7 yr old with possible GBS…please HELP!
AnonymousMay 18, 2009 at 10:22 am
My 7 yr old son was rushed to a children’s hospital in Houston in March of ’09 with a sudden paralysis in his legs. It was believed to be GBS so they did a lumbar puncture, EMG, MRI, and lots of blood work. Everything came back normal except he had a slightly elevated SED count. His reflexes were good and his initial neuro exam seemed normal too. His legs started working better on the 2nd day but he said that they hurt badly once he sat down after walking, with assistance, so he had to stand on them to relieve the discomfort?? After day 3 he started having major back spasms, I thought it to be from the LP, but the doctors believed it was related to his other symptoms. He was then given a low dose of Neurontin and progress happened immediately. He could walk without assistance, still a bit wobbly but AMAZING, his back spasms went away for good and the progress was greater day by day. We were released after day 7 with an Rx for physical therapy, Motrin, and Neurontin. The diagnosis was small fiber neuropathy. They said this was a symptom of something bigger but further testing and studies would be necessary. Our local pediatrician still believes it to be some form of GBS.
Some of the blood work done will take several weeks to get the results back. We were told that they are testing for 3 rare diseases and we would find out the results at our next appointment with the pediatric neurologist, which is on May the 26th. They also suggested that they may decide to do a nerve biopsy and/or a study of the small fiber nerves.
After returning home from the hospital Kaden started having problems with his hands falling asleep. The PT evaluation showed normal strength in his hands and arms, weakness in his hips and legs, and a slight limp on his left side. We do PT twice a week and at first his progress was great. He then started having major behavior problems (not wanting to listen to me or his therapist, trouble concentrating on school work, hyperactivity, whining and crying). In the past two weeks he has regressed in PT which strikes concern from me and his therapist. We don’t know if he is really not able to do it or if this is a behavior issue.
I am so confused about what is going on with my child because I don’t know whether to believe he is having problems or faking it for attention. He can be fine one minute and as soon as I ask him to pick up his room or put away his bike all of a sudden he is so tired and his legs hurt. Some days he is fine with no complaints and other days he complains of his tummy hurting, his head hurting, his legs hurting, his back hurting and so on. It is so hard to know the truth with the drama he displays. He was not like this until after being in the hospital for several days. Most weekends he is fine but Mondays are horrible. He visits his dad every other weekend and never, ever has he complained about anything to him. Kaden not talking to his dad about problems is not out of the ordinary; he doesn’t see him often and wants his dad to be proud of him instead of having to hear him complain.
Some of the things going on with Kaden are not in the form of pain though. I’ll ask him if he has had any problems and he’ll make out like it is no big deal or relate it to being tired from doing an activity. For instance: A few weeks ago I picked him up from school, he was in a wonderful mood, and I asked him how his day was. He said he had a great day but something weird happened, when he was running in P.E. he couldn’t feel his legs at all. He said they didn’t hurt but he had trouble stopping. And on another day he said that his legs felt real heavy while he was running but it was probably from his legs getting tired.
I talked with Kaden’s teacher last week and she said that she would like to have a meeting with me about his handwriting and problems he is having gripping his pencil. She said that sometimes he puts his pencil down and rubs his hands like they are asleep or something. Kaden doesn’t complain about anything at school, but he is a quiet and well mannered child while he is there.
A few times since all of this has happened Kaden has made remarks about being able to see 4 eyes when he looks at me and trouble hearing the T.V. I don’t know if this is related to anything or just him being a kid.
I have done research on the symptoms of CIDP and am very concerned!! I have also done research on Neurontin in children and found that is can cause behavioral side effects along with problems concentrating, vision problems, nausea, headaches, numbness in the hands and feet, weakness on one side of the body, and so on…
I am so confused and don’t know what to do or think!! My husband, along with Kaden’s dad, think all of this is behavior related and I am just crazy!!! Am I crazy? Do I have reason for concern? What should I do next? Someone please help me with advice and/or information!
