momma2sethandjiji

Thanks for your reply. Regarding your experience in/around Nashville, do you have any experience with Dr. Daniel Kalb in Cool Springs? If so, what is your opinion. At Vandy, I never even used the term PANS/PANDAS or mentioned my having the consult with Dr. K, as at that point the locals were leaning toward Wilson's and honestly I was still ignorant on the whole disorder myself. Once he ruled Wilson's out (in about five seconds), he was very quick to say there is a new "buzz" about a disorder called PANDAS. He informed me that if I had read about it, to file it away -- that his speciality does not believe it exists. I was thinking have you seen the Saving Sammy video or read the book??? I mean, really. Why argue when all of these parents know their children and why argue when the medical community knows rheumatic fever and the other strep induced illnesses occur. I don't get it.

Me again From personal experience, could people please advise me of what they think each well known doctor is best at. For instance, like so and so is known best for ruling out this and so and so is known best for investigating any and all triggers, which doctor will fax orders from afar after you have personally seen them, which doctor seems to be most up to date on treatments, who is hard to get into, etc. At this point, I am not interested in treating PANDAS so to speak but interested in being convinced if it IS IN FACT PANDAS and/or ruling out anything else. I would like an explanation on copper issues and if they have some connection to autoimmune disease. I would like someone who is willing to order the Cunninham Panel and if that is negative guide me on where I need to go for the abnormal mineral levels. At this point, I am willing to travel wherever. We have literally thrown thousands of dollars away locally and at "the greatest" Vanderbilt in Nashville. That was actually my worst experience. I almost feel like I have paid dozens of doctors to treat me like I am ignorant or have Munchhausen (sp) syndrome. I have even had a pedi ask me if I "wanted something to be wrong". Well, of course not...I want someone who can use their medical degree and tell me what is wrong with my child instead of trying to tell me he has always had OCD and tics I just never noticed it. I know it will be costly, but at this point we will do whatever it takes as most parents feel at some point. I think just going to the best will actually save money even if it means spending traveling/staying costs a few trips, and I need an idea of which doctor does what to give me an idea. Thanks again so much

Do they have to be actively having symptoms for anything to be abnormal?

Thanks for all responses. No we have not tested for anything other than the usual things Dr. K orders in the beginning. Don't quote me, but I believe a anti-strep titer, streptozyme, Anti DNAse. Then, the regular pedi did a CMP with a c-reactive protein that he said would identify inflammation. We also have never been tested or treated for parasites.

I have posted twice before. My son was clinically dx'ed with PANDAS by Dr. K. following his steroid burst/antibiotic trial even though his symptoms worsened with each of the meds. His primary symptoms following mystery illness were hoarding trash, muscle pains, headaches, palilia (repeat whispering tic) and lethargy. All disappeared completely eventually but the repeat whispering tic which continues frequently to this day. Now, with a slightly runny nose and improvements in diet (for entire family, nothing to do with any symptoms), he has started in with a grunting tic. It has, of course, got me concerned yet again. We have opted for no further treatments in the past, as he is not severe. However, we don't want to be overlooking something else considering he has other odd symptoms: 1. During this period of PANDAS symptoms following an extended undiagnosed sickness, he developed brown melanin spots in the white of his eyes. Dr K recommended local copper checks. Did that, and both his serum and urine copper were low. Ceruloplasmin was normal. Saw a neuro at Dr. K's recommendation who ruled out Wilson's disease and told us to see our pedi over copper concerns. Pedi is not concerned even though I read several articles on mineral deficiencies causing neuro issues. Eye doctor said half the population has these brown spots from sun exposure. My child is 7 and don't get in the sun that often. Pedi did run a battery of liver/kidney, CBC, c-reactive protein and allergy tests. All were normal, so he told me to just accept he has tics and quit worrying. No explanation as to why my child was normal before this sickness that made him start hoarding and hiding things in his underwear out of parking lots, having leg aches so bad in the days following he has to be packed, etc. Neuro says he has always had tics/OCD but I never noticed until the sickness and shouldn't worry. Grrrrr 2. Iron has been low on several occasions. Once very low. He is a green eater, beef eater AND takes a multivitamin with iron nightly since he was 2 years old. On recheck, upon my concern of some mineral issue, iron was way over normal with absolutely no changes in diet or vitamins only a few weeks following initial very low iron??? He refused to check copper saying he had never checked a child's copper in his years as a pedi (the previous coppers came from a walk in clinic and my begging since Dr. K recommened - seems they all have trouble doing what he asks of me) So my questions: Is the Cunningham Panel definitive? I don't want to be sitting back and ignoring something else that could possibly be going wrong causing issues with his minerals or the issues he is having a result of the mineral issues if that makes sense. If it could for certain rule it out or diagnose, I think I could sleep better. If I paid a visit to Dr. K (whom I love and trust completely), is there any autoimmune testing etc outside of Cunningham he could order to ensure nothing else is plaguing my child. I do feel it is autoimmune in nature but don't want to ignore the minerals. Will he investigate triggers, etc? I would be willing to spend the week or whatever it took. Also are there any lab type places where I do not have to have any sort of orders from a physician. If so, are there any tests anyone could recommend me doing to get some clarity or rule anything else out? I have thrown so much money away locally and feel defeated and made to feel like I am being a hyperchondriac. Thanks in advance for reading.

