nevergiveup

SFmom and Mom2pandas, I am very concerned about the immune def and cancer connection, and it is why I am treating my dd with ivig. She has had 41 sinus infections, multiple pneum, low C4(7), low overall IGG(400 for 14 year old), which by the way now is the only indicator of immune defs, leading immune docs don't test subclasses anymore, they consider the data useless. So only low overall IGG's are indicator of immune def, usually seen with low IGM also. Even the pneumoccocal testing is going to be considered irrelevant soon. My dd also has incredibly high ana 2560, and high anti dopamine antibodies 4000, cam kin 165, and was in a b cell maturation study showing her b cells are attacking her body. She was first diagnosed with SC 7 years ago. WE live in Ohio not the mecca of Lyme. But low C4 and high ana are found in lymes, and yes I was diagnosed with ms. So I will go get the igenex test for myself, since my dd cannot get the test being on ivig. SFMOM, what does ur fatherinlaw think of all this lyme and congenital lyme talk. He seemed very involved with ur pandas decisions. Also if IVIG caused extreme herxing, why would that not be good and at some point u should see benefit from that???? What causes herxing from ivig? Is it killing off the bacteria? What happened to the other children that attending the playdate with the child with rheumatic fever, do they also have any Lyme? Are any still struggling with Pandas? Why is LaurenJohnsonsmom doing high dose monthly ivig on Lauren with Lyme, I guess ivig is a treatment for Lyme. And why will u not consider ivig for future treatments since ur son did so well with it? Thanks

What are they uncovering? I wish they would keep these type of reality show with adults only. Our children deserve better.

Sorry, I am always rushing! Last winter, many of us KeithElizabeth, Coco, and others were intitiating monthly ivig, some kids proceeded to have bad symptoms increase with each monthly ivig. This led to some phone consults with Dr. K where he stated monthly ivig especially low dose can "stir up" the antibodies(another infamous Dr. K scientific term) So out of concern many stopped low dose monthly ivig. However some didn't(my dd, Shaesdd, melanies son, peglems dd) Now we have the lymes issue surfacing, and many of the original monthly ivig'ers are now treating for lymes. So what I am thinking is before ivig, everyone should test for lymes. Nevergiveup - I was a little confused with your post because the quotes did not work out right. Are you saying that you do NOT think monthly IVIG is automatically dangerous... but it could be a problem if there are underlying lyme or other infections?

The lyme has really muddied the waters for me. I am not sure which way to go. After all, many of our parents have found out their children may have lymes and also parents have it. All of this discovery is great, and leading to better health for our children! I am still stuck on why multiple ivig is harmful to Pandas patients. I do not see any cases of this, now that we have eliminated the lyme component. Plus Dr K gave three ivigs to SFMOMs son who saw great improvement. (Although now may have lymes too). Co infections are crucial for resolution, so maybe ivig is all wrong. It appears many just need abx, like Murphy thinks and Saving Sammy. Is this all infection, and not autoimmune? Now I am really confused? If u feel coinfections lead to immune def's then maybe ivig is ALL wrong. Is this why Trifilleti calls ivig a cooling off and pushes abx, multiple types like cefdinir and biaxin?

Exactly, all of the families whom were having trouble with lower dose monthly ivig now either have lymes and I believe one had IGA concerns. So many on here have come to the understanding that monthly ivig is hazardous. One thing for sure from all of this BEFORE u start ivig get the igenex test. But now we all need to rethink the monthly ivig issue. Was it lymes, and coinfections that caused Dr K to say monthly is not working?quote name='KeithandElizabeth' date='06 September 2010 - 01:41 PM' timestamp='1283794914' post='82719' I know of several families where the monthly IVIG's seemed to either stop being effective or seemed to create more symptoms. My theory, and this is just a theory, is that these children had underlying chronic infections and maybe the IVIG's were creating too strong of a herx reaction or "stirring up the antibodies" too much. Granted, 5 out of these 6 families had lyme or bartonella or babesia as an underlying infection. My son did great with the first high dose IVIG and then we started doing monthly low dose IVIG's and he eventually started to backslide (after the 3rd low dose IVIG) and then we finally did one last high dose IVIG and stopped 7 months ago and instead added a second antibiotic for lyme and he is doing fantastic now. Dr. K and our lyme doctor thought that our children's failed S. Pneumo titers and low IGG's were the result of an infection versus the cause of the illness. My daughter never did have an IVIG and I plan to retest her Cunningham levels (which were all very high) as well as her S. Pneumo titers (she failed 13 out of 14) and her IGG's in a month when she finishes her lyme treatment to see if they have improved with just the multiple antibiotic treatment. I think this will be interesting to see since my son is the one who did all of the IVIG's and we went with an entirely different approach with our daughter. elizabeth

