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Everything posted by nevergiveup

  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.
  15. My dd also 15 saw her greatest improvement after one year on ivig, given every 21 days. My dd suffered three major attacks from age 7 through 12 and I believe her autoimmune condition became chronic. Our doc said we would start seeing improvement at 6 months of ivig. My dd also had over 41 sinus infections. She was never not on abx for the last ten years of her life. Glad ur son is feeling better, my dd is also much improved.
  16. Gosh.... I knew u were kidding! Forum is the best though. I think lots a docs secretly come on forum to get informed!
  17. Mama and Buster cannot write the white paper, as good as it may be, they are not credible researchers on pandas. Not to take away from their expertise, or knowledge of pandas, lots of us here especially buster know more than most of the "experts" but the facts are Swedo has been fighting for us, for over 12 years, and I must say that I know she is on our side, and on our childrens side. Thats all, could the white paper say more, sure it could of, but I trust that this paper said what it needed to or what had to be said. I also trust once the ivig study is complete and cunningham tests are available more will be published. In the mean time, if your local neurologist does not believe in pandas or if you feel your sons tics were caused by a pandas attack please go see an expert in pandas. We all need to continue to fight for proper care, to fight to get this disease, its symptoms and treatments understood but for the immediate time period getting the right care for our children is out there and waiting around for our cynical large medical system to get on board could take years. I am not willing nor able to attack swedos paper at this venture, I wish it had said more, and I feel its ok for many here to say they wish it had said more. But because of parents request, parents collecting data on the kids, parents pushing for docs to reach out to swedo, she and the NIMH resurrected this study and collected doctors together, all the naysayers included and fought to help them see this disease exists. This paper allows all neurologists to continue to treat ocd and tics with the same drugs, with or without the diagnosis of pandas. Nothing really has changed except pandas now is real. I am just happy for that right now! Its a start in the right direction. I know families in my neighborhood whom docs have told them pandas is not real and the families have stopped searching for treatment. Now the docs will say its "rare" and maybe some of these moms will google us now and find better care. oh and as for public policy, I was referring to the cost of medicine, ivig and pex. And as for abx, our public policy is to limit them to prevent super bugs. Oh and Mama, you are a very good writer, never was I trying to say you did not understand the paper. I was actually talking to all on the forum about my opinions of the paper and why I thought it was important, and the history behind some of it. I like to be more of a big thinker, not really targeting anyone in particular, or any one persons opinion. Just want the kids to find care ASAP, I waited around thinking the genious doc at my childrens hospital would come around and see the light, and all the while I was letting my child get worse.
  18. Cans people were well aware of Swedos white paper a long time ago. Not sure why they preempted it. Again politics, territories,status of expertise etc.... Actually the CANS paper was published by many docs whom have writen Pandas was not real, so it is all strange and political. I think a little CYA actually. If u talk with the docs at thse mtgs u will hear how territorial and political it all is. Medicine is Big business.
  19. I understand completely and your frustration is so understood. Her goal and audience is slightly different than ours, and I mean slightly, cuz I do believe she wants to help our children, all children with pandas, but first she has to convince everyone the disease is "real". See we know its real, its been real and a reality for all of us for ten plus years. She only came back to write the paper becuz families here and elsewhere were enlightening her how difficult it was to receive care. As for The treatments first line of defense will always be what is most minimal(least cost), familiar, and supportive of public policy. This would be ssri and dopamine drugs for tics. Even abx was excluded cuz of public policy. Its sad but she tried that already, she showed how ivig, abx both helped pandas and she was attacked. So I am sure that her strategy now is to create a disease, symptoms and opening the minds of neurologists everywhere to look further, understand more and come to their own conclusions over time. If that is all she has done we will see success, you cannot get through to a neurologist who laughs at the mention of the disease and dismissed you as a patient. She had to start over, as sad as it is, no one believed this existed, no one thought there were specific symptoms, nor did anyone have any idea how to recognize it. You have to be able to see the disease and then all the rest will come, I hope. For all of you waiting for more, I never expected more since I knew that this is far more political than all of us could ever imagine. Its a shame but its a day to day reality in medicine and government. I agree though, the paper does not address tics enough, but clearly the politics, research and ownership is already in a certain direction for TS, and this could change all that and certain docs feel that the data is not supportive enough to do that. Its not about our kids but the whole system, research grants, jobs, and egos. But I still feel this will start the ball rolling for all our kids and their kids to follow. Wish things were different.
