nicklemama

I read this. I cannot understand how using the same subjects for 'new' testing is somehow novel or advancing research. He needs to be called out on this.

That's exactly how my son was. He saved the worst for me. He never had problems at school. He would not talk much, kept to himself and had no friends, only wanted to work alone not in groups. He's gifted and has always done very well in school. I honestly think he did not pay any attention in those first couple of years of school. I think he was very caught up in his OCD and intrusive thoughts. He was so far ahead when he entered school he was lucky that he got by with it. He was in kindergarten when it all started. It took a year to finally get the PANDAS diagnosis. In that time, his home behavior was awful and he began targeting my husband too. He also had severe separation anxiety and while he was horrible to me he had panic attacks and went crazy unless he was near me. It was a real trick getting him to go to school. That was the only place I could be out of his sight without going crazy. I had to lie to him to get him to go each day.

That's what I've been trying to figure out Smarty. I'm no researcher. The numbers don't add up to me. It would be helpful if I could access the entire article but I'm not giving even a penny for anything he has written. Another mom has access and she said at the end he acknowledges the small number of test subjects but goes on to say his results say there is no justification for abx or immune therapies for PANDAS.

He's got a lot of 'helpers' signed on to this paper. I'm hoping someone that really understands the minutiae of research writes a rebuttal and rips it apart.

How can we be sure he has PANDAS test subjects? Last time, it turned out he didn't. Dr Leckman admitted it and moved to the PANDAS side. If you notice, he seems to be trying to equate antistrep antibodies with antilysoganglioside. He also left out anti dopamine 1 in his testing.

Harvey Singer and company have recently published the following: http://www.ncbi.nlm.nih.gov/m/pubmed/24080310/ He just will not stop.

I need Dr Swedos contact info, specifically a phone number. I have a mom with a 5 yo girl. The moms dad is a retired physician and he just read the info from the links I sent on research and info.. He would like to speak with Dr Swedo. He's onboard.

More effective and bypasses the gut is my guess.

I agree with JoyBop. Do the tests. Do what he recommends. You are going there to get the best from a brilliant mind. Steroids did not affect my son and he had two coinfections, albeit, they are not Bart. If I had an appt with Dr Najjar and my son was being hospitalized for testing, I'd follow his lead and not look back. You chose him because you trust him. If he can't get it done,who can in the US?

Give the augmentin with food. My son has been taking augmentin for 3 years, no stopping it, literally, and no stomach issues. My sons worst part of PANDAS was anger and rage. Sac boulliardi did not and does not affect him. It was recommended by Dr T. I started out using Florastor now I use Jarrow brand because of the price. You will need a probiotic in the billions if you stay on abx.

There are many of us who are Dr K patients. I can't imagine it's an extremely high dose but it may be higher than they are accustomed to seeing. Dr K is not going to give you long course abx. He does recommend probiotics when he rx's for long term prophylactic doses. He will not write an rx without having seen your child. I'd start the probiotics with the rx. Saccromyces boulliardi is a beneficial yeast that is also good to take with abx. Dr K rx'd augmentin 250 mg 2x a day when DS was 7. He's currently on 500 mg twice a day. Those dose has changed as he's gotten older and larger. In an acute episode of strep, the dosing can be much higher, as in 1000 mgs. Don't be alarmed.

I suggest everyone be very careful in deciding a hospital to admit your child to. Beth Maloney recommends only taking your child to a hospital your doctor has privileges in. Scary.

Pandasnetwork has all the literature and research posted on the site. Look through and find what you think is relevant for your pediatrician. The unfortunate reality is many, if not most of us, get no help from our pediatricians. It took me a bit more than two years after diagnosis to find local help.

What a laugh. There is absolutely nothing alternative about Dr K, other than he is open minded enough to recognize and treat PANS. Have you printed out the literature and research supporting treatment and given it to her?

The PA you saw does not appear to me to have much knowledge of Lyme or of antibiotics, in general. HHV6 can trigger PANS. HHV6 is known to have molecular mimicry with strep. Keep your appointment with Dr Murphy. Have you visited pandasnetwork to see what other doctors may be in your area? I'd go elsewhere. You may have to travel. Dr K is not a Lyme expert. He is a PANDAS expert. See what he has to say and what he recommends. Consider traveling. I think there may be a few doctors to consult with in Georgia. My son has never had a known tick bite. We do not live in a Lyme endemic area or so they say. My son has two tick borne infections that he is being treated for. He is not quite 10 and he's been on augmentin and biaxin for 8 months. He's doing really well. He is also a patient of Dr K and had IVIG twice in Chicago.

