nevergiveup

I think the tides are changing, try it but make an appt elsewhere right NOW, with a pandas expert too for a second opinion. Its always smart with any serious illness to see the experts and get a second opinion!!!! Dr T, Dr Leckman, Dr Murphy, Dr L, Dr B. quote name='tpotter' timestamp='1284579357' post='84381'] Only one we found at CHOP who's even slightly open to PANDAS is Elias in Psychiatry. although another mom just found the director of rheumatology to be open to it. But, he suggested that she go to Yale, and indicated that she shouldn't waste her time at CHOP (which is what many of us around her have also found.) To give you an idea, when my son was hospitalized at CHOP for 4 days with 104 fever, postivie rapid strep, nystagmus, chorea, tics, and already diagnosed with PANDAS, the attending neurologist informed me that PANDAS was: "voodoo."

Emerson, Thank you so much for answering my question. Ever think of studying medicine and becoming a doctor?

Emerson, Were u ever treated for TS, and did it help with tics? Do u take any medication for tics now? From some of your posts I have read you have an active social life and lots of friends and a boyfriend. Can you offer any advise to my 14 year old on how best to handle this illness, what to tell her classmates when they ask about her tics? Thank you!

Stephanie, How appropriate ur response and thread, but Emerson truly can be our inspiration, I was recently feeling very disconnected from my closests friends becuz, they will never be us, they will never understand where we have been, but social networks are key to long life and as frustrated as it is to "pretend" to have not gone through this, I have watched my friends with children with cerebral palsy, or severe disabilities and they also receive very little understanding, even with conventional illnesses, if u want to call them that. Spend time with ur friends, have fun, consider it light conversation and a chance to get away for a while from pandas.

Peglem, I started looking into the D1 antibodies, and found an interesting study looking at swallowing and digestion in Guinea Pigs when D1 is altered. Apparently, D1 impacts swallowing, I find this rather interesting becuz my dd has highly elevated antidop1 antibodies, and has had eating and swallowing ocd issues. What I still do not understand is do the antibodies reduce dopamine, so should we be looking at dopamine agonists or antagonists. Also has anyone heard anything about the mirapex study, this drug increases dopamine I believe. I am interested in hearing from anyone whom is involved in the study??

Melanie, My dd gets ivig every 21 days also, just started with 21 days was 28 days. She had a lot of headache but more concerning was she had a lot of neck pain, up to four days after ivig this time. Is the solumedrol given to reduce side effects? I have an appt with immunologist soon and will be asking for support on her side effects now that the dose is stronger. Any suggestions? I believe the solumedrol is a steroid? How much does he receive? How are his side effects? Have u seen tic reduction before with ivig or is this the first time? Thanks

Dr T told me antidop1 had something to do with the endocrine system. Maybe this maybe a starting point if u want to research antidop1 antibodies. My dd was high in this area, so if u find any info I would be very interested! Thx Do you have any info on the D1's and where they may be prevelant?? Well, I just perused a lot of abstracts on PubMed, but it sounds like the dopamine receptors 1 through 5 are as prevalent in the peripheral nervous system as they are in the CNS. But, I was specifically looking for D2, because that's my child's problem.

Ok I will try to answer best I know how, the donor antibodies are already assigned a protein(illness) which it will identify and attach to. So in theory she should not get strep throat if they identify the bug. But could produce an immune reaction to create more antibodies against strep. But again in theory, 1.)ivig either suppress production of new antibodies or 2.)the donor antibodies attach to the autoantibodies redirecting them not to attack the body. Number two is the theory my immune doc thinks is the reason why ivig works. However if the body is triggered to start producing the strep antibodies, it will continue to do it. But with the dose Ally gets there is sufficient igg to redirect a whole heck of a lot of antibodies gone astray. But Ally has a lot of autoantibodies (I remeber the cunningham test u had) so she needs a lot of igg to redirect. In theory her next ivig will help also if she starts to over produce antibodies. The leading specialists do not know exactly how ivig works, its all theory, but it should help her not get a full blown case of strep since her body should identify the bacteria pretty quickly. I hope this helps a little. The whole T reg stuff, I still haven't discussed with my doc, but u know Buster is probably the best guy to answer that! Has Ally been sick(flu, bacteria, viruses) since she started ivig?

Linked to high ANA

A question for the scientists, I read the test data, and it talks about CD4 T cells increasing throughout the day, low in morning and increases throughout day, also mentioned temperature and hormones increase CD4 T cells. Could this have something to do with tics. They consistently are more agrressive in the afternnon and evening. Same with OCD symptoms. If anyone can help explain T vs B cells, Could the t cells be causing tics in the brain. Or is it that they increase inflammation causing the tics? Would love to understand what this test is looking for and how it may relate to pandas?

Yes my docs nurse mentioned they have been using this test at the immunology clinic. I believe this may also be helpfuk for austistic children looking for immune issues. Please keep us informed as to what ur doc is looking for and what this test tells us about our childrens immune system. Does ur child receive ivig for immune deficencies?

Ok one last controversial This is her 12th one, she's a pro! She is my hero for sure. All these kids are hero's! I still cry privately every time she gets one. Goodnight. wimp! Seriously, though - thanks for the great online conversation and thought provoking statements. Best of luck with dd tonight and tomorrow - hope all goes well!

