billn

My daughter had a nice Labor Day weekend at grandparents with the couple days at the beach. But she wouldn't take the antibiotic because they were only providing water and she gags on the Augmentin requiring Apple juice or milk to get it down. I learned about this three days into her holiday and strongly urged her and them to restart the twice a day antibiotic. When she got home after day six I found she'd only had four doses and had a sunburn. She also was in a bad bad pandas flare. I've got her back on meds she's getting better and I hope this didn't screw up the ivig.

There indeed seem to be very different ways in which the behaviors of pandas are evolved and devolved. In particular the experience of the flare being produced by contact in play with a child with strep. Rather than months or weeks the ramp up of symptoms is in hours and the ramp down is in a few days. This suggests mechanisms similar to the changes that occur because of fever rather than swelling or lesions being involved. ------------------------ All my comments are general observations meant to draw the bounds of my question, they are not based on a knowledge beyond what one can read in these forums.

There is a foggy suggestion that IVIG for pandas takes time to work. I am guessing there is some data available which can be used to plan recovery after IVIG therapy. Someone working with this, such as the people doing the Yale IVIG trials, probably have compiled this information which would be useful to me advocating for my daughter with physians who lack expertise in this and well meaning bureaucrats. I imagine a process overlap for the healing: - Reduction of antibodies production. - Die off of current antibodies doing damage (45 day half life?). - Healing of lesions and inflammation in the brain (1-2 year?). - Re-regulation of dopamine. - Unlearning of bad OCD habits. These processes occur at various rates depending on the person. There ought to be some slides per table summarizing current understanding for this process.

She is getting up earlier, 6:40 this morning, compared to 9:00 or so before. She can get into and out if the car more quickly with less ritual frustrations. She seems more relaxed and seeking social engagment, seeking to affirm me. But what do I know, it is just day 9

Migraines seem to be over, day 5 post IVIG.

Two days of infusion done, gamunex-c 5% 800ml bag using nimh flow protocol. No problems during. Some nausea 3hrs after getting out, and migraine. Any oils or help for this?

If incidence of pandas is as high as 1:40 among white males Then IVIG plasma donated from 1000+donors contains how much pandas antibodies? What am i missing here?

Going in this morning for IVIG, dd11 (Taking deep breaths, thinking goid thoughts) Wish us the best

I now have a prescription for IVIG, which I believe is the next step in treating my daughters autoimmune encephalitis. Dr. Harry Chugani and the other doctors working with him were knowledgeable, patient and sought my participation in the interview. At this point I believe the money I spent to get the Cunningham panel may be the best investment of my life. Her credentials and the data cut through all discussion and made it a very simple conclusion to move on with IVIG.

Thank you for your encouragement, on up days it's fairly easy. It has been a long day. My daughter cried grievious hurt tears during "counseling" when her counselor wouldn't submit to her OCD requests. She has such deep deep grief that she doesn't usually let out from the loss of her mother and the frustration of pandas making the world so fearfully hurtful. I wish the system of well-meaning practitioners could be as quick to administer IVIG as CBT. I wish somehow we parents and the practitioners could experience the world from their viewpoint to better understand how to help them while they are inflamed. My special thanks to the people at Moleculera Labs for taking time to listen to me and give me links to support sites. I just read about Tessa Gallo at the Stanford site, the pans suffer mis-diagnosed as bipolar, and find it yet another incident of how things are slowly being improved for treating these children. I will keep you posted how things go in Detroit with Dr. Chugani. Having spoken with his people I get the impression they really care about pandas as well.

We are off to see Dr. Chugani in Detroit on Monday. The Cunningham panel in May confirmed PANDAS antibodies active despite five weeks on augmentin. Has anyone had contact with him to know if he is familiar with Dr. Cunningham's work and understands this test? I want to get my daughter through an IVIG treatment and see how she is. I've waited since late March for this .... It is hard work having to both care for a sick child and get a simple IV in the Midwest. The pressure is intense to forgo my plan: letting her heal before psychological therapy. The non-acceptance of biological cause for pandas behaviors. I guess this is the penalty for living in the Midwest. I have found daily application of doTerra's aroma touch essential oil kit plus frankincense seems to have significant benefit. I see how she does without, behaviors become more restrictive.