The test ordered was mycoplasma AB. Didn't see the AB part before. Results negative. I am assuming AB is antibodies. There is no numerical value. Thanks!

Hi, After doing some research based on responses to my previous posts, I carried my son in to a new doctor and mentioned the mycoplasma issue. He has been infected with "pneumonia" on several occasions since about 3 years old. I do remember hearing the word mycoplasma several times. Anyways, I do feel this doctor listened. I feel very blessed. She admitted she was clueless about PANS/PANDAS, but did read my NIMH literature and has no problem doing whatever Dr. K and/or any specialist suggests. She ran a mycoplasma lab. It was simply ordered "mycoplasma" and came back as negative. There were no numbers involved. Is this an accurate test to determine if he has a chronic infection? I saw more in depth things like "IG something" tests. I know it is probably out of her league and her too, but we are working on referrals. She is suggesting Rheumatology at Vanderbilt. Opinions on that specialty/hospital?

I am new to this diagnosis myself. My son was clinically diagnosed PANDAS by Dr. K in Chicago via the phone consult. Our problem started back in January following a viral illness that "turned into" mycoplasma. Once getting over those two illnesses, he basically became pale, lethargic, dark under the eyes and just not himself. This all started about two weeks following the end of antibiotics for the mycoplasma. During that window, he seemed fine. Following the onset of those symptoms, he had an episode where he woke up in severe leg pain. His was more behind his knee. He could not even walk up the steps. Whether it was "PANDAS", part of the autoimmune process or what I am not sure, but I do know it has something to do with whatever is plaguing him following sicknesses. I have no doubts. Thankfully, we have never had another episode like that but with his most recent sickness we have started in with headaches, minor eye tics and OCD. I don't have much to go on, but yes we had leg pain and Dr. K told me 80% (don't quote me on the percentage - can't find my notes) of patients have some sort of physical pain with PANDAS. Saying that, someone on here told me it is very common to have leg pain with Lymes as well.

Well, here I am again. I am glad I journal all of this, or I would confuse myself. A review - 7 yo ds, Seth, was diagnosed by Dr. K with PANDAS about a month ago. He recommended 14 days of Aug and a 5 day steroid burst starting the 8th day. I had posted about Seth having an exacerbation on the second day of Augmentin. He seemed to improve some from that about the sixth day in. Then, we started the burst, and again he got worse again with only repeat whispering. We saw zero signs of improvement following steroids. He basically remained "baseline" worse throughout the course of the meds. We started the 14 day observation last Friday. Until yesterday after picking him up from school, he remained worse than before starting the meds including some new extreme behavior at his sister's birthday party. Yesterday, he still had some of the repeat whispering but nothing like since the exacerbation and perhaps even a little less than before beginning the meds. He was much better than from just that morning. Same today thus far. That would be five days past the last day of Augmentin and seven days past the last day of steroids. Is it possible that the meds are just now taking effect? Thank you all again so much. Our problems are nowhere near as extreme as some of these clinical cases I have read, but man this whole process can leave the parents feeling so alone especially when you are miles and miles from a knowledgeable physician.

Gosh. I guess I will need to get it checked. Thankfully, we have an infectious disease specialist nearby.

Thanks so much for the info. Makes complete sense.

Sorry to be a board hog. I am trying so hard to get a grasp on this, so I can be armored for our next local doctor appointment. I have been thinking back. My son's first episode followed pneumonia. This was a bacterial pneumonia, and his symptoms following that were more physical. However, he was diagnosed with a virus shortly before the pneumonia which they thought induced the pneumonia. That leaves me asking that perhaps the preceding virus induced the leg pain, lethargic like symptoms versus the pneumonia. I say that because he had two episodes of confirmed strep following that over the spring and NEVER had any sort of exacerbation. In Sept, he had another "mystery virus", and the OCD symptoms, headache and eye tics followed this starting almost overnight while we are on our family vacation. If his trigger is viral, would/could that explain why he is not responding to the two week trial of Augmentin. I know that does not necessarily explain his worsening of repeat whispering or the worsening after the initiation of the steroid burst. Asking, again, because we are now on day 4 of observation, and nothing is better but still worse from the point of exacerbation when initiating both meds. First downward turn started day 2 of antibiotics and then again day 2 of steroid burst. It has remained at "that" baseline since, again on day 4 of observation following 14 days of Augmentin. Thanks again. I hope and pray that I can find a doctor whom will know the answers to my questions and help us through this. I hate the uncertainty of this whole process.

