Pezmom

That is a change. Not only did they used to have Dr. Swedo's studies on their site, but when I met her in October she was still talking about IVIG or plasmeresis (sp?) being an option (although with reservations and reminders of the risks). In that discussion, she advised me that I should consider having my son on antibiotics until he hit puberty (he's 7 now). They had stopped researching PANDAS and moved on to a focus on autism quite awhile ago. Her talk at the DAN! conference was about lessons learned from PANDAS and she discussed her findings.

You can tell your Ped that you are planning to delay any further vaccinations. He would be due for his MMR soon. That is the one who caused my son's hospital stay, chronic stomach issues, and we believe jump-started the autism symptoms. www.generationrescue.org includes a slower schedule which is recommended by a physician at the University of Washington. It includes delaying vaccines until a child is 2 and then only giving a few specific ones. I completely agree that our kids immune systems are already compromised and vaccinations at this point don't make sense. I encourage moms to wait to vaccinate even if their kiddo has only a cold. I think our Ped hasn't given me a hard time about not yet vaccinating my two-year old based on the fact that I've told her we will do some specific vaccines when our daughter is three. www.ageofautism.com has some good articles about vaccines and autism research as does www.autism.com.

You can also have Ibuprofin compounded with a prescription from your doc. Our son can't have corn in addition to several other things including artificial colors and flavors. I couldn't find any OTC pain med he could have and asked our pharmacy if they could compound some for him. It's been really helpful.

I am very cautious about any vaccinating now that I've researched it so thoroughly. My 7 year old was hospitalized after his MMR and I am one of the moms who believe vaccines have played a big role in my children's health issues. We have yet to vaccinate our 2 year old daughter at all. The boys were both fully vaccinated except that my 4 year old hasn't had an MMR. We will give our daughter just a couple of vaccines when she is 3, but will do it with serious reservations. I just know too much now to feel safe with the vaccine system. You can always have your daughter's titers checked to see if she could even benefit from any boosters that she might be due for at age 5. The ARI website has some great info on vaccines as does generation rescue. If you decide to vaccinate further, make sure she is completely healthy first and space them out. I'm in Washington State so don't have any ideas of a doc in your area.

I definitely wonder about it with my 4 year old who has some OCD tendencies and am keeping an eye on him. It's my 7 year old who has PANDAS. What are you going to have the cardiologist look at? I'm curious as my guy has been complaining of heart pains and changes in his heart rate recently. Our DAN! doc believes that something is happening with his heart and we have speculated that it could be due to PANDAS. He also thinks it may be due to lack of magnesium and potassium or Taurine. I wonder if it's a reaction to the Amantadine he's had him on to help with the ADHD behaviors the latest PANDAS episode brought on. We've done some blood tests and are reducing tha Amantadine and increasing the Taurine. We are going to see what the blood tests show and see if these changes make a difference and if not, do an echocardiogram. I'll be curious to hear what you find.

We saw very little improvement in behaviors with the steroid burst. We felt there was some improvement, but nothing significant. i don't recall any change to his handwriting at that time. The IVIG is what made the major difference. At our son's tech eval at the school this week, the special ed teacher said he didn't look like the same kid they had seen during his initial eval in November. I showed her his new handwriting examples and she was amazed.

For his first infusion, he got 25 grams two days in a row for a total of 50 grams. He weighs 55 pounds. Yesterday, we did another 25 grams again, but will just do it one day per month instead of the two days in a row. We have approval to do it once per month for 6 months, but are going to monitor his progress and make the call whether or not to continue after the first three months. We are using Gammunex.

