JoyBop

Dr, Bock spoke a lot about cadida and yeast. I have also heard a lot of you mention it. For those of you who have dealt with this, what tests have been done and what has the treatment been? Thanks.

One if the most interesting and exciting talks (although way over my head) was by a scientist, Dr. Agallui. It is mind blowing what this man has been doing. He has been able to replicate PANDAS in laboratory mice. He showed us footage of these infected mice, and was able to demonstrate their repetitive and hyperactive,compulsive behaviors. He was able to discover 3different ways the T cells get into the brain and where they go. I'm in a cell phone now so I won't go into my interpretation of what he said (as in not a scientist but I think I got the basic idea) He found that strep lives in the back if mice noses (simulate tissue as our tonsils). The T cells end up invading the brain through the back door, through the olfactory part of the brain. Once they get inside they weaken the blood brain barrier and allow more T cells inside. He was able to sho us actual pictures of the damage and location of foreign cells in these mice brains. Unfortunately we can't get these images of our kids brains as we could only get this info through biopsy. All the doctors were brilliant. I have to say I knew nothing about Peggy Chapman but she gave some very straightforward and practical advice that I have ready implemented in my house. Her slide show is a great representation if what she spoke about. Have a look.

Not every presenter gave their slide show presentation, but here are the ones that are available. I believe more will be posted later. http://nepandasparents.com/resourcesandnews.html

I am still on my way home but all I can say is WOW!!! I was an outstanding conference and I learned so much from every single speaker. I will update more when I get home but I was blown away by all the new research, data and information I learned. All the docs shared what they have been seeing and their treatment recommendations. I have so much faith that these doctors and scientists will get the job done to help us all get the coverage and treatment our children deserve.

We knew it was pandas when we made the discovery that he had a strep infection 5 days prior to overnight onset of irrational fears and OCD. We did t realize the connection at the time but when we checked back in his medical record that was a clue. That discovery was made 5 MONTHS fter the fact and we went straight to the dr for a strep test and it was still positive!!

I am with your that therapy is difficult during a flare. But my thought is to call your insurance company and see if you can get a person to come to your home for CBT. When he is "well" (more functional) you work on CBT to develop new coping skills. When they are in a flare you work on crisis management. If nothing else its great to have some extra support and advise from an expert and also an outsider. Sometimes we get so wrapped up in things that we get sucked in a long with them. I have found the best success has come when we have therapists that come to our home at least periodically if not every week.

That is the best news all around!! You did win the lottery!!!! What an amazing turn if events.

That is the best news ever!!! In so happy for all of you!! Did you end up getting a specific diagnosis that requires any other kinds if treatments? This is such amazing news!! I'm especially thrilled that you son is having such a miraculous recovery. How amazing to make that money back!! Now I'm thinking an lp is the way to get coverage. Was there any indication of anything autoimmune in his blood work?

Did you give it back? Sometimes they have to go backward before they go forwards.

We are in the throws of it as well. My son did quite well for the first few days but the last two have been torture. So be on the lookout for increased pain. The worst of it comes between day 5 and 7 when the scans have to slough off. We were told he's not to life anything over 10 lbs for 2 weeks and no running around or rough housing. Glad the surgery went well and best wishes that it worked! As far as what to look for every kid is different. But our great finding today is that his toes and fingers are healing! He is no longer chewing them to the bone. Its a great sign!

Please ask. In sure you have a great doctor and they know what is going on. I just did some reading and according to what I read HE is a complication from hashimotos which is a thyroid condition. You would have to look at the range if tsh your lab used but it sounds low which would mean that he is hyper thyroid, or possibly having thyroiditis attack which would go along with hashimotos and HE. If I were you I would also have the thyroid tests Re run by his PCP when he is done with the steroids. After I've had an attack I have my bloodwork checked every 6 weeks until things stabilize. I don't mean to concern you but its worth asking about and keeping your eye on. The thyroid can wreak havoc on your life if left unchecked. I lost 3 of my teenage years being sedated and stupid because no one knew what to do with me. Hope things are going better today!

