mama2alex

Here's another one I found interesting. It was posted a few weeks ago by one of the moms here: http://pandasvaccinesandmore.blogspot.com/

Here it is: http://pandasvaccinesandmore.blogspot.com/ Definitely worth checking out! Jennifer

I agree with not keeping the kids in a bubble, but I'm not sure I would send my son to house where I knew there was a strep carrier. It's such a hard decision. Is your son on antibiotics that would fight strep if he did get exposed? If not, I think I'd be inclined to push for the sleepover at my house. Just curious, how do you know the brother is a carrier? Is that boy on antibiotics to erradicate the strep?

I agree with others on this. Don't stress too much about it. A narrative starting with first onset of any symptoms (not just full-blown PANDAS) and checklist of PANDAS symptoms give him a lot of information. Also, if you don't have lab results or remember what they were, just let him know you did the test, and he will tell you whether he needs to see the results or not. So happy for you that you have an appointment in 12 days! My understanding is he's getting so busy he's booking at least a month out. Hang in there, I know it's hard to wait.

There was a thread a few weeks back that discussed thyroid, but not sure it was titled in a way that would tell you that. I just can't remember. Does anyone else know where this is? I think part of this discussion was to do with body temp. I think my son't thyroid is "normal" but what's interesting is that pre-IVIG he was cold ALL THE TIME. Post-IVIG, he's more like the other boys his age, tearing off his jacket all the time, complaining about being hot when he's running around, and actually sweating (something I didn't see much of before). I don't know if this is directly related to thyroid, but it's interesting. Santi, if you don't get answers on this thread, you might want to start a new one titled "Thyroid Questions." I know there are folks on here who've looked into this.

Why was the blog address edited out?? I had originally posted my PANDAS blog here but it got deleted in case you run into this. You can easily find it on google titled PANDAS, Vaccines and Mental Health. Thanks again.

It's really common for autistic kids to be allergic to casein, the protein in dairy. My friend, who's older son is autistic, has kept her 2 1/2 year old dairy free his entire life, just to be safe, and he's doing great. I think with autistic kids, the allergy is expressed through behavior and attention, so very similar to what you're describing. I became sensititve to dairy a couple of years ago - it gives me pretty bad headaches. It's hard to find good tasting substitutes for milk and ice cream, but I finally found a couple I like. For milk, I use Almond Breeze, which you can find at Whole Foods, Trader Joe's and I think Safeway has it too. They have chocolate, vanilla and regular, which I use on oatmeal. It's MUCH better than soy milk. There's an ice cream substitute that's pretty good. I think it's called "Decadent." The packaging is brown and you'll find it in with the soy ice cream, at Whole Foods and Safeway. Keep working on it. It can take time to go totally dairy free, and it is really hard. Just keep chipping away at it. I think there are message boards out there for parents who's kids are dairy-free. You might want to look at those for ideas. Have you tried digestive enzymes? I think these sometimes help kids with food sensitivities.

Wow! This is HUGE!! I'm so happy for you that you've found such an important piece of the puzzle for your family. And thank you for reminding everyone here how important this is. I vote for being agressive with the antibiotics - don't let the docs talk you out of that. Maybe it makes sense for you to take whatever has worked for your son, since it must be the same strain?? And please don't be too hard on yourself for waiting to check, I don't think anyone of us have taken this part seriously enough. It took us a few months to get around to doing it, but we've all been tested now. My husband and I were both normal range for ASO and anti-DNase B (no siblings in our family), but we're so glad we did it. It gives us peace of mind. Please EVERYONE - get your entire family's titers checked!!!

