AnonymousDecember 22, 2008 at 5:40 pm
Hello, The good news is that my son is improving. The bad news is that after a week at a Children’s hospital and 3 weeks of follow up visits, they still have no idea.
He had a sudden onset of weakness and sensation loss on November 22nd. He woke up that morning with what we thought was severe heart burn and he looked ill. We were at a hotel at the time for a tournament he played in.
He continued to feel sick and said that his legs felt weak. We had a doctor who is a team parent look at him and told him to take an advil and a pepsid. They said to have him warm up with the team and see how he feels. When he went out on the ice, he was teary and looked scared. He has never missed a game for illness so I just thought he was upset. He was walking fine at the time.
When he went to skate, he could barely stand up. My husband had him come and sit on the bench for the game. After the game, he went out to shake hands and collapsed on the ice. He was carried off and evaluated by an ER doctor and a paramedic who were in the audience. He had some hits (nothing unusual) in his hockey game the day before. They did not feel there was any spinal trauma but that he had proximal hip weakness and had us go to the hospital near the rink (90 miles from our home). They did CT scan of the head and an MRI of the lumbar spine and they were normal. The doctor thought it looked more like a neurological disease than an injury and sent us to a Children’s hospital near our home. Once he got his skates off, he could walk in an unsteady way to the hospital but 3 hours later, he could not even hold any weight on his legs.
When we got there, they did a spinal tap and blood work that were normal. He could still sit normally and move his legs when laying down at that time. In the morning, he woke up and he could no longer move his legs at all. He had also become incontinent of urine over night.
They did EKG’s, Chest X-Ray, MRI’s of the head, neck, mid back and re-read the lumbar and sacral spines. All were negative. He had normal deep tendor reflexes for his entire stay as well. By that afternoon, he could no longer sit on his own and could not feel sharp/dull and hot and cold below his belly button. He could tell he was being touched but it was number than above. The, about 36 hours after it all started, he began moving his legs in bed and has made steady imrpovement since.
So they pretty much felt they ruled out GBS, the actually felt he had a psychiatric conversion disorder. Then, they did more testing on his bladder and realized he had a neurogenic bladder and that he could not have a conversion disorder.
We were discharged catheterizing him every 4 hours because he could pee but had a lot left in his bladder when he was done. We are still doing this but now only twice a day and his left over urine is getting just about normal now. He is now also getting wet in a pull up at night which he has not done since he was 3.
I wanted them to do an EMG in the hospital but they did not feel it was needed. Then they decided to do one this past Friday and it was normal. Of course, he is at almost normal strength now so I am not sure how helpful it would be. They never repeated the spinal tap after the first night this started.
So, he left the hospital walking with a walker and over the course of the 3 weeks since then he is now walking on his own, walking up and down stairs slowly and the bladder /muscle/sensation has improved over the 3 week period in a steady manner. He still can’t run, jump etc. His calves are weak and his glut muscles. I do PT with him at home and he goes once a week.
The doctors now want to go with the idea that he had a spinal cord injury during the hockey game the day before even though all MRI’s were normal, even one taken 1 week later. He never had signs up central nervous system problems like spasticity, hyper reflexes etc. so I don’t understand the latest diagnosis. They said that people with unusual (and mild) forms of GBS do not have bladder problems but the urologist today said they often do.
We are at a loss here. We are thrilled he is getting better. They never treated him with IVIG, steroids, etc. We just don’t know how to plan for his future and how to possibly prevent this without a diagnosis. Does anyone have any thought given your backgrounds and any suggestions about what we should do next. I did ask his doctors if we should let him get flu shots and they all hesitated to say yes.
I know they are doing their best and are frustrated as well. I was just curious if anyone had thoughts about his case and if mild GBS can have normal LP (done right after onset) and deep tendor reflexes. Whatever he has is a rare form of something so we are just looking to others to help. We would like to get a second opinion as well. If anyone has suggestions from GBS experts, that would be great.
Sorry so long!
AnonymousDecember 22, 2008 at 7:31 pm
Wow!! You guys have been through quite a bit, especially since you haven’t yet received a diagnosis. Did they say why they didn’t feel an emg was necessary? Is it because the lp came back normal?
I’m sorry I can’t answer your questions, but I certainly wanted to let you know that your son and family will be in my thoughts and prayers.
