nevergiveup

Hence, my point exactly, if you cannot post your docs for treatment, I would not publicly post negative comments about other docs who do treat pandas. I completely agree with worn out moms need to get a second opinion, many people do. But since you were not in the room with dr. L, I think it is rather presumptuous of you to publically POST, Dr L made a HASTY decision. She spent four hours with my dd during the height of her exaserbation ( day three of a horrible attack). She makes no money prescribing IVIG, nor does she get paid during the treatment only for a consult. She cares for these kids and unlike your docs, publically treats pandas. Please be more careful with your wording. I know she would do everything she could to help worn out mom's child.

I am sorry I still am not clear as to whom was your immun doc, neuro, Who diagnosed the pandas and whom did the ivig? I think she should take Dr. T. up on his offer for a phone consult and even consider seeing him in person. She could also do a phone consult with Dr. K. Additionally, she can do the Cunningham test w/out seeing anyone (she should do this test regardless IMO.) We had IVIG done locally (Stanford--LPCH). The 2gm/kg dose was based on Dr. K.'s recommendation (via e-mail). Dr. K. agreed that the higher dose (vs. his usual 1.5 gm/kg) made sense due to our dd's hx of anorexia nervosa and her age. (Dr. K. was willing to do IVIG for us if we couldn't find someone local.)

Melanie, Danny, Peglem and Ally, My thoughts are with all of you as you start monthly ivig. I am thrilled for all of you. Its about time. You worked so hard for this. Even though my name is nevergiveup, I would have given up a long time ago, except hearing how hard you have fought for your children inspired me to never give up.

EaMom Since Dr. Latimer was so hasty, please recommend whom she should see? Did you and buster see Dr. K? I cannot recall exactly whom gave your child 2 grams per kilogram?

Coco, and all those with Dr. B, What type of success has Dr. B had with his previous protocol? (lower monthly doses) Has he not been seeing improvement with his patients. I clearly understand the need to up the dose if the patients need a higher dose. But is he agreeing that lower dose monthly ivig does not help pandas or has he had some success. My dd gets lower monthly dose and I would like to know if she should have a higher dose. Again, my question is has he seen success with some patients with lower dose and maybe others need higher dose. Or is he saying he has seen no success with lower monthly dose??? Thanks for responding.

Buster did same graph for my dd for Dr. Latimer in October. I felt like maybe I was over doing it a bit but my dd's history goes back 6 years with long remissions. Her chart showed tic, ocd and chorea only. The one thing that stood out was that her ocd did not cycle with her tic severity. She had terrible ocd after multiple viruses and the tics seemed to be mostly after strep or exposure to strep. Charting her last six years showed that she had sudden onset within three days, reached her peak and then saw tooth recovery until the next virus or cold with again a blip up on the chart. (But never as high as her intial onset) Her most severe attcks took about 1.5 years to stop reacting to small colds and viruses. Both major attacks were strep related and 4 years apart. Both had chorea and balance issue, hyperactivity, and cognitive issues. After about 8 weeks then she would remain with small tics and some ocd during viruses or minor infection. Anyway my point to these charts is that the severe attacks take years to get over. And residual symptoms linger. I can remember my original neurologist seeing my dd and speculating that she had sc but caught her late in the process after much healing began. Later he tried to revoke his original diagnosis and change to TS. What is so obvious from these charts is that strep causes major exascerbations and residual systems and immune "stress" provokes additional symptoms. Thanks for sharing your chart, I realize its very personal. (about 6 weeks post attack) Thanks, but it's just an Excel graph. It does present, however, the data in a way that makes it easy to see the exacerbations and trend lines. [/quote

Wow peglem, your always thinking!!!! When is your dd"s ivig?

Mama2Alex, I would start with two phone consults one with Dr B the other Dr T. I would get a second opinion on the sad diagnosis from Dr. B especially since your son has had serious pneumonia. One study published in Immunology mag discusses a. SAD case where the child had panda like symptoms and they came back three weeks post ivig until after the third ivig they were resolved. I would talk with Dr. T about the lyme factor and get his opinion on next steps. My dd didn't start to see improvement until about 6 weeks post ivig and then it was very saw tooth. She deterioated again and her cam kinase rose 4 months after ivig. She started monthly ivig for CVID in November and we have seen best improvement now after her third one. Have you done the cunningham tests? I think this may help if you see the east coast docs. Also did the ivig help at all with ocd, a lot find it helps with ocd, chorea, and adhd but less with tics. Very curious as to how the labs were misread. What type of response did he have after the pneum vaccine? It doesn't make sense, how could that be misread by the doc? I also went through a very hard time with my local docs until I finally left for an expert. Its well worth having a doctor who completely understands this illness, has seen hundreds of kids with the illness, and will know if your son is being diagnosed correctly. Not to mention the peace of mind you will have when you talk of your childs symptoms and they say, "oh yes we see that a lot with these kids" instead of looking at you with a blank stare like my local docs did. I also wouldn't rule out seeing a lyme expert in your area for a consult also.

