nevergiveup

These docs whom have published this article are not treating pandas, nor have they wanted to. They are just trying to establish themselves as physicians whom are aware of the acute onset, I guess at this point they cannot ignore the scientific data supporting an acute onset. My guess is that the aresenal of treatments for neuropsych acute onsets include clonodine, haldrol, tenex, lexipro. Since the cunningham test is not available to all, how can they validate the diagnosis of autoimmune. Not to mention none are rheumotologists or immunologists, I find these docs not to be credible, who cares if they are at hopkins or went to Princeton,they are more concerned about their own personal liability than helping the patient, true cowards. Don Gilbert you should be ashamed of yourself, cincinnati deserves better. Its not that far of a reach, be your own man and separate from singer.

Have another ivig.

Please do not knee jerk to the next feedback you receive. Stay the course with ivig, my child took two years for us to finally rest a little, still recovering. Trust your doc, is Dr. B saying you should go look elsewhere. I know it is soooo hard not to knee jerk, but sometimes healing takes longer, strokes, encephalitis, ms, head trauma can take years to recover. Lupus when treated with ivig, doctors do not see a benefit from neuropsych symptoms for at leat 6 months of ivig. If you see him declining I would be concerned and maybe look elsewhere but otherwise stay the course for now.

Eljomom, I went thru what u are going thru many times, but clearly I can never give up. Its in our motherly nature to always be supporting our children. Weeding thru all of this great information on the forum is difficult and trying to figure out which apply to ur daughter is very complicated. Sometimes u feel like u are constantly making knee jerk decisions based off of ones person success. My suggestion to u is to find a doctor u believe in, one that follows your own philosophical view point (examples: aggressively treat, treat only in emergencies, limit treatment) one that has had successes, one that regularly sees ur child so u know they are the ones treating. I now monitor the forum on occasion to get the great info always supplied by the moms, I pass the info on to my doc if I feel they apply to us. I see my dd's doc every 9 weeks, and relay info and talk. I have never given up, but I have been able to relax a little since I know my dd is consistently monitored and followed by someone whom follows my philosophical medical approach that works for me. (My philosophical approach has always been to treat as aggresive as possible).

All sounds so famiiar..... Hang in... Don't let them give u a false sense of security. I was told yes ivig, I was given abx, my shrink said yes is autoimmune. All felt good for about three months, I was even given a week of prednisone. (Did u think pulmacort was a steriod, or do u have pills like prednisone, inhaling steriods do not count as a systemic steriod). However when my dd went to crisis, found out no one wanted to do more than neuropsych drugs. They always opt up and say they r willing to consider ivig at our neuro childrens dept, but to date have never NEVER done it for a child.But since u informed us u have contacted two pandas experts u have a backup. Also just so u know exactly what's goin on insist on seeing all medical letters sent by ur specialist to ur pediatrician, these are more "telling" of what they are thinking and planning on doing. Plus u will get to see what they write about u, and all ur papers and prediagnosing ur child. I may be skeptical but I have watched this process for 9 years, with many families and I deserve to be skeptical. At this step in the process we all go into emergency mode, we organize and research, find credible docs at our local "well esteemed" childrens hospital whom are welltrusted. If this truly is a first onset, u have a greater chance of curing this before it becomes chronic. One last thing, if all you gave ur child is a nebulizer, u still qualify for the NIMH study. Call them u will be with the best doctors, whom truly understand this illness and he will get ivig. I wish u the best and your son. You are in the right place, her on this forum, you have the most experienced moms here that will help u through all of this, because unlike your neuro or shrink, we know panda kids, have treated panda kids and at this point ARE the leading experts.

BeesKneesMommy, They call it "watchful waiting", it works for diseases that they can later treat, however, for all of you moms out there "watchfully waiting" next time u see ur docs ask, "If my child gets worse what is the next step, or drugs or protocol u will put into place?". If they do not say ivig, pex, abx, steroids, rather u hear antipsychotics, antidepressants, psychotherapy.... You are not with a pandas doc. Remember, they are still learning about this disease... According to Elias from CHOP, her recent interview she states there is still a lot unknown about pandas. So the docs LOVE to see ur kids and learn from their medical histories and symptoms but because of liability and lack of knowledge they r not ready to treat, not this generation of kids. Doctors are trained to handle this situation, they have the best intentions, they understand they may not be able to help your child now. But a smart one will refer u to a pandas expert and should, now that we have some. My turn to vent I guess?