Take care and stay encouraged!!
AnonymousDecember 23, 2008 at 6:13 am
I would say no no no flu shoot and find doc who knows g b s cause we had similar prob in richmond ind and they did two lumbars second one showed gbs high proteen in spinal fliud and mri was normal first time but second time found a mess. so if he goes down hill again please before he does find nero/doc who knows about gbs so your son does,nt go though what I and many others have yes bladder probs man cant say any more about that but I think its gbs mild case like mine but it turned into bad later started healing then 3months later it went other way and stable after 3weeks but here after 3yrs still unable to work or run need wheel chair to go in store cant walk any distance with out help.So please find nero/and doc cause better be safe than sorry thanks and good luck praying for you in indiana jim …
AnonymousDecember 23, 2008 at 11:09 am
Hi 3boymama, Welcome to The Family. Please find a gbs specialist in your area, you can contact the laison for Denver area through the forum here or maybe ask a few of our members from your area. I’m sure they will answer you-but just in case they don’t see this thread I’ll send them a message for you. In my opinion it does sound like gbs. Bladder problems are normal, I have neurogenic bladder from lack of treatment in the beginning. I also was given the conversion disorder dx, it was wrong! That just shows you that the drs you dealt with have no idea about gbs other than what they were taught in the 15 mins in med school. A normal lp is not unusual either, 5% of gbs patients have a normal lp, I was one also. Just by what he is experiencing it sounds like gbs, a mild case compared to those who were put on a vent, but none the less its still a possibility of being gbs. I also have the sensory involvement form, although mine has gone on to be a chronic version. In my opinion he needs to be seen by a neuromuscular or a neuro experienced in gbs/cidp. As he may still be a candidate for ivig to calm the attack on his nerves so further damage isn’t happening. Keep a diary of his symptoms, abilities, problems, get copies of his med records and tests and do lots of research on your own so you can be the best advocate for him. Rest is the best thing he can be doing right now, support from family and friends will also help in recovery. It really sounds like he had an acute onset of gbs. As for vaccs I wouldn’t, ask your dr if he/she gets it personally-chances are he/she doesn’t take flu vaccs. Feel free to ask as many questions as you have or just vent if you need to, and don’t apologize for lengths of your posts-if it wasn’t important it wouldn’t be long. Keep up the pt, your son is lucky to have such a caring and trained mom!!! Take care.
AnonymousDecember 23, 2008 at 12:14 pm
Hi 3boymama, I am seeing Prof. Dr. Diana Quan at the University of Colorado Hospital in Denver. (303) 315-7221. She is one of the most thorough neurologists I ever encountered. I have a rare variant of CIDP and she was able to identify it very quickly. She requires a referral and records sent to her ahead of time.
AnonymousDecember 23, 2008 at 12:24 pm
Thanks so much for all of the support and information. We would love to find a neuro in the Denver area who knows more about GBS/CIDP. Thanks for forwarding that on to those who may know. We want a 2nd opinion but we keep getting names of people who work at Childrens and that is where we spent the week.
I am so mad at myself because I was so freaked out in the hospital and exhausted. I should have pushed more for testing and possibly medication. They just really through us with the conversion diagnosis.
I did ask for an EMG twice and the neuro said it would be best to wait 3 weeks after onset since she wanted to see if it was trauma. It would have been a better test sooner than now for GBS. I also should have pushed for the repeat LP. I am afraid we missed our window for a diffinitive diagnosis but it would still be good to have someone else review this.
Would it be appropriate to give IVIG to someone who is so close to normal after just one month…yesterday was our 1 month “anniversary” from this horrible experience! We follow up with his neuro on Dec. 30th and I think she wants to possibly do more vascular testing but his other doctors feel something would have shown up on his MRI’s. Who knows! I am going to mention GBS again but they keep saying no. I am not sure if I mentioned this but his physiatrist said that there are never bladder problems with GBS so she really doesn’t understand it either.
His bladder has really improved and continues to do so. He has not been incontinent during the day in 3 weeks and seems to be less incontinent at night. Less and less in his pull ups. His post void residuals were in the 300’s in the hospital and have steadily come down to 5-60 cc’s. We cath him twice a day. The doctor wants to see 2 straight days below 20 before we stop. We have been close but not quite there yet. I can’t find any information about what a normal post void residual is in 12 year old boys but I guess his doctor feels 20’s or below.
