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
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