JoyBop

Wow! That was interesting! We actually just enrolled in a new study at the NIH. We are going in early January for two full days of testing. It does not include treatment but its intent is diagnostic and includes natural history of childhood onset of OCD. I had responded to the family study but found out that that particular study is not yet enrolling. We feel very fortunate to have this experience.

I'm not so sure that a strep test is a definitive answer. Even if there was a strep infection and it is gone now, the damage could already be done and the disorder is already set Into motion. I think its tremendously helpful if you are able to catch the infection while its hot or smoldering because you have another piece of the puzzle, but for many kids the strep infection came and went months or years ago but we are still dealing with rages and flares. It's like finding the tic that bit you. If you find it GREAT!!! But chances are, many of us don't ever see the tic or the bite. The blood tests aren't very accurate either. Does that mean there is no lhyme infection if all the clinical symptoms are there? Not necessarily. Some kids don't even make strep titres at all! Unfortunately I think we loose a lot of pediatricians attention when we bring fourth all of the literature and then Fail to produce the infection. What we need for the literature to portray is that this can become a chronic condition that can exist even after the strep infection is gone, even after years of appropriate treatment. Our ped actually brought up the possibility of pandas and looked up the medical literature. My child wasn't sick at that time (but had a strep infection 6 months prior). He read the literature and said, no..it says here that it happens with an active strep infection and goes away with standard treatment. We all know a standard single round if abx isn't going to cut it. Dritan agillou presented his research at the pandas conference. He was able to reproduce pandas in mice and then look in their brains to see exactly what cells were where and how they entered. He also discovered how long these th17 cells remained in the brain. In a mouse whose expected lifespan is 2 years, these cells remained for 58 days. That equals roughly 6 years in human life. It was also expressed by many drs that anytime the immune system is heightened or even if the child is emotionally stressed that it weakens the BBB causing all of the inflammation to get stirred up and cause another flare. Don't we all notice those ups and downs correlating to illness around them, stresses at home or I'm school? I'm not trying to be a Debbie downer, just trying to point out that sometimes you don't catch the infection in action. Those are usually the kids that have it the worst because the longer it goes untreated the more difficult it can be. In the end, we are told none of this is permanent and that they will all get better with treatment. We are all on the war path to get that treatment , no matter what it takes. Don't give up. Choose your position wisely with your doctor, or better yet, find one that you do t have to do that with. There are any outstanding pandas docs and they are worth the wait and the travel.

Sorry.....duplicate post !

Great advice mama2alex! I second all of it, and also my sympathy as I know how painful and scary this is for the whole family. My suggestion is to pay for a phone consult with Dr. T. It is a great solution since he won't go anywhere or talk to anyone anyway. I can hardly get my 8 year old out of the house, I can't imagine trying to persuade an adult sized teenager. There are several docs that's are worth their weight in gold who will work with you from afar. I think that is your best option if your ped is not on board. I believe h1n1 can lead to PANDAS, it was mentioned at the conference. Do take videos of your child as well. My son can also hide many symptoms out of the home but once he lets his guard down is a disaster. He appears to be extremely adhd and sightky anxious in school but they don't see what we see at home. I have shown videos to doctors and therapists so that they understand that my sweet adorable and charming child has a very different side that is ripping our lives apart. It has served us well. A phone consult with a good and compassionate pandas dr should be able to get you the blood tests needed to make some decisions and get a picture of what is going on. If appropriate if could also get you the antibiotics and other treatments your child may need.

I didn't get to read the while study but I'm not buying it. Who's to say those are the antibodies that are even causing the damage? Read this by Dritan Agillou. He's the scientist who has proven what cells are crossing the BBB and how they get there. If you scroll down you'll get to the part about pandas. His research is currently undergoing peer review and will hopefully be published within the next 6 months. It should change everything! A and by the way, its TH17 cells that are infiltrating the BBB. http://devcell.bio.uci.edu/faculty/dritan-agalliu/

I've been where you stand its exhausting and very upsetting. What kind of treatment have you tried? We dealt with all the exact same behaviors for over a year before we even knew what we were dealing with so you are ahead of the game. Have you been able to find the triggering infection? Have you been able to try antibiotics? Have you tried dosing her with Motrin 3 times a day? It really helps. When my Dd was between the ages of 2.5 and 3.5 I really could t take her anywhere I was a prisoner of my own life and I have three other children ( 2 of the. Have pandas) I hope this encourages you, our dd is nearly completely cured and only has a few little tiny flares here and there. She turned around completely after her tonsillectomy. It's not a miracle cure, it didn't help my son at all. But each child is unique. Hang in there, we are all in this together.