He is sad that he can’t have sleep overs and embarrased about wearing pull ups at 12. He was trained at night at 3! I guess the sleep-overs would not be a great idea because of fatigue anyway. He just wants his normal life back. It is not easy to be going through puberty and having your mom cath you twice a day but he has really been amazing about it.
Thanks again, your support and opinions are so greatly appreciated. I would love to hear from anyone else to help me “arm” myself for his neuro appointment next Tuesday!
AnonymousDecember 23, 2008 at 12:27 pm
Thanks for that name. That facility is right next to Denver Childrens. I am going to ask his pediatrician or his neuro for a referral and call to see if she takes children. If she does, I will put her on my list of options.
At least, she could review his records. I believe they have the same computer system so she can see all of his records very easily. That is great to know. Thanks, Nancy
AnonymousDecember 25, 2008 at 12:08 am
Well for one thing your physiatrist is wrong on his bladder facts! It is a mucle controlled by nerves, it is just as likely to get hit as any other muscle/nerve in the body. I still have a neurogenic bladder, which has been since my first paralysis back in 05, just dx with it in oct08 but have had no major problems in between. I couldn’t feel 1000cc of saline that was pumped into my bladder for the test:eek: I still have residual of 50cc in between not sure what it would be for a young boy either, sorry. If it were my son, I would print out the information from this site, since we have lived through the experience, some of us more then once, we know more then most drs know about gbs/cidp. Ask if its a mild case of gbs or if it might be cidp
December 25, 2008 at 12:48 am
I responded to your pm you sent me.
Dawn Kevies mom
AnonymousDecember 25, 2008 at 3:48 pm
Thanks Dawn and Cheryl for all of your advice. Cheryl, is 50 cc considered normal for you? Do you cath daily to find out the numbers? This is definitely the thing that his most difficult for my son. He is going through puberty and to have to be cathed and to be wetting at night is emotionally extremely painful for him. It is worse than him being kept out of hockey and his other normal physical activities.
He is very low in cc’s most of the time but occasionally jumps. Usually he is below 20 cc (the doctor likes that number) but occas he jumps from 40-65 cc’s. He was in the 300’s post void 4 weeks ago so he is doing much better and is always continent during the day.
Dawn, your correction is a good one…. his GBS (if that is what it is) is recovering rapidly but it was very acute and severe although only up to the
As for PT, we do take it very slow. A PT who knows GBS told me about the fatigue and to be very careful. He seemed to tolerate the increase in activity well in the hospital which was another reason PT was not conviced of GBS. At that time, his progression was rapid. Now it is a bit slower and I am a bit more cautious of fatigue.
Thanks for your responses even though it is Christmas. We spent Thanksgiving in the hospital so it is wonderful to be home for Christmas even though I feel a bit less festive this year to say the least.
He was a bit removed this morning as well… until he got a cell phone for Christmas. Now he is thrilled!
Do you all think an EMG/NCV can be negative 4 weeks out with GBS? His physiatrist thinks it would have been positive. He had no “action” at rest which she said you would always see with GBS. Of course, she also said no bladder so I have some trust issues with her knowledge of GBS!
Again, thanks for all of your help. You, afterall, are the true experts!
Merry Christmas, Happy Hanukah, Happy New Year…. we celebrate them all!