We have some experience with this, so I'll tell you what I know. If you are considering the Pneumovax, you should get his s. pneumonae titers checked first. Here's why: If you check the titers and they are all within acceptable range, then you don't need the vaccine in the first place. If you check them and some are low, and then you decide to get the vax, you can recheck them a few weeks after the vax and see if he mounted a response. If he doesn't, then this may be diagnosed as "Specific Antibody Deficiency" which may qualify him for monthly IVIGs. The optimal route would be if the immunologist would give him IVIG for low IGGs, but make the first dose a higher dose to treat PANDAS (Dr. K does 1.5 mg/kg and Swedo did 2mg/kg of body weight). We started out with 2mg/kg for our 9yo and he is doing much better 13 weeks post IVIG. He was initially diagnosed with Specific Antibody Deficiency, and the plan was to give him the high dose the first time, then lower monthly doses for the immune deficiency. However, in our case, they discovered they'd misread the lab results after his first IVIG, so we never had the monthly follow-ups. So to answer your questions: 1. No, I think the monthly IVIG's for immune deficiency are a lower dosage than is used to successfully treat PANDAS. So you'd want to ask (beg?!) to do at least 1.5 mg/k the first time. We got lucky and our immunologist agreed to this. I don't have any idea how he coded it for the insurance company, but it was preapproved. I have not gotten notice that it's been paid yet, but was assured by the financial department at the hospital that if they pre-approve, they will pay. 2. Our son had the full course of Prevnar shots when he was little (4 I believe). These are different than Pneumovax - Prevnar is for babies and young children and only contains 7 serotypes of the bacteria. Pneumovax is for older children (when needed) and adults. It should only be given once every 5 years, as I understand it. It contains 23 serotypes of the bacteria. We made the VERY difficult decision of giving our son the Pneumovax vaccine last fall, to test for Specific Antibody Deficiency. He's had pneumonia 6 times and has been hospitalized with it twice, so pneumonia is a big concern for us, but still it wasn't an easy decision. He was not doing well (in terms of PaNDAS) at the time, but we did not seem him get significantly worse after the vaccine. But I know of PANDAS kids who've had terrible reactions to Pneumovax, so it felt a bit like Russian Roulette. In the end, you'll have to weigh all the risks and potential benefits, and make a decision. But this is why you should start by checking his titers - no use risking the vaccine if he doesn't need it! 3. If the immunologist recommends IVIG for immune deficiency, you should be able to get it covered by insurance. I believe most, if not all, insurnace companies won't cover it for PANDAS. So if you do IVIG and start with the higher "PANDAS" dosage, I'm not sure how to get that covered. Our doctor was able to, but I don't know exactly how he coded it. Hope all that is helpful!! One last thought: Have you looked into whether there is a PANDAS knowledgeable immunologist anywhere near you? That would be your best bet.

For a multi-vitamin, we give our son Nutrivitamin Enzyme Complex without iron by Integrative Therapeutics. We give him Florastor and Lacto Tri-Blend as probiotics. Also give him 2,000 IU's a day of D3. Here's a thread on vitamin D, if you're interested: http://www.latitudes.org/forums/index.php?showtopic=6311

Thanks for posting this! I will forward this to a mom who no longer reads this forum very often - because her child is WELL! It would be great to keep the media coverage ball rolling. Every time PANDAS is covered on tv, more families discover that this is what they are dealing with. well that's the thing.... i always thought that when my hubby was on abx his tics seemed better...though they don't get worse when sick... and of course abx are only 10-14 days...nothing higher dose or longer term so does your brain lock in a certain amount of this that if you have it after x age it just there.... as adults i'd almost bet...you'd need to do ivig...jmho

Dr. T, I really like your suggestion. Showing a range of presentations is so important. I wanted to add that, like my son, I think there are a lot of kids who were not perfectly healthy before they developed full-blown PANDAS. They were mostly healthy, nearly normal kids, but there were subtle (but not always diagnosable) problems such as mild defiance, some moodiness, mild sleep issues, allergies, asthma, sensory sensitivity, etc. Maybe these kids are not the perfect research subjects or "made for tv" but I think they are an important, and perhaps large, subgroup. If I could choose (and I can't) I would present 4 stories - 15 min each - with 4 or so specialists adding commentaries, along with parents 1. An otherwise healthy child who gets a sudden onset of a tic (like Lauren) 2. An otherwise healthy child who develops OCD 3. A child with autism who develops a marked worsening of symptoms 4. A child who develops severe PANDAS and the "exorcist syndrome" I think this would really show the range of this condition. Keep the "does PANDAS exist" controversy out of it .... By the end of the show, that should be self-evident Dr. T

Thanks for posting this! It's 7:30 here, but I'm going to watch it later.

This is from Wikipedia, for what it's worth: The exact long-term safe dose of vitamin D is not known. In 1997 the U.S. Dietary Reference Intake Tolerable Upper Intake Level (UL) of vitamin D for children and adults was set at 50 micrograms/day (2,000 IU)[93], but this is viewed by some researchers as outdated and overly restrictive.[94] A 2007 risk assessment was made by two employees of the dietary supplement trade association Council for Responsible Nutrition,[94] that represents companies including Amway, Bayer AG and GlaxoSmithKline,[95] and their two colleagues, who declared that they had no personal or financial conflicts of interest. They suggested that 250 micrograms/day (10,000 IU) in healthy adults should be adopted as the tolerable upper limit.[94] In adults, sustained intake of 1250 micrograms/day (50,000 IU) can produce toxicity within a few months.[3] For infants (birth to 12 months) the tolerable UL is set at 25 micrograms/day (1000 IU), and vitamin D concentrations of 1000 micrograms/day (40,000 IU) in infants has been shown to produce toxicity within 1 to 4 months. Other sources indicate that the threshold for vitamin D toxicity in humans is 500 to 600 micrograms per kilogram body weight per day."[96] My chiropractor said 1,000 IU (in a supplement) per 25 lbs of body weight per day is a good rule of thumb.

