nevergiveup

Sub Q is not for pandas, your in good hands with Dr B. I am sorry your family is going through this.

Pandas is an autoimmune reaction to strep. There is a high correlation between immune deficiencies and autoimmune diseases. (I believe close to 60 percent). The immune def may have caused the panda reaction. Pandas is not an immune deficiency. Your child has low IGG and IGA therefore has an immune deficiency, but the pandas is an autoimmune reaction maybe intiated by the fact the she could not fight infection well. IVIG can in theory redirect the autoantibodies, but sub q does not do that. Push for ivig, sub q will only help one of her medical issues, ivig may help both.

I just want to recommend converting the sub q treatments to ivig. Sub q does not help autoimmune disease only immune deficiencies. But ivig helps both, my immunologists does not offer up sub q to pandas children. She treats many immune def autoimmune combo kids and none receive sub q. But many of her immune def only do receive sub q and and it is HIGHLY recommended for this. Insurance should cover ivig and the highest dose possible every 21 days for my immunologists shows the best symptom remission for autoimmune disease.

Alyssa, Thank you for that post, Go girl! U are so right about it all. My dd is 14 and has suffered through pandas for 7 years, we are on the same path, Living Life with Pandas. Thank you for your insite after reading your post I will now be a better parent to my teenager. You would be an awesome motivational speaker at the TS and OCD conferences in reference to living with Pandas. You could help so many families and teenagers by sharing your story and "philosphy on life".

Jag My dd is still trying to get through puberty has a year to go, we are late bloomers (myself and husband) so not expecting puberty till she is 15 or 16. She recently has some acne, beginnings of puberty, I wonder if her acne would be much worse but since she is on azith I think that definately helps reduce it. I forgot to mention dialated pupils, my dd had this from age 9 to 11 then again at age 12 before ivig. IVIG got rid of it, have not seen it for years. Just a mothers gut instinct, but the dialated pupils for me is an indicator of a current attack going on. I saw it for years so did my father, a physician, actually he is the one who pointed it out to me. After my dd's first serious attack at age 9, about 6 months post I was pleased with my dd's progress on pencillin vk and said to my father, "doesn't she look good" he responsed "no its like she is in a trance and looks right through all of us" , that was my first awareness of her dialated pupils. I can tell you Latimer looks for that, its like they are in a trance. JAG what are your plans next for your dd?

Momtopandas kids are young, my child is 14 started regular ivig at 13. My dd also gets about .92 every 18 to 21 days. Momtopandas you said every 21 to 28 days is it more 21 than 28? I noticed a big difference when we switched from 28 days to 21 days, her symptoms would return at about day 18. My dd still has some tics especially after viruses, but she is smiling, socializing, sleeping on her own, eating, engaged in conversation, school work is a breeze, her fatigue is gone, her adhd gone, her chronic infections are gone, she does not physically look sickly (bags, skin color). We will be testing her trough levels again in December and she will be getting another iga level test. I am going to watch that number and check with my doc about anti iga antibodies. Hopefully she will still have a raised iga.

Peglem, I will get you some of the data I have. Need to dig it up.

Yes immune deficient. But her iga was around 60 before she ever had an infusion. Now it is 80, ivig does not increase iga or igm like it does igg. I have been told that ivig will not help an iga deficiency. My dd has an igg deficiency. But ivig decreasing iga is something I have never heard of before and lower iga's are associated with neuro psych symptoms so....But anti iga antibodies, reminds me a little of the drugs I took for ms, (interferon) some people start producing antibodies against the drug, basically eliminating its effectiveness.

Wow a lot to learn and investigate. My dd has ivig every 21 days and her iga is increasing not decreasing and she is receiving gammaguard SD, lower iga ammounts. But if your childs iga is decreasing after ivig, this sure would make you think they are producing anti iga antibodies. But can we assume if iga is increasing, no anti iga antibodies are being produced?

