kimw

Ok good news. We saw our old PCP yesterday and he is going to be our Quarter back for us. He agrees that my ds has PANDAS and that he had Rheumatic fever in the hospital. He changed his abx to Keflex (1 tsp 4 times daily) and prescribed 5 day steroid tx. Dr. will be talking to immunologist and get a new ID specialist involved. I feel so much better but still worried that we might be too late for my ds as he has 101 fever, diahrea with blood, swollen foot, and of course major anxiety issues with minor tics. I just don't want a major relapse b/c what we went through prior to hospital and during was traumatic needless to say:(. Kim

Oh my goodness your story is similar to mine (my topic is post-strep syndrome). Fyi, pnVK did not work for us. My son has fevers, major anxiety, swollen foot and elbow now so we finally saw our old PCP yesterday. He believes my my ds has PANDAS and had Rheumatic fever. He put my ds on Keflex 4 times daily right now. stronger antibiotics are better. Today my ds gets MRI but like you I think it will show nothing. Read my topic and if you want to pm me further I would gladly help. So sorry to hear what you are going through. Kim

My ds has fever, diahrea, swollen ankle, and had a tantrum/anxiety last night not wanting to take a bath. I called dr. to change abx to your suggestions. Hoping to hear back soon. I am so disheartenen. I know they tell us that it takes time but I want him better NOW, ya know? Sorry:(. When you guys mention a relapse can this mean worst than before? I'm just scared that we are going to end up in the hospital again. Kim

Do you know what dose IVIG he had? Low dose can actually worsen pandas symptoms for some kids but high dose (over 1.5g/kg) has anti inflammatory effects and seems to work better with pandas kids in most cases. I'm so sorry to read your of your suffering and hope things turn around soon. His dose was 2.6/kg so my undrestanding from the immunologist, my ds was getting the right dose.

The Immunologist sent my son's blood work to a PANDAS research. Would that have been Cunningham's?

Sorry I just saw this & I realize now why I'm confused. I posted a topic post-strep syndrome & was trying to get feedback about our experience with my ds. We thought he had PANDAS but then he was admitted into the hospital with rheumatic fever but then discharged as post-strep syndrome. Then we thought it was Sydenhams chorea that turned into rheumatic fever but his chorea wasn't typical of Sydenhams so again we thought PANDAS. Someone mentioned lymes & test came back normal. But we didn't do the western blot So now my ds was tested for that today. I'm at my end wits trying to figure all of this out & reading all of this makes sense why I'm disheartened bc it can be anything & it's difficult to pin point my ds real issue.

Unfortunately, Dr. E, it's even more complicated than that to distinguish Lyme from PANDAS. Our son's symptoms started with physical symptoms often associated with Lyme: joint pain that moved from joint to joint (migratory polyarthritis), muscle weakness, difficulty walking. Six weeks later the "seizure-like episodes" of chorea began. I believe these are common physical Lyme symptoms... but they're also classic symptoms of acute rheumatic fever with Sydenham's chorea, post-strep autoimmune disorders that are considered part of the same "spectrum" as PANDAS by many experts. So even the physical symptoms overlap considerably. No wonder there's so much diagnostic confusion... and why us paranoid parents don't get much sleep!

Thank-you everyone for your help. I am definitely overwhelmed & trying to understand as well as do the right thing. The immunologist said to go ahead with the pnVK till more tests are done as he thought the titers were not that high. I'm so confused:(. But we are submitting a special urine test the immunologist gave us & we meet him in 2 weeks. My son is 3 weeks post ivig & 1 week post iv antibiotics & has been on oral abx. I guess i need to be patient but it is so hard & in the meantime heartbreaking to see my son as he is.

I need a list of PANDAS specialists in the Dallas-Forth Worth areas. My son will most likely need plasma exchange. Any help will be greatly appreciated. Sincerely, Kim

Ok, I just heard that the ID specialist wants to put him on pnVK for long term not the ones you all mentioned. Are the abx you mentioned for long term or short term?

Yes, he is on prophylactic dose now till he is 21 (eventually twice daily instead of 3). They are changing his amox to penicillin in 3 weeks, but I called today with all of your suggestions. I bought the Saving Sammy book online yseterday and I never thought of buying one for the specialists and our family doctor. That is a great idea, so thanks for the advice. I will buy ibuprophen today. His myco p igg was normal (did nto do myco p igm). I am in the DFW area. There is another parent here who has a PANDA child and she has helped me find some doctors. However, the ones for plasma exchange are in San Antonio or Washington. I contacted Dr. K but he is expensive so I think we will be fine with the immunologist since he is covered under our insurance.