December 25, 2008 at 10:18 pm
About the ncv/emg, if there is paralysis as you state, with gbs/cidp, there are typically at least slowed velocities if not total conduction blocks. Was the pertinant nerve for myastanis gravis tested? Is the person doing the ncv/emg a tech or a neuro experienced in administering the test? If he is not 100% recovered and still has difficulty walking thus requiring pt, there would have to be some sort of indication on the report I would think. Is it possible there is a tumor or something pressing on nerves, could it be as simple as an injury from hockey? if gbs is totally r/o, maybe they could try steroids to reduce any inflamation if there was some sort of injury. I think it is a step in the right direction getting the additional mri. Just thinking out loud randomly, could there be a fracture in the cocyx (spelling) from a hockey fall, I have read that injury to this area can cause issues with the bladder??? I should mention that before you would consider steroids if a doc does bring it up, you have to be positive that the dx is not gbs, as some abstracts suggest steroids are counterproductive to gbs. I guess my plan if it were my child would be to do the additional mri, if nothing was indicated, I would probably do Mayo or seek another doc adult or peds (as he is older) and be sure if it is gbs or not. If it is gbs, you have to be prepared to accept that this illnes stands for getting better slowly and it may take a fair amount of time to get back near normal. Being that this has recently happened, it sounds like a fair amount of progress has been made. We are going on 2 years and 3 months and still continue to progress. Good luck, please keep us posted. I really do understand your angst regarding the need for a proper dx. If I ever have a doc give us a dx of conversion disorder again, I truly may go psycho right in front of the doc!! Don’t be shy or quiet, be sure to let the docs know you mean business!!! Best wishes for a healthier New Year.
Dawn Kevies mom
AnonymousDecember 26, 2008 at 12:19 am
They did MRI’s of his entire body from brain to coccyx and a lumbar puncture. There are no fractures, no swelling, and no eye involvement or other findings indicative of myaesthenia gravis. If it was due to injury, it would be hard to believe because there was no bleeding, swelling or fracture on MRI’s taken immediately and 6 days after the symptoms began. They symptoms did not start until about 16-24 hours after his game ended. There are times when spinal cord injuries in kids happen without fractures and symptoms show up 1-4 days later but they have positive MRI findings.
The EMG was done by 2 physiatrists. The main one was a fellow and the other who watched and made suggestions was the attending physio. They are not experienced with GBS…she is the one who thought there were no bladder issues but she seemed to know about EMGs. I was thinking they may test the bladder but they didn’t.
I just really think we may never know why this happened. I may need to just accept this at some point and deal with living with the unknown. I just thank God that for whatever reason, he is getting better on his own!
I really hate how doctors run to conversion disorder so quickly. I have worked in healthcare for 20 years and I know that there is a TON we don’t know. How can we say it is mental when there is so much we don’t know. That should be considered WAY down the line and not as an easy out when something is unusual! The neuro still insisted it was conversion when 2 psychiatrists stated it was not! It was SO frustrating! A neuro giving a psych diagnosis that 2 psychiatrists don’t agree with.
I am glad that part is over but wish we had an answer. Thanks for your thoughts and advice.
AnonymousDecember 26, 2008 at 1:28 pm
Nancy, keep going for a dx or at least rule out the other possibilities. I am still ruling out myself and its been since 05. As for the “action” in gbsers, I didn’t have action and that was in all 12 of my ncv/emgs. I didn’t have my bladder tested until just this oct, and that was because of severe problems with kidney stones and a mass in the abdomen. I haven’t had to do the caths yet, those are the results I had from my tests. While I was in the hospital the first time with paralysis I had to have a bladder scan after each and every void-that was every 2 to 3 hours per the drs orders-that still makes me mad thinking of all the rest I lost, the scans showed 50 to 150 -so I take 50 as much better and nothing I worry about.
I understand what he feels about night time problems and his life-friends sleep overs etc. My son was a late bedwetter and until this past summer he had those same fears and anger. With him we tried meds and everything else in the world to help him, we finally found that when I got him up 2 times a night then weaned down to 1 time a night he trained his bladder for a certain hour to get up himself. it took 9 years so its not a quick fix by any means. Does you son have a urologist working with him? maybe having his bladder tested would give him a piece of mind-I know it did relieve my mind and has added to my case in a large way. Its not painful or that bad, it does require an hour or so. It might help him realize its not his fault and there is a reason for what is going on. Just my opinion.
I can’t believe a neuro didn’t perform the ncv/emg tests, I have had 12 done about to be 13, and they were all performed by qualified neuros.
I am sooo sorry your son and you all are going through this. I do hope you can get a second opinion by someone who has the knowledge of gbs/cidp.
Don’t go by what others say about the rate of recovery meaning he doesn’t have gbs, the amount of time to recover is irrelavent to the dx. I had an acute onset with a rapid start to recovery, I’m talking about from total paralysis to up and able to walk with assistive device a total of 2 1/2 weeks. I went home from the hospital on the day I had set for myself, able to walk with a cane for very short distances and a wheelchair for long ones. The difference between old normal and new normal are many, I have all types of limits now and relapses galore many because I don’t like limitations:o .
