pandakid11

Long story but my son was really sick and shaking uncontrollably in December after a month long illness. We first went to PCP who sent us to a Children's hospital annex. They did ASO test and we didn't know until now, because they said it was normal, that it was 412. Isn't that high? Bottom line is that he ended up in hospital and had a zillion tests and they concluded conversion disorder. We found a doctor who specializes in infectious disease who got him on antibiotics (This is now February). He did an ASO test and it was 352 and considered HIGH. He diagnosed Rheumatic Fever with possible Pandas. How can 412 be normal but 352 be considered high? I think the Children's Hospital blew it. 412 is high and they should have gotten him on antibiotics asap. Thoughts? Thanks

Hi Our 11 y.o. has chronic nausea. Promethazine helps some and he has tried everything OTC, but suffers with it non-stop. I see native remedies has QueseX. Has anyone tried it? Anything else work? We have tried the ginger, and all the other health food store stuff. I think if his nausea cleared, he would feel a million times better. Flow chart appears to be Nausea = shaking (anxiety/tics)= feeling awful = emotional episodes (over-reacting to everything, crying, anger). Thanks

Hi Doctor he is seeing now put him on Abx, not the hospital (conversion disorder dx). Hospital knew strep was rampant in his school. He had every symptom including the shaking. Lousy. We are worried because his heart races alot, sometimes really bad. His ASO is very high. Ugh!

Hi They did the swab test but he never had a sore throat. It was not positive for strep but he must have had it in his body. The doctor he is seeing now ran the ASO test and it is sky high AFTER anti-biotics. He was suspecting strep or some sort of infection, thus the reason he quickly jumped to anti-biotics (but this was 3 months after initial infection). I think the hospital BLEW it. He never showed any history of conversion disorder, nor does conversion disorder cause fevers (he had plenty). If they would have given him anti-biotics then, maybe we wouldn't be in such sorry shape now. He has been on zithromax for 3 weeks, followed by vancomycin (thought to help stomach infection of mycoplasma that came up and possible c-diff), then now he had a penicillan shot and is on Rifumpin (sp?). Plus, he is taking apo-hepat for liver help, noni and monolaurin. He also is using baclofen for the shakes (it helps unless he is really bad). He is finishing a 5 day run of prednisone. What a mess. He just feels horrible. I think we should probably get him to a pediatric rheumy per our doctor. We are in Denver. Thanks Oh how I hate the Conversion Disorder diagnosis...an excuse for arrogant doctors to NOT look for a true cause of a patient's symptoms. I also kills me that these docs spend thousands running MRI's and EEG's but don't run a $30 throat culture (or strep titers) when kids some in with these motor symptoms. Did they ever run throat cultures? My PANDAS dd had no red sore throat, yet we demanded a throat culture and it was positive for strep. Her assymptomatic sister was also positive on the rapid. Is your son on antibiotics? Which one and what dose and how much does he weigh? Do you have a hx of rheumatic fever in your family? Where do you live? You may need to see a PANDAS doc. I would also throat culture family members to check for carriers. Hang in there, you've found a great place to post questions!!

Hi Back in November, my son got very ill with throwing up, fever etc...this migrated to uncontrollable movements, shaking etc...scared us to death. We went to his PCP and emergency room. It never got better, so we admitted him to hospital, who ran MRIs, EEGs etc...after all this, they said it was conversion disorder. We brought him home and it never improved. They tried tenex, but this made it worse and through him into a stupor. After tracking down a doctor that deals with unusual cases, we have found he has severely high ASO test, thus diagnostic for Rheumatic Fever. He has had shakes (uncontrollable movements), fevers, feels awful, severe pain (especially in joints), fatigue and looks like he has the worst flu. Also, he is very emotional, either crying or has periodic anger. He has already been on multiple antibiotics so we are plugging along praying for a miracle. My questions are this: 1) How did hospital miss this? I realize it was never in his throat, but still, the symptoms!!! 2) How do you get over Rheumatic Fever? If Prednisone does nothing, does this rule out PANDAS? He is on day 5, the final day, and so far, not better. Thanks for your help. 2 Wiped out parents.

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Hi Back in November, my son got very ill with throwing up, fever etc...this migrated to uncontrollable movements, shaking etc...scared us to death. We went to his PCP and emergency room. It never got better, so we admitted him to hospital, who ran MRIs, EEGs etc...after all this, they said it was conversion disorder. We brought him home and it never improved. They tried tenex, but this made it worse and through him into a stupor. After tracking down a doctor that deals with unusual cases, we have found he has severely high ASO test, thus diagnostic for Rheumatic Fever. He has had shakes (uncontrollable movements), fevers, feels awful, severe pain (especially in joints), fatigue and looks like he has the worst flu. Also, he is very emotional, either crying or has periodic anger. He has already been on multiple antibiotics so we are plugging along praying for a miracle. My questions are this: 1) How did hospital miss this? I realize it was never in his throat, but still, the symptoms!!! 2) How do you get over Rheumatic Fever? If Prednisone does nothing, does this rule out PANDAS? He is on day 5, the final day, and so far, not better. Thanks for your help. 2 Wiped out parents.

Hi My 11 year old has PANDAS and I was wondering what the success rate is of it going away at puberty? Would being on antibiotics until then be wise? If yes, which ones? I am nervous about going the IVIG route since it doesn't seem to be successful after age 10 and it is extremely expensive, even if insurance covers 85%. Plus, there appears to be risks. We are lost. Symptoms of son: 1) Nausea - never goes away 2) Headaches 3) Shaking - Sometimes to the point of flopping all over 4) Personality will change from sweet and nice to anger and rage 5) Pain all over 6) Pale looking and weak 7) Neck pain 8) Anxiety and Terror - just calling his name can result in terror look and rapid heartrate. (Severe startle response). 9) Crying episodes 10) Irritable. Seems like everything you say is taken wrong when he is in the alternate personality. Does this all sound familiar? What should we do? We are literally lost. Thanks

My son is having major issues with startle response. Just calling his name can scare him to the point where he goes into fight or flight mode with racing heart and panic. What do you do for this? Thanks