MomWithOCDSon, thanks for a summary of Dr K's experience and background. From what I do know about the NIH mtg, many left the mtg realizing that we really don't know a lot about this illness, getting better info but still have a long way to go. I am still looking for info in regards to monthly ivig versus one. To be realistic, how can most afford monthly ivig without an immune def diagnosis, and what data could Dr. K have on this since he hasn't had patients whom can afford a 100,000 dollars a year treatment. I know Melanies immunologists, my immunologists and one more I consulted in Florida, whom have better success with regular immune treatments. So again, if u talk with Dr K any insite into his info data would be great. I really want to understand if his thought process doesn't want to scare the parents or send them into bankruptcy so trying one ivig or two may be best. But saying multiple is harmful needs further clarification since many parents have kids with immune def's and are looking for better answers.

Sounds a lot like my dd's pattern of illness she is 14 now. Thanks for the reply.

It is somewhat helpful, he is going with the assumption that the sialic acid found in ivig at a high enough dose turns off production of antibodies. And after time the bad antibodies are not produced any more. But some feel ivig may also redirect autoantibodies by attaching to existing antoantibodies. So I guess he only believes in the sialic acid mechanism of ivig. So if our children do not stop producing bad antibodies then ivig will never work? Is this his assumption? So why not constantly shut off the production and substitute with donor antibodies. Like in CIDP monthly. Its a very high dose though? I heard IGG levels must be around 1700 to eliminate autoantibodies. Apparantly this number is used for Other disease. Has Dr. B ever measured igg levels in between his 8 week high doses? Still do not understand the "harm" part. If we know our kids have autoantibodies from cunningham how can more ivig harm them? Does Dr ' use cunningham test as pandas indicator? In t

Can someone plz get to the bottom of all of these medical assumptions Dr K makes, we on this forum ask for real science from our docs everyday, yet for years Dr K has non medical terms and assumptions we never get any explanations for. How exactly does he think ivig works? What the H*** is turning back of the pages? Do other autoantibody diseases see this type reaction from ivig? Why would one be ok and two make u worse. If high dose is antiinflammatory and one doesn't help, how can two be worse? Why would monthly ivig hurt our children. I know of several kids whom are in complete remission from monthly ivig. Please Dr K patients, what does he feel ivig does to cure the child? I am a little fed up with all of us challenging all the other docs, Singer, Swedo, Triffelti and Dr L but we always sit back and get NO SCIENCE answers from Dr K and we never push him for better understanding? Is an 80 percent cure the best to expect? How many kids has he done multiple ivigs on? All other autoimmune diseases see success with more ivig rather than less. Even in Swedo's study of SC the kids had three ivigs, until they saw improvement. I am anxious to here some of these answers. We all need better direction and scientific assumption of why or why not.

Tics got bad, very bad, still have tics 14 months later. More come and go type small tics now. After ivig approx 4 weeks her movements were large and strong. I still wonder why ivig helps some with tics and others get worse. Now my dd gets monthly and we see tics minimized after each ivig and then return stronger approx two weeks after each ivig. I think dosage and timing is everything. I wish we could have cunningham measure pre and post ivig to see what is really happening 6 weeks out.