Our home infusion company does work with our out of state doctor. The name of the company we are using is Accredo Therapeutics. Apparently they are national (per their nurse I'm sitting with right now). We were given the choice of going to our docs office for the procedure or doing it at home. Our insurance company didn't seem to have a preference. If you need me to dig further and find out what happened behind the scenes to make it work, email me at jdpez@hotmail.com. I don't get to check in here very often. I can only do it today as I have grandparents watching my other two little ones during the procedure. Did you guys ever get reimbursement for the first IVIG? We lucked out in that they paid the infusion company directly. Take care and keep me posted if you need more info. Jena

I'm not sure how helpful I can be, but will share what we are doing for our son. Prior to the big exacerbation we experienced in the Fall, he was in private school so we had never done the IEP process. We've been homeschooling him since while we've gone through the IEP process to get services ready for next year in case we send him to school in the district. They are including a medical component to the IEP to address PANDAS. Our doctor is writing a letter to describe PANDAS and all that it can entail....all the possible ways it can impact Cam. As a part of that, we will have an emergency plan in place in case (God forbid), it strikes again. That will include accomodations for handwriting, behavior, and help with things like math. Once we have it done, I will be happy to share the wording. We've also done an evaluation to get him set-up with tech services for if his handwriting tanks again. Our son also didn't qualify for much. I think it was just based on behavior even though his cognitive skills had tanked and his processing speed is super slow now. PANDAS definitely caused the Tourette's symptoms and inattention issues in our child. Now that we are better treating the PANDAS, those symptoms have lessened considerably. Infact, the tics are completely gone now. Hope that's helpful. Jena

Ceftin made an immediate difference for our son (Zithro had stopped working), but when we combined it with Dipan 9 (an enzyme) and EDTA (oral) as sort of a biofilm protocol, we saw very big gains. We were also doing Ribose and colostrum during the first few weeks of the biofilm treatment, but discontinued those two. The IVIG has made the biggest change. He still has some cognitive changes based on the PANDAS attack in the Fall, but is almost back to himself now. His tics (which were pretty severe and constant) are completely gone, his meltdowns, aggressive reactions, anxiety and OCD have lessened considerably, he doesn't have any ADHD or fidgety behaviors, numbers no longer look like a foreign language to him, and his handwriting is amazing. Most importantly, he's beginning to feel good about himself again and can interact with friends and learn. We are still homeschooling, but are thinking he may be able to go back to school for 2nd grade next year. I'm so glad your daughter is doing better. I pray you are able to find the right treatment options for her. Jena

I'm also so sorry the second infusion didn't work out and you are once again getting the run around. As I write this, I'm on my son's bedroom floor and he is hooked up for his second IVIG treatment. The first one in January made such a huge difference for him. Our doctor has recommended doing it once per month for 6 months. We still aren't sure we are going that far, but feel confident in doing it a couple of more times. We've been very fortunate in that we received full coverage and a visiting nurse service is able to do it here at home. I'll say prayers for your son and this maddening situation. Take care and keep on pressing. Jena

Interesting. My son, who had already been on Vitamin D supplement, tested in the extremely low range for it in the Fall during our worst PANDAS time. The doc had me increase it to 10,000 IUs for two weeks and then go back to 5000 per day. His PANDAS symptoms have improved dramatically over the last 8 weeks. I was giving all the credit to the biofilm protocol we are doing along with Ceftin, but perhaps the increase in Vitamin D helped as well.

My son's breath was also bad during his worst PANDAS time in the Fall. It's cleared up now that he's doing better. He also has a reaction when siblings have strep, even when he tests negative. In November, his behavior tanked and his tics increased dramatically and I took all three kids in to have strep tests. The doc on call thought I was nuts as none of them had any signs of strep. She went against her better judgement and cultured them since I pressed. Both my son's tested negative, but my daughter was positive. We actually use our son's behavior as a barometer for strep. We don't wait for the strep symptoms, PANDAS shows us every time.

I wish I could help also, but haven't had luck with Neurologists here. They both didn't believe in PANDAS and tried to prescribe psych drugs for my son. The first wanted to put him on Zoloft and the second spent 20 minutes trying to convince me to put my 7 year old child on Risperidol (sp?). Instead, I've worked with my DAN! doctor and my son is doing so much better on continuous antibiotics and biofilm treatment. We are doing IVIG next week, but he is already greatly improved and I'm so glad I didn't listen to the Neurologists. We explained the situation to our son and he gets it that it's not him choosing some of these behaviors; it's the PANDAS controlling and tricking his brain. That being said, he still has consequences for things like violent behavior. It was more difficult during the full Tourette's time as I couldn't discipline him for repeatedly saying "Idiot", Crap", and "Fart" and now my 4 year old has begun saying using "idiot" and his brother with PANDAS has stopped. I think it's really helped our 7 year old to talk about what's happening in his body. During the worst of it, we talked about his tics with him. His anxiety surrounds balloons and we have accomodated his requests not to have balloons and I do social stories for him about them, but we also talk about the fact that worrying about balloons is another trick the PANDAS is playing on him. Taking that approach has worked in our family. The important thing is to let him know you aren't upset with him about these behaviors and that you understand he doesn't have much control over them right now. It's a medical condition (lots of people have medical conditions that they need help with) and you are working with doctors to find the best way to help him. It's nothing to be ashamed of. It's something that happened to him, not something he is doing. Hope that's helpful. It's a tough road and we all know how hard it is to see our children suffer like this. Jena