I have to say, after 7 years of working with my family, all the physicians, I guess it has paid off. My fathers office had their first Pandas Patient, with immune deficiency come in for help. He seemed thrilled to tell me. They are working with a specialist out of New York, whom treats many panda kids and is suggesting 2 high dose IVIG's and then lower dose to handle immune deficiency. For all of you whom know me, my dd's struggles were very difficult but I also had to convince a family of physicians this illness was legit. It was a very hard time for myself and my family. (I felt abandoned) Now, years later My father proudly said, "my granddaughter has this illness". Can you imagine how "safe" this patient now feels just knowing her allergist immunologist docs believe in this illness, has a granddaughter with it and is looking into how to treat. I wonder if this mother has any idea how much all of us went through to get to this point. Its the small steps we all take that are creating change and hope for many. The so many nights of tears we cried to get to this point. The healing is slowly happening, both for my dd and for myself.

What a deal, I have an 11000.00 dollar deductible at 1800.00 per month for family policy. Small business plan, jump at this. UHC covers immune defs and ivig.

Jag,, Have you had the igenex test? If you are seeing bouboulis he will probably request the test. Long term abx or ivig, Marshall protocol, pex, all have shown helpful. Keep trying until your gut tells you something is going in the right direction. If your gut says ivig is helpful, do not knee jerk to several comments on this forum. Look at Chemar she is comfortable with her choice and treatment, I am very comfortable with mine, SFmom should change her pen name to "nevergiveup" she is determined to find the cause and cure for her children. Keith and Elizabeth sent me on my way to find my dd's immune deficiency (Thank you). But I am not following as of yet the her road towards lyme. You do not need to justify your decision to this forum. I know you know all info is valuable, but you know your child better than all of us.

At home but can also have in hosp, just cuz my doc is in charge of infusion center at hosp. Home care can cost about 30 to 50 an hour, depends on what you negotiate. Don't let them charge over, this is what they accept from insurance companies. My dd's infusions are approx 1500 per infusion for 25 grams, this is how much my insurance pays, hospital bills out 3000 approx for each infusion. You can get big breaks from Caremarks foundation, submit income and they will cut costs even more for (Caremark is CVS's group that handles blood products). You may be able to get your infusions for 1000 grand per month. Not sure how all this works with Bouboulis office, what type of rates does he charge with no insurance coverage??

No not necessarily, ivig may stop production or redirect autoantibodies (my doc says redirect is what the science is thinking) but as far as I know will not change b cell memory. So one year of ivig does not necessarily change b cell memory, redirects autoantibodies. How long and at what dose is a good question? I am guessing from what Dr L is seeing where older teens and adults are relapsing (college), no one may be totally ever secure it won't come back. My Neuro told me that he just saw a dentist who after 20 years of tic remission it has come back and is hurting his ability to practice dentistry. (Of course he doesn't believe in pandas). Anyway, what dose, how often and how much depends on the child and the disease course, relapses and other concerns like immune deficiencies and autoimmune blood markers, side effects of ivig, insurance coverage, and experience of doctor. As a mother, I felt it was necessary becuz, my dd did "feel" ivig helped, and as her tics started to go bad again, she requested more ivig to help. We are hearing a lot lately about multiple ivig's on this forum. My doc says it takes 6 months of monthly ivig to see improvement in "autoimmune disease". (Not pandas, all autoimmune disease). And of course after years of clinical trials with autoimmune disease and ivig, they now know that high dose is needed to see clinical positive results for autoimmune disease. How long will my dd be on every 21 days infusions? My doc did her last panda kid 7 years, until the child was symptom free and relapse free and going off to college.

JAG, B cells keep memory for at least a year. One ivig will not alter b cell memory. Potentially with reexposure to infectious agent, strep, myco etc... The b cells with start producing antibodies again, it may be short lived or start the autoimmune process again.

Thanks again kim! Liked the ivig chart, wondering now about the different products and the diseases they treat, very interesting! Its very good to know no thermisol in ivig!

Msmom, my dd was worse after first one four weeks post, even worse at 6 weeks post with movement disorder, but it did help ocd a lot. My doc says for autoimmune disease it takes up to six months to see improvement, that's with every 21 day doses. So one dose may just not be enough, but for some even without more ivig doses they see improvement 3 to 4 months post. I know my dd has an autoimmune disease, I knew the ivig helped her ocd, I say her ana go from 2560 speckled to 80 centromere and her C4 go from 7 to 14. I saw her cunningham antidopamine antibodies go from 4000 to 1000. And my dd inspite of 9 days of asceptic meningitis, she asked for more (ivig) becuz she said a cloud was lifted, although physically she looked much worse with her movement disorder. I knew it was doing something becuz of her blood markers and her feelings. Although without those, I would have thought she was much worse! It was a very hard time. Especially when after years of seeing your child sick, begging for care and treatment, and it looks like it has not helped. This forum is very helpful, but this disease still has many unknowns, and causes and treatments may be different for some. Really fight for understanding of treatment(read,call experts) insist upon measurable markers of success or decline,(blood tests), never knee jerk from one or two comments on this forum, and always always always go with mother gut instinct. (listen to yourself and never let anyone try to convince you they know better than you. Done that and the docs were always wrong, pretty much every time)

