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nevergiveup

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  1. Looking to see if anyone has an update on the blood test measuring antidopamine1 levels from cunningham. I had read on here that she will be opening a new lab for this test and it will be a standard test rather than a research test. If you have info, addresses, phones please let me know. I would like to have my dd's docs measure her antidopamine levels regularly and need to know if this test is now available. Thank you
  2. Tpotter, how does this look like sc? No chorea? SC is chorea.
  3. The girls do not have chorea, so why r we comparing this to SC. Little to none says dr T. Also statistically impossible to have this many girls without boys. I think further investigation is needed, and completely irresponsible for all of us to start supporting this as pandas. More plausible to compare encephalitis lethargica than SC.
  4. Melanie, do u measure autoantibody levels in order to justify pex for danny every 6 months. What markers are they using to see if pex worked? Why is pex necessary? I know u have great doctors and would love to know what other treatments may be available if necessary. Thx !
  5. Oh and if ur docs measure trough levels please post them, autoimmune disease is best treated with ivig when trough levels are maintained AT ALL TIMES, above 2000. Its a good way to determine dose and frequency by using this marker. So if ur childs troughs are below 2000, this maybe why the ivig is not working on autoimmune disease. People consume ivig at different rates, my dd's troughs go from 3200 to about 1900 between the 21 day infusions. When she was every 28 days it went from 2200 to 800. Huge difference. Half life of ivig is 21 days.
  6. Low dose vs high dose and frequency have an impact. Very complicated and one persons low dose may be anothers high dose so I would clarify what dosage u r referring to. My dd had low dose (600 mg per kg) every 4 weeks for a year, she has hypogammaglobinea, low igg, low igm. Plus she has many autoantibodies. (ANA, antidopamine, and an extremely low c4. She is treating by one of the leading autoimmune disease specialist in the country and heads our bone marrow transplant center. Our doc has treated thousands of children with serious autoimmune disease with chemo, monoclonal antibody drugs, and ivig. The low dose didn't help with pandas too much but we did not see a lot of improvement until we switched to every 21 days and 1 gram per kilogram. We titered up the dose so she could adjust to the increase slowly over 6 months. My dd had a large inflammatory response to ivig and this did not help her pandas so we had to ramp up slowly. Low dose ivig (under 1 gram per month), is not found to help autoimmune disease, so not sure why ur docs would feel this would be better. Of course if ur child is reacting to the high dose what other choice do u have. I would maybe consider a medium dose with increased frequency to maintain stability and to snuff out the autoantibodies. Works well with other autoimmune disease. Is protocol of choice at our bone marrow transplant center, and balances ivig side effect with disease reoccurance. Oh and sub q infusions do nothing for autoimmune disease and should not be considered unless u just want to treat the immune def.
  7. Seriously, eamom, what does buster say, all girls. How do u get past that statistic???? I am so old and forget my statistics, but what are the statistical chances of no boys. Or one. I believe there are 23 girls now with this and one boy? Need math expert. I hope further investigation continues, hate to think our community will let this stand as either pandas or conversion disorder, these girls deserve more investigation, and support.
  8. The brain is affected by pandas, I am sure there are so many symptoms that could show up. I am just saying that the leroy symptoms are similiar within their group, but not similiar within our group. But if u took 12 pandas kids randomly would u have these symptoms? No they would have many different symptoms but the common symptoms that arise among the group would be ocd, chorea, bedwetting, separation anxiety, tics and sudden onset, some may have seisures and stuttering.(Maybe 1 out of 12) But it would be more boys than girls and not a lot woud have stuttering and seizures. It maybe infectious triggered and very concerning, but it is not "pandas". If it is then swedo has the disease all wrong, and we have lost our ability to diagnose this disease once again, the major concern of singer and gilbert and many neurologist whom are looking for ways to identify our children so they can treat.
  9. Yes there are symptoms that are typical and are documented. Seizures and stuttering are not typical, sorry guys, they r not common for pandas. If they were swedo would have it on her list of symptoms. Who is to say that they correlate with pandas or they are a symptom of something else. A child may have them but they are not red flags for pandas. I will give a personal example; Some children with pandas have a high ANA.(2650 plus) However some people just have high ana's for no reason, with or without pandas.(Parvo virus can do this according to Murphy.) My dd has an extremely high ANA, is it correlated to pandas, I think SO, yes, but in all honesty I could be wrong. Dr T would say it does correlate with Pandas, but swedo would say not a symptom. Sometimes, everywhere I look I see pandas, if I want to, but clearly not every child with ocd, and tics has pandas. (They could have lupus, hashimotos, or head trauma,adem, a brain tumor, lymes disease.......) But I am sure that I may think they do cuz its all we know and what we see everyday. So back to my original post, these girls do not have severe sudden onset ocd, almost no boys have gotten this which statistically is strange for pandas,swedo said we should see 40 boys with this if it was a viralent strain of strep. The medical community is missing something, and I hope they continue to push for answers because it may help many if they can figure this out. But at this point to call it pandas plays right into the hands of the naysayers docs who cannot wait to show that pandas is not a legimate disease.
  10. A lot of these girls have seizures, and stuttering, not a common symptom of pandas and for all the girls not to OCD, kind of strange, u would think some would. Not sure what ur point is Fix it! Why are u so defensive and accusational. No one ever said that tics only cannot be pandas. These girls are suffering and I in have no agenda to force a pandas diagnosis on them. They may have something more complex and serious, they could have been exposed to neurotoxins. Jusy wanted to say I agree with Dr T saying that this is not "typical" pandas.
  11. I think it is extremely unfair to these girls and their families to have ever mentioned conversion disorder. I hope Dr T can help them.
  12. These kids look different than the panda kids, look in their eyes, not the same as u see in a pandas child. Definately, no ocd, no terror, no panic like our kids with intrusive thoughts. I have been watching the videos and I do not see dilated eyes like our kids have. Does anyone else agree?
  13. Something spooked them and its wasn't about treatment, it was about liability. Some doc scared them into thinking they may be liable if things go wrong.
  14. Because of ur sons seizures, I recommend u see a pandas expert who is also a neurologist, Dr Latimer in bethesda maryland, would have the background to handle both. What city r u in, if u r in cincinnati I could recommend a rheumatologist who may be able to help.
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