I wouldn"t discount the ent's they don' t call the disease pandas but they sure know that kids have adhd and tics with lots of strep. Dr. Wood ( best but not at childrens ) he may be a good alternative. He knows a lot about behavorial changes and strep. He would be my first GO TO. Also Dr. Schott was the doc who after 2 years in neurology, saw my kid for chronic sinus infections and gave 6 months of cefdinir which put my child in remission for two years. She also did the IGG tests to check her immune system which finally led us to determine she had an immune deficiency causing her pandas. I liked her, we never specifically talked about pandas but she saw my childs medical records and I asked her to help if she could and she nodded. She gave her high dose abx for 6 months, I couldn't get anyone in cvg to consider this. Sorry I scared you on my last email, but I do think Gilbert is scary, very scary. Go see a specialist if you have the means to. Dr. K works too. I didn't mean to exclude him. g

Hi, its good your ped knows to look for the strep connection, because of many parents fighting to get the word out over the last 5 yrs ped's are becoming more familiar. Cinci not the best place for this diagnosis, and I would go see a specialist like Dr T or Dr L ASAP, the earlier you resolve this the better. I wasted my time for 4 years with CCHMC and the tic dept to just watch my child denied trtmt and I was basically told by Don Gilbert that she would have OCD tics and it would get worse by puberty. Plus they also told my kid to come back when the kids start to pick on her. Great thing to say to a little girl. I wish I had the guts and instinct to search out the experts at that time but Children's is so well respected in our community I didn't. This disease has become a political battle and don't let your kid get in the middle. I would get as many tests done in cvg as possible, and then go fully armed with the data to the specialists. After the basterial infection and IV abx I think it is prudent to have a full work up of his immune markers by an immunologist (not at childrens, try Ghory or Newman.). Also see if you can get an mri from childrens to rule out other issues just for now. Run a lymes test too if you can get a doc to do it. Then take this data to Dr T and see what's next. Also get the cunningham test done while in current exaserbation. However all of this is contigent on your ped continuing the abx until all this is done. If they won't then see Dr T immediately to have this extended while other tests are being conpleted. High dose abx not average dose is critical. Please keep us posted as to who helps in cvg. If you feel inclined I would post your ped's name on our forum doc's list. At least they recognize the illness, more than I can say about anyone I have encountered in cvg. I wish you and your family the best outcome.

P. Mom, Its not about being protective or not protective its whether the child's immune systems can mount a response. If a doc is wanting to diagnose SAD then low IGG is not critical. But for CVID the pneumoccal serotypes are not needed for this diagnosis but many immune docs want to see low levels IGG with bad immune responsiveness. However again, two different diagnosis SAD is part of the polysacharroid def and CVID is IGG based. And again without chronic infection none of this truly matters. Some docs feel any response above 2 on any serotype means the child is protected and can mount a response. (It takes only 1 serotype above 2, the rest can be zero). You'd know if your kid has an immune def long before any testing, these kids are sick a lot.

Dr. T, I would also consider is there is a serotype that would be more prone to present with autoantibodies, like an off the charts ANA plus autoantibodies like highly elevate antidopamine one antibodies from Cunningham. Which category would produce high anti brain antibodies? Plus in terms of medical histories, which of these categories would be more likely to have autoimmune disease in immediate family members? Several of the kids on this forum have high ana's , and others do not. Some have mothers with ms or chrons, or hashimotos. Also could age of child, and length of illness change the markers from an under active immune system at early age to later a more aggressive disease with autoimmune markers and highly elevated cam kinase? Or maybe this is clues to the tic borne ilness? Thanks for posting it has been very helpful.

My dd"s igg"s raised one year after high dose abx. If the imune doc thinks your kids immune system is healthy and they do not suffer from chronic infection, and even with low igg markers the doc was going to assume they are healthy why did the doc run the test of igg and subclasses? What was he looking for? I cannot speak on behalf of the boy you know who was diagnosed with cvid, but I can tell you that the panda kids are very ill and some are stabalized with monthly infusions. A lot have legitimate autoimmune disease and markers and chronic sinus infections or resp infect. I would continue to monitor your kids immune systems since autoimmune diseases change the immune system over time.

melanie, maxim home care has infusion nurses. Accepts pretty much every insurance and they just need a doc's script. They are national, have done my dd's inusions in mid west and now are doing them in the south. Caremark cvs ships product to your house, they are great.

