nevergiveup

They actually called AIDS GRID at one point. Oh my gosh that is just as bad as the child crazy complex. These guys are docs not marketers, they should solicite advice on these things that are out of their area of exoertise. The name could affect care, funding and just overall acceptance of the illness. I hardly want to go to my dd's teachers and tell them she has the autoimmune crazy complex. PANDAS at least helped explain it was strep related, something infectious, clearly explaining she "caught" this illness. The more vague, the more people don't relate and more controversy will arise. Sydehams Chorea or RF have always been the easiest to relate to this illness. Her teachers and family members could look it up on the internet and understand.

Gilbert went through different studies citing why he felt they were not sound. He mentioned Hopkins and studies done that had conflicting results. He left the impression that PANDAS has no creditable science behind it to date. He left the impression that docs cannot and should not treat PANDAS. I know he personally believes some TS is immune mediated, or could be. But he wants better science and better drug studies to justify treatment. In some ways he left the impression that the new info about to be published will further justify his stance that Pandas does not have credible science behind it. So I am very confused. I am just hoping this is not the case and it is really the white paper he is referring to. Not another Hopkins study showing how Pandas is not backed by science. I have to say I am confused as to the timing and content of this lecture. U can call UC at their Continuing Medical Education Dept to see if they have a DVD of his lecture. They have stuff on line its easy to find.

Guys, I would rather call it SOT, than the Kid Crazy Complex. Our kids struggle enough without the schools and teachers thinking they have a neuropsychiatric COMPLEX. Why can't they have a legitimate autoimmune disease rather than a complex? What is a complex anyway, versus a syndrome vs a disorder vs a disease? Are these technical terms? When someone has a complex, it doesn't quite give the best impression. So I vote for SOT, also, even though we don't get a say in it. I guess now any kid with crazy behavior could have the "kid crazy complex". This sure is going to make life more difficult for the shrinks.

I completely agree, now that my dd has found good care and great doctors, I thought I could let go and relax. Its been such a part of my life for so long, I still do not know how to give up the fight. I wonder if I will ever be the same again. I think not. I do try to let go as much as possible to be a good mom and find time to enjoy my truly brave and inspiring daughter. But in my spare time, I am still searching for answers and giving advise to others here on the forum.

Less side effects are better for my dd. If ur child gets a fever it will only stir up the immune system and potentially make panda symptoms worse. My dd gets monthly ivig, she has less Pandas symptoms and does better all month if she has a symptom free ivig. With a fever it just sets her back for weeks with her Pandas.(Just like any other fever she has ever gotten with or without ivig) I do not think turning back of the pages is necessarily a good thing. Just my opinion. Slow infusions and lots of hydration can prevent an immune response(fever) from ivig.

JAG10, if the disease is not about strep, like sydenhams chorea, does that mean abx is not warranted??? I hope abx is still a first treatment option. quote name='JAG10' date='10 August 2010 - 04:53 PM' timestamp='1281477195' post='79181'] They can call it sh*t on toast if I don't have to feel like I "scored" every time I leave the pharmacy with abx!!!!!!!!! I got them for both girls, BTW. Yea!! Now I can go on vacation!!!!

Iowadawn, that name sucks!!!! Now our kids just have that crazy complex. Many autoimmune diseases cause neuropsychiatric symptoms but its not in the name, LUPUS, Hashimotos, MS. Please how can our children be stereotyped with the crazy complex. Nice now our kids have tics and a crazy complex. I hate this name and it will limit funding opportunities!

Joan Pandas Mom, My father is a physician and he attended the last appt with our Pandas expert doc for my dd. He was very interested in the white paper and this illness, he wanted to understand where it came from and what swayed the medical community. Our pandas doc said that it was other doctors children whom suffered from Pandas whom finally help sway this disease and their efforts to show that this is infectious triggered and autoimmune. My father liked that answer. I can only imagine what was going through his head..."Ah if other docs see this then it must be true". Not even his own daughter but other docs with kids with pandas. Yes doc kids get different treatments, I know, I am a docs kid. I always felt very comfortable will all of my medical care. Harsh reality, set in when I couldn'legitimize my dd's illness. I would bet all my money that Buster, myself, sfmom, and kimballot, tmom, oh and many more have even more to offer than the average suburbian doctor of random specialty in this illness. We could easily diagnose it, long before most pediatricians. Sorry to all u doctors out there, but everyone knows a mothers(fathers) gut instinct is far more powerful. Maybe we need to go to med school?

