NancyD

I don't understand, why can't risperdal be taken with zith? I don't understand that either. Although zith didn't help my daughter the way Pen VK did she was able to take it with Risperdal. Hey he does have a cold ah huh!! And the zith has a iteraction QT something heart related So I was told is this true??? The cold may be your answer! I have found my daughter's symptoms to elevate ~ one week prior to getting a cold, sinus infection, or being exposed to strep. I had not heard that about the zith. Try calling your local pharmacist and see what s/he says. So do you think thats why the Risperadal isnt working as well I have found that the Risperdal only goes so far and any regression in behavior is due to elevation in strep antibodies. Once she is over the cold things get better. When my daughter gets a cold or allergies I give her high doses of Transfer Factor and Querciplex (quercetin) and that really shortens the lifecycle of the cold. Don't use any tylenol as it depletes the glutathione levels; instead use motrin for a fever.

I don't understand, why can't risperdal be taken with zith? I don't understand that either. Although zith didn't help my daughter the way Pen VK did she was able to take it with Risperdal. Hey he does have a cold ah huh!! And the zith has a iteraction QT something heart related So I was told is this true??? The cold may be your answer! I have found my daughter's symptoms to elevate ~ one week prior to getting a cold, sinus infection, or being exposed to strep. I had not heard that about the zith. Try calling your local pharmacist and see what s/he says.

I don't understand, why can't risperdal be taken with zith? I don't understand that either. Although zith didn't help my daughter the way Pen VK did she was able to take it with Risperdal.

Every child is different so it's hard to say what will work better for your son. If you ask most psychiatrists I think they will tell you they find Risperdal to be more effective than Geodon (generally speaking). But you have to try it to see what works for you. Any time things got worse for us it was usually due to one of four reasons: (1) my daughter was about to come down with a cold or sinus infection, which meant her strep anti-bodies were elevated; (2) Risperdal was losing its effectiveness (this happened frequently over the years and I had to take her off it slowly for 2-3 miserable weeks, then put her back on it very slowly); (3) she ingested cross-contaminated food (e.g., gluten, casein, soy, additive, dye, etc.) that aggravated her gut, which in turn resulted in behavioral problems; (4) the antibiotic she was taking created a yeast overgrowth in her gut, which also resulted in behavioral problems. In addition to this, environmental factors could aggravate her. It's all so complex!

Oh, Melanie, don't feel bad. You're faced with some really tough decisions that most parents never even have to think about, and you're doing all you can to help your child. I can tell you that my daughter was miserable, miserable for a long time before i decided to try risperdal for her and it seemed to be helping at 1st, too. I think that's because it helped her sleep! But a few months down the road, it made her worse. I know it has worked well for some, i had to give it a shot. My theory for why it seems to not work as good (sometimes) after awhile is either 1) it blocks cholinergic transmission or 2) the PANDAS is acting up again... I'm still trying to find something to help her. Her anxiety is so out of control, all the time, supplements and diets helped only minimally (very glad I tried them, though and really happy for people who get good results there), so i just decided I would very carefully, slowly give pharmacology a chance. We have found only minimal help so far with pharmacology, too. Anyway, wanted you to know you don't have to be ashamed of trying your best to help your son. Melanie, There is nothing to feel guilty about. Although psychiatric meds should not be your first course of action, sometimes you need them while you are trying other methods (e.g., nutrition, supplementation, detoxification, etc.). We tried everything for so many years (my daughter has been on the DAN protocol for over 10 years) and if it weren't for Risperdal and penicillin I don't know if either of us would be alive today to tell the tale. Her PANDAS caused very very violent rages. We lived with her rages for years. Many days we could not leave the house. I cannot begin to tell you how many doors and walls have been damaged! As much as I wish we had been able to diagnose the PANDAS years ago, I am still grateful for the help that the Risperdal gave us. Nancy

We tried Geodon twice but it didn't help. We found that Risperdal worked better than any of the other psychiatric meds. My daughter was on it for 10 years -- all she needed was a low dose (.5 mg 2x daily). It helped a lot with mood dysregulation, sensory issues, and rages; minimally with tics and not at all with anxiety and OCD. She was able to go off it recently after her 7th month of IVIG infusions and, so far so good. But every child is different and what works for one may not necessarily work for another. Nancy