May 18, 2009 at 2:09 pm
Please call me, my # is 630-745-7926. If it does not come up on this post, private message me and we can exchange numbers. Conversion disorder or “your kid is psycho” is what Kevin was dx with and within 2 more weeks he was paralyzed. the description you give is my son to a tee. The acting out in my opinion is the child being scared and confused and being frustrated with the situation. Kevin did not act out at school or with the pt or docs, but he would to me. Once we had a concrete dx, he was ok behaviorally. L/P’s do not always show an elevation. Usually something would be picked up in the ncv/emg, unless it was too early. About the nerve biopsy or small fiber, those are very accurate but the nerve biopsy does come with some pain and perhaps residual pain at the site. On the other hand if it is the only way to get a dx and have ivig started, you may have no choice. The writing thing is dead on to Kevin’s symptoms, the grip, heavy legs etc. Be watchful, things creep up quickly. Besides conversion disorder (psycho) we also had a dx of charcot marie tooth, a form of MD. The results of the ncv/emg present simalarly in cmt as gbs/cidp. since you have good ncv/emg results, I would say that it is a pretty good chance that is not your dx. That is probably one of the tests they sent away for. Please call and we can talk at length. I really do understand what you are going through.
Dawn Kevies mom
May 18, 2009 at 2:12 pm
Is he still on the neurotnin, or was it that one time in the hospital? If it is cidp, things will get worse unless you start ivig. Be watchful and go back to the doc to establish a dx as as possible.
Dawn Kevies mom
AnonymousMay 18, 2009 at 4:04 pm
One thing I have noticed over my years of raising my children. When they got sick they would get rather whiny in behavior which is something I think many children do. I would persue getting a diagnoses for him for this stuff could be progressing and making him worse. Giving him Gabapentin and no other treatment is only easing the nerve damage pain and not healing what is going on with him. Not sure what hospital you too him too either but I would be taking him to an MDA Clinic with top notch specialist to see if they can figure out what is happening! I will keep your son in my prayers and hope all goes well with him. Many childhood diseases including heriditary ones can cause small fiber neuropathy! Some treatable and some not! Good luck and God Bless!
AnonymousMay 18, 2009 at 4:48 pm
Dawn: Thank you so much for talking to me earlier. You made me feel like I am doing the right thing with Kaden. I will keep you posted and call if I have any other questions.
Linda: I am taking him to a Children’s Hospital in Houston with state of the art neuro specialists on his case. It has also been mentioned that they are requesting Kaden be included in a study going on at John Hopkins. I am so on top of things and although my research has be concerned, I am glad that I know what we could be facing.
I do appreciate all the support. I will keep you all posted on any news or happenings.
AnonymousMay 20, 2009 at 9:40 am
Kaden had a horrible Monday: He complained of his legs hurting, his hip hurting, and his walk was a bit off.
PT on Tuesday: Some of the exercises he can do fine but he is showing some weakness in muscles that he had full strength in a couple of weeks ago. He didn’t complain of anything except for his hip.
After talking with his physical therapist I decided to call our local pediatrician to give him a heads up on what all is going on with Kaden. I was able to speak to the nurse and she is going to talk to the doctor and call me this morning. I am thinking that maybe they are going to try to get him to the neurologist before our regular appointment scheduled for next Tuesday.
I just don’t know and can’t understand what is going on with my child. I think it may be a good idea to take him off of the neuronin (approved by the dr) to see if we can better understand what is happening without all of the behavior issues. I also think that some of his problems (hands and feet falling asleep and fatigue) may dimish once he is off of it. It could be an important factor in truly having a picture of how he feels. Can I please get some advise on this??
I am also curious to know what the signs and symptoms are of a GBS relapse. Do they come on rapidly or slowly over time? Since Kaden has new issues here lately (his back and hips hurting along with new weakness) could this be considered as having progressive symptoms of CIDP?
I am still so confused!! I don’t know if he is having classic symptoms of CIDP or if alot of his problems are dramatized due to the behavioral side-effects from taking neurontin.
Any and all help/advise/support will be greatly valued and appreciated!!
Thanks to you all, Jennifer.
AnonymousMay 20, 2009 at 9:48 am
I forgot to add that as of this morning his walk looks completely normal. No strange movements or limps. Big difference from Monday!! How can this be? Is this typical of anything? If he has CIDP should his gait be off for a longer period of time? Can it be fine one day and not the next?
Thanks again to you all!
The doctor just called to let me know that our appointment to the pedi neuro has been moved to this Friday at noon!! Yippee! They are going to call me back on the neurontin issue.