I have not posted on this forum in so long but your post had me concerned. It seems u have a plan of action that is both practical and makes sense. Just about the same plan of action all of us on the forum followed(except self dosing with steriods) when our children first had a sudden onset. Everyones advise was to see an expert, there are only a handful. Nothing wrong with seeing a neuro, wouldn't hurt to run some autoimmune tests and get an mri to rule out something rare and unexpected.... but u seem to be ignoring the advise the others have given...seeing an expert. It was the one commonality seen in ALL of the posts here. None of us ran to the experts first day either, we did exactly what u r doing, many did not get abx right away either. One thing I will warn u of is that we got a lot of run around at the leading hospitals. Neuro spent two weeks running tests, followup, then a referral to a rheumotologist and infectious disease, they spent weeks running tests and followup caring for my dd, all the while practicing defensive medicine by offering many tests but NO treatment, telling us it cannot be pandas. (Little did I know they had only ever diagnosed a handful of cases ever and never treated). Let's see next the ears nose throat and the shrinks. All acting like pandas experts but again never seeing a case or willing to treat. All caring physicians, experts in their field and all delaying my dd's recovery. (Not to mention how scary all of these tests and doctor visits were for my dd) Months going by with no augmentin. I hope u find the doctors helpful where u r going, there is "some" more awareness now than 9 years ago when I went to my cities leading neuro who of course fit me in right away also. This is a horribly scary time, I am thinking of you and hope u find resolution soon, please though with the help of this forum get through this process as soon as possible and contact a pandas expert.

Formbrds ..... You need to get your facts right, no disease has been transferred from ivig since they now manufacture it and "scrub" out viruses. (over 10 years) Ivig is given to 35,000 children per month for immune defs, do the math over ten years, thats 3 million+++infusions with no disease transfer. I wish we could say the same safety results from our vaccine program. Several children have died from tonsillectomies in the last ten years, and none have ever died from ivig. Safe, is preserving your childs brain from permanent damage. IVIG is not a dangerous product, one can have an allergic reaction, but it is done in a monitored environment to handle such a thing. Far more safe than having your allergic child walk to school when they have a bee sting allergy or sit at lunch with friends with a peanut allergy. Before scaring people get your facts straight. Watching your childs brain be under assault because you check with an internet chat room for recommendations. No one should scare a mother from making the right decision that is recommended by her doctors.

Dr M rarely offers up ivig, and if your neuro is recommending it, your childs brain is under assault. IVIG is considered to be very safe and used by 35,000 people monthly in the united states with no major issues for the last ten years. Go with your doctors recommendation. My dd receives ivig monthly for the last two years, it is the only thing that has brought her back to us after 5 years of illness. She did abx and steroids but truly this illness, if it is lingering needs treatment. Looking back now I am still struggling with the fact no doctor offered ivig 7 years ago, we would not be where we r today had they. I cannot recommend it more if your child is suffering. You obviously have good doctors, listen to them.

Vicki, Wow love it. Can I send it to Don, or we both can, have his email. WE CAN SIGN IT FROM TWO OF HIS PATIENTS. IF YOUR ARE INTERESTED?

Looking for feedback on kids whom have regularly schedules ivigs.(Every three weeks, every other month, every month). High dose or not I am hoping to see how things are going for your children. Please comment on type of improvement, how many ivigs till improvement was first noticed, how long you have done regular interval ivig's and just your overall impression of what this therapy is doing, preventing, correcting. Thx so much for your comments. My dd gets ivig every 21 days and we are very pleased with this therapy. She has seen definate benefits and reduction in severity of relapse.

Thanks buster, I think I better understand your info now. Ur right kids selected were those with tic disorders. I know Gilbert use to use strep titers and correlation of symptoms and rise in strep titers to identify those he felt had pandas. My dd never had strep titers, so she was eliminated as a possible pandas diagnosis. They really don't get it do they, even after my dd at age 7 was hospitalized for 9 days for refusing to eat, felt spiders all over body and was close to psychotic, then she got suddenly better for 2 years and again another dramatic personality change and small tics, plus serious intrusive thoughts at age 9, plus frequent urination, but no strep titers. Gilbert said no way pandas, measured step titer for a year on her on and off, anxiously trying to correlate her symptoms with titer rise, never happened. This study had wrong selection criteria. Thx.

Buster, Gilbert had 6 kids he felt had pandas in 2005. R u saying all these kids were from 2002? I know Gilbert serparates his pandas from his TS. R u sure these were TS only kids cuz in cincinnati there were definate pandas kids around Gilbert and diagnosed as such in 2005.

Oh, he's smarter than that, verbally says Pandas, but writes as diagnosis tic disorder and ocd.