Here are a few articles I emailed to her to give to her doctor in addition to PANDAS related articles http://www.saturdayeveningpost.com/2011/09/12/in-the-magazine/health-in-the-magazine/viral-link-mental-illness.html http://www.newswithviews.com/Howenstine/james16.htm http://wwwnc.cdc.gov/eid/article/9/11/03-0143_article.htm Im still looking for the largest clinical study ever that followed over 1 million patients that had hospitalization for acute infections and ended up mentally ill at a later point in their lives.

I am hoping that all of the new studies, soon to be published, will change that forever! I have an adult friend, age 70 who had all of her teeth extracted because of an infection. They were making her falsies. 5 days after surgery he flipped out and ended up in a psych ward. This woman was a rock solid stable person all of her life. She went on antibiotics because her infection came back and she experienced relief only while she was on her 20 course of abx. Now she is a wreck again and no one will listen to her. She knows it was caused by infection, but none of her doctors are familiar with any of this, and no one will give her continued abx. She was like a second mother to me growing up and I am doing all that I can to get her help. I believe its so much harder for adults since most of the studies being performed are specific to the pediatric population.

I think there could certainly be an infectious cause. The hard part is getting a doctor to look for these infections. But unfortunately, they have to focus on getting him stable and are before they can do much there. Are the parents on board with your thinking? Many of the pandas docs do fee going adults even if they are on pediatric docs

I'm thrilled for you that you have seen such progress with abx! You have do e an amazing job from the beginning on this one. I wish you luck and commend you on your decision to find a new dr that will support your desire to keep your child on abx. We have been at this a while now and see the ups and downs. We have a saying in our house I'll share with you. While we continue to do all that we can to bring healing to our two pandas kids, we celebrate the good moments and just bare the bad ones. Yes, things can change from minute to minute and certainly day to day. There are some very lucky ones that get completely cured right away. But many of us are left here to fight in any way we can to make each day better.

Puberty can last years depending in when they start. Each kid is so different. My oldest non pandas child started puberty at age 8 and it lingered on until he was 13. He's now 14 and a complete man, 5 foot 10 in men's large clothing. Many of his friends still had baby faces and voices that sounded like they were on helium until just last year. Then they went through the changes overnight. So each kid matures differently. As a parent of 4 I can tell you each child goes through a difficult period at different times as well. With that said, my 14 yr old had two very tough years even without pandas it was very challenging. No one can tell you how or when your child will got though puberty but its sure to make you nuts wether they hav pandas or not. I also don't think anything magically changes as they go through puberty which is why they say these kids that are on preventative and need to stay on them until they are 21. The chances of getting a new onset of pandas is greatly reduced after puberty though. Even if your child at 8 is showing signs if puberty, it is bound to take several years. It would be great if your child actually gets better!

I agree with T. Anna, hang in there, you are finally in a place that will see to it that you are taken care of! Have you called the Dr. yourself and told him how awful this is making you feel? You could ask about taking it once a day for starters, or a smaller dose twice a day. Or maybe he would change the medication all together. If not, at least you would know that you are in the best of hands and that this will all be worth it in the end.

Is this Dr. N at NYU? If so, I would personally be willing to try anything he says, and then if it goes awry you still have a very valuable piece of information. I dont know him personally but it sounds like he is absolutely amazing at figuring these very difficult cases out. I myself have had to try some things that have been outside of my comfort zone like trying medications that I never thought I would give to an 8 year old child. Some have been beyond amazing and some not so much. But you will never know until you try. They are all short lived, but the information gained is permanent. You make the final decision...Best of luck!

I can appreciate how hard this a as been for your family. I just wanted to say, wow! Your child has had two IV IGs. That is very impressive! That's a feat many if us here in the US are trying relentlessly to do. You have done amazingly well with your resources and I find your story very inspirational. I also wanted to say, enjoy and celebrate every day that your child is well. Maybe the tics won't come back. If they do, we all know you will come back fighting for the next treatment or direction. But give it a chance. Maybe he will begin on a path to healing. I also thought llms suggestion on the book was a fabulous one.

