nevergiveup

Kids go into remission for years with PANDAS. Other infectious agents cause antibodies to attack the brain. Mycoplasma pneum is one that has severe PANDAs symptoms. Some studies have implicated staph infections. Not all strep strains produce the same antibodies either. Childhood sudden onset OCD IS an autoimmune illness. The key is SUDDEN ONSET with relapses and remission. So you feel the Lexapro stopped working? Rather than your son had a relapse? My guess since he was in remission for 5 years it is infection triggered OCD or PANDAS. Sorry but SSRI's are not known for curing OCD, they are proven to reduce symptoms though but not put in complete remission. I firmly believe sudden onset OCD in children that is infection triggered is autoimmune. Hey, ask your docs what caused your sons OCD and relapse. Lack of seratonin??? I know thats not proven. I would love to hear his explanation. I would keep him on the abx, and try another SSRI, if he doesn't get worse then thats good you know the SSRI is not hurting him. If he gets worse then I guess he then has PANDAS and you can go to the PANDA experts. Whats wrong with both abx and SSRI for a long time?? I get that a PANDAS kid has an autoimmune disorder; I'm just trying to figure out if that is truly MY kid's problem, or if his OCD comes via some other agency. Especially when he does well for nearly five years on an SSRI when other PANDAS families report nearly only failures with such meds. Honestly, I'd like to believe it IS PANDAS, because then there could actually be a CURE, rather than just "managing" the condition for the remainder of his life! I've heard of the glutamate drug studies (one at the University of Michigan, I believe) and am encouraged by that, but we're trying every path we can. We DO have him on high-dose antibiotics right now: Augmentin XR at 2,000 mgs per day. I'm just putting it out there for a reality check against all the experience on this forum. It seems a little too coincidental that his near 5-year "remission" was because he got over the infectious agent but then was re-exposed. He attended public school, was exposed to strep repeatedly (I know because we'd get a note sent home, and he'd never develop any signs of it, but I would inevitably come down with strep throat a few days later), I can't remember a single instance of his being put on antibiotics during that time because, beyond the OCD, he's a really healthy kid. And, he was on the Lexapro that entire time. Don't get me wrong: I KNOW PANDAS is real, and I am very cheered and encouraged by all the information and experiences posted here. And I'm not ruling it out for my own son; I'd love to cure him! Just trying to separate the wheat from the chaff. From what I've experienced thus far, medical practitioners who are either dubious or downright anti-PANDAS automatically diagnose my son with OCD, and those that acknowledge and even practice in the PANDAS field immediately diagnose him as PANDAS. But our experience could point us down either road, and everybody has a dog in the fight, know what I mean?

I am very concerned about how many docs ,neuro's, psychiat, are now saying they are pandas experts. Who is your PANDAS expert? I am disgusted with the amount of neuro's and hospitals saying they know pandas, and they are just using that diagnosis but still ONLY offerring typical SSRI trmt and clonidine, tenex (Sedatives) for movement disorders. They may give one year of Pen VK at best. I want to post a warning to all parents running to your children's hospital whom say they know PANDAS. If they believe in PANDAS, (the A stands for autoimmune in pandas) then ask if they will treat the autoimmune part??? I understand that they will go conservative at first with PEN VK but ASK ASK if your child gets worse what are the next steps!!!!! Ask what further treatments they offer on relapse. If they don't say steroids, and potential IVIG for very serious cases you are NOT with a pandas expert. Haldrol, clonodine, Prozac are not drugs for autoimmune illness rather tourettes and OCD. Please know whom you are dealing with. I am putting out this notice because docs and peds are taking strep titers, prescribing short term abx and then telling parents it will go away and saying they are PANDAS experts. Of late I am seeing many mothers on this forum whom have been seeing docs whom say they are familiar with PANDAS but yet they have only referred the kids to shrinks. WHY is an autoimmune disease with a psychiatrist?? Ask and insist that you are with an EXPERT. If you need one check the forum list of docs. 7 years ago most docs didn't know the name PANDAS, now all peds have heard of it. And we are making progress, but don't be fooled by the fact that we have a long way to go. I cannot tell all of you how important it is to have a relationship with the right doc from the get go. If, and god forbid, your child relapses then you have someone (doc) by your side that knows what to do. This is not the time to find out your doc doesn't know what to do. ASK THEM, how many have they treated, what is protocol if your child doesn't improve on abx. What immune blood markers should be reviewed. (Not just ASO, like IGG, subclasses, ANA, Components, t cells, Pnemoccocal titers etc...). What studies are they familiar with and what other PANDAS experts do they know and communicate with. How many children have they treated or helped with the autoimmune part? (Not just the psych part). If we all start digging harder and requiring our docs to try harder our grandkids may not need to go through what our children are going through.