I spoke with Dr. Swedo a couple of times at the conference (I was actually there to stalk her and talk with her about my son) and she explained to me that the IVIG they used in their study was more risky at that point for Hep C. I'm sorry I don't remember why, but it's my understanding that they screen better for that now. The reason she gets so strong in the talk about only doing IVIG once is because I had been told by a couple of DAN! doctors at the conference that for kids with PANDAS and Autism, several IVIG treatments were necessary. Our DAN! doc is actually listening to Swedo and we are doing it once at Dr. K's levels. Hi EAMom, I agree! I also thought it was interesting that Swedo seemed to think IVIG was more risky than plasmapheresis. My DD got a steriod burst over the Christmas break, and responded beautifully. I saw a sunny side of her personality that I thought was gone forever. I'm really agonizing over IVIG - Swedo said two of her patients contracted Hepatitis C. Does anyone have info on how the manufacturers ensure a safe product, and what their track record is? Product recalls? People sickened by the procedure? So, I googled plasmapheresis, which doesn't seem like a stroll in the park either! No easy choices here. I'm keeping the pressure up for the tech people at this website to post Swedo's Q&A. I'll keep everyone posted.

Our son was first diagnosed with PANDAS at age 4 1/2 and he responded well to short rounds of zithromax whenever he would have an exacerbation of symptoms. We didn't start the ongoing antibiotics until this past summer (at age 7). For us, that was too late and he had a really bad PANDAS attack which caused full Tourette's with coprolalia, ocd, severe anxiety, adhd behaviors, and loss of impulse control. He's been out of school ever since and we are doing IVIG next week. After continous Ceftin since September and doing biofilm treatment along with it for the past 5 weeks, he is greatly improved, but still has damage from the attack in the Fall. For my husband and I, making the decision to do IVIG now (with it's risks) is to save him from further brain damage. We just completed his evaluation with the school district and he went from the highly superior range in all areas, to very low on the cognitive piece. He's a kiddo that could build elaborate lego structures and now just stares at the legos and doesn't seem to know how to build the ideas he has. He also has continued ADHD symptoms which he didn't exhibit before, has anxiety about balloons of all things, and still can have daily meltdowns. O ur doctor has also recommended transfer factor which we haven't tried yet, but we do give him colostrum from Kirkman Labs. In the talk I heard from Dr. Swedo at the DAN! conference, she mentioned that several kids in their study had symptoms of enuresis so your son's frequent urination also makes sense from a PANDAS perspective. We are receiving coverage for the IVIG treatment, but not because of the PANDAS. Our doctor faxed in lab results which showed our son had a compromised immune system in other areas. If you do get the PANDAS diagnosis, I would take it seriously and do the prophylactic antibiotics. I wish we had from the beginning and had been able to avoid the nightmare that happened in the Fall. Hope this helps. Jena

We are doing IVIG for our seven year old son as soon as we can get it set-up. We got the best Christmas present possible when we heard it will be covered at least partially by insurance. Our DAN! doctor is going to follow Dr. K's protocol. My questions have to do with helping to prepare our 7 year old son. He does best when he's prepared for new experiences. He's had several IV's in the past, but nothing that will last as long as the IVIG. For those of you who have done IVIG, what experiences did your child have during and after the procedure? Any negative reactions? I'm looking for any and all info I can use in a social story for our guy. Also, since we are doing this with a doc who has experience with IVIG, but at much lower doses than this, any other info on how Dr. K and his staff administered it would be helpful as well. We did our phone consult with Dr. K in October and he said he would be happy to coordinate with our doc. I emailed his office and put him in touch with our doc, but thought you guys might be faster and have more info for me. Thanks so much for your help. (Diana - can you believe we got insurance coverage?? I'm still pinching myself. Jena

