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In December of 2008, Tyler and Tanner were born. Early on it was apparent that Tanner had some type of brain disorder. The doctors suggested Dandy Walker Syndrome or Joubert Syndrome. After birth and a MRI, he was diagnosed with a fused cerebellum. That evening his father and the doctor did research on the internet and discovered his condition was called Rhombencephalosynapsis.

Right from the start Tanner had a little difficulty breathing and eating. He got the breathing down right away, but had to stay in the hospital for 3 weeks to get the eating down. He is still a slow eater and needs to eat only smooth food.

It is interesting to see both boys development. Tanner was consistently about a month behind his brother. While Tyler was at the stage of crawling and walking around furniture, Tanner could only roll in both directions.

In the fall of 2009 Tanner seemed to be in more pain. He has acid reflux and more medication didn't help. In the middle of October a CAT scan revealed a one and a half-inch cyst and required brain surgery. After the surgery, Tanner seamed so much better and even started to army crawl. That was short lived. Over the next several weeks he was in and out of the hospital. He had a drain put in to take care of extra spinal fluid. Finally a shunt was put in. He went home the first week in December.

Tanner is a sweet little boy. When he smiles, he smiles with his whole body and he lights up. He is progressing well and has several great therapists. One thing that we have noticed is that he responds well to music, especially classical music.

In May of 2010, Tanner was put back in the hospital for the forth time. He had a bone graft the last hospital stay and it had broken loose. His shunt had to come out and a drain in. Having to keep a sick 17 month old level because of the drain was not fun. They put a bandage around his head and then paralyzed him medically. The result was the equivalent of bed sores that will need some plastic surgery to fix. Because the membranes (that had formed from previous surgeries) had filled with fluid and pushed his brain to the mid point of his head, he faces a craniotomy, his most invasive surgery.

In June of 2010, Tanner was put back in the hospital with an infection. The shunt had to come out and a drain back in. Having to keep a wiggly 17 month old level because of the drain was not fun. The infection finally went down and the shunt was put back in.

July of 2010- Tanner's head seemed to fill with fluid again. He has had a total of 14 brain surgeries, all since October 2009! His parents took him to the hospital, expecting another surgery. The MRI showed that his brain had moved almost back to normal. He will not have to have the craniotomy. He might be able to have the shunt removed at a later date. The shunt is working well. It was a wonderful miracle!!!!!

Tyler and Tanner Happy Tanner

Tyler and Tanner at about 3 weeks old just after Tanner came home from the hospital.

A happy time before his surgeries!
Tanner with Drain Tanner After Cyst Surgery

Tanner in the hospital with a drain.

 

 

Tanner after his first surgery...removing a one and a half-inch cyst.
Tanner with bandages Tanner with sores
Tanner, May 2010 with bandages and medically paralyzed. Tanner, May 2010 with sores.
Tanner with drain

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Tanner in June of 2010 with drain. Video of Tanner in hospital-June, 2010.
 

September 26, 2013 Update

He left the hospital and started to improve. He learned to feed himself. He was talking in 2-3 word sentences. He seemed to understand quite a lot. He had trouble with his motor skills. He didn’t walk until he was about 31/2. He still struggled with seizures. They tried many medications to stop them but nothing seemed to help. Then they tried combinations of medications. Each of them had many side effects but none of them helped.

Tanner’s seizures started happening more rapidly. He was having 20-30 a day and then more and more each day. He is currently having over 1000 a day. The startling thing was how rapidly he was digressing. He gradually stopped talking. He could walk, but because many of his seizures were drop seizures, he would be standing or walking and suddenly drop on his head or chin. He started walking less. He was being stitched up every week or two even though his parents kept a helmet on him.

In the fall of 2012, his mother took him to Cleveland to a seizure clinic. They evaluated him. The doctors came to the conclusion that the seizures came from scar tissue caused by his stroke. They said he was not a good candidate for the surgery to cut out the scar tissue to stop the seizures, because it was on the good side of his brain. They came home discouraged, still looking for answers and solutions.

In July of 2013 he was evaluated by a team of doctors at Primary Children’s Hospital in Salt Lake City, Utah. All of the doctors recommended the surgery he is scheduled for on September 26, 2013. Because Tanner’s seizures start at the scar tissue but then go across the brain and light up in many areas on the other side of his brain, they are going to slice through the center of the brain to keep it from going across. He will probably have to learn to walk and talk again.

Meanwhile, there is another therapy that has been helping many children with seizure problems. It is not approved in Utah or many areas of the US and very difficult to get. It would be nice to know if it would help Tanner.

Today is September 26, 2013.....Tanner was supposed to go into surgery at 8:30am this morning, but was changed to 10:30 am. That is Mountain Standard time. They finally started operating about 4pm. It is a 3-4 hour operation and I have not heard the outcome.

September 30, 2013

Tanner is doing verywell. The surgery was sucessfull. He had 5 IV's and 15 doctors working on him for about 4 hours. The next day he had about 7 small siezures, that were just eye flutters. No drop siezures. On Saturdaythey turned on his Vegaus Nerve stimulator. He had it put in to try to control his siezures a year ago, and nothing seemed to change. Since they turned it on now, he has had no siezures! I saw him in the hospital last night and he seemed so calm. He even played a little with a toy. He as had no interest in toys or much of anything for the last year or two. He has only said "ma" since the surgery, but that is a start.

October 4, 2013 Things have been improving. One of the things that I noticed was that his appetite has improved. He has never been a big eater. He seems happy and even laughed out loud a few times. One tender moment was when his siblings came to see him, they made a loud noise and he laughed outloud. They kept doing it and he kept laughing. It was the first time in a real long time that they were able to interact with Tanner.

October 6, 2013 After they removed the drain Tanner's head started to swell a little at the top. He also started having spikes of fevers. The doctors did test blood and urin and did a CAT scan. They also checked for infection in his head. All looded fine. They thought he might have "chemical menegitis". He would just have to outgrow it.

)ctober 8, 2013 This afternoon Tanner was released from the hospital. His head was a little more swollen, but stil soft. We were so excited to be going home!

October 10, 2013 Tanner's head started leaking where the stitches were. By the time we got to the emergency room, there was a steady drip. The stiched his head tighter and sent us home. They said the fluid that had leaked looked clearer, so all was well and sent us home.

October 12, 2013 Moisture was seping out of the stitched area fo Tanner's head again. Another trip to the emergency room. They found bacteria in his cerebral spinal fluid. The normal white blood cell count in the CSF (cerebral spinal fluid) is supposed to be way below 100, and his was well above 600. He was running a fever. The doc had just drained over 90 cc's of fluid off of his
head, which made him feel a lot better. They started an IV antibiotic and were
transferred up to the 2nd floor into the Neuro Trama Unit.

October 25, 2013 Tanner had his drain taken out and a shunt put in. He had a hard time waking up but was happy by the afternoon.

October 26, 2013 Tanner got to go home. His favorate word seem to be "go" as in go go go go go go! Still not visible seizuzres!!!!

Tanner with a cousin Tanner with a cousin
Tanner with a cousin Tanner with cousin
Tanner July, 2013 Tanner with softer helmet
Tanner July of 2013 Tanner with softer helmet
Tanner in Car seat August 2013  
Tanner August of 2013  
Tanner at PCMC October 19, 2013
Tanner at PCMC October 19, 2013 Movie of Tanner 10-19-2013

 

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