Elizabeth and Wendy, These are interesting ideas. I'm going to look into the bentonite clay and maybe up his probiotics a little more. Here's something I found on bentonite clay, in case anyone else reading this is interested: "When bentonite clay absorbs water and swells up, it is stretched open like a highly porous sponge. Toxins are drawn into these spaces through electrical attraction and bound. In fact, according to the Canadian Journal of Microbiology (2), bentonite clay can reportedly absorb pathogenic viruses, as well as herbicides and pesticides. The bentonite is eventually eliminated from the body with the toxins bound to its multiple surfaces. Bentonite clay and diarrhea In his book "The Clay Cure" (3), Ran Knishinsky discusses how diarrhea can be remedied through the use of bentonite clay because of its ability to bind stools. Bentonite clay can take effect right away by binding to irritants in the gastrointestinal tract. It's a good idea to mix the bentonite clay with 1 cup of applesauce, which not only makes the clay more palatable, but also adds pectin, which is another binding agent."

Could this be a cause of diarrhea? I'm assuming the full metabolic panel that Peglem mentioned includes the test that checks liver enzymes. The important thing they check is the liver to make sure the antibiotics are not elevating the liver enzymes. I forgot the three character code for this test. It starts with an A.

Thanks! This is what I'll ask for. My pediatrician does a full metabolic panel every 6 months- pays careful attention to liver enzymes in particular. And since we're doing a draw anyway, if there is anything else we're concerned about we check that too.

I'm concered because Alex continues to have occasional diarrhea even though we've lowered the Azith to 375mg/day. I read in Saving Sammy that they regularly did CBC with differential to "track how his bowels were doing." Is anyone else doing testing to see if the antibiotics are having any negative effects? I'm going to have the DAN doc check for yeast, but is there something else we should be testing for? He's on a lot of stuff to fight the yeast, so I'm not sure whether that's what's going on.

This is great news! Is he taking 250mg of Azithromycin a day? What does he weigh? In terms of what it means, it may mean the antibiotics are starting to kill off an infection, and his body has been having an autoimmune response to the infection. Also, Azith is supposed to have anti-inflammatory properties, so this may be part of what's happening - a reduction in inflammation in his brain. This response is definitely supportive of PANDAS as the cause of some or all of his symptoms. As a next step, I'd recommend setting up a phone consult with one of the PANDAS experts - Dr. Kovacevic or Dr. Trifiletti. They can help you get closer to a definitive diagnosis and create a treatment plan. As I mentioned, there really aren't any in N. California. I'm really happy for you Andrea! I hope things keep improving.

Saying a prayer for your family before I go to bed. Please keep us all posted tomorrow if you have time.

Everyone's different, but we saw some minor improvements within 3 days. For us it was a reduction in fear of robbers, less checking, less agitation, and some moments of improved mood (happy hyper, as I called it). I'd recommend keeping track of any behavior/tic changes you see - most experience a "sawtooth" pattern of recovery. I took copious notes for months, but recently discovered Buster's charting system, which is much easier. You can find it here: http://www.latitudes.org/forums/index.php?...ic=6685&hl=

I don't understand why high dose Augmentin is the last step in the plan - it could take months! Obviously the Penicillin is doing nothing for him, as it does for most PANDAS kids. I would call Dr. K and ask if you can try the high dose Augmentin NOW. He's in crisis, so I think this step-wise approach needs to be reevaluated. IMHO high dose antibiotics should be a priority, because it really sounds like he was exposed to something. I also agree with trying Ibuprofen, if you haven't already. Also, can you do the steroid burst soon? Hang in there! You will get through this. You're in my prayers.

I'm so sorry you're going through this. It's the worst when they are begging for help and we can't help them yet. I remember the sick feeling I had when we were in this waiting mode - we listened to my son beg for us to help him for several months while we were waiting for someone to help us! It's awful. Hang in there - you're on the right path.

For those who follow the autism debate... http://www.time.com/time/nation/article/0,...67796-1,00.html I wasn't at all surprised to see Paul Ofitt quoted in this article. He always is... This is the part that really set me off. They are REALLY reaching, but it's in TIME MAGAZINE, so hey, it must be true! "She believes she did fix her boy. A psychological evaluation from UCLA's neuropsychiatric hospital, dated May 10, 2005, was "conclusive for a diagnosis of Autistic Disorder," Or is this the truth? There are dark murmurings from scientists and doctors asking, Was her son ever really autistic? Evan's symptoms — heavy seizures, followed by marked improvement once the seizures were brought under control — are similar to those of Landau-Kleffner syndrome, a rare childhood neurological disorder that can also result in speech impairment and possible long-term neurological damage. Or, as other pediatricians have suggested, perhaps the miracle I have beheld is the quotidian miracle of childhood development: a delayed 2-year-old catching up by the time he is 7, a commonplace, routine occurrence, nothing more surprising than a short boy growing tall. " Read more: http://www.time.com/time/nation/article/0,...l#ixzz0h3PNl23A

Yay!! So many good things are happening at once! Pepsi Refresh Project, Got Strep campaign, Dr. K's paper coming out soon, speakers at Autism One, the Fact Sheet on the IOCDF website... lots happening on many fronts. Thanks for posting this!