Keeping a journal might help your son see how well he has improved since being in the hospital. It will show him how far he has come in recovery, especially if he has plateaued and there are only small little bigs(thats what we call small improvements only seen when one looks back as compared to visual improvements. I like to use the online journals-it helps because I can’t write with a pen for too long and I like pushing buttons:D . I hope your son can keep a positive attitude long enough to get down this long road of recovery, I know its hard for adults to do I can’t imagine being a young man going through this. Keep up the Great support Mom! Hugs!
AnonymousDecember 26, 2008 at 2:15 pm
I am sorry your son is going through so much at such a young age.
I have GBS and my bladder was affected. I have control now but must take medicine for the bladder. It was embarrassing for me as an adult but a young boy going through puberty and how it makes him feel must be terrible for him. One suggestion may be to let your son have a day or evening get together with his friends.
I hope your son keeps making improvements. With Mom as a caregiver and therapist he is headed in the right direction.
AnonymousDecember 29, 2008 at 12:19 am
Hello Everyone, I have been doing some more research and it may be that my son has transverse myelitis or GBS. His MRI/LP was normal but they did not do it with contrast and this is required and to be repeated if negative 2-7 days after the onset of symptoms. His clinical picture seems to follow this a bit more. He was at his worst at about 24 hours after this started which is typical for TM (transverse myelitis). He did recover more quickly than typical but bladder issues occur almost immediately for TM and I am not sure if that is the case for GBS…????
Even though he is doing much better…even able to jog now… not run well yet…. I am going to ask for an MRI with contrast at the neuro on Tuesday. I also have the names of a GBS expert and a TM expert and am going to ask them to consult with them.
TM gets me a bit nervous because it can be the first sign of Multiple Sclerosis but I need to stay calm. It is unusual in kids (but can happen) and since his LP and brain CT were normal, that is hopeful. 90% don’t have recurrence. Those who do, likely have MS.
I was wondering if anyone here was misdiagnosed with TM or knows much about it. I know that GBS and TM are mistaken for one another quite a bit. People with TM are often told they have conversion too… ARGH!
Hope you are all well. I will let you know how the neuro visit goes Tuesday. I really want an MRA (of the arteries) and a contrast MRI of the entire spine done in the next week…. wish me luck.
If they both come back normal, we will have to live with some unknowns and just be thankful for his continued progress. He was dry that past 3 nights!!
AnonymousDecember 29, 2008 at 12:14 pm
I am so glad to hear your son has been dry the past three nights and making progress in his recovery.
My bladder issues started immediately with GBS but each person can be different in what organs are affected.
Good luck on the neuro visit and try to stay calm for now.
December 29, 2008 at 12:38 pm
TM is the syndrome I was trying to think of that I mentioned in my pm to you. There is another girl on the site whose mom I have contact with and tm is her dx, I will see if I can find her # and hook you guys up if you like. IVIG is used in transvers myelitis, even ms too. From what I try to understand from my readings and to some degree what I personally try to spin so I stay calm too, is that once you have one autoimmune, ie allergies, pyloris keratosis to even the more severe, you are more suseptible to getting another autoimmune issue. Other than cidp and diabetes specifically mentioned as once you have diabetes you get cidp, I have never been able to find specific info that links one to specifically another. I am hoping luck of the draw. My opinion as to the diabetes/cidp link is that diabes has peripheral neuropathy and it might be hard to diferentiate between the two? who knows. It is hard to evolve to this point, I still have trouble with it, but I try not to worry about other things happening, so your comment about remaining calm is great. I wish I learned that earlier on. Sorry I did not get back to you sooner when I mentioned something else that acts like gbs. I am going to try to find the moms name w/ the little girl who has gbs/tm.
Dawn Kevies mom
AnonymousDecember 30, 2008 at 12:29 am
Thanks again everyone, I would love to connect with the other mom who reported TM. It would be interesting to know how her MRI was since my son’s was normal.
I have a good list of questions for tomorrow. I’ll let you all know how it goes. I spoke with my son’s hospitalist today… she gave me her cell number so she can still advise and follow him. She likes the idea of an MRA and MRV (arteries and veins). She thinks they were fairly confident that neuro felt he did not have TM so I will be asking why tomorrow (nicely) and see if I am convinced as well.