I have noticed that exciting situations make my son wilder and his symptoms flare or I feel that way. Once was a fall carnival and today a birthday party. Is this common? We are in the two week observation following meds which made him worse in general, but some of the exacerbation were before meds. Thanks

No, we have never pursued Lymes, as he has never had a tick bite or any other suspicious insect bite besides a very few mosquito bites. His episodes have actually both followed illness. His first episode followed mycoplasma. That was the one with the more physical symptoms. This followed a "mystery" virus. This onset as OCD and eye flinching tics. I realize there is the possibility he could've had a tick bite that went unnoticed, but do you think that that would cause these symptoms to follow two different sicknesses that were eight months apart? His first onset was this January when I am sure he wouldn't have had a tick bite as we have relatively cold winters here. I guess what I am asking is can those symptoms perhaps be delayed and flared up by sickness? Thanks for the responses

Hello, My son is now on the first day of his two week observation period following 14 days of Augmentin and a five day steroid burst. Throughout the actual course of meds, he only got worse which some of you mentioned herxing in my last post. It makes complete sense, but would he still be herxing. I ask because on day one of observation, there is no improvement thus far, well actually worse. Is it the norm to see improvement if this is PANDAS since we are in the observation as ordered by Dr. K? I was thinking that was the purpose to further conclude PANDAS. He was repeat whispering more this morning than ever. The lack of improvement is so stress inducing. One thing I know is that whatever is happening to him is the direct result of sickness. Both of our episodes start up within the following week of a sickness. Are there any other type autoimmune disease that would induce the OCD? Following the first episode, again, he had more physical symptoms like leg pain, lethargy, darkness under eyes.

Would the Herx effect exacerbate again with the intro of steroids as well, perhaps because it is doing something to the inflammation on the brain?

Let me say, first, thank you so much for the responses to my previous posts back in mid October. Long story short, my DS7 had the sudden onset of headaches, hoarding, repeat whispering, etc following a mystery illness in mid Sept. He also had an episode back in January following walking pneumonia but had more physical symptoms then like muscle aches, paleness, dark under eyes, etc. He did have eye grimacing at that time as well. It was all written off as low iron which I knew was ridiculous as that didn't explain eye grimacing and an episode of severe leg pain. Basically, I took advice from all and had a phone consult with Dr. K. He instructed me to get all labs drawn from January forward. Did that and thankfully so. Not one of his labs were "normal" as I had been told. There were things off all over the place, not just iron. Some of the labs were drawn one month post sickness in January. Even his creatinine was off in some. Dr. K attributed the abnormal labs to perhaps his body fighting the antibody versus the actual illness (the actual illness is probably the theory our pedi had since she claimed them to be normal but again some were drawn one month post sickness). Clinically, Dr. K diagnosed my son with PANDAS. Titers were drawn and all were normal. My son is now on the 14 days of Augmentin and just finished the five day steroid burst. This leaves me with questions. On the second day of his Augmentin, his repeat whispering intensified ALOT. It got better on about day 6 but then when we began the steroid burst (day 8 of abx) it got worse and has remained way worse than when we started the regimen. Is this normal? I can't get much out of Dr. K when I ask questions besides "finish the plan". Obviously, he is not concerned so I probably shouldn't be but I do worry that perhaps these episodes are brought on by an intolerance to the meds versus an autoimmune attack after a sickness. Someone on here had mentioned candida, and I googled it. It seems it can be linked to these symptoms as well, but wouldn't he exhibit signs of a yeast issue, physically? Like thrush or such or can it be strictly an intestinal problem? I know my best bet is to "finish the plan" and do my observations for two weeks following last day of abx and go from there. Of course, we have had the usual resistance from local doctors/nurses. I had trouble even getting the 14 days of antibiotics which worries me about dealing with future episodes, as Dr. K's plan is to treat with 14 days of Aug until treatment stops working and then cure. Of course treatment would be local. Are there any type of specialist who seem to understand this better? Like would an immunologist be more understanding, or are psychiatrist better?. I fear psychiatrist not understanding the underlying cause and like another newbie posted fear them wanting to treat symptoms versus etiology. Again, questions in short: Is it normal for symptoms to exacerbate following the start of abx and then again when kicking in the steroid burst? Would candida present more physical signs, like thrush, or can it be strictly an intestinal issue? What specialist do you recommend to see if you can't get the general practitioner to hear you out? Thanks so much and sorry to ramble. This is all so confusing and scary to me. We are however thankful that if this is PANDAS that the information is out there and we do not have to suffer to the extent so many people have. I am very thankful for sites like these and the internet or I would still be banging my head on a brick wall to get someone to listen that something is happening to my child after sicknesses.

