up the boys page. They are really great to work with and verify all askers, so you can feel good about donating to any cause on the site. 

I have been volunteering with National Seizure Disorders Foundation and hope to spend many years helping others achieve their goals! I really enjoy being the Treasurer and writing Caregivers Corner! We have some really great folks on the Board of Directors and I am blessed to have them in our lives. We would like to thank National Seizure Disorders Foundation for helping us to believe that Blue was possible and helping me not to loose faith or focus when people were not donating! 



Here is a link to the latest edition of Caregivers Corner:
http://nationalseizuredisordersfoundation.org/nsdf-caregivers-corner-by-denise-marsh-2/


   

Year end quick wrap up!

I didn’t realize it had been so long since I have posted an update. October, November and December have proven to be just as much a Epilepsy Roller Coaster as the prior months… well years. We have seen Brynn do so much better and have just a few small                                                   bumps of loss in seizure control.

All in all, I would still say that he is better than he has been in years. Brett on the other hand seems to gain some control and in a matter of hours, days or weeks crashes again. Brynn and Brett will see a geneticist in January.                                        We are hoping that we will have some answers from that appointment instead of more questions, like the previous Epilepsy Panel. The Geneticist hopefully can answer some of  

the questions about the two unknown mutations that came back on Brett’s previous Panel. (varients of unknown signifigance are 1.) heterozygous for late onset multiple carboxylase def w/biotinidase def p.G1n88Glu 2.) lysomsomal storage disease ds aspartylglucosaminuria p.Leu146Val)
The new Neuro does believe that they have a male dominant, female carried rare genetic female carried epilepsy syndrome similar to LGS.
   We returned to the Seizure clinic this 

month, and were referred to the seating clinic to order a bath chair. I brought Brett’s wheelchair to ask for a seat belt to be ordered. What a blessing they had one and started installing it right then! Unfortunately, Brett went into a Complex Partial seizure while it was being installed. With no break in between after several minutes the Complex Partial generalized into a Tonic Clonic.

911 was called after about 5 or so minutes. The nurse estimated that the Tonic Clonic seizure lasted about 8 minutes. He went to a postictal like state for about two minutes and then his eyes popped open into another seizure he went. Second Complex Partial that also went into a Tonic Clonic. It took an hour before Brett arrived in postictal state by ambulance to the ER. ER was over filled and the hall was being used to treat immediate cases. We

stayed there until he slept it off and awakened hungry and ready to go home. I got a prescription from the ER Dr. for Nasal Versed after he asked why I didn’t have his Diastat on me. I explained that I usually do not carry Diastat when I am fairly close to home, we really do not leave the house often anyway and when we do we are going to the Dr. anyway!

In the off chance we do get to take Brett to a store or restaurant he is 10, weighs close to 100 pounds and I would rather call 911 than try to get his pants down and administer Diastat in that situation in front of so many people. In hindsight, I feel terribly guilty that I did not have any emergency medication on me. I had no idea that it could take so long for Paramedics to get to us in this big huge city either. My thinking will change, once

again and I am sure my anxiety will not get any better either about leaving home with Brett and without Brett. We were only about 10 minutes from home and it was just a quick appointment, but once again I am reminded that Epilepsy does not have rules. When we left the house he looked great, no clue that a seizure was coming until it was happening.

I certainly didn’t expect him to be in status in a matter of minutes like he was. I went ahead and placed the Seizure Alert Dog Medication Inside bag that will be clipped to Blue’s vest in my purse with preloaded Nasal Versed and Diastat and will not be leaving home with Brett without it again. Brett will be getting the bath chair and his wheelchair now has a seat belt. We were referred to an Easter

Seals program to try to locate a better wheelchair after the physical therapist saw him actually have a seizure in the chair it became evident that he needs a chair that we can recline the back in the even of a seizure for his safety. If we can’t locate a used one he will order him a new one. All the children are excited about Hanukkah coming! Hope to update soon, if not I will I will update after the Geneticist appointment. We should have some photos in January of the boys and Blue! She is coming for a practice training visit with Brynn and Brett! Of course we are all really excited about this! Blue’s balance is likely sitting around the $900 mark! We are getting so close to getting her paid! God is good, even in the midst of this Epilepsy battle, God is so good and has never left our sides!  I have taken on new responsibility at National Seizure Disorders Foundation as the Treasurer and started writing Caregivers Corner as well.  http://nationalseizuredisordersfoundation.org/nsdf-caregivers-corner/  
It has been a blessing to be a part of NSDF and I expect really great things to come in the future.