Hi folks,

Just thought I’d take some time to update you on our little guy, Ryan.

After a few days of test, lots of blood work, a spinal tap and other procedures a 9 year old boy doesn’t need to know about, we finally have a pretty good idea of just what is going on.

It appears that he has developed a syndrome called Axonal Guillain-Barre syndrome (GBS). Basically, a viral infection clicked some sort of switch with Ryan’s immune system that makes his immune system attack his nervous system. It starts from the feet and works towards the neck, and also progresses from outside to inside. The part of most concern is when it reaches the chest, as that can affect the respiratory system. Ryan did have some issues with breathing yesterday but the nurses here at Mary Bridge Children’s hospital watched over him like a hawk.

We believe we have passed the damage stage of the illness and we are seeing some improvement in Ryan in certain areas. Ryan had issues walking beginning Sunday, and by Monday he was walking like a 95 year old man. He hasn’t been on his feet since Monday at about noon due to the paralysis, and his voice changed a bit as the process of his illness reached his chest.

He can’t hold a book or play his DS just yet, but some of the paralysis has diminished and he is moving his arms and legs much more than he had been doing so in the past few days. He lacks fine motor skills, but his voice is improving. It appears that the primary treatment, an intravenous infusion of Immune Globulin (IGIV), is taking hold.

GBS is something that Ryan will recover from, most likely fully, but it may take anywhere from 2-3 weeks to as long as a few months. Unfortunately nobody knows how long the recovery will be, as it varies from person to person. Ryan may need some time in a wheel chair, walker, crutches, as well as going through a bit of physical therapy.

We haven’t heard him laugh for a number of days, and smiles have been fleeting (a square of chocolate spurred the last one ), which is something we miss from our active little guy. Anyway, below are some links that you might find helpful to explain what he is experiencing.

kid version

adult version

IGIV /IVIG

We’ll let you know how things are going from time to time, and if you have any questions, please ask.

Thanks for all of your support, calls, and e-mails. The folks here at Mary Bridge are great and there are many folks here with kids much sicker than ours, so don't forget them in your thoughts as well. That really put in in pespective for us, as some of the families have been here for a few months. Hug your kids.

Andy & Dawn

my prayers are with you and your family.....i have a little guy too, im a softy and am weeping like a baby.....

If he has 1/10th the heart that you have Dogfish he will fully recover so fast that the nurses will think it's a miracle.

Will keep Ryan and family in my prayers.

Speedy recovery Ryan

Hey Andy,

I'm sorry to read this, and very glad to hear that Ryan is on the road to recovery. My Sentiments echo Jerry's, he hit the nail on the head.....

How does one contract this type of illness? any idea?

Scary.

Basically there are a few types of bacterial / viral infection that can set this off, they think, as it is one of those enigmas. Illnesses that involve vomitting & diarhea, but only about 1 per 100,000 contract Guillian-Berre', so it is not wide spread, and the version he has is even less common.

Get better quick Ryan! We will all be thinking about you. I agree that Jerry hit the nail on the head.
Neal

Get well Ryan! Hang in there Andy.

Give it the anger Ryan!
ps Your dad promises a new puppy when you come home
Andy as you know I sent the rest in email form....get the puppy though.

Wow, glad to hear that your son is beginning to recover. I hope it's speedy.

My kids' health issues always scare me more than my own.

That is quite an ordeal for a young guy to go through and parents. I wish him well

I hope Ryan and the whole family get's well SOON !

Hey Andy, you don't know me. perhaps some day we will meet. I do have some information on this disease. A good friend of mine just went through the cycle. It was very scary... it started with a back ache, loss of motor control, stumbled, fell ended up in a medivac helicopter, his condition deteriorated while they were trying to figure out what was going on,in fact he was on a ventilator for a while. His recovery was textbook, as they say it is in most cases.... the duration of the recovery is what comes in to question. His was 5 weeks from his last day of work to his return. There is one thing that you might consider, while my friend was recovering they had people who had actually recovered from the disease come and sit with him, talk him through it from actual experience. He said that was the most important thing that happened for him. He told me after they discovered what was wrong his symptoms got worse before they got better... It will be scary for your son, you can bet his recovery will be full and in the not to distant future... reassure that boy constantly good luck

I am very sorry. Ryan, you and your family are in my prayers.

Get well soon Ryan.

Best wishes to Ryan and family...

Best wishes Andy, Dawn and of coarse Ryan.

Ryan is in our thoughts and prayers.

Wow! With all the house updates I had no idea your son was ill. Good luck for a speedy recovery Ryan!

Wow that is too scary. I can't imagine seeing Ryan like that, he is a tough little guy. I'm sure he will recover quick.

Tell Dawn we are thinking about you guys, and let us know if there is anything you need in the mean time.

sorry to hear this andy, i hope ryan has a speedy recovery!

Andy,

Sorry to hear about that. I hope Ryan recovers fully and quickly. Hang in there. I'll be thinking about you.

Sg

+ Many More from Bob, Corey and Ro-Ro. Sick 'em Ryan!