Vicki, Its the ending of the PANDAS controversy, but the beginning of treatment for our children. Cannot have a new name disease unless the old named disease never existed. See the new disease will have legitimate backing and be more accepted and less contoversial. Plus my guess is Strep will not be a part of the new name, rather infectious triggers like; strep, myco, H1N1 will be part of diagnosis. I think the whole strep thing, confused docs, but it never confused the parents. Semantics. It has been a long road and rather disappointing, I agree Vicki!

Dr. Don Gilbert gave a lecture today at the Lindner Center Of Hope. He is a leading TS doc and has trained and studied under Harvey Singer at Hopkins. He spent one hour today, giving technical and statistical justifications as to why PANDAS is an unjustified diagnosis and does not exist. He went through many research studies including Swedos, explaining how they were inconclusive and not sound enough to conclude PANDAS is real. He mentioned the fact that strep titers elevated do not necessarily mean a child has pandas. Which we already knew on thus forum long before he did (Dr Gilbert). Ok so he ends the lecture with "New information is coming though". Ok. Semantics..... If our children have an autoimmune disease, treat with immune modulators. I am thrilled and excited as to what the future holds for our children once this new info is released. The docs are still a little stuck on how to identify these kids with the autoimmune varient TS versus other TS. I am praying Gilbert will take a leap of faith and best judgement, based off of a child's medical history of "infection triggered reactions" and treat. There is NO confirmed test to diagnose MS either, yet it is treated all the time. If he listens clearly to the parents he will be able to distinguish these kids. Hopefully the new research coming is getting strong enough that the "do no harm" has turned to "not treating is harmful".

I have heard testing for lyme after ivig, will lead to non conclusive results.Same with testing for co infections and cunningham test.

There is so much gluten free goodies at Whole Foods, and after some trial and error u will find the best tasting cookies, pastries, brownies, micrwave meals, chicken nuggets(freezer section) and cupcakes. He will not miss a thing, pack his lunch and its not as hard as it use to be. Even walmart has GFCF products everywhere in the store and they are labeled. Betty Crocker has great stuff all new line of gluten free. SAM E makes the best gluten free bread, also at whole food we love the potatoe millet bread. It helped my dd's diahrrea tremendously and actually we all ate less carbs and more fruit and veggies. It was good for the whole family. I think soy flour is not so great for excitability so I also stay away from that. Great pasta's, howver stay away from rice pasta not so hot, corn pasta great, but under cook it or u will have polenta. Ketchup and mayo is always gluten fee from Heinz and Helmans. The difficult time is at friends houses, but the diet truly will not work unless he's gluten free, not even trace amounts for at least a month. Our pediatric rheumotologist says it truly helps RA and other autoimmune diseases in kids but only if it is adhered to completely and for a long time. He says it can be an unrealistic treatment for kids. He feels it is virtually impossible to adhere to. Except my dd had a child with severe celiacs in her class and this helped a lot since she already paved the way for all the teachers, kids and parents. So many understood and had special treats and food when my dd was around. Some even had special draws filled with GF items for my dd when she visited. The hardest to convince and the last to fall in line was her physician grandfather who didn't believe in "any of this stuff!".

Melanie, My dd had to be stuck 6 times once, never used that nurse again. Not becuz I requested but becuz she (the nurse) was so scared and embarrassed she wouldn't come back. My dd was obviously beside herself. Try the lidocaine cream before the ivig it helps. Good luck tommorrow. Make him drink lots of liquids tonight.

If she is getting 25 grams per day not mg then u are receiving Dr K's protocol. That would be 1.5 grams per kilogram. How ever u wrote mg ??? Its usually measured (the medicine in grams) also once in liquid form volume could also be meausred (for example 300 ml) but this represents both medicine and solution and is usually necessary to calculate infusion rate not amount of medicine. By the way have the infusions helped reduce symptoms? Is ur daughter healing. If ur doc is Dr B then u are most likely getting high dose? How often are the infusions?

I would be concerned about an ocd diagnosis from a psych. I went this route, and the docs later used this against us saying, pandas is sudden onset with remission, regular ocd waxes and wanes and is in someways always present. Well lots of pandas kids have left over ocd after an attack that never truly disappears so the psych doc was wrong. And if the psych doc tells ur doc its not pandas then this could eliminate treatment options. Some parents contacted DR Leckman from yale to help confirm the sudden onset. Or in Florida Tanya Murphy also gets that Pandas lingers ocd in between attacks. I cannot say any shrink in my home town has ever seen pandas nor can differentiate from ocd, so be careful this may be a doc whom is trying to politely direct you out of immunology. Peglem is right, insurance companies do not offer up ivig for ocd symptoms, so this is why I am second guessing ur docs motives.

