Suzan Posted August 31, 2009 Report Share Posted August 31, 2009 Hi everyone... I took dd8 to see dd6's neurologist today in the hopes that he'd have some ideas of what is going on with her. He was very interested in Dr. Cunningham's test and research paper and agreed based on dd's clinical presentation that she does have PANDAS. He also agreed that it seems like there is something else going on with her immune system. He recommended she start taking Origin of Life broad spectrum multi vitamin right away. Then we took a bunch of blood (well tried anyway, she was stuck 4 times and they could not get it. Talk about starting up fears of giving blood so we go back tomorrow to try again). He ordered the Anti-dnase and ASO titers. Not sure why since he believes she has PANDAS anyway. Anyone know why this would be helpful now? Also, Copper, Zinc, B2, B6, B12, Ferritin (iron stores), CRP and HHV6, HSV1 and HSV2 which are apparently virus titers. He said he believes she's also having an immune reaction to these viruses or something like that. He's using a diagnosis code for ADHD. I'm not totally sure where he's going ultimately with all of this. But I thought I'd post what happened with us today in case it's helpful or in case anyone has any comments on what he's doing. He agreed with long term antibiotics for her. We talk again in a couple of weeks after the results are in. He is not an immunologist so we may end up getting referred somewhere else if it's above what he can do for us but I am feeling like I have some direction again and I don't feel quite so lost. Susan Link to comment Share on other sites More sharing options...
Suzan Posted August 31, 2009 Author Report Share Posted August 31, 2009 of course now that I've looked up HSV virus I'm a little freaked that it is herpes but I know it does not have to be sexually transmitted... but still stress producing info.... Link to comment Share on other sites More sharing options...
dcmom Posted August 31, 2009 Report Share Posted August 31, 2009 Hi Suzan- so sorry about the blood draw. Definately hydrate her before you try again, and consider the numbing creme (emla?) if you haven't, it really helps. One of our neurologists did titers, my dd's were normal, we already had documented strep, I don't know why he did either & I won't have them done again. I think doctors (even if they are pandas believers) prefer to have numbers backing them up. Good luck, keep us posted. Link to comment Share on other sites More sharing options...
colleenrn Posted August 31, 2009 Report Share Posted August 31, 2009 Hi Suzan- Defintitely agree that emla cream works great to numb the area prior to a blood draw. You just need a prescription and put it on liberally. Also, another tip that really helps with a blood draw, but you would have to do it prior to putting on the emla cream, is to take a warm wash cloth and put it on the area where they will do the blood draw. Do it for 15-30 mins. prior to blod draw and when the warm cloth starts to cool, just warm it up again. It helps to dilate the blood vessels and makes the blood draw much easier. Just make sure that if the ASO and/or antiDNase B come back normal, the doc does not rule out PANDAS based on that. You can have strep, esp. PANDAS kids, and have normal strep titers. Looks like he is just covering the bases, which is good, with the virus checks. Anyone can be exposed to herpes virus (a kiss from grandma or anyone who has ever has a herpes cold sore is all it takes). What prophylactic antibiotic is he prescribing? Good luck! Colleen Link to comment Share on other sites More sharing options...
Suzan Posted September 1, 2009 Author Report Share Posted September 1, 2009 Looks like he is just covering the bases, which is good, with the virus checks. Anyone can be exposed to herpes virus (a kiss from grandma or anyone who has ever has a herpes cold sore is all it takes). What prophylactic antibiotic is he prescribing? Ped has us on zith, 500 mg weekly so he's agreeing that this is OK. I guess we will just continue until further notice. We discussed her history and current symptoms and she gets canker sores with every cold, episode, etc. I know this was one thing that got him on the new titer checks. I think we got distracted and overlooked some of his ideas but I hope not, especially since this draw is proving to be difficult. I think I'll call tomorrow to be sure we got everything. Susan Link to comment Share on other sites More sharing options...
Suzan Posted September 1, 2009 Author Report Share Posted September 1, 2009 The blood draw was horrible. I think she will be traumatized forever now about this. She swears she will never willingly walk into a lab. They could not get enough for everything but we got most of it. I forgot they also were checking her vitamin A and D and IgG subclasses (those were missed in her last immunology tests). They could not get the Vit B2 or 6. Hopefully the doctor will say he doesn't need it. She's been stuck 6 times in the past 24 hours I sincerely hope these show something that ends up being helpful. Susan Link to comment Share on other sites More sharing options...
greenmommy Posted September 2, 2009 Report Share Posted September 2, 2009 Yes - we had normal titers with my son this time...last time (2 years ago) they were raised but not this time...started me on the wrong path of what was going on with my son...but 1 month later I revisited the PANDAS stuff - 4 days of steriods and antibiotics - 85% better A Link to comment Share on other sites More sharing options...
T_Mom Posted September 2, 2009 Report Share Posted September 2, 2009 Yes - we had normal titers with my son this time...last time (2 years ago) they were raised but not this time...started me on the wrong path of what was going on with my son...but 1 month later I revisited the PANDAS stuff - 4 days of steriods and antibiotics - 85% better A That is fantastic!! I am so happy for you--will be hoping it only gets better now from here. All the best, TMom Link to comment Share on other sites More sharing options...
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