You are so lucky to have a doctor that was that compassionate and saavy. The only way we got it covered is because the sleep study proved mid to severe sleep apnea. Otherwise we would've had to prove they have 7 or more strep infections over a one year period. Of course, I wasn't going to keep him off antibiotics to prove this and cultures can give a false negative when a child is on abx. So that would have been fruitless. They won't accept the titres since they can stay elevated for up to a whole year after an infection. Broo did they remove the rest if his t and a after pandas?

You didnt come off aggressive at all. I just wanted to be extra mindful of my tone as today was a very difficult day. I cant get him to drink at all and he has been lethargic anddehydrated. He did so well for the first few days but things have gotten far more painful. He went from eating a grilled cheese sandwich and gladly taking as many popsicles and fluids as I offered down to nothing. I fear he may end up in the ER tonight for IV fluids. DH will give it a shot tonight taking him up wwhen he gets home. And you are 100% right. I think insurance WILL get worse before it gets better. But I am optimistic that it will get better in the long run. And PANDAS will eventually get good treatment coverage. Im just thankful we live in a day and age where at least doctors know what this is and how to treat it as opposed to how things would have been 30 plus years ago when your child was just labeled bad, dumb, slow, crazy, strange,ect. And Im especially thankful for the technology that allows us to be educated on these matters and find places like this for support. What a sin that they cut kids off at age 11! I think that all those in Congress and their families should get the exact same health plans that we have and see how fast things change!

I hope it works for you. He did ask here and there and stress everytime he realized the GPS wasn't on, but it didnt escalate, and it eventually stopped. Our therapist always reminds me not to enable his rituals. Thats a really hard thing to hear and do, so I can totally relate to how you feel. On one hand you feel mean and sneaky if you take it away, but if you leave it there you feel you are allowing OCD to overtake him. He may resort to counting instead of watching the clock, but that will be one less dependency if it works. I hope it goes well!

Does he still have a therapist or psychiatrist that might be able to advise the best way to proceed? My DS at times obsessed in the car about "where are we, what town are we in, what street are we in, how much longer til we get there". It had nothing to do with "are we there yet, I want out of here". I realized that the GPS in my car was giving him something to obsess over that he couldn't tune out. When I figured that out I turned off the GPS and told him the light from it was giving me a headache. Eventually he forgot about it and havent seen it since. But your sons case is far more severe. How long has the clock been out of the bathroom and how has it affected his ritual? Will he talk about what the clock does for him?

Oh my, 24 plus hours in the bathroom. That's more than any person should have to bare. Im so sorry. I would encourage you to see an endocrinologist or someone in the know about the Hashimotos. I myself developed it at age 16, which is rare as you know, and it can bring about horrible mental deficits and psychiatric changes. I also had chronic hives and angiodema and all over body swelling from it. I went undiagnosed for quite some time since no one knew to look for thyroid troubles in a teen. All the doctors thought I was severely allergic to something. IT was finally discovered when a doctor noticed I had a goiter and I complained of feeling chocked when anything even brushed up against my neck. Hashimotos itself is defined by the anti-thyroid peroxidase and anti-thyroglobulan antibodies. These test will indicate if you have an antibody that attacks your own thyroid, which is what Hashimotos really is. Then there are measures of your thyroid hormones which are the Free T3 and Free t4. Its been a while since Ive delved into all of this, but basically your own body attacks the thyroid. When initially under attack the thyroid may appear to be hyper-thyroid for brief periods of time, but then the patient will become hypo-thyroid. (That is an underactive thyroid as opposed to Graves disease where you have an over-active thyroid.) How were his T3 and T4 results? Im assuming he had very high anti-thyroid antibodies and a high SE rate which would show overall inflammation. HE is responsive to steroids, but what I would want to know is does he have Hashimotos or is HE a separate condition? If he truly has Hashimotos, he would need to be on Synthroid, a thyroid replacement to stop the bodies attack on the thyroid. Untreated Hashimotos can cause all kinds of psychiatric and cognitive problems, as I have experienced myself. I'm sure your son is in great hands and getting the best treatment possible. I just couldn't help but wonder if there is underlying thyroid condition that requires treatment, or if HE can be a separate entity. While the Gaia Thyroid supplement is a great support, its not a replacement for the thyroid hormone the body is lacking in your garden variety Hashimotos disease. Keep up the fight T. Anna. One day you will suddenly find yourself on the outside of that tunnel and we will all be be here to cheer!