I think the word is immune modulation. Thats what you want to do. Get rid of the part that is not acting right. I know that doesn't answer your question but I do know ivig helps ocd, not always movement disorders but definately ocd. My dd will tell you it has changed her life. I have heard inositol does help ocd and so does choline. I give my dd a b-complex daily with these included. I've seen a number of posts here referring a supplement called Inositol, which is supposed to assist in creating/maintaining a healthy immune system. I suppose the idea is that if we help our PANDAS kids develop better/stronger immune systems against the agents that exacerbate the PANDAS, then they'll have a better chance of fending off the "bad" stuff without abx, IVIG or PEX interventions? So, I went out and bought some inositol, with every intention of beginning to dose my son with it. That is, until my husband pointed out something I'd failed to consider up til that point. It seems, at least what my decidedly non-scientific brain can gather from all the posts and various research documents posted by Buster and others, that at lease SOME of what PANDAS may be attributable to is an increase in certain antigens/antibodies which, rather than attacking the actually offending bacteria such as strep, wind up attacking the basal ganglia tissue instead. So, in this case, the immune system is "misinformed," if you will and harming itself rather than helping itself. So, if a PANDAS person ingests some "immune helper" like inositol, how do we know that this supplement boosts only the GOOD, non-offending components of the immune system and not, equally, those confused antibodies currently attacking tissue we want them to leave alone?!

My dd also was in remission for two years. Her igg's also lowered and she then again had a pandas attack. I am not sure I would correlate to abx. Anyway can you post the abx documentation or articles of lowering igg's and I will run it by my dad and uncle both immunologists and see what they say. Did the doc run any autoimmune markers for your son? ana, c4? Why are you at the immune doc testing since your son had high igg's in past visits and no other issues for 2 years. Does he have chronic infection? How old is he? Recently there was a posting here on acn about strep lowering iggs, and I know steroids lowers it, several studies have shown probiotics raise it. How many times did you have igg levels taken? I tracked my dd's levels pre abx and pre ivig for many years because she suffered so many infections. They were so much higher at age 7, 8, and slowly dropped over 3 years. However 900 to 500 is a big drop. Could something have cause the igg level to have been inflated on the first draw like recent infection?

P.Mom, My kid's IGG was up also from age 5 through 8, then on abx up higher during age 9, dropped off age 10, 11, 12 and she had her worst PANDAS attack at 12. At that point they were lower again. I am not sure I would dismiss this as abx, when there is an autoimmune condition the body tries to compensate for it and the immune system changes. The immune system will lower one marker to try to compensate if another part of the immune system is overproducing. When an autoimmune disease is in process and if your child has high antibodies in Cunninghams tests I wouldn't dismiss this as a sign of abx, it could all be related to PANDAS. Don't give your doc an excuse not to dig deeper.

I have called dans, neuro's and others to find someone whom can tell me that IVIG helps with tics, becuz my dd was unrecognizeable approx. 3 weeks after IVIG with tics. Everyone said ivig helps a little. Its the ocd and anxiety that it helps most with. But she was happy for the first time in years with or without tics. She now is on monthly ivig and her tics are minimal. Hang in there for several months maybe a year it will help just not right away for everyone. Please report to us what bouboulis says, does he feel ivig will reduce tics? irls' date='Dec 26 2009, 10:59 PM' post='49813'] So my daughter presents mostly with tics mild OCD/anxiety. She had a small dose IVIG about 6 weeks ago and another larger dose 2 weeks ago and her OCD/anxiety seems to be gone...for now but her tics have gotten much worse. Dr B did a steroid boost earlier this month and she improved but as the dose was tapered down tics returned. Last week she came down with a mild cold and tics started flaring. Dr B started another steroid taper 4 days ago and she still has not improved. Right now I don't know if this is happening because of her cold or if she just isn't responding to IVIG. Her cold was very mild so its hard to blame all this on the virus. She seemed to respond so well in the beginning to steroids so we were hopeful about IVIG but now I just don't know what to think. Any of you think the IVIG could be making things worse temporarily? Anyone have any experience with IVIG and tics and how long it took before you saw improvement? Really down these days so any thoughts appreciated.