Hi, My name is Michelle, and I am mom to a 7 year old little boy who has a history since January of this year of having issues after sicknesses. Sorry this will be long, but I am wanting any and all advice. In December of last year, my little boy was diagnosed with walking pneumonia. He did fine with the actual pneumonia and was cleared on repeat chest x-ray one month after diagnosis. However, following the illness, he seemed to start deteriorating health wise. He was pale in color, dark under the eyes and lethargic acting off and on. I also noticed him "blinking" his eyes alot--almost a grimace. I carried him to his pediatrician, as my intuition told me he had something "autoimmune" going on related to the sickness. I had never heard of this disorder or any other in specific, but just felt his body was attacking itself for lack of better words. I told her my worries and even told her his teacher had emailed concerned with his "lethargic" behavior and color. Our regular pedi ran a CBC. WBC was low and eosinophils high. She chalked it off as iron deficiency and told me to give him a vitamin at night. I already do that and told her that, and she told me to give him a half more. I left feeling bullied, as he eats well. Of course, I left and googled high eosinophils which have nothing to do with nutrition. The very next morning, he woke up crying with pain in his legs. It was so extensive his daddy had to pack him up the stairs. Of course, (to vent) I was furious knowing lack of iron was not causing this. We gave him Ibuprofen and warm compresses--knowing if we carried him in-we would get the "growing pain" diagnosis in our small town. The pain got better and he was able to walk within a few hours. The pain did persist through the next few weeks but never to the point of debilitating again. In the mean time, another employee of the school confronted me about his color. Obviously, already worried and getting another validation I was not a crazy mom, I carried him to another pedi. She ran a CBC again, and all was well at this point. During the spring, he was diagnosed with Scarlett fever. He did fine with meds and got over it fine. In May, he was diagnosed with strep. Again, did fine with no problems. However, during this entire time frame, I have never felt his color or darkness under his eyes have gotten back to normal for any substantial period. He had no more illness until three weeks ago. At that time, he got a sickness where he ran fever for 10 full days. It was diagnosed as bronchitis. He went through two different antibiotics before getting any relief. No cultures, x-rays or swabs of any sort were done. However, I insisted they run blood work. CBC and iron was ran, and the only thing that came out was that his actual IRON was low this time. Again, he takes a vitamin and a half and eats decent in my opinion. Following this illness, two weeks ago, just sudden, I notice him starting to hoard things like straw papers, tags off of clothing, wrappers, etc. I noticed him even getting in the trash and taking out disgusting food wrappers and such. I wrote it off as him adding it to his "play store supply". While on vacation last week, however, it became apparent there was more to this. He was picking things up out of parking lots, including ketchup wrappers, cigarette butts, etc. We scolded him at first UNTIL one night we are getting ready for bed and some dirty q-tips and other things from random places fall out of his underwear where he was hiding them. He was embarrassed and you could tell he couldn't understand why he had done it. During this same time frame of this starting up, he has started having headaches off and on as well as whispering in a repeat voice alot of the statements he makes. For instance, he will say "mom, look at that tree" and then in a whisper say it again and possibly another time in a whisper. I have noticed the "flinching" of his eyes again as well. The hoarding, to date, has backed off, BUT we are back in school and not much opportunity. Now, for my questions. 1. Will it be possible to diagnose this with his symptoms being so inconsistent? The most consistent thing we have to go on is the repetition whispering 2. What are different ways of diagnosing? 3. Do you think the headaches and previous leg aches are related? 4. When I talk to a doctor, should I go in detail all the way back to the first round of blood work discrepancies, eye flinching and leg pain? 5. Do you think the low iron is related? 6. I am in Western Ky, closer to Louisville, Nashville and Memphis. Any doctor suggestions, or should I just contact Dr. Kovacevic who is not that far in reality. Also, since feeling bullied after my regular pedi dismissing my concerns earlier this year, I have flip flopped around and still not found any one I am comfortable with going to regularly which makes me so insecure as I have went to her with both children for seven years. Having had an autoimmune illness myself that kept being diagnosed as postpartum depression, I KNOW first hand that I am going to be bullied alot more and my concerns dismissed with her especially and most others I have seen around here, so I am all about just going to the best first. BUT, will I need to have someone around here for testing or how does that work? Asking because I need to figure out my options of whom I think will listen which will probably end up being an ARNP because I seem to have more luck with them. Thanks so much...Again, any info is appreciated. This has all happened so suddenly and thinking back, I feel like a puzzle is coming together after finding this disorder.