Guillain Barre Syndrome - Update on DS post #22

[chasbos]

I am so glad that your son is recovering! That is a very promising sign.

I am just amazed at the amount of people that know someone who has this disease. Here is Canada it is very unknown and most people know nothing about it.

My brothers best friend came down with in 14 years ago (he was 16 at the time) while they were at a Provincial Ball Tournament (that is where they have traced it back to) he must have caught a bug and it just took hold from there.

He was also an athlete and became very fatigued often after that weekend. It took a while for Dr's to pinpoint the cause and it went downhill from there.

He has gone through many tests and trial therapies through out the years and is sort of at a holding pattern right now. He can still walk on his own - with the use of leg braces and he can basically use his hands but for the rest he is going fine. He is very lucky to have a great bunch of friends who help him out and take him on vacation with him and can assist him when he gets fatigued.

Your son is very lucky - tell him to keep fighting and keep moving around even when it is difficult ( I really think that helps - keeping your body moving increases blood flow) And I wish him a full recovery and a long happy life.

 

[CJMickeyMouse]

Just wanted to update again... DS is making amazing progress. He goes to a hospital for physical therapy twice a week.... and his PT has now turned into acceleration training. He is running on a treadmill with incline - doing agility and strength exercises. He has come further, faster than anyone expected. He still has a little trouble with one eye closing all the way - but it continues to slowly improve. His sights are set on basketball in November, but he may start playing a little fall baseball and cross country training sooner than that. We'll just wait and see where he is when the time comes. He had a prescription for 20 PT sessions and he has been to 8 so far. He is quite the spectacle each time because they are all amazed at how far he has come.

We realize how very lucky he is that the case was mild and his diagnosis and treatment were quick.

Thanks again for all of the thoughts and good wishes... they are certainly working!

 

[PRaffen]

If you haven't already, check out
http://www.gbsfi.com/overview.html

It's the website for the Guillian Barre Foundation. When I was diagnosed in 1986 with the chronic form (chronic inflammatory demyeliminating polyneuropathy) I received great information from this group.

Sounds like your son is on his way to a full recovery. One day at a time! His youth and positive attitude will help. The foundation I mentioned can put him in touch with other teens going through the same thing if he's interested.

Any treatment going on - plasma pheresis? IV immunoglobulin?

Best wishes for a speedy and complete recovery!

 

[CJMickeyMouse]

PRaffen, Sorry to hear about your diagnosis... I had never heard of GBS or CIDP but boy have I learned a lot! I have spent a lot of time reading on the website you posted... lots of useful information.

My son received two IVIG treatments and that really helped him turn around. He goes back to his neurologist in two weeks for a follow up so we have all kinds of questions for her. I have read lots of horror stories, but we were very happy with the care DS received.

Best of luck to you with your illness, and thanks for the well wishes for DS!

 

[terri01p]

I know this doesn't have anything to do with your case, but just wanted to add, did you know Andy Griffith suffered with this very same thing back in 1982 and couldn't walk for 7 months and then fully recovered.

 

[my3kids]

Did your son have any vaccines in the previous month? I think I read that there was an increase in some areas of GBS following the new meningitis shot. Not to the point that they were directly associating the new vaccinne with the disease but they were watching. After I read that I held off on having my oldest vaccinated until I heard more. I never saw the correlation mentioned again.

 

[CJMickeyMouse]

I know this doesn't have anything to do with your case, but just wanted to add, did you know Andy Griffith suffered with this very same thing back in 1982 and couldn't walk for 7 months and then fully recovered.

Yes I have been reading about this.... there is also a possibility that FDR had GBS as well. Scary stuff!

 

[CJMickeyMouse]

Did your son have any vaccines in the previous month?

No, he did not. We are not sure what triggered it, he did have a sinus infection with high fever a couple of weeks before, but they have not officially labeled anything as a cause in DS's case. I am anxious to go back to the neurologist in a couple of weeks... we have lots of questions for her!

 

[RSoxFan]

My brother was diagnosed with GBS when he was 15, also right after a trip to Florida. It started off when he noticed his foot was flopping when he walked up the stairs. The next morning, he couldn't squeeze the shampoo bottle in the shower. By that night, he was in the hospital unable to walk. We were lucky in that it stopped before the disease got to his lungs so he never needed a ventilator. He was in the hospital and rehab for a long time though. (I was 12 at the time, so it felt like an eternity to be without my big brother)
Three years later, he went to college on a hockey scholarship. He's 26 now and absolutely fine.

I didn't read the whole thread, so I don't know if anyone mentioned this already, but the actress who played Val on "The Nanny" actually had GBS twice. She completely recovered both times.

Lots of prayers and good wishes to your son! It's amazing how many people have been touched by this "rare" disease

 

[ead79]

I'm so glad to hear that your son is making such a quick and good recovery. Best wishes as he continues his therapy and looks forward to playing sports again!