They want eight weeks at Rogers, away from me away from home before exacerbation controlled. I just want a chance for my daughter. A chance for her to heal among familiar things. Loosing her mother, suddenly being debilitated by this autoimmune encephalitis, suffering misdiagnosis and inappropriate therapies which bully her.... She has had a hard enough time already. Just give her a chance to heal. It has only been three weeks on AUG1000 XR. Just give her a chance to heal.

My daughter continues to get better, however she had her down time when she caught a stomach flu virus. As that fades she's coming back with the help of essential oils. Before the pandas was confirmed with Cunningham panel an unnamed University Hospital had referred my daughter to a intense OCD clinic which now has an opening. I have been given a one-week notice to take my daughter, who has intense attachment anxiety, and leave her alone at an in-house facility for an eight week ERP. It does not make sense to me to begin therapy before IVIG, before the biological cause of her OCD is treated. Correct me about this someone please. ERP therapy when a person has active antibodies attacking neuronal tissue and causing elevated dopamine would seem to be the same as putting someone with rheumatic fever activly inflaming a heart on the treadmill to build up their stamina with aerobic exercise. Or a person with rheumatoid arthritis being put on weight training with their joints are inflamed. Somebody please correct me if I'm missing some important point. Just because medical doctors won't talk with psychiatrists and work together doesn't seem to be a reason to place my sick daughter into an eight week session of forced thought modification while she is ill. I believe she needs therapy, but I can't see that beginning that until after her inflammation has decreased. Can somebody please help me? I'm getting a lot of pressure and I consider this course unconsciencable.

Once again my daughter is beginning to get better, but this time it's taking a higher dose of antibiotics. Day 12 on aug 1000 XR 2X/day I'm also giving her oregano tablets Assuming that, like in March, she gets better each day I am hoping that in three or four weeks she will be much more functional.

Another sleepless night. Two weeks ago Cunningham panel came back positive for Pandas D1-2000 D2L-8000 Anti-lyso-40 Anti-tubulin-8000 CaM-K-163 These results after (following) augmentin 500 2X day for 4 weeks Followed by 10 days at augmentin 750 2X day I am pleased that pandas is confirmed, however based on her behavior and her improvement in March when given 26 days at 500 Augmentin twice a day I'm hopeful for better results than this. Why would she not now be as functional on 750mg 2X day? Did going off antibiotics for 3 weeks in april affect the pandas somehow making it harder to treat? Shouldn't the titers have been very low given that she was on such a high dose of antibiotics? Three weeks have passed, a family vacation etc., but issues remain to be settled before changes in treatment occur. my daughter continues to show OCD, fear, enlarged pupils, sensory oversensitivity, emotional lability and defiant behaviors. Is a higher dose of Augmentin ever used for Pandas? Can damage occur with extended use? One treatment path includes psycotropic drugs and in-patient intense OCD facility. How is this best coordinated with anti-biotics and IVIG? Before, during or after?.

The first meeting was last Thursday, the doctor made a great effort to make this possible. History was discussed, and my concerns about pandas. Antibiotics are continuing, and testing (cunningham panel) etc. My concern is that I lack the experience to judge how much of the issues are due to pandas and how much to the accident TBI and PTSD. What I saw in March when she got better on antibiotics makes me think it's mostly pandas but that's a very very very hard sell I'm finding.

Will see pandas experienced doctor tomorrow.

After two days she sis till having some trouble but at least no fever. She says that she feels very tired. 1) assuming this was viral what would be helpful to speed her health? 2) if it was not viral but rather hiding resistant strep is there anything I can do between now and our first neurologist appointment next week to help her?