Take care and thanks for your time and caring.
December 30, 2008 at 12:44 pm
Check your pm, I gave you the name of the person whom I was thinking of. E-mail her and I am sure she will respond, I will try to call her and see if it would be ok with her if I give out her number.
Good luck at the appointment.
AnonymousDecember 31, 2008 at 5:39 pm
I just got off the phone with the neuro and I am a MESS!
First, she said that the radiologists at Childrens are not sure an MRI of the artery and veins will show much because they really felt they looked good on the regular MRI. They are going to contact some doctors at the Univ. Hospital Radiology to get their opinion.
Then I questioned her on what she kept saying yesterday…”This could happen again and it could be worse the second time.”
Her recommendation is for my son to never play any sports again except tennis, swimming and track.
How do I have my son who is extremely active by nature change everything with absolutely no medical evidence of injury other than clinical findings. Is it just me or isn’t just as likely that he had transverse myelitis or GBS without diagnostic tests as well?
She said it is not because he wasn’t ill before and had no fever in the prior week or so.
He could have had a bad stomach and we he would not have told us. He looked ill that morning and had a severe heartburn like feeling. Couldn’t it still be a weird virus?
I would change his life if there was a true medical reason but how do I do it on a guess?
What would you all do? One side of me would love to shelter him. He is walking and smiling again and will only be a kid for 7 more years, if she is correct and the next time he was permanently paralyzed….not playing sports would be trivial. That being said, we would be making this decision on know medical evidence and he would be more likely to be depressed, miss out socially and physically since he really doesn’t like those other sports.
I realize this is trivial compared to most of what people are experiencing on this board. It is great he is improving but the fear of going through this again is tearing me apart.
Thanks for hearing me rant!
AnonymousDecember 31, 2008 at 7:41 pm
I am also sorry that you are having a difficult time with getting a dx. If you read many with the symptoms that were out there in plain site also were held up from getting treatment because of hospital staffs that were not well educated with GBS. Many of us were so frustrated that they ran all these tests and they were not showing anything. That is what the insurance companies require is a list of tests that rule out other illnesses. My first dx in the ER was MS but then they kept me over night for observation and I slowly progressed like your Son did and they kept doing tests. I never had the nerve tests but they knew it was effecting the nerves because I had no reflexes. They guess I had a sinus infection that was in that 30 day window before the onset that left my immune system weak and the GBS attack slipped in. Bowel and Bladder problems were only the tip of the iceburg. It was my patient OT and PT people that really helped. I would get your Son into a aquatic rehab program too if your insurance would allow it. It was very good to take the weight off the joints and give many of us a freedom that we could not reach with on land rehab. Actually too easy and it was quickly found that we could over do it in the pool because there was not that much resistance in the water. The pool tempature was a great problem too. The exercise pool at the fitness club was 84 degrees and if I slowed down I got chilled quickly. The rehab pool was a nice comfortable 94 degrees and was a great benefit. The hot tub was out and was not allowed.
On the other hand my friends Son had more of what your Son went thru…quick onset and was very athletic. He was paralized from the waist down and still has fatigue from larger jobs like raking leaves in the yard. His recovery was much quicker than mine and I have not had a change to ask her if his bowel and bladder was effected. My other friends daughter had GBS below her waist and she quickly recovered too. Both of these young people had residuals that did not heal and some that took years to put behind them. Both returned to normal lives to work and go back to school. Another case was a Bride to Be on her rehearshal night colasped. 2 weeks later she was out of the hospital and enjoying her new live with her husband. She was married that night in the hospital in her hospital gown. It was videoed and shown at her wedding the next day to people that come in from all around the country. Then later she had an other wedding so she could wear her wedding dress and get photos.
I still struggle with bowel and bladder problems but live goes on and each month/year I look back in my Journal and see that things are continuing to Get Better Slowly! Sounds like things are also getting somewhat better for your Son too.
Happy New Year to you and your family! You have been a great advocate for your Son and I am sure he will realize how lucky he has been to have to to do some of the jobs that only a Mom can do with some dignity. There is alot to be said about having privacy in your own home for those kind of things. You have done a great job MOM! We can not say enough about all our caregivers!!!