AnonymousMay 20, 2009 at 1:54 pm
Hi Jennifer! What Kaden has is definitely not CIDP or GBS. He has some kind of rare auto-immune disorder going on but that could be several different things. Easpecially with children! Something genetic or something that is not as bad and might be able to be treated. Systemic Lupus can cause small fiber neuropathies but so can alot of other diseases. It is good that you got that appt for Friday! With him complaining of joint pain and headaches. Perhaps he has something Rheumatalogical going on. With Children it is very hard diagnosing. But one thing you can go is keep a diary of everything he complains about. The weather that day, how well he did how well he didn’t. Check for low grade fevers every day and see how that is! Anything unusual you write it down and let the doctors see what you have seen. Also get them to check his B-12 and Vitamin D levels also. Has he been tested for Lymes Disease also? But by what you have described does not sound anything like GBS or CIDP. I think this is something either genetic or a rare disease that some children get. I will keep you in my prayers and hope they can figure out the problem. John Hopkins and The Childrens Hospital in Philadelphia are both really fantastic Hospitals. I rate the Childrens Hospital in Philadelphia to be one on the top notch places to go if you can’t get a diagnoses. University of PA Hospital is right beside them and both hospitals have great doctors that work together even with the children. Wishing you the best of luck! But no matter what, you keep a daily log of his activities and complaints. Hugs
AnonymousMay 21, 2009 at 1:45 am
Thanks for your post Linda. Could you explain the reasons you don’t think this to be GBS or CIPD? I am wanting to have as much information as I possibly can before meeting with the doctors. I have done lots of research but there is so much that is not out there to find.
AnonymousMay 21, 2009 at 1:51 am
Dr. Ian Butler is Kaden’s pediactric neurologist. He went to law school in Australia, residency in the UK and London, and he also was a part of a neurology team at John Hopkins. He is a professor at the University of Texas med school in Houston and head of the pediactric neurology department at Herman Children’s Hospital in Houston. He has been cited in many books and articles for his participation and research on neuropathies including GBS and CIPD. I do believe we have the best of the best. I will let you all know how things go Friday. Thanks for all of your prayers. This is a very scary time in our lives and I don’t know what I would do without them.
AnonymousMay 21, 2009 at 9:27 am
Hi Jennifer! His symptoms that you have mentioned just don’t seem to be to me something of CIDP or GBS. He has a Small Fiber Neuropathy also which normally GBS attacks motor nerves and not small fiber nerves. CIDP because there are so many varients that is quite possible the CIDP but still his symptoms just don’t seem to corelate. Don’t get me wrong! He definitely has something wrong and it could be a number of things. Small fiber neuropathies can be seen in a number of diseases. Thyroid, Diabetes, Amyloidoysis, Lupus. Thyroid especially can cause behavoir problems and small fiber neuropathy. Lymes Disease. Just a small number here! Celiac Disease too! Celiac disease can effect children really bad. Him having a high Sed Rate is indicting inflamation somewhere. I think your son has something more auto immune or genetic. Children get diseases too! We don’t want to think that with our children but they get sick just like adults do.
Your best research that I could advise is you reading about Small Fiber Neuropathies.Going into your search engine on the computer and typing in Small Fiber Neuropathy. Getting all of Kadens symptoms gathered and everything you see wrong. Not only his behavoir for that could be because he is not feeling good and acting out because of it. He does not understand and realize the symptoms so you will have to ask and watch his symptoms. His bowel movements, taking his temp, even checking his skin for rash, small itchy bumps you name it! Coloring of the skin. Check for that too especially in cold water. If he gets a purple spotchy skin that looks like spider veins that is Livedo Reticularis! Keep me posted on your son and his labs. You may not get an answer from the neurologist and may end up having to take him to several specialist to get checked out. Also get a complete Thyroid Panel on him to rule that out! Let the Neuro handle things first and then go from there. You may get a quick diagnoses and then you may have a rough road trying to get a diagnoses. Some small fiber neuropathies are treated with IVIG or Plasamephersis and some are no treatment at all because of unknown etology! I feel for you about this! I really do! Best thing right now is to let this Neuro handle it first. No answers then get the records and go to another specialist Rheumatologist, Endrocrine doctor Gastrologist getting tested for Celiac and even an allergist! I hope the Neuro though will have the answers for you and you don’t end up having to see all these doctors. But you might end up having no choice. But let one doctor at a time handle his case. Good luck on Kaden! I will keep him in my prayers! Hugs
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