Wow, lots to think about but I think you may be oversimplifying things. My dd had low Igg's in the 400's before she was prescribed a year of omnicef for chronic sinusitis and while on high dose daily abx for one year she also took probiotiics and her IGG went higher up in the 500's. So this philosophy didn't work for her. I think you should read the article "Hypogammaglobulinemia". By Lin and Shliozberg to help really understand why the doc is saying your child doesn't have an immune deficiency. On page 8 and 9 it has a very detail desc of how to determine CVID. For CVID the IGG's must be two std dev. below the mean and also accompanied with a low IGM or IGA or both. Plus the person should have chronic infections, gastro issues, and some with autoimmune markers or disease. To get diagnosed with a defiency the patient should have infections "severe enough to warrant the EXPENSE of IGG replacement. ". There is no magic number to determine an immune def, just because you have a low number of IGG's doesn't mean those IGG's aren't high quality IGG's. Meaning that if the abx lowered your IGG's they still function well if there is an infection. Plus you can have high iggs with a low subclass two and be more sickly than someone with low igg's. Quantity and quality are key to diagnosis. Some kids are chronically sick with infection and have igg's in the 500 and receive IVIG therapy, some have IVIG in the high 400's and are rarely sick and do not have an immune def. I am not sure you can ever say with or without abx that your child has an immune def based off of their igg's levels, (Unless they are in the 100 or 200 range. In addition CVID is acquired as you age, little kids don't usually have low markers its usually seen later as they age. So if the abx lowers igg's, but prevents panda attacks, and potentially does not hurt the bodies ability to mount an attack against infection, I think that abx is worth it. But to assume abx is causing an immune deficiency is not correct, it may lower IGG's but an immune defiency is much more than low IGG's. I would highly recommend all parents seeing an immune doc read the above article, it was very worthwhile and given to me by an immune doc. And yes, no one wants their child to have an immune def, it carries a large risk of developing lymphoma and other autoimmune illness. So I just wanted to clarify, lowering IGG's is not an immune def. Its just lowering IGG's. Also steroids lower IGG too. Docs don't diagnose immune def's from blood markers only, but insurance co's require the blood markers as evidence of disease for payment.

Yes she has PANDAS, she has a cam kinase of 162 and recently her antidopamine 1's are highly elevated according to Dr. Cunningham. She started her first Pandas attack at 7 severe OCD and psychosis and stopped eating for 9 days she was hospitalized for a week and her sysmptoms just disappeared. Then her second attack was with strep throat at age 9 tics, anger and basically a zombie for almost a year, then on and off panic ocd attacks, at the time I thought total remission for 2 years until after her attack last May she had IVIG and she told me that she has never been better her "stress and thoughts" are gone. She said they had continued throughout her remission the whole time she was just hiding it from us. I think we wanted to believe our ped, she said it would go away so for coping I pretended she was ok but deep inside I knew she had residual symptoms. uote name='Tattoomom' date='Dec 24 2009, 12:39 AM' post='49642'] Does your dd have PANDAS?

Yes there always seems to be some underlying anxiety all the time and my dd tics came for one year at age nine. Remission of tics over two years and then a horrible movement disorder attack at age 13 with chorea and tics. I always knew she wasn't well because she suffered from chronic infections and fatigue and was always ill. Now she was diagnosed with CVID and with monthly IVIG and high dose abx I can see she is a lot better, better than ever. But .... Still some eye tics. Its funny how the tics are no big deal when she is well. She laughs, is engaging, can concentrate, can sleep, doesn't have anxiety. The tics seem horrible when they are so sick and under distress. You can see it in their eyes and as a parent you know your kid is suffering. But now that my dd is not sufferring, her tics although still very noticeable, her daily life and overall well being is strong.

Yes we do. Its great to do it at home. We did the first one at the doc's office, the home nurse came to the office. After that she came to our home. My dd infusion was $1,328.00. For 15 grams. Cheap. This was for the blood product, I am guessing the home nurse will be approx. 300 bucks per infusion. They try to get the infusion to finish in less than 4 hours. Also you have home epi pens if needed. My dd fell asleep during her last one because she was so comfortable on the sofa!

Wow Dr. T, Your post created many thoughts and memories for me. It reminded me of my grandfather whom I did house calls with on the weekends in our small town on the east coast. He ran his practice the same way you are and cared for each of his patients based on need. He also even offered to help with logistics for out of town patients. He was a great diagnostician and didn't have to make all his decisions based off of insurance. Knowing your available for us is a relief after years of not having one doctor acknowledge or offer trtmt for my dd. After the lack of treatment my dd had received in the past, the psychiatrists whom so happily charged 200 dollars for a 50 min session claiming they understood this illness, neuro's offering up haldrol and attacking me as a mother because I wanted the autoimmune component treated, calling my dd in for blood studies but sending us home with no hope. I am glad you and Dr. L are available and fighting for our children's future.

Melanie, Yeah, It has helped my dd with ocd and anxiety so much. This is a great Christmas present. I am so glad for you and Danny! You have been so patient and such an advocate!

Britneymag, Its funny you wrote this my dd had the best remission of her symptoms especially tics while on tamiflu. It was remarkeable. I know docs are reluctant to prescribe this drug to kids with anxiety, because it can cause anxiety. My ped gave it to my kid for H1N1 but made a very strange comment about how it causes anxiety in some kids. Anyway, I do feel there may be something to why the tamiflu helped so much my dd tics. She stayed on it for 4 weeks prophylactic dose and her tics would stop one hour after dosing. I have thought of testing my dd for XMRV, also found in children with autism and adults with chronic fatigue syndrome. Whay do you think? I also feel tamiflu must be a pretty harmless drug becuz pregnant women can take it up to 6 weeks.