Wow! Grear job also....its not like he diagnosed it, you had to convince him. I hope someday these docs will know how to diagnose this illness. Why are we trying so hard to convince docs that our children have this illness. A knowledgeable doc will know the disease. My most recent doc, didn't need me to spell it out. She understood the cunningham test, asked about her symptoms and started treatment. I hope u can find a pandas expert that will offer your child the best care. We are fighting for care when we should be getting treatment and concentrating our efforts on healing our children and making their childhood more fun, and fullfilling. How exhausting, we have to convince these docs this disease exists, our kids have it and what treatment they need. I am not sure why they aren't paying us for the visit rather than the reverse. We need to expect more from our children's doctors.

Plz run the cunningham test, it gave many of us reassurance that the diagnosis of pandas was legit. Plus it helps experts prescribe immunomodulators

Wow, please let us know what a pos Anne Connolly is. My dd receives ivig also at the exact same dosage. She says she sees symptom relief for about 10 to 14 days after ivig. She has had 8 ivig's at this dose. The majority of the time the ivigs produce symptom remission for about 9 days but we did not see this untill after 3 monthly ivig's. I know Shaes mom didn't see complete symptom resolution until 6 months. If your child is having a strong immune response to ivig, fever, headache etc. This may stimulate the immune system to produce antibodies. Slow down the infusion to reduce the overall immune stimulation impact. Second, this dose is way too low to dramatically reduce autoantibodies u may need a much higher dose of ivig to see a difference. He needs to maintain a weekly level of at least 1700 igg's to redirect the bad antibodies. At this dose he probably has a level of 1300 by the second week. My dd is now being monitored to ensure she receives a dose to treat autoimmune disease. We have switched to every 21 days and will up her dose until she maintains a .minimum of 1700 iggs at the third week. Have ur doc measure trough levels to ensure the levels stay high. We are optimistic that increasing frequency and dosage will give her relief the full three weeks between infusions. However if she gets sick or strep, she could still have some set backs but hopefully the next ivig will reduce symptoms. My immune doc says 28 days is wrong, the half life for ivig is 21 days.

I guess if the scientist knew what causes tourettes, then maybe you could separate it from pandas. However, TS is a syndrome with no real cause and no real treatment except numbing drugs. That's the part of TS which is so confusing to me, Funny how TS is a diagnosible, treatable disease, however no test definatively diagnosis it, not even an mri. No drugs eliminate it, and the exact gene cannot be found to call it genetic, even though all scientist say its genetic. Hey pandas is genetic too, all autoimmune conditiond have some predisposed genetic condition. I think underlying cause is key to determine treatment. Since TS has no cause, there is no treatment..

Get augmentin xr, Have u run the Cunningham tests. My dd had a bad attck at age 9, it went into remission and returned with a vengeance approx. Three and half years later. She is now on ivig every three weeks, high dose abx and fish oils, and motrin in the evenings. The reason why this happened again is because this is an autoimmune condition and it appears for many to be relapsing remitting. You need to see a panda expert now so that u are in the right hands. Many do phone consults.also. My dd is doing better now approx. One year post her attack.But she will probably need ivig for a very long time becuz her body seems to make autoantibodies on automatic now with or with strep contact. She has tested for more than just strep autoantibodies, she has some very obvious autoimmune blood markers and her immune doc wants to keep her on a maintenance program of ivig to reduce the amount of autoantibody damage. Apparantly, igg levels need to be above 1700 each week to minimize the autoantibodies effect. So she is being tested weekly for igg quatities to maintain this level at all time. Right now she has one week of high igg's after her infusion and then she burns them up. So she will be monitored to make sure her igg remains above 1700 at all times. Apparently this is how autoimmune diseases are put into remission with ivig. Not just one high dose but maintaining a high igg level at all times to redirect the autoantibodies she seems to be constantly producing. One high dose does shut off the production temporarily, but some kids have a chronic condition, producing autoantibodies all the time and this needs to be handled as such.

I would call Dr T he seems to be the doc with the micoplasma pneum experience. Is ur family on biaxin? What abx did they prescribe? I know u see Murphy, she seems very knowledgeable about pandas and infections, what is her opinion?