Ah ha. .... 99.5 fever along with the flare. Thats wit an advil in her. For sure something is going on. Fiddlesticks. Update 9pm: the fever abated and the pans flair decreased substantially. I think i saw this sort of thing a couple of times before in previous months but didn't know what it was. It is nasty that flu or a cold will also set off her symptoms. Will see how she is after a nights sleep

I desperately want to keep as many professional resources open and available as I can, you can call this diplomacy. It amazes me how so many are using the 2010 white paper which is almost completely contradicted by panel discussions such as the April 2014 pandas breakfast with the key players speaking. The appointment with the psychiatrist went well but he was quite unacquainted with pandas. He did say "if I were a parent my child got better on anabiotic's I would act according to that information" or something to that effect. Unfortunately because of virus or stronger strep my daughters now flaring while on the 500x2 augmentin. Yesterday she had an OCD panic attack such that I had to carry her limp to the car while her tongue hung out her mouth and she made clacking noises. When this happens she loses the ability to select words and form sentences. She ends up sounding like some old movie version of Indian speak with backwards word orders like Yoda. After a couple hours she calmed down and was able to move her arms and legs again but her system was so upset she threw up everything she had eaten for supper including the anabiotic I've given her. I wish the neurologist appointment were happening sooner so she wouldn't have to suffer so much. I can't see asking the general pediatrician for more higher anabiotic those at this point. ( I did give her some peanut butter hoping that would help)

The neurologist appt is 10 days away. On Friday my daughter went to the park across the street, of her own will and alone, and played around the crabapple tree with the neighbor kids. This is 10 days after anabiotic started (for the second time ). She also spent Sunday with a friend raking leaves out of the garden. In many ways I can see she's getting better. Tomorrow I see the psychiatrist who eight weeks ago was telling me she had OCD and I needed to be ready for the long haul. I have now seen her get better twice (after being allowed to get worse by professionals who said they knew better) and I know of no circumstance where OCD is cured with antibiotics except pandas. I am not sure how I will cope with the meeting tomorrow, it is hard being thought a crank -A desperate parent and a crank. It would be so much easier if my daughter would perform like a monkey to an organ grinder and act completely cured. But I don't know any normal 11-year-old who would do such a thing much less somebody who I think has suffered so much already.

We visited her ped gp today and he agreed to bridge the 3 remaining wks with anti-biotics. So mid may we hopefully will meet with local ped neu who has treated pandas before and consults with dr k. I hope to sleep better in 2 or 3 days as my daughter is less tormented by her fears, ocd, sensation. However i would welcome meeting anyone in region, esp sb area, who has delt with this... Hardly anyone knows the horror and helplessness.

It is so sad how frightened she is, pupils wide. I wish I were 1/2 as brave as she is to go out into the world. Each day has happy moments and sad. You in the east coast are so lucky if you have at least trained ped docs to give pandas antibiotics. The midwest has a lot of catching up to do

any words from parents in the same position are welcome, I understand there are many options. I believe the practitioners here in South Bend are skilled and caring but with such a long lead time for appointments my child gets caught in the middle. if anybody can share their story of having to wait for a month while their child regresses and how they got through that time, and functioned, it would be helpful. If anyone knows a Pandos sensitive doctor in South Bend who doesn't have a four week waiting list that also would be helpful.

I am a very recently widowed father of a 11 year old girl who I believe among other things is dealing with PANDAS. I am interested in support/ideas which might speed the treatment of my daughter. In March her debilitating behaviours / fears / oversensitivities abated while on augmentin 500mg twice day for a positive strep throat culture. I didn't know about PANDAS at that time. Her 6 year history and bad OCD closely matches many of the published criteria for PANDAS. She had been better at the end of March, not so better I would say "all done" but better. However then the 20 day extended course of augmentin 500 finished and I could not get any more for her from her pediatritian. The contact with a pediatric neurologist who knows PANDAS has been made, but nothing sooner than mid May. I can reason no legal way to restart the antibiotics to relieve my childs pain and suffering. These last 2 weeks without antibiotics she's been steadily loosing the ground she gained. Is my only choice to watch my child suffer until mid May? Perhaps some others have been in this position, hopeful but helpless to help their child...