What makes a PANDAS kid different from a normal (OCD ) Kid? I think thats what you asked. First a PANDAS kid has an autoimmune condition. It is not the strep that is causing the problems rather the antibodies against it. It is also a BBB problem, where many many many kids produce strep antibodies but they do not get in the brain to cause basal ganglia inflammation (OCD). So what does SSRI's do for an autoimmune condition and a weak blood brain barrier. SSRI's success rate is pitiful with OCD and I personally think if your son was in remission 5 years it is because he has an autoimmune condition which is typically relapsing remitting and he was exposed to the infectious agent again that caused the original attack. Lexapro does not put PANDAS into remission. (If it did we would already know about it cuz it is always prescribed and many kids get worse on it) If you continue to go this route of brain drugs, and not immune meds I would look into the glutamate drug studies being conducted right now by the NIH. I heard they are having better success with OCD than SSRI. However if you want to better his immune system, high dose abx will help prevent a relapse by preventing a bacterial infection and high dose abx have some immune modulating effects. You have been dealing with this for a long time. Look at our past posts on this forum about immun docs and immune testing. Cunningham tests. IVIG and PEX. All these kids need high dose abx, try augmentin, zithro or cefdinir. Look into immune tests to better figure out what is going on in his immune system. And get the cunninham tests for further confirmation. I wish your son a speedy recovery.

MRI's could show inflammation in basal ganglia. Also I am sure they are looking for anything that may have happened from the football accident. I am no doctor, but if your son is home from school with debilitating OCD and extremely high strep titers try an intracellular type antibiotic, you may want to see an infectious disease doc. Also I believe Buster (our forums scientist) mentioned a study where the BBB can be breached so antibodies can get into the brain more easily and one of these breaches was head trauma. Therefore this may be why you are seeing such bad symptoms right now and the mri may show inflammation in the basal ganglia. I would get PEX and remove these antibodies ASAP especially if there is a breach in the BBB. Then I would follow up with an immun doc to find out what is not working in his immune system that causes him to overcreate the antibodies and maybe consider IVIG for an immune fix. As much as I agree with abx helping, there is little scientific data supporting that it puts kids in remission fast. It does prevent further attacks though and high dose abx are immune modulating. But it can take years for these titer levels to reduce and if his BBB is hurt from the concussion, you need to remove the antibodies NOW.

Hey peglem, Thats great. They covered my dd's too, except a regular in network rate is 80.00 and Dr L charges 480 for intial panda visit. Unless she is willing to waive her charges??? I believe her office will file your insurance but require pmt in full at visit. Unless you can prenegotiate a reduced rate with her which some docs due depending on financial need. Dr L does an extremely thorough neuro exam with an extended amt of time reviewing the medical history. Our appt have taken up to 3 hours at times. (With her present the whole time). No doc can survive on 80 for 3 hours. This is what are medical system has brought us to same pmt for every case whether difficult or not. Many docs are moving their practices this way. Pay up front TRUE cost of their time and take what you get from insur as reimbursement. Our managed care system does not take into account or compensate for the truly difficult cases. Peglem, does UHC pay IVIG or PEX for a diagnosis of PANDAS.

