Gavyn’s Story

Site created on July 23, 2010

Seizure free sense February!! (2011)

 Diagnosed with Rasmussen's Encephalitis in July 2010 Gavyn has endured more seizures then anyone should have to. He had a surgery on February 10th 2011 which disconnected the left side of his brain and is on his way to a great recovery.


Gavyn was a healthy kindergarten and was living a normal life and doing great in school. He was learning to read and write with his right hand and loved playing basketball. Gavyn never had any real medical issues besides being born early.

In March of 2010 Gayvn started to have a lot of nausea and was throwing up a lot. Usually once a day sometimes twice. It went on like this for a couple months. We had thought maybe had belly issues so we were told to give him an enema to help move things out of the way. That landed us a night in the hospital for being too dehydrated. They drew blood, took various samples of different things and found nothing. The Drs. were thinking it may have been acid reflex or something GI related. He had an appoint setup for June in Fargo to see a GI specialist. Before the appointment occurred, in May weird things started to happen, Gavyn would get very confused and breathe weird, fold his hands into his armpits and he felt like vomiting. We took a trip to Kansas at the end of May and Eric his father noticed Gavyn had a weird gaze in his face that scared the hell out of him but brushed it off later not knowing what was going on. Then beginning of June, the 4th to be exact, Gavyn had his first clinical seizure at daycare. I didn't think much of it because I wasn't there to see it happen and thought he maybe was just sick but I took him to the ER anyway. The nurse there started to ask him questions and they were very simple ones. When she pointed at me asked who is that lady sitting in the chair next to him was he couldn't remember my name.  I got scared and held back the tears. They ran a MRI in Bismarck and found a lesion in the left side of his brain. Things weren't really answered and we were sent home on seizure meds. We were scheduled with the hospital for an EEG later in the week.  He soon developed a weird right eye lid twitch. He was aware they were happening. Before his EEG he needed to stay awake all night before the test ran. Eric, his mom and I took turns with him. Midnight trips to Walmart all the while Gavyn would get these eye twitches. We ran the EEG in the morning and didn't know the results until we would meet with the neurologist in the next couple days. That night Gavyn could not sleep with so many seizures going on. I had no idea at the time they were seizures and I took him into the ER the following morning. The neuro came in and was straight to the point (she didn't know what to do) We were setup with a referral right away to Children's Hospital MN Epilesy in St. Paul MN. Gavyn was there for a few weeks and put on a lot of seizure meds. The seizures started to slow down. We were sent home for the weekend and he slept away the 4th of July. We made a prompt visit back and forth to St. Paul with seizures returning. On July 16 he soon developed something call EPC (epilepsia partialis continua) An ER visit lead to an Ambulance to St. Paul Childrens. After a high doses of anti seizure meds nothing controlled the seizures. A brain biopsy was performed in July 2010. He has been diagnosed with a rare syndrome called Rasmussen's Encephalitis. We were told of IVIG which may surpress his seizures. Which Gavyn would get for a week and then continually get it once a week until Feburary 2011. Nothing seem to be letting up Gavyns seizures and we were told about performing a left hemispherectomy. There would be a chance to stop his seizures but it would leave him with right sided weakness, right sided peripheral vision loss and possibly all language skills. On August 13th 2010 he was scheduled for his left hemi. The day before his surgeon came in and told us that she could not do the full surgery right now she could only remove the motor strip and stop his EPC. It didn't feel right to her. He had surgery which removed the left motor strip in his brain (left frontal topectomy) on August 13th 2010. On August 23rd he was release from the hospital to Gillette Childrens for rehab. The surgery helped the seizures for about 2 weeks but they came back, sometimes 100 plus a day. Gavyn was given weekly IVIG treatments and also tried Rituxamab infusions, none which seemed to help for very long. He was drugged up continually which brought his seizures down to maybe 1 an hour. We were released from rehab the beginning of October to try to wait things  out. Seizures lasted until he had a hemispherectomy on Feb 10th 2011. He has so far been seizure free and improving everyday. This has been the biggest struggle no one should go through.

My friend Denise wrote a great site when she started a fundraiser for us. (http://www.giveforward.org/gavyn/) The fundraiser is expired.

http://www.bismarcktribune.com/lifestyles/announcements/other/image_d9c31d8a-ccc6-11df-ae9d-001cc4c03286.html

Newest Update

Journal entry by Cristy Gaarder

It's Christmas Break weekend and it has been a while sense I've written an update, I guess it's time.
 
School has been going well. Gavyn is still progressing on his spelling words and starting to read beginner books. Gavyn's expressive language is still something that is being worked on. Along with his right side strengthening. This fall we had put Gavyn in a stretching cast which he would wear a normal cast as if he had broken his ankle and replace it weekly while stretching his ankle each time. It actually helped loosen his back leg muscles but the weight of the cast made his foot point more outwards. Gavyn liked picking out new colors for his cast each week, We even got to do a combo color of pink and green, He was able to get around school pretty well wearing it also.
We have been encouraging Gavyn to use his right arm as much as possible to keep up the strength. When he remembers to use it on his own he is pretty proud about it. He'll be holding something and say LOOK MOM! We did have a fall back in his therapy when Gavyn fell on his wrist and fractured it. Not much was done after it happened. We were told to keep his hand brace on and let it heal.
Our other issue lately has been dealing with Gavyn's sinuses. He has had a runny nose off and on for probably over the past 2 years. There will be maybe a week or so break in between. Gavyn was getting these horrible horrible headaches that would put him down and he would cry from the pain. It was always in the same spot that the pain was coming from and I was worried it had to due with a result from his surgery... He's had scans of his head and each one seem to show sinus issues. He was prescribed an antihistamine to take daily and that seem to keep the headaches down to once a month. He has been off an on antibiotics also to clear things up but the snot still came and bad breath followed. We ended up taking Gavyn to an ENT 3 weeks ago. Gavyn was clogged up and the Dr was surprise he could breath with his mouth closed. He also noticed Gavyn had the start of an ear infection. We were already on antibotics so he wanted to see if it would help Gavyn and come back in a week for a CT of his sinuses. A week went by and Gavyn was doing slightly better CT showed better then what the Dr was expecting (not sure totally what that ment). He checked his ears, ear infection in full swing, and he said call back in a week and tell me how he's doing. Now it was the past Friday. I call back Gavyn's snotty nose is back with it draining down the back of his throat. He's prescribed another antibiotic...... It's slightly frustrating when I feel that he's just not getting it... I don't wish for Gavyn to have any type of nasal surgery but come on another antibiotic! A new Dr. means another long drawn out diagnosis and resolution. I understand it but it gets old when it comes to the health of your child. When this antibiotic is done we will have to wait and see what happens next.

We have been trying to keep ourselves warm this winter, we were lucky last year. It's snow boot season for Gavyn which has always been difficult. This year I found that Keeping Pace has a pair of boots. They are made for someone who wears braces so Gavyns feet slipped right in nicely. He isn't too keen on wearing them so we haven't had a full test in the snow. We are headed to Minot tomorrow for Gavyn's 9th birthday and Christmas Eve.

I hope everyone has a safe Christmas and stays warm.
Patients and caregivers love hearing from you; add a comment to show your support.
Help Gavyn Stay Connected to Family and Friends

A $30 donation to CaringBridge powers a site like Gavyn's site for one month. Will you make a gift to help ensure that this site stays online for them and for you?

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top