Are u talking about Phenergan(fenergan spelling) That anti nausea drug makes some people go completely crazy, like u have things crawling all over ur body, like u want to shake all over. Does it to about 5 percent of the population. I was given it once in the er and within seconds I felt weird, they quickly injected something in me to counter the drugs reaction. I cannot image being on plane after taking this drug and have had this reaction. I would have had the plane landed.

Yes we did one 5 months after ivig and her anti brain antibodies and cam kinase was higher than the one done 2 months after ivig. Much higher. But her symptoms were also increasing. She then got more ivig becuz we knew she was still making antibodies and was getting sicker again. We also changed and upped abx. We are currently doing another since her symptoms are minimal and are very interested to see results. (Have not done one in a year)

Momto2pandas, did u have any tics? Did they resolve? How many episodes or sudden onset attacks do u remeber. Ur background gives us all hope!

Thanks

Chronic psychiatric disorder. Now I feel sick.

I absolutely do not agree with one treatment, I am with u there. U and my dd have very many similarities, first she is one smart girl, (like u) and second she also has a lupus like illness and has been on multiple doses of steroids from her rheum (age 10 thru 12 like u. She had her fist ivig and regressed but laterimproved. She has had over 41 sinus infections and now gets ivig every 21 days to prevent infection and to target her antidopamine antibodies. She is now 14 and still has some tics and I believe is now suffering a little from PTSD from all the docs and the fear of another attack. I would highly recommend trying apri or myrcet birth control it is a high progesterone birth control pill that offers some brain protection too. If the cream helped the pills may be great. I am sorry for thinking u were a mother, we can all learn so much from u and ur experience. And no u do not have permanent brain damage, u in most docs eyes would be a success story. If doc b finds an immune def would u consider monthly ivig? Ur supplements are great, my dd takes them all except the tumeric. Have u ever tried augmentin, they say it helps with tics? Thanks for sharing, and I hope u can understand my misunderstanding, so many moms are currently told mis truths by their docs and believe them. I get frustrated when I think that kids are not receiving proper treatment. October 1998- Ear infection- 6 weeks later developed OCD. At the time PANDAS was basically unheard of so doctors treatments me with SSRI's which more or less made me absolutely crazy. February 1999- Developed a strep infection, OCD was off the wall and developed tics (very debilitating) treatment 1- (age 10) Steroid Burst for about a month- Helped but no where near enough. I was still more or less handicapped treatment 2- IVIG- had a huge exacerbation of symptoms at first and then slowly improved but again it was still no where near enough. treatment 3 Pulse Steroids- That was the treatment that put me into remission. The rhematologist treated me as if I had lupus because the two diseases are similar. This is why I question what you posted about sweedo's study because it took 3 HUGE immuno-suppressive treatments to get me well. I don't mean to attack you in any way. I don't want it to come off as that. In college I had trouble dealing with PANDAS, so i stopped taking all antibiotics and vitamins while trying to cope with the fact that I have an autoimmune disease. (didn't want to believe it etc) Looking back now that was extremely stupid. I had repeat sinus infections because I didn't take the zithro like I should of and my symptoms worsened. I had sinus surgery and haven't had an infection since. I also had my tonsils and adenoids out. I'm well. I'm not where I was after the repeat sinus infections but still fine. I might have another round of steroids to calm things down from the repeat infections. I'll have to see how things go this year. I live a normal lie. I graduated college with honors this year(didn't need an IEP after middle school) I have symptoms when I'm sick and a lot of symptoms during allergy season. I'm going to an immunologist in October to try and understand PANDAS better. Things I take now: D-hist B Complex Tumeric Fish Oil Probiotic 1 advil a day Ceftin- 250 daily Zyrtec - Might have to switch to Zxyal because I'll be living in Europe and Zyrtec has been discontinued. I am contemplating allergy shots. My tics flare up in the middle of my menstrual cycle, during allergy season, and when I get sick. I only noticed the problem with my menstrual cycle when I was not taking the vitamins to reduce the inflammation. When I started taking better care of myself again, it was much less noticeable however natural Progesterone did help me. I also stay the heck away from vaccines and flu shots. Dr.s I saw: Dr. Triffelti, Dr. Karen Onel, and I'm going to see Dr. BouBoulis in October for the allergy problem.

