nevergiveup

Let's see. Maybe its becuz my doc runs a lot of studies for gammagard, Soooo can't say its becuz of anything other than experience. I do know that gammagard tries to make donor pools exteremely large therby eliminating differences in lots ensuring type of antibodies are truly very diverse. I believe they pool over 10000 donors in each pool. Also I think docs look at recalls to deterimine safety record. I have been told that pretty much they are all good. I know switching products can be risky, can have anaphylactic reaction with new product. I know our homecare will not do first product infusions at home. Plus if Danny is sensitized by switching products, he may acquire an allergic reaction to all ivig products, so switch carefully, and if he has experience with any other product I would stick with that. Some say Gammunez having no sugar is best for kidneys, mostly a concern for adults and especially seniors.

Yes, being well hydrated DOES help prevent the migraine or lesson it. Go on gammagard web sites, or any immune deficiency web site, or cipd we sites, it is well known and well documented. I say more hydration than less, but please not overkill. I couldn't get my dd to drink too much anyway, she complains when her stomach is full. But normcal, yes hydration does reduce migraines, it is documented.

We have uhc and it covers gammunex, but we use gammagard cuz our doc likes it better. But it may be the contract they have with the blood supplier. If you change pharmacy, you may be able to get gammunex. Just a thought, we used caremark a division of cvs, we also can use walgreen home care.

Interesting. One thing I do know for sure, you need to be hydrated before ivig, it helps with side effects a lot. I am just not sure how much water is too much. I know not enough water produces MUCH worse side effects, my dd was in lots of pain when we didn't hydrate, now her symptoms are tolerable. How much is too much?

Serio types twice??? I can tell you first ivig was tough,(asceptic meningitis) second was so low a dose it did nothing. Third we started seeing improvement, more and more as we slowly up the dose. (Its been a year). Listen ivig definately helps, I would recommend it to all, so would my dd but you need to tough it out for sure, its not easy. As I am saying this, my dd is complaining of neck pain, she had her ivig today again! Second one this week, since she had a fever spike on her one a week ago and we had to stop infusion.

Do they give any indication how much water someone has had that could cause these symptoms. I am interested in how much is a reasonable amount and how much is too much. They say stay hydrated up to 30 days post ivig. Since my dd gets them every 21 days that's all the time!

No pandas protocol has been "proven" Swedo did an initial study looking at ivig with a one time dose. They saw an 80 percent improvement for severe cases. We will have to wait a very long time to see this theory proven, however, immunologists around the country know that for autoimmune disease this protocol "seems" to be helpful. A one time dose of ivig is not the standard treatment for autoimmune disease. For the younger children it may get rid of the autoantibodies, but for the older kids with chronic autoantibodies, then this protocol seems best to look at. I believe swedo is using children under 12 for the study, why becuz the most success is seen in the younger kids. Older kids tend to relapse, so a different protocol will need to be investigated, and from what I have seen this protocol seems the best way to start. Its not unproven, it works for multiple autoimmune conditions. What I find interesting is that for many autoimmune conditions that are now being studied with high dose ivig, none saw improvement with short term low dose ivig. And many saw improvement with one high dose, but the disease later relapsed. I guess the big question is should you wait till the child is in crisis and then dose them with high dose one time ivig, and then wait again until crisis. I have found waiting until my child is in crisis, even with ivig we have a long healing process. (4 to 6 months) and then with additional infection she relapsed again three times over the last 4 years. Leaving her limited time to enjoy life. Her symptoms always came on overnight and lasted a long time........ Each attack seemed to be setting her back more. I know of eight children on this protocol, one from the original swedo study from 2002. Dr. K's protocol was not proven either but he saw results so mothers on this forum started communicating his successes. Except he has much less success with his older children. I am letting everyone know there is another protocol, for older children that is seeing results. Dr B's protocol is like half Dr. K's and half this protocol. Not proven either but "helpful" I wish he would look at troughs and match them to symptom resolution because many physicians I have spoken with think this is key. He has a lot more patients than most docs, and he is doing ivig. So any Dr. B patients want to discuss this, I would like to. that's interesting... so over the course of time it's higher.. what happens at the end of 6 months....wait six months, assuming there will some ebb and flow(sawtooth) or is that not expected? i'm sorry, i don't remember if you said they check levels at least monthly after..i assume.. and maybe this will be the right way...i like the idea that if it didn't work at first, they kick you out the door and assume they can't help you...good luck do you know if the highlighted segment was discussed at the conference? but i don't want to see any protocal eliminated...i think pandas is more like baking than cooking... cooking, you can throw stuff together and as long as it's not under cooked, or burn it, anything in the middle will probably work or be ok.. baking is more of a science..so much yeast..not too much salt..let it rise..punch it down..wait an hour...4hrs is too long, let it rise again..etc.. and with every kid it will be just a littl different... that's why i think its good we discuss all protocols....i hope they keep them all on the table!! maybe in 20 years they'll have a beetter idea of who will need 1 or 2 or monthly or pex or all..or annually.. not that anything i'm saying matters...just rambling