I think they may start aligning, but many r going to go down kicking and screaming!!! Gilbert last week diagnosed a child with pandas but told mother to try and get abx from pediatrician. Would not prescribe himself, talk about going down kicking and screaming, diagnosing but not treating. Life is totally different now than 7 yrs ago, many now know of pandas. But I think identifying, diagnosing, and treating will still be done very reluctantly by our main stream neuros. CBT will be pushed, even though finding a doc who truly specializes in CBT is very hard, abx will be denied, and ivig will be reserved for the most severest sudden onset cases. We will need to keep fighting for proper care. I do believe though, and I think u are so right, first they must discredit pandas before renaming. Its done all the time in medicine, nothing new. CYA or politics. I love the internet though, it is truly challenging the way docs do business. Information is now available with a push of a button, we can challenge them and they better get use to it cuz the educated patient is growing in numbers.

I do not think any of these guys needed more papers published, Gilbert, Leckman, Singer, no not really. This data has been around a year or longer and I am not sure what the study is trying to say, other than abx is not necessary for pandas. That kids with positive throat cultures do not have symptoms flair. Seems odd to look at only throat cultures, last time my dd was in er they wanted to do a blood culture on her, said immune deficient kids don't test positive always on throat culture. All this about strep, proving the strep cnx. Reminds me of autism, all studies funded were to prove vaccines were safe rather than finding treatments for autism. If these guys agree this is autoimmune let's move it on, and start studies that look at the immune system, not throat cultures. Its like trying to find the trigger for RA, LUPUS or MS all have multiple infectious triggers, but no one really cares too much about that. Ok so tics and ocd are triggered by herpes, myco, strep, staph , sinus infections, flu, lyme....All this genious, our best neurologists, I think we should expect more.

Rebecca, Thx for a lot of good info. My dd is treated at a BMT center, they have treated oms at this center also. You are so kind to come on line here and tell us about these drugs. I know rituxan has been mentioned to me, only as a last resort and only if my dd is officially diagnosed with lupus, right now she has pandas and other immune problems that appear to be lupus. You and ur dd have been through so much and I am glad u r seeing some results finally. Thx again for coming on here and sharing. Autoimmune drugs for pandas seems like the next rational step of investigation. Lots of hope!

Politics, but in the meantime, how many pediatricians whom do not know the history or politics behind all this will discontinue abx and show paper to parents as justification that Pandas does not exit. Why can't the naysayers just admit they were skeptics, short sighted, and just plain wrong in not investigating and treating this as an autoimmune condition. They still owe many parents an apology for their lack of care. Changing the name, they maybe able to fool their patients with this, but they cannot fool themselves.

Yes, in the evening, low lights, soft music, epsom salt baths, quiet talks while she is in the tub, head rubs and back rubs before bed. Also small amounts (.3mg) 2 hours before bed of melatonin followed with .3mg at bed. (Chop a 3 mg tab into ten pieces). Anxiety is always worse at night, limit conversation and stimulating stuff(tv, games, playing, )Did this three years, yes three years and it saved our evenings.

Thx Pmom and vicki!!! You have helped so many! Hopefully with all this press and additional research you will be the catalyst to additional funding and treatments.

Yes, dd's igg levels are now pretty high, definatey over 2000, but still not sure if she iS maintaining a high enough level for entire time before next infusion. Will be testing igg trough levels in Feb. She just increased her dose again, and I can say that with the hydrocortisone (40 mg)she gets iv before the infusion, her side effects from ivig have been minimized. She also now seems to look forward to her infusions, since no more head and neck aches. She had used prednisone in the past which didn't work like the hydrocortisone. Could not recommend enough for all getting ivig. My dd has had ivig for over a year now, and last two infusions she received the hydrocortisone and it has so helped with fatigue, mood, neck ache, she fEels great. Also recently switched from high dose zith(500 mg per day) to augmentin. Change has really helped with her diahrrea, and stomach stuff.

Percent Iga content can be different with each brand. Can cause reaction. If you need to switch then you need to, but most docs feel if it ain't broke don't fix it, switching brands means you may be at risk of having an allergic reaction again. (Just like a first time infusion).

Vicki, You have done so much for so many on this forum, always greeting newcomers, supporting mothers in need, and of course all ur effort with the pepsi project. Its always a very comforting part of my day, reading your supportive words to everyone. Thanks!

Emerson, you are so right!!! But sometimes we need to be direct to protect the innocent parents and children whom may knee jerk from something written on the forum. We are fighting for our childrens future, and if we are posting on this forum we are also advocating for everyones children and our grandchildren. If someone is giving mis information it needs to be challenged.