AnonymousDecember 31, 2008 at 8:53 pm
When it comes to exercise we usually tell everyone “listen to your body”. It will let you know if that activitiy it too much for this moment in time. That does not mean give it up permantly it just means give your body time to heal and try it later. Maybe next season or 6 months from now! Everyone is different and you have to listen to your own body. This is how we all evauluate if we are able to advance to the next level or not! Many of us had to wait to return to work. I am not able to return to work because I have both good and bad days and I could not be dependable yet. I struggle that that but you have to accept what your able to do and be glad you have come so far from the onset of the attack no matter what the dx is. If are are not allowed to progress and see some kind of hope then depression can take a toll and you loose friends that just move on because they can not deal with your illness. It happens. Maybe working with the Coach and let him help at first with chores around the team locker room and ring. Keeping up the teams moral might be good for his soul too! He would be with friends and they would learn to understand where he is in the healing process. Even some work half a day….maybe he could play part of a game? Maybe work with the Coach and see what he can do to test him in a practice? Or a private secession. It is better to find out for yourself where you stand in activities than to have someone set your limits. I am sure you get questioned all the time from your patients why they can not walk or run when they need to follow proceedure and learn to walk and then walk faster first. It takes all muscles, tendons and ligaments to be stable. If one muscle is weaker that is when there could be a failure and injury could result. So from working with your Son and maybe making part of his therapy when he is able to go back on the ice would build up the needed muscles in the ankles and hips and back to make him in tip top shape. Have you talked to your Son what he thinks about this? Maybe there is a time where the rink could let you have a private lesson and you could evaluate him. This would be a good time for him to see how strong or weak he still is and then a day later see how he feels to see if that type of activitiy is too much for him right now? Yes, I would let him return to an activity level he can handle! What does the Doctors say? I need to read more about the TM also, I am telling you what I know about living with GBS! Others might have a different view and over the holidays might be a slow time on the message boards. Be patient with yourself too!
December 31, 2008 at 10:45 pm
Please exccuse my lack of orginization in my reply, I have many thoughts and questions that parallel to yours being that my son just turned 12. Anyway, the fact that NO test gives you any answers does bring confusion to the table. many do not have elevated protein in a spinal or evidence on the ncv/emg. This might also be true since the test and the recovery seemed to be going on at the same time. I guess a virus could be a possibility, but feeling a little icky tight before as you mentioned might not be indicative of the end result. There are rare occurences of people who have cidp that have spontaneous recovery/relapse, without treatment, I have read about that once. Was there an unusual amount of contact at the game preceeding the “injury”? This is a very confusing time, I remember grasping at anything that could explain the symptoms instead of what I suspected. We did cortizole testing, I thought maybe stress, weight, anything. Once we found the right neuro who did the l/p things just moved along.
I guess I am saying if you feel that quitting the sports and activity he loves would crush him, I would exhaust all possibilities and try Mayo or Hopkins if you live near there and mentioned a connection to it. I find the explanation by your current neuro bizzare,(undiscovered not yet known to medicine dx for a spinal injury?) But I personally would not let Kevie do the really physical sports till I had the all clear from someone more experienced. Actually, if it is gbs, hockey may be too much so soon. A hiatus may be in order. I believe that keeping things as normal as possible are at the top of the list. I do everything to keep Kevie happy and normal, even during treatments. I guess once you have the all clear then going back to full sports is in order. Or as I call Kevin, super psycho man mode!! My prayers are with you. Tell your son to stay strong and he will get through this physically and emotionally. Kevie is and your son will too.