No its not contra to high dose theory. It is a VERY high dose. Think about it one gram to one point tWo five grams every 21 days, that's 75 percent more than Dr B gives. A heck of a lot more than Dr K. If one ivig redirects autoantibodies, and they come back then many high doses maintains immune system so autoantibodies do not attack. If your body stops producing antibodies, ALL the time, becuz, you always have donor antibodies then how is this contra to high dose. This is high dose at its best. Its contra becuz, one insurance coverage or cost prohibited. But it is the autoimmune protocol seen to help lupus, ms, adem, autism, and PANDAS. I know three leading immunologists in major research centers whom have panda kids on this and they say "IT HELPS".

My dd had a set back on first ivig. Because after 3 weeks the antibodies start to dwindle, and if you have a strong inflammatory response to the high dose like fever, head and neck pain, you have made pandas symptoms temporarily worse. My dd does much better when her ivigs are symptomless!! Autoimmune diseases need regular ivig if the disease is chronic. Have cunningham test done again at about 12 weeks post. If antibodies are higher then your child may need regular ivig because his body is in a chronic state. My doc says that unless the child is in a horrible attack, chorea etc.... Then high dose is required to stop the attack and help child. If child is in a pretty good state then slowly adjusting ivig over several months is safer so as not to cause a infammatory reaction which can exacerbate symptoms. Plus this allows the childs body to not have side effects. It can take 6 months to get the dose upb to the appropriate levels. Levels appropriate to manage autoimmune antibody diseases are when the child has igg levels 1700 to 2000 all the time. This then prevents the fluctuation of symptoms and Helps prevent relapse and of course bacterial infections. I would not give up on ivig, not yet, just get an immunologist that handles autoimmune diseases and is familiar with the ivig protocol.

Low dose is not inflammatory, this is ridiculous!!! This theory has come about by an article in a medical journal read by some, but the article did NOT say low dose ivig is inflammatory. Ivig can take up to 6 months to see improvement. And if the child has a bad reaction to the ivig, then panda symptoms will be worse short term. It is prudent to start with a lower and raise to a higher, keep raising until symptoms and behaviors are minimized. My immune doc does several autism and panda kids, slowly increases doses so side effects are minimal, measures igg levels, families see behaviors remit around 1700 to 1900. These troughs need to remain high always. I would suggest you talk with doc about every 21 days, ivig half life is really 21 days. Your doc is doing a good thing right now by not starting out to high, a friend of mines child had high dose with pandas and autism, and had such bad asceptic meningitis the child was admitted to hospital for two weeks and very sick and in pain. Some kids just have a harder time than others. My dd had a very bad reaction first dose and I would say it was medium strength. Definately get up to about 1.25 or so but every 21 days, our doc sees this is better timing and again maintains troughs at the levels that minimize behavior. Although, many on this forum, get ivig, it is not done monthly, and mostly for pandas. I think you will find that with both autism and pandas the protocol is different.

Vicki, dd had same bumps last week, and I, but had two strep cultures and a blood culture and she does not have strep. There is a virus going around right now, bad sore throat, just getting over it. Hope this is what you guys have. Take care, if you need anything I am happy to help.

I completely agree with the NURSES statements! One thing about this illness is why did it became such a taboo? Swedo studies looked promising, cunningham studies were so helpful, the political backlash from Hopkins and Kurlan, and others was overwhelming. Why, did Hopkins try so hard to discredit this illness. Why didn't the TS national foundation invest in more studies, the initial study was so promising.

My father has never written a script for my dd. Never. Now for me well yes, he is my doc has been most of my life. My father does help with my dd's tests and talks with her docs but this stuff is way over his expertise. Although, he refers all his ivig patients to Hopkins, immunology. One thing for sure, we have had lots of immune testing done on my dd, and it has helped tremendously in securing doctors whom are willing to help. My dd has multiple autoimmune and immune deficient blood markers.