I can't remember the name of the antibiotics he was on for bronchitis as I never used it before. It started with a C and it was a 5 day tx. He had the mycoplasma pneumoniae IGG tested in September and it was normal. We are supposed to have it tested again since it can always show up later. I already plan on changing his meds when we follow-up in 3 weeks, but I think we need to sooner. Also I am thinking of cancelling the follow-up appts with the specialists in FW since they don't agree with PANDAS.

My son who is 6, has been sick with Strep Infections consistently (antibiotics > 5 times a year for the last few years and this year is the worst: 10 times: & 3 times in 1 mo.). Also, what is intersting when he was in Kindergarten we now understand a lot of things we didn't then. He was blinking his eyes a lot, ADHD, grunting sounds,and his hands would shake and we were told he would out grow it. Also, he showed signs of anxiety and we didn't think too much of it as it was mild. He didn't do well in Kindergarten and we refused to have him stay back b/c we knew he was smarter than that. Well, these last 3 months have been very terrifying. I saw my son detoriate before my eyes and no one would admit him for me till he was incapacitated. Last week of July he came down with a fever and we took him to his dr. (strep was negative but it was the first day we tested so if we had waited it could have showed up positive). We begged the doctor to put him on antibiotics. Soon after he was sick again but with bronchitis and was on antibiotics again (we asked for it of course) and nebulizer. First day of school, he was limping, showing signs of worst tic disorders (head movement where chin would meet chest over & over, and major anxiety as he didn't want me to leave where he made a scene). Within a week he was sick again with high fevers, diarrhea, and swollen tonsils with puss. His behavior worsened (OCD, TIC, lack of reasoning). I felt like he regressed to toddler phase. I had mentioned PANDAS and not one doctor took me seriously (only 1 did). Basically, we ended up in ER 3 times and no one would admit him and would only refer him to specialists. He was DXed with Reactive arthritis and minor tic disorder and referred us to a neurologist and scheduled an EEG, the 2nd time he was DXed with something else (related to arthritis) and this dr. did mention PANDAS and he referred us the ID specialist. The 3rd time he was DXed with gastritis and dehydration. In the middle of this, we had an appointment with an ENT and she recommended strong antibiotics and scheduled surgery to remove his tonsils and adenoids. During this tx, my husband gave my son celebrex and my son was the old boy we knew. However, when he finished his antibiotic and didn't get celebrex he couldn't walk at all the day after but could the next day (he was limping of course) and his behaviour was never anything I've seen before (under the table screaming, crying, and hands over his ears because he didn't want to do his homework). We went to the ID specialist and she did blood work. She referred us to a Behaviourist, a Neurologist, and a Rheumatologist. She also ordered an EKG & echo and all came back fine. She mentioned that PANDAS is a controversial diagnosis and gave me an article to read (unbelievable). During this time, we found an Immunoligist. He believed us and gave us strong antibiotics but it was already too late as my son worsened that week with major chorea movements and dilarium (his throat was swollen again and he had a fever). By the next day he could not walk at all (crawling) and by the time he was admitted into the hospital he was incapacitated and they DXed him with rheumatic fever. My son was put on IVIG for 5 days and iv antiobiotics for 12 days, etc and had to take therapies (physical, occupational, etc). He was discharged on the 16th day with post-strep syndrome (changed from rheumatic fever). The following tests were done in the hospitial: a bone scan, ct scan of brain (done on 3rd visit to ER b/c we asked for it), MRI (which I requested) of brain, and another MRI with contrast 10 days after the first one. All was fine except for the 1st MRI which revealed slight markers indicating possible inflammation of the brain lining. He also had a lot of blood tests (lupus, lymes, thyroid, ANCA titers and all were fine. A spinal tap was also done and it was fine. By the way, the most consistent blood work was his sed rate and CRP levels that were off the charts. Also, his ASO titer was high (100-199) on 8/31 (1st time in ER) and then even higher weeks later (400-799) on 9/24 the day after he was admitted to the hospital. The Immunologist who believes that he has PANDAS suggested that my son may need plasma exchange. Since my son has been discharged, he still has bad chorea movements and behaviour (& anxiety) and it worsens when he is tired. Also, my son is taking 5.4 ml amoxicillin 3 times daily for 30 days (b/c he was tested for lymes & results were not back yet) along with 4ml Naproxen 2xdaily, 1ml neuronton 3xdaily, 30 mg of prevacid once daily. I also give him culterelle in the am. He is supposed to change from amoxicillin to penicillin 2xdaily till he is 21. Are there any other suggestions that might help us? Doctors in DFW who can help us order a plasma exchange if we need it?