SCARY!! I hate to say it, but maybe the FDA SHOULD be overseeing these types of products. Someone needs to hold these companies to standards and protect our health.

MAyzoo, I totally hear what you are saying. My whole family works in the medical field and I work directly with insurance and billing so I do know what you are talking about and it is the bane of our existence. But a lot of change has already begun and insurance companies are slowly loosing their power. We as patients can't change the formularies and we do have limitations and have to use the preferred drugs, doctors and hospitals, or pay dearly. But insurance companies are becoming more and more mandated on what they have to provide and we have only seen the beginning. Perhaps I'm an optimist here but I do believe insurance companies are more liable than most people realize to provide adequate coverage based on new state and federal laws. In our state of MA, if I appeal a denial of coverage, I can file a complaint with the state against them. If they have refused us any option of reasonable care for a clearly diagnosed illness with a proven treatment, they are on the hook. ITs no longer a question of what they want to cover, its a matter of clearly defined state and federal laws. As far as Autism coverage, we have come a long way, at least in 37 or more states. Here is an article that is at least a year old but shows what states have been mandated to provide. http://www.ncsl.org/research/health/autism-and-insurance-coverage-state-laws.aspx As for the rest of the states, well shame on them, and they won't get away with it much longer! But I think my whole point I'm trying to make is that until our medical community comes together on PANDAS/PANS (what it is, how to diagnose it, and how to treat it) we are still years away from coverage. It took 40 years for the medical community to come to terms with Autism. I think that just goes to prove that there is a stigma in this country in regards to mental health issues. I see that changing as well. (Theres that optimism again!) Thanks again Mayzoo for the articles. I hope I haven't come off as defensive. Im just on edge and have way to much time on my hands, shut-in with my recovering child for 10 days.

I just pm'ed you something about this. "The myelin basic protein level is elevated during acute exacerbations of MS. Oligoclonal bands (OCBs) are found in 83% to 95% of patients in whom definite MS is eventually diagnosed. OCBs are also seen in 25% to 50% of patients with other inflammatory diseases of the nervous system, including viral, bacterial, and fungal infections and CNS vasculitis. " The fact that his protein was borderline low, it could just be showing what you really want to see, inflammatory disease of the nervous system including viral, bacterial or fungal infection. If he protein was high and he had clinical symptoms I would tend to be more nervous. I suppose you are supposed to call your PCP for a referral to a specialist? IT seems odd they didnt include informaation on who/when to follow up. When they right "information passed on to PCP" they are passing the buck to your pediatrician. I wouldnt worry too much about MS for now, but I can understand your worry. Thats what we moms do.

I didnt see the article yet, but the FDA doesn't mandate the herbal supplements on the market. They are required to disclose all of the ingredients contained, but there are loopholes in the labeling laws as well. You really have to trust the manufacturer as you really have no idea what you are taking. There are some really good companies out there, but there is a lot of junky companies out there selling snake oil.