I can totally relate, this illness is an autoimmune disease and with that comes the relapsing remitting symptoms. My dd at age 7 had sudden onset pandas, recovered dramatically, at 9 another attack left her ill for one and a half years. After steroids and abx recovered again. Then at age 12 overnight again, we are one year from the last attack and now after 8 ivigs I am eating, breathing and sleeping again. This disease is scary! Very scary almost paralyzing. Its a mothers instinct to protect her child. Sending them back to school for me provokes a response of fight or flight. I know you cannot avoid the germs there. A young teen home alone without her friends is also very hard too.(My dd) We took her out of school last winter so as to limit the amount of viruses she got in a row. In other words, she went to school through the fall and was absent during the winter months and returned back after spring break. We felt this helped reduce the number of exposures and was a fair compromise for all. I know it helped her heal. She was normally sick all through winter in the past years. It was not easy but, I knew her immune system still was overactive at the time and I knew she needed a break. She got sick in October last fall, looked like a flu, and it set her back some, so that help us decide to pull her for winter. Our approach will be the same this winter, if she gets ill this fall and has a set back we will again pull her for winter because, she normally catches at least one virus per month Jan thru March and we will not take further chances of immune stress and overactivation. However, if this fall she doesn't relpse we will then take it day by day throughtout the winter. I made this compromise with my dd, husband, school and doctors becuz I too had the gut mother instinct that this was dangerous and although she had ivig she still relapsed hard after viruses. WE actually sat with school last August and discussed plan with teachers and principal. They understood our plan and agreed to help as much as possible. WE are doing the same plan this year if needed. So I understand this paralyzing fear, its a real fear, and Extremely legitimate and scary. After all we have been through, all of us pandas parents truly understand this fear.

Vicki, How can he present on something he will not treat! I will see if I can get tickets, contact u later with details,

Wow, this is so awesome! Pmom thanks for all u have done.

Today, I am hopeful and optimistic about what the future holds for our children. Although my dd still struggles with this disease, she is much improved. I am so thankful to Diana whom talked with me at my dd's most desperate time and got us medical help with Dr. L. Plus Tmom, SFmom, Peglem, Melanie, Ellen, Elizabeth and Keith,Cindy and Jackie, Vicki,mommd, Shaesmom, Shannontown, and many others whom after reading your posts daily inspired me to keep searching. And thanks to Buster and Eamom for all the science which gave me the justification to push harder and challenge my physicians to fight harder for my dd. I am inspired and hopeful because of all the parents efforts whom have changed the course and helped to move the medical community forward so our children will receive treatment and this illness will start to be treated as an autoimmune disease. With the white paper and Name Change soon to be released, this will allow for many children to finally get some treatment and also may redirect some of the kids into rheumotology and immunology so that further progress and drugs will be considered. All of this awareness will change the outcome for many. Its amazing what our Pandas docs and all of these parents have accomplished. For all the parents out there whom were belittled, insulted and sometimes attacked by their neurologists or pediatricians becuz you knew this was treatable and an autoimmune illness, I understand. And it will be hard to watch those same docs now use the new "named" illness in order to avoid conflict with past patients whom clearly asked about Pandas and were told it didn't exist. In my case, I was told countless times to "Get off the internet, everything your reading has already been disproven". In some ways it makes u wonder if the major players couldn't come on board until they could save face. How will they face that same mother they rolled their eyes at 1 year ago at the suggestion of Pandas. So Progress in medicine is Name Changing, apparently this is a pretty popular thing amongst the medical community. Its part of the "spin" to save their professionalism. Ok I will go with whatever it takes to find treatment and help for our children. This illness is debilitating and serious and needs to be treated as such. I know now that treatment is available and will continue to be for our children, this struggle and fear I have lived with (nontreatment) is now over, I am sleeping better at night just knowing this. Now I can concentrate more effort on enjoying my dd and our lives, even though I know now a whole new challenge lays ahead, more research and finding better drugs and a cure, the really hard work has been done by Diana and her coworkers, and I just needed to pause today to Thank them and say Wow, what an amazing thing u have done for so many! Oh and anyone from Cinci area, if your child has pandas go see the immunologists in the Bone Marrow Transp-Hemoc-Oncol Clinic, they are the best!(There are two divisions of immunology, only one treats) Neurology does not treat and for some odd reason does not refer either?