 

[4nana]

So wonderful to hear your DS continues to improve and I wish him complete recovery . I know the stress of worrying about the health of your child and the toll it takes on ones family ((hugs)). Great to hear all the positive stories and my heart goes out to each and every one who has suffered or is suffering w/GBS or other heath issues.

My dear friend mentioned earlier in thread has not been so lucky . She has been back in the hospital for 2 wks., first ICU on respirator, etc., now upgraded to a reg room. Even with her frequent Immuno-Globulin/IV-IG. past few yrs, every couple months for no reason comes down with pneumonia and spikes 105* fevers and other serious ailments this horrible virus causes, such as aspirating her food. Currently she is being trained by a PT the process of learning to swallow. Such a constant stressful battle for her and her loving family to endure on a daily basis with no break in sight . She is a retired teacher, with thankfully excellent health insurance, but unfortunatley it has a limit of a million $'s and as precious time slips by with exorbitant hospital stays and treatments, they face new a host of new problems as they gradually reach the max and will have no insurance.

My health problems are minor and I truly praise God daily and feel blessed I have no debilitative health issues some struggle with daily. Godspeed and my heartfelt prayers to all who battle health problems. I admire your faith, strength and courage. ^i^

 

[tamman]

Chernabog,

I had the chills when I read your post because it sounded so similar to my experience...except I am a girl. I was also diagnosed at the age of 36. It was a year and a half ago about 5 days before Christmas. I had been running around like crazy the previous week and had a sinus infection that I really didn't take care of. I teach Kindergarten so I was very busy with celebrations, making Christmas gifts for the parents, plus trying to finish xmas shopping and run my own two kids around to their after school activities and parties. I remember waking up on Sunday morning feeling exhausted. I headed to the mall to get two last gift cards and I figured a Starbucks is what I needed to wake me up. As I was walking in the mall my legs felt very heavy and my vision was "foggy". Again, I just thought I was tired. We had a birthday party that night and I remember when I was signing the card that I couldn't grasp the pen fully and my hand was a little shaky. That night after we got home, I went immediately to bed.

When I woke up the next morning I looked at the alarm clock and I saw two clocks. I rubbed my eyes thinking that would help, but everything was still doubled. I don't know if it is because I am a blonde or just optimistic, but I got out of bed and nearly fell over. I walked down the hallway sliding on a wall because I would have fallen over. I wanted to see if I was seeing double in all the other rooms. I was just hoping it was a dream. Well, I managed to make it to the den and I went on the computer...big mistake. But...It made me realize that I need immediate medical attention (I thought I had a brain tumor). By this time it was 5:30 and everyone was sleeping. My parents came over and my husband took me to the hospital.

We walked into to the hospital at 6:00 and I was seen immediately. Within a few hours, I had a chest xray and MRI. I think the DRs initial thought was MS. Then the neurologist came in and did his exam. The weirdest thing was when he hit my knee with the hammer, my knee just hung there and did not move. I had no reflexes in any part of my body. They then did a Spinal Tap (to rule out MS) and by 10:30 I was diagnosed with GBS. He told me that he was going to put me on Immuniglobulin (sp) and I would be okay in about five days. I thought cool where is the prescription and when can I get discharged.
He then told me that I had to be in the hospital 4-5 days. WHAT!!!
I started using my fingers to figure when I would be released (remember that I am kindergarten teacher). OH NO....I am NOT going to be in the hospital on Christmas. Watch out...by now they were mopping the floor because I was crying so hard. My kids were 5 and 7 at the time and I WANTED to be home on Christmas. I finally calmed down when my hubby said that they would wait to open presents until I got home...just tell my kids that.

I spent the next three days on that wonderful drug. I had to wear a patch on my eye because I could see fine with only one eye, but the two of them together were not working right and my vision was doubled. I had needles stuck in me (EEG) to check my nerves. I was seen by a vision therapist and both physical and occupational therapist. I am a very postive person and just thinking about my family gave me all that I needed to get better very quickly. I was released only four days later and they arranged (with my request) that a home nurse come to my house on xmas eve to give me my last dose (IV) of medicine. I was able to spend the holidays with my family. I had a full recovery within a week. In fact, I went back to school after the holidays.

I honestly think if it wasn't for the quick diagnoses from the wonderful drs (especially my neurologist) at Troy Beaumont Hospital in Michigan that it would have been a different scenario.

This syndrome is quite rare but with a quick diagnosis it can be cured. Unfortunately, it is so rare that many drs won't even come across it in their careers.

 

[CJMickeyMouse]

Thanks to all who are sharing their stories and sending good wishes to DS. It's been a long road - with a lot further to go.... but we realize how lucky we are that he is progressing in the right direction.

 

[CJMickeyMouse]

Searched back and found this thread... it's hard to believe we are where we are right now, so I thought I would post an update.

DS 16 is now just over 5 months past the onset of GBS. The third week of June he came home from the hospital with a walker and could barely take a few wobbly steps with help.