Jez...I'm so sorry! My little guy hasn't been sick in 2 years, but that's my worst fear is a serious affliction. Good luck!

Thanks guys for the kind words. I read them to Ryan just now.

One way, I have a co-worker who went through a similar issue, so I'll see if she would be willing to talk to Ryan. Thanks for the advice, and I have a beer waiting for you whenever you make it up here.

From this morning he continues to improve a bit at a time, but still has some flurries of pain, literally, as he experiences what I call "misfires" as pain radiates around his nervous system in a matter of seconds. More than a few tears have been shed this week, but he looks better today. Still waiting for another smile though.

The onset was fairly rapid, and if we had not been pains in the asses with our doctors we would have waited another day, and Ryan would have been in worse shape. Friday he was a giggling goofy 9 year old, and it went downhill rapidly from there.

Thanks again for those of you who called and wrote. It means the world to us.

I'm glad it looks like he's turned the corner, Andy, and will be improving now...good luck and let me know if there's anything I can do.

Fish on...

Todd

Man, I'm sorry you guys are having to go through this, Andy............but I'm glad to hear things are looking better.

Tell Ryan that I hope to see him feeling better very soon.

I'll be thinking of you guys.

Oh wow! Best wishes for a speedy recovery to all of you. Ryan, your dad needs a smile.

Andy, in my prayers, man.

Thoughts and prayers...

Mf

Ryan and all of you are in my prayers too Andy. I was surprised and saddened to read about this. I hope the recovery is quick and full. Mike

You guys are in our thoughts Andy. Hope the recovery is as quick as the onset.

No one, let a alone a kid should have to go through that. Keep fighting Ryan you will beat this!

That's tough man. Godspeed to your boy and your family.

Get Better Soon Ryan!!!!!!!

Tough duty for Ryan. When my niece was in children's, I was very impressed by the nurses and their obvious caring nature. Sound like the folks where your son is are the same. I always get a kick out of your sig line quoting Ryan "Give me the anger, fish! Give me the anger!"
So - "Give that pain your anger Ryan!"

You are all in our prayers and we wish Ryan a full and speedy recovery. Having great and caring parents is a blessing in itself. Bill

Thinking about your son Daily I hope he is holding up! And you and your family too... When we do meet I will be the one buying. Keep strong.

Get well Ryan, and stay stong buddy!

To Ryan and Andy and all of your family, you are in our prayers.

The Bell family wishes you well.

Good progress today, as Ryan starting taking in food orally. The GBS had affected his swallowing, so he basically hadn't eaten anything since Monday, just IV fluids and a few bites of pudding. He can now lift his arms up to 90 degrees, plus he read 35 pages today and turned the pages by himself. He really can't grasp anything, but he did scratch his ear and nose by himself today. Yesterday he couldn't do this due to the paralysis he was suffering. Lots of steps ahead of him, like sitting up on his on, standing, walking, writing, and so on.

Mentally he is all there, and verbally as well. Just having issues connecting the messages from his brain to the extremities. He smiled a lot today, his voice is almost back to normal (sounded like he had a cleft pallet on Monday), and he cracked a few jokes.

A month ago this was him.


He'll be back up and running in time for summer steelhead and Sekiu silvers.

Thanks for all of your support folks.

You better get ready for him to get out of there. You may never be able to keep up with him again. Put some oar locks on his bed rails so he can practice.
Congrats on the recovery...

I'm glad to hear about the quick recovery and I'm so sorry that you and Dawn had to go through this ordeal, taking on the medical professionals when they think you are over reacting is something parents should never have to do. You saved his life------Do what you want to me but leave my children alone.

Great to hear the good news.

All the best to your family Andy. Sounds like the corner has been turned. I'm just up the road from you in Monte.....if you need a hand, give a shout.

We've gotten a few calls and many e-mails. Ryan realy appreciates your support. We're heading into a full week at Mary Bridge, and man is this a great staff. Docs are great, and the nurses are top notch.

He is doing good. Pain management is better now that he can have the hard stuff, morphine. The nerve disorder he has makes his skin extra sensitive, and he has "misfires" where the nerves start to wake up and it causes a fair amount of pain. I'm proud of how he has handed the pain.

Today he walked 150 feet. Looked like a ittle old man making steps, and he wasn't fast. From what his neuroligist said, it appears that he may have been lucky and gotten a mild case of GBS. (Mild case of a syndrome that paralyzes you sounds wierd).

He ate solid food today, pizza, one of his favorite meals. With luck he won't have to go into inpatient therapy, and just do the outpatient stuff. Our hope is to be home this week. We hope.

Like I before, we have been lucky. Our boy is alive, he will recover, and compared to what others are experiencing here, our week so far is a minor inconvenience.

Thanks for asking. Sorry for giving a similar response to a number of you, but cutting and pasting saves a bit of time.

Andy & Dawn

Glad to see he's getting better!!!! Must have been a trying week.

I hope everythng goes well this week.

Good luck Ryan. Hang in there and kick some ass.

