Lisa1971 Posted April 14, 2009 Report Share Posted April 14, 2009 Yesterday my son was able to meet with the Neurologist for the first time...I was apprehensive and expecting to hit the same walls as with my Ped...and I was so glad to be wrong... Not only does he acknowledge PANDAS he completely understands the frustration surrounding its controversy as a diagnosis and lack of any real cure. He was soft spoken and not at all arrogant and he told me everything I already had learned from here and other research...we talked like grown ups and he took the time to bring in his laptop and watch the videos I brought with me while we were still there and saw my minute by minute documentaion as helpful not obsessive. When I told him the Ped was ignoring all of this he told me not to worry about the ped...that he was going to take it from here and provide everything Alex and I will need...including triage is necessary and emergency visits if an uncontrollable episode should arise... He immediately started Alex on a 4 month cycle of Omnicef...and ordered a slew of bloodwork...to eliminate some things and test for others including the ASO and DNASE...he is also sending a sample to a special lab in Florida he said has the capability to test specifically for something PANDAS related...and for the enzyme in the blood that would make IVIG a possible treatment for him down the road. He has not concluded PANDAS definitely at this point obviously he needs to review the bloodwork...and ordered an MRI which he said will probably not show anything conclusive but is a good starting point to see if there is any abnormalalities. He did say there could be other things causing the same symptoms and he was going to investigate all of them. And he set up a follow up appointment for 4 weeks from now... He also said...of all the supplements to give ...the Omega 3 is the most important and beneficial...he also said that cognitive behavioral therapy was also a crucial treatment in this also...he mentioned some meds to control the tics but only suggested those in cases where the tics were becoming painful physcially or emotionally to the child as he said they don't cure anything...just mask the symptom...luckily Alex isn't bothered by them at this point. His name is James E. Nelson and he is part of Presbyterian Pediatric Neurology...they have offices in Charlotte, Matthews (where I went) and Salisbury. There are a few doctors in the practice. I think I'm still in shock...but I feel vindicated and finally like I have a direction...so aside for the 10 vials of blood drawn from my kid...yesterday was a very good day... Link to comment Share on other sites More sharing options...
lss Posted April 14, 2009 Report Share Posted April 14, 2009 Yesterday my son was able to meet with the Neurologist for the first time...I was apprehensive and expecting to hit the same walls as with my Ped...and I was so glad to be wrong... Not only does he acknowledge PANDAS he completely understands the frustration surrounding its controversy as a diagnosis and lack of any real cure. He was soft spoken and not at all arrogant and he told me everything I already had learned from here and other research...we talked like grown ups and he took the time to bring in his laptop and watch the videos I brought with me while we were still there and saw my minute by minute documentaion as helpful not obsessive. When I told him the Ped was ignoring all of this he told me not to worry about the ped...that he was going to take it from here and provide everything Alex and I will need...including triage is necessary and emergency visits if an uncontrollable episode should arise... He immediately started Alex on a 4 month cycle of Omnicef...and ordered a slew of bloodwork...to eliminate some things and test for others including the ASO and DNASE...he is also sending a sample to a special lab in Florida he said has the capability to test specifically for something PANDAS related...and for the enzyme in the blood that would make IVIG a possible treatment for him down the road. He has not concluded PANDAS definitely at this point obviously he needs to review the bloodwork...and ordered an MRI which he said will probably not show anything conclusive but is a good starting point to see if there is any abnormalalities. He did say there could be other things causing the same symptoms and he was going to investigate all of them. And he set up a follow up appointment for 4 weeks from now... He also said...of all the supplements to give ...the Omega 3 is the most important and beneficial...he also said that cognitive behavioral therapy was also a crucial treatment in this also...he mentioned some meds to control the tics but only suggested those in cases where the tics were becoming painful physcially or emotionally to the child as he said they don't cure anything...just mask the symptom...luckily Alex isn't bothered by them at this point. His name is James E. Nelson and he is part of Presbyterian Pediatric Neurology...they have offices in Charlotte, Matthews (where I went) and Salisbury. There are a few doctors in the practice. I think I'm still in shock...but I feel vindicated and finally like I have a direction...so aside for the 10 vials of blood drawn from my kid...yesterday was a very good day... Lisa, So happy to hear that your child is getting the help he needs and from a neurologist! He sounds like a doctor willing to listen and thoroughly investigate all symptoms. Do you happen to know the name of the lab in Florida that they were sending blood work to? Keep us posted on your childs progress with this doctor, it sounds very promising. Linda Link to comment Share on other sites More sharing options...
Dedee Posted April 14, 2009 Report Share Posted April 14, 2009 Lisa, I am so glad to read such an up lifting post. How wonderful to have a physician who is so supportive and actually up to date on PANDAS. As you say, it is so validating to have someone who believes you and understands your child and comprehends what you have been experiencing. When we finally saw Dr. Murphy (after years of wrong diagnosis), I was literally on cloud nine for weeks. Even though my son hadn't been "cured", it was the greatest relief to know that he was going to be ok because we now had a doctor who understood. We had been fighting for that for years. I am so encouraged to hear that more physicians are being educated and hopefully fewer children will suffer in the future. Good luck to you and your family. Keep us updated. Dedee Link to comment Share on other sites More sharing options...
Indigo Posted April 15, 2009 Report Share Posted April 15, 2009 That is so wonderful! It is so great when we find doctors who are working for our children and who are supporting this journey!! Link to comment Share on other sites More sharing options...
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