Coco, Yes. Dark circles gone! I know its probably not a diagnostic measurement for docs but I can tell you it is a key indicator for moms!!!! BronxMom2 This is the second time I have heard about tcells and these kids. Once from Shannon in ref to Dr Sleasman at _USF with Murphy. Do you have any info on this? Is IVIG considered treatment for low t cells? I have been told that a t cell deficiency is uncurable. Is this what Bouboulis is measuring or is he measuring the way the t cells behave? And is there a name for this immune issue? Thanks Nevergiveup, My dd in addition to pandas was diagnosed with Selective Antibody Immune Deficiency, which he feels strongly should be corrected with monthly ivig. She does not create an immune response, so that should hopefully fix the problem. Additionally, I believe he feels that as long as the child is tolerating (no adverse side effects) from the dosage, he is willing to increase it based on behavioral symptom improvement as each 30 days pass, or lack of improvement. We will run some new blood work on her after the next session to see how she looks then. When the dark circles under her eyes disappear I will do the JIG! Someone who posted after this note (sorry, can't remember name right now ) has a question about why Dr. B proposed ivig so quickly after PEX. I asked him the IVIG vs PEX scenario questions and he explained that even if you do PEX, which completely cleans the blood of all bad antibodies, you need to add in good antibodies with monthly ivig. Hope that helps. coco

See if you can draw a vial when they put the ivig line in for another IGG test. If you son is borderline it may be worth it. Great his ANA was normal. I would see if you can get a consult with immun doc and Dr. B before IVIG , once you get the IVIG you can scratch most testing for about 12 to 15 weeks. We do have IVIG at home now. Not the first two though. I am not sure if it matters where the ivig is ordered from unless insurance makes an issue. My dd gets her ivig ordered from her doc here in Ohio, but her next two infusions will be in Florida. The nursing home care Maxim is national and Caremark will ship product to other home. So I am wondering why this would be an issue? Unless ordering doc can only write scrips to local residents. No one seems to think much about it. Insurance still covering. Anyway, I understand your need to find immediate relief for your son. In October, 5 months after our dd's initial IVIG, insurance was piddling around with her CVID infusions and we could see her deteriorating and we did the same, we were just going to pay and get the long term details worked out later. Its not worth waiting, I understand. However, getting any last effort blood test in before IVIG, is critical. Especially if Dr. B has some insight.

Coco, Month to month makes sense. Its the only way to survive. Mom's are so much with their dd's that we notice each slight set back. My husband helps keep me grounded by reminding me how far she has come over the last 7 months since her relapse on May 5th. I even know the day, it was that sudden and that severe. So I know our kids are diagnosed with CVID, and I need to consult Dr. B about dosage and timeframe. My kid is getting regular CVID treatment, maybe a slightly higher dose than our immun doc would give just becuz she knows my childs history. Does Dr. B think that becuz your dd doesn't create an immun response (flu like symptoms) from each infusion that she needs more??? Or is it because she can handle more he wants to give more?

Thanks Peglem!! Your one of my hero's. You also fight so hard for your daughter! My thoughts and prayers will be with you when you see Dr. L. I recommend staying at the Mariott Convention Center in Bethesda. Call you can usually get a discount rate. My dd loved this hotel. Right next door to Dr. L's office.

Bronxmom2, Way to go!! You fight hard for your kid. I am thrilled for you. Do you know what in network insurance he takes?? UHC? Can he treat kids in Ohio if we make the trip to see him? Coco, What dosage now??? Was it based off of symptoms or blood markers! I need to go to Connecticut! Thanks so much for posting!