Kids are resilient and I think he will probably be stronger than before.

Take care and you are in my family's thoughts and prayers.

Hi Andy,
I'm just now catching up on this thread and I'm very sorry to hear Ryan's ordeals.
Really glad to hear Ryan is doing better and I wish Ryan a speedy full recovery.

Andy,

It's comforting to learn that Ryan is doing so much better. This is very good news. That is one strange and scary disease.

Sg

Great news Andy. Very scary situation but it seems Ryan is stronger than I. Brings a big smile to my face to hear he is progressing well. Keep it up buddy and we'll see you at CQ soon!!!

Excellent!

That's great to hear.

I agree with you........the doctors and nurses that work at children's hospitals like Mary Bridge and Children's in Seattle are a credit to the human race. When our son was at Children's I was amazed at what I saw from all of the doctors and nurses on their staff. Truly awesome people.

I remember going through something similar to what you're going through now, Andy. It was a difficult thing to put my son's life in someone else's hands, but I knew it had to be done. Even though it was years ago, your story about Ryan had me reliving the events again, and being thankful that even though we were facing a difficult time, we were much better off than the parents of some of the other kids we saw at Children's.

I'm so happy to hear some good news about Ryan. Wish him well for me, give the wife and Hunter a big hug, and shoot me a PM or a call if you want to talk about anything.

Great news, keep the momentum going...

He's home!

Ryan is a bit shaky, but he walked in the front door by himself, and he will be spending the night at home in his own bed. Feels great to say that. He has a wheel chair that he gets to use until he no longer needs it, which may be a month or so. Otherwise there is a lot of PT that he has to endure.

Thanks again folks for your help.

Good news...when he's done with this he'll have the rest of his life to know that he can overcome anything...and that ain't half a bad thing to know.

Fish on...

Todd

that is great news

YYYYYYYYYYYYYYEEEEEEEEEEEEEEEAAAAAAAAAAAAAHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


Go Ryan!!!!!!!!!!!!!!

Wow, I just got back on here and read through this, with much sadness at first, now I"m in a better mood, good news. Right on. Hope all continues well.

That's great news, he needs to build his strength for the humpy slayfest coming this summer.

That sounds like the best physical therapy anyone could get! Great news Dogfish, and keep getting better Ryan!!!

I can't imagine my son who is Ryan's age in a wheelchair.
I'm glad that he's home...thanks for the txt last night....I've been thinking about you guys.
Here is to a speedy and full recovery!
Ryan if you want to go fishing and hunting you need to do all of your PT!

Yesterday was the first day of the fall soccer season and Ryan was his usual maniac self, running into a group of three kids who had the ball and coming out on the other side, with the ball, without stopping. Kind of nice to see that happen. Damned nice, actually.

Ryan's bout with GBS started the first day of last spring's soccer season, and it was nice to see him back on the field.

Great News Andy....

That is a good thing.

Congratulations to Ryan and Andy...and the rest of the Dogfish family, as well!

Fish on...

Todd

I'm so glad to here Ryan is doing great. I love how strong and resilient kids are. As a father I can't imagine how tough it would be for me and mom if our kids had a serious condition to deal with.

God bless.

Great news Andy and Ryan. Just in time for a (hopefully) stellar salmon season!

Congrats to your family.

I don't trust that Ryan kid. He's always smiling.

yea

That's too cool. I'm glad to hear that. Cheers.

He's not smiling, Dave................he's laughing at you.



That's awesome news, Andy. I'm glad Ryan is back to his regular self.

Look at it this way, Andy:

All the new gray hair this has left you will enable you a shot at Senior Discounts.

That's great news Andy. Glad to hear it all turned out OK.

Sg

Good to hear Good things! Happy for your fam and your son Ryan..I have thought of him ...dont know him but a tough thing for a young one to go through

Great news Andy!!

WAAAAAAY UP!!

6 years ago today Ryan went into the hospital for a 9 day period. This was the worst situation my family and I have ever lived through, thankfully. Happy to report the kid is in excellent health and is doing well.

I had forgot about him being sick. you would never know it watching him wrestle

I'm very glad to hear that Andy.
Thanks for keeping us grounded and informed of the good news.

Great news.Good luck,

SZ

Scary times.

Good to hear!

Fish on...

Todd

WooHoo!

fp

That's some great news, Dogfish. Made me smile and reminded me that much worse things can happen to a parent than being psychologically abused by a teenage daughter. In other words, it gave me a little much-needed perspective.

Great news

I'm happy for you guys! It's crazy how things can be fine one day and chaos the next. I'm sure it's brought your whole family closer together.

Wow Andy, 6 years. It was so painful at the time. And now it is a distant memory.... I am glad to hear this, it is a reminder for us to appreciate every day. By the way you still owe me a beer. I will getcha some day.-HC

Glad to hear that Ryan is doing well....

Haven't posted in awhile but wanted to let you know that you and yours have been in my prayers often over the years. You're a good Man, Andy and have raised some great kids!

Great news! Glad to hear it!