  20. Making this a real disease(the white paper) starts the ball rolling. All of our children have a combination of symptoms, not everyone has all symptoms of any diseases. And the naysayer doctors whom will follow this are going to offer the same treatment for ocd as pandas, ssri's and dopamine drugs. Nothing has really changed except, EXCEPT, now more studies will be started. Many studies have already looked at inflammation and tics, further investigation is now warranted. If swedo stated anything more than she did the neurology docs would counter as they have in the past and distort the facts, discrediting her article with slanted titles that confuse many whom just scan the medical periodcials. Let's start with Pandas is real, exists and is an autoimmune reaction, caused by several infections and can cause tics and ocd. It means a lot. Its the beginning, we still need to fight and show how all the children may have additional symptoms, but it is the beginning. The neurology docs will still say, "oh ur child does not have pandas, its very rare, many will struggle with diagnosing, but as more and more questions are asked, the doctors will start getting better at diagnosing, at least they will now start asking questions like "Has ur child had a strep infection, or pneumonia lately? " Or "Does ur child have frequent urination, or separation anxiety? Has his handwriting skills changed during these episodes? Doctors will soon see that kids with tics have many of these symptoms and Pandas is truly more common and more complex than they previously thought. I understand ur disappointment, but after all the public bashing Swedo has taken, taking small steps to get these doctors on board was her only option. Her previous attempts did not "sit" well and it limited our childrens care. One thing is for sure, u won't here pandas does not exist anymore. Its a start, wish it was more, but with the cynical medical system we have and extremely cynical doctors out there, this process is slow and evolving, but at least it is finally moving in the right direction. Pandas does exist. Now what are the doctors going to do about it, keep treating an autoimmune disease with antidepressants and dopamine drugs? Does that make sense, no not for the long term, anyone can see that. Parents will insist on better treatment as parent insisted on making this disease real and known!! But if u want help now, u will still need to see the panda expert docs, cuz waiting around for our huge medical system to change could take decades.
  21. Vicki, u r the best!! Always keeping all of us up to date. Making us all better advocates. Information is power and Vicki gets us our info!!! Thank you!
  22. POWPOW so quick to give credit to Mechtler. Really. I will get u article where he discloses this info to the public.
  23. Last week Dr Mechtler, leaked that the girls were lying when they said they had no stress, he said that there is a history of sexual abuse and many have no father figures. He put the bait out there for the press to start sniffing around and now they have more specifics on certain cases. Dr Mechtler is manipulating the press, and they r falling right into his trap. Instead of questioning him on his diagnosis, now the press is questioning the girls on whether or not they have stress in their lives. I hope everyone sees what a caring doctor he is. His reputation is more important than the privacy of his patients. What an ego. If he is confident with his diagnosis he should not feel the need to do this. Sorry but docs like him should be called on their behavior, but for some reason our society still has a culture of believing everything a doctor says without questioning them.
  24. I agree its so hard to watch this. So hard to read the "group think". Definately DENT has really done a good job positioning themselves as the correct diagnosis. They have insulted the girls whom are not in their care by calling them bullies, they have minimized the infectious disease trigger (PANS) by saying we r an internet moms(therefore have no credibility) They have leaked language from Swedo, which she has not even validated. They then have made sure the press knew of sexual assaults on the girls. DENT has managed the press very well. I think they have a career opportunity in politics. With all the education they have clearly taken advantage of young teenage girls from lower income families whom have no way to fight back. How the press can piggyback on this spin makes me sick. Clearly the public wants to hear that this is not contagious and its because the girls are hysterical. That's the safest and easiet answer. We went down the same road as these children, my dd's first attack the doctors were concerned about a sexual assault or that she got a hold of drugs. (she was 5) These families are extremely brave and desperate to go public with their stories. And Dent has made them look like idiots because they did go public. Now DENT blames their lack of improvement on seeking additional care. See the spin. Its DENT or be destroyed.
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