Claire, I know after PEX his cam kinase was at 99 if I remember correctly, and before the PEX he had very high strep titers I believe ASO? Has his titers and Cam been retested recently. If this is caused by antibodies, does he have them again? Anyway, what about Bouboulis since your son has a very high ANA (I remember 1:640 ). I know with CVID there is an autoimmune component. He apparently has a different way of looking at these kids. My dd gets monthly IVIG now for CVID. She too has a very high ANA low C4 and finally low IGGs and IGMs. She had chronic infection for years but didn't have the low IGGs until 10 years old. Her Pandas symptoms started when she was 7 years old when her ANA was 1: 2560. Her IGGs were normal at that time. Not anymore. Anyway what about Bouboulis? What has he said. He seems to really get it, he gives monthly doses which are high for the autoimmune component. Also I wanted to mention that Swedo's SC study showed the best improv for SC was seen by the IVIG grp, where with PANDAS it seemed PEX had more benefit. If I remember the studies correctly. You cannot keep having the infusions at GT center too expensive. After an initial dose, a home nurse is much cheaper. I would rerun the IGGs again, especially after a month of steriods they will be lower.

I would recommend cardio for sure I read it helps the BBB, the immune system, and sleep. My dd has had three relapses in 7 years. All her recovery was helped thru cardio exercise. I use to notice her chorea was less after soccer practice. (Of course during exercise it seems to increase it). As for safety and balance if you see him overexerting himself then stop the activity. My daughter is a figure skater, I feel that not only has this changed her coordination it has dramatically helped her brain. I believe exercise that coordinates both side of the brain is best at healing the brain. For example in skating you have to spin (rotate) all spins clock wise and counter clock wise, spirals must be done with both legs. Pretty much everything is done one direction and then alternated to the other. It is very difficult to do things with your weaker side. I feel her sports have healed her many times, she says skating is good for her soul. Thats enough for me. We have the trampoline that has the logo. "Safest trampoline in the World". It has no springs. Can't let a figure skater twist her ankle! My dd is 13 and after her recent relapse in May that was life altering with balance, chorea etc... Her skating was stopped for three months. She couldn't put hands out and head up without falling to the ground from balance issues. She is now trying to come back slowly, and struggling with her return. But I am told comebacks build character. And exercise heals the brain. Have fun! Also we love our trampoline.

He had a very high dose. Panda kids usually react this way after the second dose. I am surprised you are surprised. The higher the dose the most likely you will get flu like symptoms. Keep forcing the liquids helps with headaches. I read a recent article about IVIG and it said force fluids up to thirty days post due to the impact on the kidneys. I am sure this is more for the adults but I am careful to make sure my dd drinks at least 8 glasses a day. Since your son is getting this every 30 days he will need regular liquids. Also what is his monthly dosage? We are trying to switch our dd monthly dose to Fridays because it sets her school work back if she misses three days per month and she is also still fatigued when she returns that whole week. Hard on testing and social life. I am glad your going home. I am glad his headache is better it can be pretty painful. I hated that part.

No. The ivig should take care of any little cold. Thats what it does, no more colds for him for a long time. Hows his head??? Cold wash cloths helped my dd headaches. I hope his side effects are minimal.

Memom, I think you have two alternatives. First i would consider more steriods at higher doses. Since your dd is 17 she doesn't have the same issues with steriods as children. (Stunt growth ). For autoimmune issues steriods are prescribed at high doses for adults. I once took 1000 mg a day for several days with then a very long taper for a while. In, India SC is treated with IV steriods. (They have a lot of SC due to lack of access to abx) Or I would try PEX since her studies are so important right now and IVIG high dose could create fatigue and pretty strong side effects which may hurt her studies. (Not to mention the turning back of the pages that many parents talk about, which I prefer to call the stirring up of the antibodies or basically a relapse.). My dd has had IVIG it did interfere with her studies for a while (1 month), of course her work load is one tenth of a highschoolers. This is just a moms advice. Of course I would trust Latimers recommendation and see what your dd thinks is best. My dd clearly tells me when things are bad and she needs help. After receiving IVIG and getting an opportunity to be relieved from OCD for a while she now is keenly aware of when it returns. (After years of suffering). I think when you have OCD for many years the child finds ways to cope and us as parents recent the baseline thinking our kids are ok, when in fact they are not. These are the coping skills that psychiatrist implement with the kids. But everyday was still a struggle inside for her. I really did not know how much she "hid" or "coped" until she told me how things were for her after IVIG. She is 13, she hates the OCD. Doesn't complain too much about tics unless they are really bad.