Were you looking for some definitive answer that says yes or no to PANDAS? Perhaps if you listed what was out of range someone here might be familiar. Without specifics, it's hard to say. Back to the definitive answer. You may not ever find one thing to point to. Statistics from Dr Swedo say 45% of PANS kids have strep as their identifiable trigger. The rest have mycoplasma, Lyme, HHV 6, H1N1, etc.... PANS is a clinical diagnosis. It takes a combination of symptoms that determines whether a child has PANS or not. Dr K says it appears your son has PANDAS. Your description of onset and subsequent behaviors points to that as well. Dr K has been diagnosing and treating kids with PANDAS for a very long time. Are you concerned you have not seen more improvement with the antibiotic given? What antibiotic is it? Perhaps it's not the right one to address what has triggered this exacerbation of PANS. Fifteen days of abx is barely scratching the beginning of this disorder. If this is not the first exacerbation and your son has gone quite some time with PANS it is likely going to take quite some time to see significant improvement. That's hard to think about. My advice is to give the abx 30 days. See the doctor in Seattle and get his/her expert opinion on what the elevated antineuronal means. Consider trying Dr K's steroid burst. This disease is not a sprint, it's a marathon. My sons first exacerbation was four years ago. It's taken a lot of turns and doctors and tests and treatments to get him where he is today. My sons lab work was mostly normal during all that time. The Cunningham test showed high CamKII and two high antineuronals. In Mar of this year we finally found something abnormal that had not been tested previously, ehrlichia and anaplasma, two tick borne infections. Eight months of treatment for these has resulted in a tremendous amount of improvement in my son, nearly 10 now. We've done yeast free diet, treatment for MTHFR mutations, IVIG twice, long term abx prophylactically. Nothing has helped as much as what we've been doing the past 8 months.

Wonderful! Four years ago in Oct 2009 my son received a flumist vax. As we call it, the day that shall live in infamy. My son is doing extremely well at this time. It's about time for some relief and I'm glad you are getting yours.

My sons doctor is no Steve Buhner but she also supplements where needed. DS was very low in ferritin. He was having sleeping issues, restless legs and constant fidgitiness, symptoms of low ferritin stores. For two years, no other doctor would address it. We started seeing her last Feb and when his ferritin was once again low, she began daily supplementation with a low dose, gentle iron. We also found ehrlichia and anaplasma. I asked her about supplementing with parasites. She said she has seen positive benefits of supplementing and he would struggle with getting well because your immune system needs iron for proper function. While he turned up negative for babesia, she felt he may have it because babesia uses iron. We started the supplementing and never looked back. He's done nothing but get better. Fast forward to Wed. At his appointment, I learned his ferritin is finally within the middle of normal limits and we are reducing the iron to twice a week. He is very close to 100% and it's taken four years to get here. We are savoring this for however long it lasts. You can supplement and it won't be the end of the world. That said, I would do it only under a doctors supervision. We've done blood testing every two months this year. She also said at his appointment, when you kill off bad gut bacteria, the body is better able to absorb minerals.

Please come join us on the main PANDAS /PANS board. There are a couple of other moms from Australia that might be of help to you, as well as the rest of us.

Dr Swedos slides from her presentation at the recent conference are available at the NE PANDAS parents conference site under links and resources. Copy it and present it to your doctor. It's worth trying to get your doctor on board but in the end, the majority of us have had to seek help elsewhere. I had to go out of state for two years before I finally found help locally. My son has been on abx continuously for three years. Any time we reduce it to prophylactic dose, he backslides so he's been on treatment dosing for most of,this calendars year. Dr Latimer addressed C Diff in her presentation. She said she has not had a child with C Diff in all these years. She stated PANDAS kids seem to have something different about them in that they don't get c diff and most tolerate long term abx that rips many peopls stomachs up in a week or so. I wish they all had posted their slides. A DVD will be made available of the entire conference.

PANDAS is a clinical diagnosis. There is no one such 'test'. It's the bigger picture of many symptoms and behaviors. A child getting better on abx is one such clue. You really need a doctor who understands PANDAS to make the determination but I'd be inclined to say if symptoms get better on abx that's definitely pointing in the direction if PANDAS/PANS.

I just read the posted article. Nancy, I can't see any comments. I was going to leave one. I didn't want my email addy to show up to the world so every crackpot would be sending me email. I'll check back and see if anything shows up and then send a message.

You are not crazy despite what others may think. You cannot turn back time and second guess yourself. You must move froward from today. You are moving in the right direction.

Some swear their child flairs taking probiotics with strep thermophilus or eating cheeses and other dairy with it. At the PANDAS conference last weekend, it was said more than once that it is a benign strain that is not related to GAS and is not a problem to consume. My son has no problem with it in yogurt, etc..... He takes Klaire Therabiotic Detox with 50 billion per capsule and it does not have Strep T in it.

Go to ILADS and request recommendations for llmd's in your area. Pandasnetwork.org has a pretty good listing by state of PANDAS docs. With stomach issues, I'd recommend looking for an integrative doc that will test food sensitivities and other things. MAPN is a group of integrative docs that test and treat for these types of things. My son has had the work up and currently sees a MAPN doc who is treating him for PANS.