Fast forward to today. You would never know it happened. He kept his starting position on the varsity basketball team. We were concerned that the everyday practice might take it's toll on him, but it seems to have no effect. We start games on Friday and it looks like he will play nearly every minute like he did last year. He achieved first team all conference last year as a sophomore, and hopes to repeat that this season.

We all realize how lucky he is... and how fragile health can be... now more than ever. Thanks so much to all of you who shared stories and experiences that have affected your lives - if only every GBSers recovery could be as positive as DS's.

 

[RitaZ.]

That's great to hear!

 

[dvcfamily41801]

Wow, this is amazing. I am so glad to hear your son is doing so well. My grandfather just came home from the rehab center 11/17. He went into the hospital back in September and was diagnosed with this. It is just incredible what it did to him. I pray that he continues to improve, I only wish that he would do the exercises that he is supposed to do at home, but he is being a little hard headed.

 

[CJMickeyMouse]

Wow, this is amazing. I am so glad to hear your son is doing so well. My grandfather just came home from the rehab center 11/17. He went into the hospital back in September and was diagnosed with this. It is just incredible what it did to him. I pray that he continues to improve, I only wish that he would do the exercises that he is supposed to do at home, but he is being a little hard headed.

GBS is so frustrating for the patient and their support system! Hopefully your grandfather will continue to improve. You are right, the exercises are the key to regain strength and muscle control. Keep on him, but be nice! Best wishes and to you.

 

[disnut1149]

Hi
My girlfriends husband got this after getting a flu shot. He recovered fully and he was in his late 40's.

 

[AndreaArtist]

Would you share the name of your dr at Troy Beaumont? My dad is in dire need of a Guillian Barre specialist in SE Michigan.

Chernabog,

I had the chills when I read your post because it sounded so similar to my experience...except I am a girl. I was also diagnosed at the age of 36. It was a year and a half ago about 5 days before Christmas. I had been running around like crazy the previous week and had a sinus infection that I really didn't take care of. I teach Kindergarten so I was very busy with celebrations, making Christmas gifts for the parents, plus trying to finish xmas shopping and run my own two kids around to their after school activities and parties. I remember waking up on Sunday morning feeling exhausted. I headed to the mall to get two last gift cards and I figured a Starbucks is what I needed to wake me up. As I was walking in the mall my legs felt very heavy and my vision was "foggy". Again, I just thought I was tired. We had a birthday party that night and I remember when I was signing the card that I couldn't grasp the pen fully and my hand was a little shaky. That night after we got home, I went immediately to bed.

When I woke up the next morning I looked at the alarm clock and I saw two clocks. I rubbed my eyes thinking that would help, but everything was still doubled. I don't know if it is because I am a blonde or just optimistic, but I got out of bed and nearly fell over. I walked down the hallway sliding on a wall because I would have fallen over. I wanted to see if I was seeing double in all the other rooms. I was just hoping it was a dream. Well, I managed to make it to the den and I went on the computer...big mistake. But...It made me realize that I need immediate medical attention (I thought I had a brain tumor). By this time it was 5:30 and everyone was sleeping. My parents came over and my husband took me to the hospital.

We walked into to the hospital at 6:00 and I was seen immediately. Within a few hours, I had a chest xray and MRI. I think the DRs initial thought was MS. Then the neurologist came in and did his exam. The weirdest thing was when he hit my knee with the hammer, my knee just hung there and did not move. I had no reflexes in any part of my body. They then did a Spinal Tap (to rule out MS) and by 10:30 I was diagnosed with GBS. He told me that he was going to put me on Immuniglobulin (sp) and I would be okay in about five days. I thought cool where is the prescription and when can I get discharged.
He then told me that I had to be in the hospital 4-5 days. WHAT!!!
I started using my fingers to figure when I would be released (remember that I am kindergarten teacher). OH NO....I am NOT going to be in the hospital on Christmas. Watch out...by now they were mopping the floor because I was crying so hard. My kids were 5 and 7 at the time and I WANTED to be home on Christmas. I finally calmed down when my hubby said that they would wait to open presents until I got home...just tell my kids that.

I spent the next three days on that wonderful drug. I had to wear a patch on my eye because I could see fine with only one eye, but the two of them together were not working right and my vision was doubled. I had needles stuck in me (EEG) to check my nerves. I was seen by a vision therapist and both physical and occupational therapist. I am a very postive person and just thinking about my family gave me all that I needed to get better very quickly. I was released only four days later and they arranged (with my request) that a home nurse come to my house on xmas eve to give me my last dose (IV) of medicine. I was able to spend the holidays with my family. I had a full recovery within a week. In fact, I went back to school after the holidays.

I honestly think if it wasn't for the quick diagnoses from the wonderful drs (especially my neurologist) at Troy Beaumont Hospital in Michigan that it would have been a different scenario.

This syndrome is quite rare but with a quick diagnosis it can be cured. Unfortunately, it is so rare that many drs won't even come across it in their careers.

 

[Southernmiss]

.