This study is not selecting candidates thru the neurologists eye like at Hopkins. Murphy is a psychiatrist and treats OCD and sees Pandas patients with sudden onset OCD and tics and chorea. I am hopeful the selection criteria will be better screened than Singers study. Also Murphy is the researcher that published the study proving PANDAS kids don't respond well to high dose SSRI's . I think her creditabiity is legit. She has also referred patients to immun docs. I would really like to hear from more parents whom see her. If you go on line she has a clinic specifically for PANDAS. She actually does intensive three week therapies for kids from throughout the world. I wish more parents whom have worked with her would post their experience with her.

Vicki, I also heard Dr. Murphy was doing an augmentin study? Do you know anything about that? I am so glad your son is great. I have thought on many occasions how to get the message to Cinc Childrens Hosp. I have thought of reconciling all the studies and data published into a binder proving and studying PANDAS, Busters insights, and immun docs insites and then taking that to the powers that be at Children's, what do you think? With all this tv press about OCD and pandas I bet Gilbert is going batty having to talk with the mothers.

Vicki Are you seeing Dr. Murphy? I am glad you posted this study! There are so many parents in southern ohio who cannot get any treatment or help. At least getting in on this study would help the child. Doctors in Ohio believe PANDAS is treated with 10 days of antibiotics. Cleveland Clinic treats it as psychogenic and Cinc Childrens is just way behind on the science. Tampa is a 12 hour drive from here. Its not so bad I just did it last week with my daughter. Or the flights are cheap to TPA. Cefdinir is a great antibiotic and at high doses it put my dd in remission for over 2 years. She was back to twice daily Pencill when she relapsed. Vicki have you thought about preventative antibiotics?? If your child is not on abx because you cannot get them from your doc this is a great opprotunity. Cefdinir is very expensive close to 120 dollars every 10 days. Or 360 dollars a month not to mention a session with Murphy's clinic will set you back 200 dollars per hour. All free. Have you seen Gilbert lately? I cannot wait for the study results to be published. Think that may ever get Gilbert on board?

Recently a friend's 7 year old son has had a sudden onset of tics, hand twirling and rages and anger, and piano finger playing. His immune system was assaulted with getting a flu, several colds and the H1N1 inj vaccine all within the last 8 weeks. I have known this child since he was born and he has never had previous symptoms of PANDAS. As usual her pediatrician is testing strep titers which will most likely be normal no sign of strep for months. My question is HOW MANY new people here visiting this forum are seeing these symptoms right now. Many docs read this FORUM and this info could be helpful. Could all of the vaccines and the H1N1 be triggering an autoimmune reaction in our children?

I guess after all of our struggles and years of trying to find someone to understand that our children have something physical wrong rather than psychogenic we all felt at some point that we will write a book when this is all over or go to the press or make a difference. As this disease becomes more known certain individual will be more "in tune" to the ins and outs of publicity and public awareness. Think about what Beth Maloney had to do to get someone to publish a book about a rare disease. Not to mention putting her son out there for scrutiny. I would have a hard time showing those videos to the world. She obviously fought hard to create the "hype" around the illness. Interesting enough is that the tv stations could find a million docs who don't believe in PANDAS and could poke holes and doubt into everyones minds. Some people know how to make lemonaide out of lemons and some people take any situation and know how to make it into money. I had a friend who was an amazing business women in marketing. She was diagnosed with MS around the same time as I. Where I wanted to pursue the best doctors and spend time analyzing the different medicines. She rather picked her drug quickly and became a rep for the drug co immediately and now profits from monthly internet presentation and conferences. She immediately saw her illness as another money making opportunity and she also felt this was her way of helping those who needed more info. However what shocked me most is she was no expert for the drug co only taking the drug one month before soliciting for them. Kind of like what we see on the media lately, they are no experts but they sure do have the personality to sell the stuff. I cannot criticize because I wouldn't think of exposing my dd this way however I thank god someone is smart enough to know how to sensationalize this illness so that it gets the word OUT. We have a very long haul, look at fibromyalgia, Chronic Fatigue, and autism , these diseases are all still under scrutiny with a heck of a lot more press and funding.