We've been seeing yeast overgrowth as a result of the antibiotics as well. We do both Amphotericin B (a strong antifungal) and probiotics. The probiotics we use are from Kirkman labs in Oregon and are called Superprobio. They contain 15 Billion CFU's of different Lactobacillus and Bifidobacterium. I'm supposed to give our son 2 capsules of the probio two times per day as well as 2 teaspoons of the Ampho B twice per day. When coordinating all the other things he's on, I end-up missing one of the doses and think that's part of our problem. We've learned never to underestimate the difficulties yeast overgrowth can cause. Jena

When our son was diagnosed with PANDAS 2 1/2 years ago, we weren't offered the option of continued antibiotics. Our doctor prescribed zithromax whenever we had symptoms. The symptoms which were relatively mild would subside with the short round of antibiotics. Our son had zithro about 12 times in 2 1/2 years. In early September, we had a severe PANDAS reaction. I call it PANDAS from ###### and the zithro would no longer work. Our son has been out of school for 6 weeks. He's 7 years old and his life has been stolen from him. We switched to a new antibiotic, Ceftin which has worked wonders along with a steriod burst. We are now considering IVIG therapy for him. I can't help but wonder if this could all have been avoided had he been prescribed continuous antibiotics. Even now, on daily Ceftin, his PANDAS symptoms surged back on Friday. I took he and our 1 year old in to the doc and against the doctors wishes had them both cultured for strep. My son came up negative, but our daughter was positive. This thing is a bear and shouldn't be taken lightly.

My son was diagnosed with PANDAS 2 1/2 years ago, but it didn't become a nightmare until recently. In the past, he would get sudden onset of tics (both vocal and motor) and would have increased impulsivity. We would do a round of Zithro and the tics and impulsivity would go away until the next sore throat. I've often said it's caused by more than strep in my son. We had a good summer behaviorally, but he was sick and on antibiotics for much of it. Vancomyacin for clostridia, metronid for severe stomach issues including blood in his stool, and Zithro for PANDAS. These alternated and were not all done at once. At the end of Kindergarten in the Spring and throughout the summer, people were saying my son had recovered from autism. He was doing that well. In early September, all ###### broke loose. Extreme impulsivity and full-on Tourette's with coprolalia. We had to pull him out of the private school he was attending and have begun a homeschool program while we navigate the IEP process in our public school program for the first time. He was on Zithro every 3 days when this happened. We switched to Ceftin as I believe he may have built up an immunity to the Zithro. We saw immediate improvement with the tics and impulsivity improved, but still stayed impaired. We ended the round of Ceftin and went back on Zithro every three days. Tics came back with a vengeance and impulsivity increased again. We are now back on the Ceftin with isome mprovement and have begun a steroid burst. Our doc has prescribed prednesone at 3 times per day for 3 days, 2 times per day for 2 days, and then once per day. So far, we haven't seen a big improvement, but it's still early. I'm obviously concerned about continuing to use antibiotics and don't want to see another sudden deterioration like this. We had our doc send our labs to Dr. Gupta at UC Irvine for review to see if he thinks our child would be a good candidate for IVIG. I've also been on the phone to Dr. Swedo's staff at the NIH and am hoping to see her for coffee when she speaks at the DAN! conference in San Diego later this month. Our DAN! doc is for IVIG, our pediatrician says to try another year on the antibiotics and some steriods. We are worried about the dangers of those medications, but also worry about the risks with IVIG. The Neurologist and Tourette's specialists don't believe in PANDAS and don't seem at all concerned about this sudden neurological deterioration. We've made an appt with another Neuro, but he can't see us for 2 months. Did anyone find anything important with an MRI? I'm worried about getting my son back and also about how this will impact him socially and emotionally at his new school. I'm happy to have found you group of parents and would welcome any feedback you have. Our son is 7 and it feels like a different kiddo is living here. Thanks for your help.