Dawn Kevies mom
AnonymousJanuary 1, 2009 at 1:59 am
Nancy, I just have to say this, with tongue in cheek as far as it can go—Can I use her crystal ball too???!!!:p There is NO way she can say this is going to happen again-especially if it is an “injury”. I was very athletic as a young person, I was injured many times, always healed, rehabbed, and continued on with my sports. I lived, breathed and bled sports for most of my life also. That is the biggest thing that I miss in my life now, sports, either playing it myself or with my kids or coaching. The only reason I can think of for her to say that to you is if they are considering this to be gbs and possible cidp-it can come on again and again. As for sports participation-I would go with what your son decides, put all the cards out on the table, good bad etc, and let him think it over and make the call himself. He is at the age where he can help make decisions about his life if he is given the important information that is needed to make an educated decision. He is ultimately the one who will be living his life, either playing sports or not, its not totally his call but mostly his call. Yes you are the parent, and I understand the hard spot you are in, but it could have such a big impact on his life and future, he really should be in on the decision making. That way he can’t totally blame you for ruining his life if he disagrees with your short leash rules etc. If it were my son, I would take it one day at a time, evaluate over and over, have wide open communications between him and you, and let him fly! If it does happen again, it is something that you can deal with, if it never happens again, you and he are that much better off, and he will be living his life. Ok, I need help stepping off my soapbox……:D
Has a neuromuscular dr been involved? For this “injury”? This “injury” still doesn’t answer the bladder involvement issue, or the sensory issue. Acute onset is common, acute recovery without treatment is common in gbs/cidp patients-I’m one of them;) along with sensory, motor and bladder issues.
Hugs and Hopes that your New Year will bring you and your son some much needed Strength, Support and Happiness.
AnonymousJanuary 28, 2009 at 6:15 pm
Hi Everyone, I thought that I would give you all an update. Our records have been at Hopkins for 2 weeks. They have reviewed them but have not gotten back to us yet. I plan to follow up tomorrow or Friday.
He was discharged off of the catheter last week! He has also been dry for the past 6 nights and for 8 of the past 9 nights!
His strength is getting close to normal. He still has some abnormal running.
His doctors think they are seeing signs of “upper motor neuron” damage which would make GBS even more unlikey. They are convince that whatever happened, occured to the spinal cord itself. He has something called a babinski sign that is only seen with damage to the brain or spinal cord in anyone over age 2.
They feel he can return to all sports (including contact) once his spinal cord is fully healed. We are hoping that will be in the next month or so.
He is practicing hockey with his team with the exception of contact drills. He obviously sill can’t plaly in games because of contact. It is driving him nuts but he is actually dealing with it very well most of the time.
We go back to our local neuro in a month and physiatry and urology in early March. I am hoping that after that, we will see them again in May for his next series of MRI’s and we can move forward with our lives. Time will tell.
Of course, we still want the second opinion and will seek somewhere else if Hopkins doesn’t get back with us in the next couple of weeks.
His nuero also called and spoke with a lot of other doctors about doing an angiogram. They all agree that the risk of the test is not worth what they will find out diagnostically. She also told me that none of them agree with her about returning to contact sports. They all think it will be fine when he is 100% as does his physiatrist.
I will keep you all updated even though we now know about 99% it is not GBS. The extra 1% is because his neuro was not convinced it was a babinski sign but his pysiatrist was convinced.
Take care, you all are a great group so I am thankful that I found you all despite the liklihood that he has/had a viral spinal cord related illness.
AnonymousJanuary 29, 2009 at 11:07 am
It could be a thousand things and I would not even start to guess; as you have said it has even the Drs. puzzled with all the equipment the have to run tests. Mama, don’t worry about being too long of a post. You gave us alot of good info so we could maybe help, and you needed all the space you used to tell us his problems. I would be just as concerned as you are when it comes to the little ones. I will have y’all in my prayers. I can just feel your pain and worry in this post.
AnonymousFebruary 22, 2009 at 5:45 pm
Hello Everyone, I will come back with more of an update soon but wanted you all to know that my son is really getting close to 100%. His bladder has fully recovered…no wet nights in almost 4 weeks! He was discharged from PT yesterday and only needs to do sports specific training. He was also fitted for shoe inserts because he now has a mild foot deformity that is effecting his running. It may improve or he may need to wear them but we will take that after everything he has been through.
He had another set of MRI’s last week and we see neuro tomorrow and will see if they showed anything 3 months out that they could not detect initially.
Then, we have an appointment at Johns Hopkins with Dr. Kerr on June 10th. We are hoping that when he reviews his case, we may get some idea of his diagnosis and prognosis. We know it is was not GBS because he developed clonus, a babinski sign and mild tone and this would never happen with GBS.
Thanks for all of your help and support. I think we may be seeing the light at the end of the tunnel. He may even get to play for a little bit of his last two hockey games of the year.
Hope you are all doing well.
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