Shaesmom, Thanks for the post, Lots of positives lately. Always what we need to hear. If you get the email of the mother of these two boys and she is willing to talk to others it would be great to know more details like IVIG timing, dosage, at what age did they start IVIG, medical diagnosis, Insurance, you know all the typical questions. (Oh yeah and her immunologists name) I am glad your daughter is doing well. My dd gets her second monthly IVIG for CVID on Monday. What is your dd's dosage. Are they measuring her IGG levels pre and post IVIG? Does your dd have any autoimmune blood markers? ANA or others? I think it was me who said that my dd has about three days of some OCD right after IVIG. However she also says her OCD is gone since IVIG. She says she is a different person. I am hoping she will not have this flair up as her immune system gets better. I know your daughter has been on IVIG for 6 months. I am assuming other than sept and recently she is doing a lot better. How long will they continue IVIG? Thanks for your reply.

Ok so everytime I hear about vaginal or anal strep I am confused. What are the symptoms??? How is it treated? Is it easily eradicted? How do you get it? Do lots of people get it? Do ob gyn test for this at your yearly check ups? Is it the same bacteria in your mouth? Is that how it is transferred? Laura's mom, is your daughter on abx? Will she then not test positive for this type of strep? Also what treatments are they recommending for your childs tic? Is she seeing any improvements with time? Is she attending school right now? It sounds like you are checking in on the forum regularly. Can you give treatment and protocol feedback to help those of us whom do not have direct access to Leckman? On this forum, we have had open dialogue in reference to many doctors, Beth Maloney, media, research studies, John Hopkins(yuk) etc......... Including your daughters media exposure. Asking questions, leaning on each other, learning and sharing are the reason why this forum is so beneficial to so many and why this chat room works and other chat rooms feel more like a group therapy session. We have some pretty devoted parents whom so willingly educate and share and inquire. Some down right experts with open minds. This constant questioning and digging is what has brought many on this forum to find real solutions for our kids.

Worried Dad, I can totally relate to the winter flu and virus issues. After years of miserable winters with my dd sick pretty much 30 school days per year. My dd had a horrible overnight attack last may that rocked our world, she was 12 at the time and we had thought her Pandas was in remission. She has spent the last 6 months recovering. And although she is laughing and loving her friends again and school, we have decided not to enroll her in school this winter. She will be taking a break until March. She is very upset but we feel she is still recovering and we know we could loose her again if she has a bad relapse. I have always struggled with the need to protect her and the desire to let her lead a normal preteen life. Last May tipped the scales for us, and we are now leaning towards the protection side of things because she was so ill in MAY, JUNE and JULY she wasn't leading a normal preteen life anyway. Its been an extremely hard decision, but we are going to try it to see how it goes.

All great advise on abx, I think the key is high dose abx. Your son is getting a very strong dose of ivig. Remember to have him drink lots of water starting 24 hours prior and during IVIG's. (I cannot emphasize this enough) This will help with the headaches a lot. Also "stirring up the antibodies" is one nice way to put it. Although some kids don't have this issue, many do. As my daughter says " it(IVIG) can really make the OCD bad afterwards." But her overall health is soooooooo much better. And she will tell you that she finally feels normal after years of OCD. She gets another one next week so she is not looking forward to a slight set back. I am hoping after several more she will not have "the stirring up of the antibodies". It lasts now about 3 days. I look foward to hearing about your sons progress and healing.

Mama2alex, We have tried both high dose azith and high dose aug XR both seemed to have benefits, when my dd seemed to be stagnating (sp?) We switched and she would improve again. Sometime alternating can prevent building a resistance. It was amazing how well she improved when we put her on high dose azith then it was even more remarkable the improvement on augmentin then again when her improvement did not progress back to azith. Anyway, I am glad that your IVIG is soon. What dose did they settle on for initial IVIG vs monthly?