Iowadawn, "often using it (ivig) for autism induced lyme". Can you elaborate on this??

I agree, don't feel touchy!!! Its all experimental. I recommend low first to adjust to side effects and increase dosage so igg levels are around 2000.

Kim, Really like the "rice" article you posted above, thanks for posting. The idea of us making 100X greater antibodies against recent illness and antibody diversity is very interesting and helps me to better understand the whole pandas reaction and how ivig may help create more diversity minimizing the overproduction of recent antibodies to illness. Vaccines reduce diversity, thereby weakening our ability to fight infection. Imagine that, so the more we give our children vaccines to diseases they will never be exposed to the more we weaken their ability to properly fight infections and virsus that they come in contact with. This is very similiar to what I have been hearing from docs lately, vaccines are weakening our immune system. Thanks for posting. Very interesting!

Guys, I am not a thermisol expert, but I know many on this forum research this topic. Recently read that ivig from baxter, is contraindicated for people whom are sensitive to thermisol. Called pharmacists and asked if ivig has thermisol in it and have never gotten answer. Is mercury in ivig? If so how much?

What makes you think inflammation means "lots of glutamate". You know Leckman found in TS that caudate and putamen (spelling) enlarged was an indicator for poor prognosis in TS. If both nac and riluzole are glumtamate agonists, how does a glutamate agonist affect dopamine. Do any of Cunninghams anti brain antibodies affect glutamate levels? Is it safe to say antidopamine antibodies disregulate dopamine? What does turbulin or the others disregulate?

Melanie, Maybe you can try NAC since it has similiar mechanism, if you see it helpful then it may be an indicator the riluzole will help. I put my dd on NAC and within 4 days she was a complete mess, lots of hyperness and tics appeared. So waited a month and tried again and had same results. Never have seen this in my dd before with amy drug or supplement, but I think it is a clue to what is going on, why would NAC stimulate tics?? Increasing glutamate does what to dopamine?

Let us know how it goes!!! This is great!

Tampicc, According to DR K ivig "could" fix him in a lasting way. And for the person who says ivig has serious risks, I would strongly disagree, for children the risks are very very small, you have a much riskier situation everytime you put your children in a car or give steroids. I would get all your ducks in a row right now, have an ent consult for the sinus issue, chronic sinusitis need long term abx like cefdinir or augmentin, this may help eleviate further panda relapses. Also, have you run the cunningham test, this is also a good test to run if you are running the igenex test. It does not sound like you have a pandas doc, I would get one on board now so you are comfortable that you have someone making the right decisions for you. Short term steroids may also help right now, instead of ivig. Speaking though from a mother who waited, abx for years, months of steroids for more years, one ivig, and now monthly ivig, if I could have done it all over again, And with what I know about ivig now, I would have treated her much earlier and much younger. Kids do better when treated earlier. Some do fine treated later, if it is first onset, but the longer your child is producing antibodies that are causing pandas, the harder it will be to turn them off. Maybe the cunningham test could shed some light on whether or not your child has very high antibrain antibodies and this may help you decide whether or not he is in remission or not. When my dd was admitted to the hospital in a psychosis at age 7, it got better fast, and I was so thrilled to see her improving, I just wanted to enjoy our time together and the docs gave me no direction anyway, ivig was never mentioned. No one understood this disease at that time. You have a wealth of info now, so I would sit tight for now, check for sinusitis, see a pandas expert, have all immune stuff tested and maybe get a steroid burst to see if you can get to 100 percent. Next relapse, which I hope never happens, I would get the ivig, maybe more than one, especially if it looks like SC, swedo's study shows three ivigs use d for SC.