Kelly, In Massachusetts pre-existing conditions do not come into play...and I believe that HPH serves outside of Massachusetts, Maine, and New Hampshire. It would be worth your looking into. I just tried calling them but their normal business hours are M-F. You can call 800-848-9995 on Monday. I checked out a lot of insurance companies and this was the only one I found that would cover IVIG for PANDAS. I have a PPO so I don't need prior authorization or a referral. This has saved me thousands of dollars every month! Also, some states offer special health plans for children and families with disabilities, often through the Division of Medical Assistance. You can search online under "[your state's name] + Division of Medical Assistance." I hope this helps. Nancy

P.Mom, My daughter had Highmark BlueShield and could not get coverage. Then went to BCBS of Mass and still could not get coverage after appealing several times. Now she has Harvard Pilgrim Health and she gets full coverage. Nancy

EaMom, My daughter's dose is 0.8 gm/kg Gammagard every 28 days (about 2x the expected replacement dose for someone who is immune deficient). Just before the 3rd infusion we saw amazing results. She regressed a little two months ago but then came down with a cold. I gave her high doses of Transfer Factor and Quercitin and that helped. She was back to where she was within a week and now she is holding steady. I forgot to mention that the last set of titers were around 75 (down from 3000). We just tested her IgG levels and are waiting to see the results. Dr. Fuhlbrigge says "you don't want to push the IgG levels too high -- makes the blood viscous causing headaches and leads to cardiac strain." The anxiety/intrusive thoughts are fairly invasive. She tells me almost daily that it's driving her crazy. Technically, she has been off the autism spectrum several years. She no longer meets the diagnostic criteria, though she still has some residual issues -- she misses subtle social cues, has auditory processing deficits, and talks non-stop (I should have been more careful what I wished for when she had no language at age 3!). She also had severe colitis when she was younger but we cleared that up with monthly glutathione IVs over a two-year period. She had been gluten-casein-soy-dye-additive free for years but can now eat whatever she wants -- although I try and keep her dye- and additive-free and give her as much organic food as I can. Nancy

I, too, am new to this forum, though I am not new to PANDAS. My 13 YO daughter has very severe PANDAS. She developed an overnight onset of tantrums, extreme hyperactivity, impulsivity, anxiety, tics, OCD, sleeplessness, and mood dysregulation at the age of 3 1/2. Coincidently (or not), she had a staph infection in her hand one week prior. Since she had already been diagnosed with mild ASD at the age of 2, everyone assumed these sympoms were part of the ASD. At the age of 6 she was misdiagnosed with bipolar and ADHD. Over the years her tantrums progressed into violent rages (October-March were the worst months). Risperdal was the only medication that helped. Finally, at the age of 7 we saw a specialist in NY who suggested we check her ASO and anti-DNASE B levels, even though she had never had a strep throat infection. Her levels were up around 3000. We put her on penicillin and within 24-hrs her violent rages stopped. (As a side note, my brother had SC when he was little.) Over the years we tried reducing the penicillin to a prophylactic dose but her symptoms became more severe so we had to keep her on 250 mg twice daily. Her doctor suggested a 6-month trial of IVIG but, of course, insurance would not cover and I could not afford the expensive treatments with all the other out-of-pocket expenses for her ASD treatments. As she moved into puberty the tics and OCD became quite prominent, the tics turned into full-blown tourettes, she was depressed, and she was losing friends. We tried everything from traditional medicine to alternative treatments. Nothing helped. Last August we started seeing Dr. Fuhlbrigge (Deja2, you will like him -- he is wonderful to work with!) and he supported our doing monthly IVIG infusions. After fighting two insurance companies for years and getting nowhere, I discovered quite by accident that Harvard Pilgrim Health (HPH) covers IVIG for PANDAS. So since August, my daughter has been undergoing monthly infusions and HPH has been covering it 100%. I am happy to report that the tics are nearly gone, her moods are regulated, she is sleeping through the night, she is happy, and her grades have improved from Cs and Ds to all As. And, for the first time in 10 years, she is no longer taking Risperdal. The only two things that have not gotten better are the anxiety and intrusive/obsessive thoughts she gets. We do not know how long she will have to undergo IVIG infusions, but it could be years. Perhaps because she has had the PANDAS for so many years, it may have done some permanent damage. If I have one regret, it was not getting the IVIG infusions 7 years ago when my daughter was first diagnosed. I am so pleased to find this forum and am particularly interested in the information and insight Buster is providing. I have been following Sue Swedo's work for years and have contacted her a few times. I have been told that most of the kids from the original IVIG clinical trial are doing well. However, the kids were young when they received the infusions. This may make a big difference. I look forward to participating in this forum! Nancy