ALL have very legitimate points and views. All should be heard, if not this forum would be useless. But I vote we all go to bed now! I am tired, and my dd had ivig today, and will need my full attention tomorrow.(She gets a little headache)

Kimballot, I like the way u summed it all up, except I also want to point out that Dr K does do multiple ivigs, I am not sure he is against them for sure! Plus I want to reemphasize that a lot of families whom said low dose monthly ivig didn't produce the improvement they wanted now have lyme. I think for me this is critical to point out!!!! And finally becuz I love to use MS as an example, as SFMom reminded everyone that I have it, I want to let everyone know that MS being a default diagnosis (no true blood marker) has many drugs out there, not all drugs work for all those diagnosed with MS. Why, well becuz MS is probably 4 different diseases with different mechanisms and triggers. Now after 20 years of saying ivig does not work for MS, new studies show with the right dosage and intervals it does offer much hope. So we all know TS and OCD are symptoms, how many different diseases could thay really be. My neurologist says at least 4 maybe more.

About higher or lower doses: Its this kind of language, Nancy, and generalizations that are limiting our info and search for help for our children. Low dose may not be as helpful as high dose. Autoimmune disease takes a higher dose ivig to help redirect or stop production of antibodies(two theories of how ivig works) But it is not necessarily true it makes things worse. Gosh, High dose can really rock everyones word with turning back of the pages. That's not worse, just healing, right? There are several kids on this forum that are not worse on 1 gram. And many kids whom had no success with monthly 1 gram ivig had lymes, not best treated by ivig. I want to make sure we are not limiting care by making unsubstantiated generalizations.

Wow, that looks very good!!! Is it a supplement or prescription drug?

Same as u, first two weeks improvement,then odd behavior and odd tics, my dd also had side effects from ivig, didn't see improvement until approx. Eight weeks.She did well until about 20 weeks post when she got H1N1, then deteriorated pretty fast again.quote name='ExpatMom' date='07 September 2010 - 06:52 AM' timestamp='1283856768' post='82820'] Hello to Everyone, Some of you may remember a couple of my previous posts. I have been "MIA" for a bit, as I finally diagnosed my 10 year old son with PANDAS, and traveled from Saudi Arabia to Chicago for IVIG with Dr. K, all with in a short time frame. My son has been going through a severe exacerbation of what we now believe is PANDAS since he was sick in April. Dr. K recommened IVIG and we decided to go for it. The IVIG was done on Aug. 12 and 13. My son was very sick afterwards with severe headache, vomiting etc...and then we made the 15 hour flight home several days later. The first week post IVIG was rough and since my son is petrified of vomiting and he vomited several times post IVIG, his anxiety level was very high. However, after about a week, he had a great improvement in all his symptoms from OCD to anxiety. It was the best I have seen him. My 2 week update with Dr. K was very encouraging. However, wouldn't you know it, a couple days later, my son started having panic attacks again. His OCD symptoms are still better than before, but his anxiety is very high again. This has been going on for about 10 days now. He has had a couple days during the 10 days that were a bit better. My question to all of you out there is this....what was your experience post IVIG? I know turning back the pages is normal, but when should you see sustained improvement?? I am trying to remain optimistic, but getting worried. We are a few days from the 4 week marker now. Any advice??

Philmom, On aug 10th, there was a post asking how Lauren Johnson was doing? However no history exists on this thread, and she has no history in latitudes, which I can totally understand since she is using her daughters REAL name on the forum. So... Since u are a close personal friend I will default to what u know about her dd's treatments. I must have misread, I just remember the four weeks and thought wow that's a lot of ivig. Maybe she mistyped it and meant 8.

Momofgirls, Did u ever see any improvement with ivig? My dd has definate signs of improvement with ivig, she says she feels great after ivig. Her ocd disappears and so do tics temporarily, they reappear approx. 15 days post ivig. So should I assume ivig works and she just needs a higher dose or is it not working. Did u see dramatic decline with ivig? Just trying to understand how the kids with lyme react to ivig.

I am very interested in the bartonellas since we have outdoor cats. Is this the same as toxoplasma, which by the way, was found to have elevated titers for TS kids. I cannot remember the exact study, but one medical journal several years ago showed elevated toxoplasma titers in tourette children.Thanks KeithandElizabet!

She was getting every 8 weeks, but - recall her moms last post stating she will be getting highdose evry four weeks now. I will look it up in the history. I'm pretty certain Lauren is receiving high dose ivig every 8 weeks, not monthly.

If we test during monthly ivig for Lymes and bartonella are we concerned about a false positive or false negative????

Oh. Yeah and one more thing, why can't our kids have a non controversial illness, first Pandas and now Lymes??? Exactly how does ur fatherinlaw (sfmom) handle all of this? I have already decided if I do go down the Lymes route, my family will not be included in the discussions!!!!

Sooo. Herxing from ivig is a good thing??????

Peglem, everyone has turning back of the pages first ivig. I am not sure u can attribute it to low dose, or that it wasn't strong enough and just didn't help. (Which is what I think is the case) If she had high like some of the kids, then low and then high again u may be able to differentiate. Lots of kids have turning back of the pages first time. Plus most immunologist don't see a benefit from ivig till after 5 or 6 th. Just to clarify, in my daughter's case, she did worsen w/ 2 low dose IVIGs, 3 weeks apart. She has continued with 1.5g/kg every 4 weeks, and has had 5 of them so far. She is doing okay, but every couple of months gets a course of rifampin/augmentin when progress begins stagnating. She is pretty atypical for everything (PANDAS, life in general) so we're just staying the course with whatever seems to help.