T.Anna Im so glad to hear the positive things that are happening. Im especially thrilled for you that your school system is so supportive and are actually thinking of your childs best interests. It gives me great hope to see! It's a beautiful thing that he is able to maintain his friendships through all of this. When he is finally free from this dreadful illness he will fit right back into his old life. You have come so far! As we always say in our house these days, "Celebrate to good days (or moments) and just get through the bad." Question...How did he get the Hashimoto Encephalitis diagnosis? I have Hashimotos myslef but Im curious how the encephalitis was found. A high SED rate would prove inflammation in the system, but not specifically the brain. The anti thyroid antibodies would confirm the Hashimotos diagnosis. I ask for my own purposes because when I am in a flair its as if I have intermittent amnesia or as if Im a stroke victim. I know what Im thinking but either I cant communicate or the words come out wrong. I cant find my car in a parking lot or say my own childrens names. I would love to know if I have encephalitis as well. Please tell me what test confirmed that. Lastly, I didnt see any Synthroid or thyroid replacement to treat the Hashimotos. What are you doing to treat the disorder? You have come so far! He will get there, little by little.

I thought I put a response in here, but its gone. Forgive me if this is a duplicate. I agree that trying PRozac again would not be a good idea. My DS had a similar but may worse reaction to Prozac that you mention. The next time around we tried a very low dose of Zoloft and it helped take the edge of but didnt really do much. He was on 12.5mg. We pushed it up to 25mg but after just one week I started to see similar reaction to what we saw on Prozac. He has remained on the half dose ever since. We also have our son on Intunive, which I would suggest you ask your doctor about if you are interested in a medication to help with the agitation. It has been VERY helpful. Feel free to pm me if you would like more info. We also had him on Clonidine .1mg at night to help with sleep problems and night time agitation. We JUST discontinued it after his tonsillectomy a few days ago. Clonidine is a similar drug to Intunive and are not usually given together, but you could ask your doc about both to see if either one would be suitable for your daughter. Do you also give Motrin? That has been by far the most helpful for us as far as agitation and rage. Nothing has helped much with the OCD. We do CBT but Im not convinced we have the right therapist. I hope that was somehow helpful.

I've read all of that and I totally agree, however, the insurance companies don't have any control of what care gets mandated. They are obligated to pay for any treatment that has been proven to be effective for a defined and medically accepted illness. They are not obligated in any way to pay for any experimental or unproven treatments. But what hurts us all the most is that PANDAS isnt even yet a legitimate diagnosis! We have a LONG way to go. I am hopeful that if Swedos study hits a homer, we should see coverage approximately a year later. I have Harvard Pilgrim and today I looked up their IVIG coverage policy. There are pages of specific diagnosis they cover but at the bottom of the three page document it states outright that under no circumstances will they pay for IVIG for PANS or PANDAS. My heart sunk! But don't be fooled into thinking that insurance companies are in control here. Sure, they will dodge the bullet if they can, but they have responsibilities that they are legally held to. ITs up to our medical community to come to terms with and agree upon PANS and PANDAS as an illness and make it an official diagnosis. Scientists must first understand what it is and what can safely treat it before we can see coverage. No one (doctors, insurance companies, patients, or family members) should ever want to rush into major surgery without really understanding the risks and knowing that the benefits will far outweigh them. Surgery should always be a last resort, but insurance companies are legally bound to providing necessary and proven treatments. I cant wait to hear Dr. Swedo speak next week at the PANDAS conference. Im hoping for a sneak peak at her initial results, but Im sure Im being overly optimistic.

Thanks Mayzoo. I was hoping to find the research that Swedo had done through the NIH. There are very few valid studies showing the effects of tonsillectomy on children experiencing PANDAS flares at the time of surgery. There are a few documented individual cases but that will hardly help our cause. I understand why the NIH would not make a blanket statement and suggest that anyone with the diagnosis should rush right into surgery, but I was hoping to find some really legitimate reason why they outright discourage it. Lucky for me, both my PANDAS kids had moderate to severe sleep apnea and that was the reason we did the surgery. If nothing else, it should help keep strep infections down (or at least for the first two years according to our ID dr.) and help with some behavioral issues thanks to a better nights sleep. Ophelia, I understand this surgery is the worst for adults. I hope you are feeling better and starting to see some positive results!

Specifically, does anyone know why the NIH does not recommend tonsillectomy? I couldnt find Swedos trial.