Hey I know, my father is a doc in Philly, kept saying let's go to CHOP. Dr L last year said CHOP does treat. I already knew my child would be sent home from there, but my point is in my big city where I live, our prestigious hosp wouldn't even doPEX.So they were one small step ahead of others, somewhat believers I guess. Docs do not know how to determine Which kids have pandas, versus TS versus OCD. If the white paper does not help qualify how to distinguish WHO has this disease, I am afraid we will all be in the same situation we are in now, trying to convince docs our kid does Have pandas.

Scary, I worry everytime my dd gets ivig. I am glad he is ok.

I am not advocating for these large hospitals, I think none really wanted to be the leader, except CHOP was one of the few that did have a pandas expert Dr E, whom would in very serious cases give PEX, she even published on this, I believe it was Ellen's son actually. But none really pushed for change, we did and Diana did, and our docs did. But then again we truly do not know what Dr E said at the mtg and whether she was a strong advocate for more care or not?

Eamom, Chop treats with ssri and anti tic meds and in severe sudden onset with pex. No games. Why would you talk that way about them, they are no different than any other doc. Your doc doesn't treat every child with ivig does he??? Is he inhumane? CHOP does not do ivig for pandas but does for a SC diagnosis. Why are you so critical of this type of treatment. Its better than in most places where you get nothing.

I heard Dr E was at the mtg. In Jan. didn't know Cunningham tests, rather strange. The study on the antidop antibodies wasn't published yet, but I saw a rheumotologist that not only knew study in February, had new data on antidop antibodies and the control. He knew all about it and it wasn't yet published. And he was a non believer somewhat. Dr E had to have it, Dr. Murphy, in florida knew for sure. Weird.....

CHOP may sound like a funny name, but the clout and prestige it holds nationally for children's medical care is impressive. Yep, that's my fear of the white paper, that unless kids are caught at intial onset, immune modulating interventions will be denied due to lack of success.

It got controversial becuz I suggested that it may be short sited of us to assume she was referring our major 4 docs on the forum. She used the word qualified, and let's face it she is a neurologist. Who really knows, but I think there is a whole lot of stuff we really aren't privy to, even though we think we know so much. (We do know a lot thoughn but b cells, C4's Antidop antibodies, how ivig works, the brain and the immune system, its very complicated!)

Ok who was the mom, phila... was told by CHOP PEX was required. I believe it was about 3 weeks ago. I could go on and on like this... Remember the mom from new orleans last fall who's son got H1N1 and had pandas and went to to the ER and was admitted and given ivig for ocd and chorea. Ok and the same docs that said my dd was not severe enough to have ivig, showed me videos of the kids that are allowed intervention of ivig at our childrens hospital five years ago! They just offered my neighbor ivig, for his brand new diagnosed pandas son last week. Pandas is what he was diagnosed with. He is not as severe as most, but was offered. The same doc that offered it up doesn't believe in pandas. Clearly, the new name will reflect what they do believe in, but it ain't pandas.

Tenacity, your story of your struggle to find care mirrors mine. I just know there are docs out there that treat with ivig and pex. More than we realize. Many on this forum do not publish their docs names.

Back to the group think again, huh guys, and bullying normcal, its not the four u think it is. Ask Dr L that question. And for all those using her name including start of thread plz remove her name from the posts, its against rules of forum. Use Dr L instead

Really, Dr B was auditing the mtg, not a player, a learner. Its good he went, but again, CHOP was a major player, and swedo(couldn't she be one of the docs Latimer says uunderstands this illness, how about Tanya Murphy heard she was there, was major NIH player now sees pandas kids privately. Please we all need to be more opened minded. This forum is having some "group think" stagnation. There is a whole big world out there and we do not have all the answers, at least not yet anyway. I have been around here over 5 years, and yes we are getting somewhere but we still have a long way to go. Actually I believe that was the final agreement from the mtg, we still have so much more to learn and understand about pandas. I believe, the exact words were "after the mtg qe all realized there is more we don't know about pandas than we do".

Tenacity, What is always the common theme on mystery diagnosis, the patient fighting like ###### to figure out what is wrong. My neuro told me he has thousands of children he has seen with unknown disease and issues, thousands!!!!! We are kidding ourselves if we do not believe that our "tenacity" does not get our children better medical care. But on this forum we seem to think we live in a vacuum and smart intelligent researchers and doctor out there are too stupid to "get this illness". It has nothing to do with that and a lot to do with liability, professional isolation and cost and payment. BUT they do HELP many kids in crisis, right now, in many places. And our four major docs will not be the leaders in this illness, and are not even now the leaders, once the green light is given to CHOP, HOPKINS, etc....we will finally see what all these docs have up there sleeve. Even b cell drugs, my neuro wants better drugs targetting the immune system, not ivig.