Wow, sorry. I have the same guilt. Everyday

Do u feel u are in remission? Allergies definately increase panda symptoms, may be stuffy nose causing more strep in the nose area? Have u ever done ivig or pex? Do u feel ur symptoms are manageable with ur treatments? What type of exercise do u recommend? What is recommended for preventing future attacks? Anything besides prophylactic abx? Because my PANDAS case was so severe and debilitating, I always had to be on antibiotics after being treated at NIMH. I was on penicillin back in 1998 for a while, then I was on amoxicillian, then zythromax (sp) (however I had repeat sinus infections on Zithro and sinus infections exacerbate PANDAS)so now I'm on Ceftin. I did have sinus surgery and my tonsils and adenoids out to remove all possible triggers for PANDAS. I haven't gotten strep in over 12 years. I also take a combination of anti oxidants that work very well for me. Make sure you eat healthy and exercise as well. The supplements I take are: D-Hist Fish Oil- Tumeric Probiotic- 1 advil a day- Vitamin B complex and zyrtec. Also you should know that Allergies are a huge trigger for PANDAS. This august I've had a lot of problems because I have very sever allergies. I am going to talk with Dr. Bouboulis and will possibly get allergy shots. I will let you know if that helps or causes any problems.

Not u, airail95 said that there is no long term data. I didn't know it was you, u are referring to. Ok, so now I better understand what ur question was. I am never sure if it is a mother listening to a doc that is saying do not treat, and the disease is self limiting and will not hurt their child. I am not up to date on everyones history. What treatments have u received?? What sucesses have u had? Which doc do u see? What are ur symptoms?

Peglem, Completely agree, thats what I am banking on for my kid. Healing. Healing from her brain assault. But more key is preventing future attacks. Becuz I do beleive the kids can heal from the brain damage, but preventing future attacks is sooooo key to their long term success.

The question was not whether these kids will have long term effects, it was whether they have "brain Damage" And yes brain damage can heal or be redirected to other parts of the brain. I beleive there is no doubt that these kids could (15%) have long term illness. Dr. L and Swedo still have kids in their mid 20"s suffereing from relapses. Some people have pandas and have life long debilitation. Ever read the Turkish PEX study. Treat ur kids and get the best docs, help them heal and prevent reinfection. This illness can be debilitating and life long. We now have better treatemtns and better docs, so we do not know what our kids future holds. But I completely disagree with u that we do not have long term data, again look at the Turkish PEX study.

Thats great. Vicki. Many kids resolve from pandas, even some without treatment.

U can believe what u want. But inflammation causes brain damage sometimes. No doc will question that. Therapy physical and emotional can retrain someones brain. Ever see the monk study done about positive thoughts???? I do not understand why u think inflammation cannot cause neuron damage. Even migraines are seen on mri's. Why is this such a hard concept. Read my thread on Swedo's study, with the mri of the adolecent boy who had pex, had no more antibodies, no more mri inflammation and still had symptoms. How do you retrain someones brain? Furthermore, perhaps PEX didn't work for all kids the first time because the extent of their inflammation was all different. There have been cases where PEX needed to be followed with IVIG/steroids because the inflammation was so severe. Kids might still have symptoms due to environmental triggers. Even I still have problems with PANDAS sometimes, but I can correlate it exactly to an environmental trigger. (sickness/ allergies) Symptoms disapear right after the infection. - sometimes a steroid burst is needed.

Why do some kids after years of symptoms walk out of pex with no tics and others do not see symptom resolution for years. Leckman, also has a study showing kids with gross motor skills issues seem to have more long term issues with tics and ocd. What caused the gross motor skills issues and why did they not resolve. Retraining the brain is important afer any brain assault, whether it be a concussion, stroke, MS etc..... and PANDAS. I know cunningham does not State that there is no damage to the brain that could be caused from the inflammation. No doc can tell you that brain inflammation NEVER causes damage. Sometimes it does and sometimes it doesn't, retraining the brain after any assault is KEY.