Thanks jfaringa. You are very knowledgable! I may pm you with specific questions once we finally meet. My child has many diagnosis. They do accept the PANDAS diagnosis, but he also has the anxiety and OCD which already qualify him for emotionally disturbed and OHI. That is what his 504 had been under. But that was before the regression in skills. We had him tested privately last year and be score at or above grade average in just about everything and has a rather high IQ. The school will be running the full battery of tests now and in so curious to see how much he has declined or its its all focus, movement and behavioral. I'm hoping they will handle this correctly or we will keep him at home. In our state our doctor can write a a letter if a child misses 14 days or more in a school year. My child has already missed more than that, so we are close to writing that letter. I would just rather keep him in school because there are so few places he will go anymore is hate to loose that. I don't exactly trust this schools testing either so I'm prepared to get him tested privately if I need to. Thank you so much for your expertise. They have to have it done within 30 school days. I already completed and dropped off two questionnaires that looked like emotional and adhd like checklists. If there is anything in particular you think I should have in my binder please let me know! I could use a secret weapon.

Go ahead and do the tests. He hasn't prescribed anything yet. You can tell him how you feel and what your concerns are about the steroids. You have the final say in what you give your child. Its worth seeing what her recommends.

Hang in there. It took a good 8-10 days before we saw any change. Give it a few weeks. Take a deep breathe and take one day at a time. Your child will get better.

Hopeny, you are not completely alone. We always vaccinate our kids as well. I also feel like a line wolf at times as we do choose to give meds to our kid to help with horrible symptoms. I've been nervous though since dd began her vocal ticking after the flu vaccine. Everytime DS gets even slightly sick he flares like and man so I am a bit nervous. But besides that my kiddo is never sick. I will do what they recommend but I'm so afraid of a severe flare. There's only so much more I can take... But I will do anything for coverage for IVIG.

Hopeny, the vaccine didnt cause a flare in your kids? All my kids had the PCV7 state supplied vaccine. Pow wow, yes, that does make sense. The cell marker study looks at the b cells and t cells. They are the cells that make the antibodies. Next we are getting a GI work up done. The immunologist made some remarkable connections between DS's past GI complications and his current issues. He will be getting scoped to look for eosiniphils in his esophagas, and looking for the source of blood loss. He has had trouble swallowing and complains of reflux. I thought we were out of the woods with all of that stuff, but may not be after all. ITs been a long road!

What is the RNP antibodies? We didnt have that done. Still waiting for the cell marker studies. Must look up what SLE is. This is all new to me. What treaments were you able to get to treat these things? I have heard the pos ANA is a non specific finding but shows that there are auto- antibodies present, but in and of themselves dont mean much without clinical symptoms of Lupus, ect. Im particularly worried that revaccinating him will make him flare. I know thats what the next step is.

Jferinga, thanks for all of that. You bring up some great points. We will be qualifying him with "OHI" Other health impairments. We tried a 504 first but it is not touching him and he is no longer able to access the program. The teacher says he "wanders around the classroom when he is supposed to be working" "can complete class work with the one on one help of an adult" and "does not connect to daily routines in the class room". Basically, he is unable to function whether it be due to ADHD like symptoms, OCD, anxiety, or cognitive dysfunction, that is a very blurry line right now. He keeps it together emotionally in class but his ability to focus and accomplish anything independently is gone. His hand writing is now worse than it was in kindergarten (he is in 3rd grade now) and his math skills have vanished. He can hardly add or subtract and in a matter of only weeks, this ridiculous common core program has gone from + - to multiplication to division to square root in a matter of weeks and his head is SPINNING!! He is "getting in trouble" all throughout the school during those less structures environments, and the school has done nothing to support him or his poor classroom teacher who is left with 10 other student to tend to and no aide. The school pyschologist tried to get away with just doing the executive functioning part of the testing and no educational testing but I strongly disagreed. We'll see how far the testing even gets with his short attention span. Im sure someone will be scribing for him if they dont want hint to completely fail the test. I have hired our psychiatrist to help with the behavioral part of the plan as far as his ability to actually function in the classroom aside from his brain not functioning. What a mess! We are hoping that they will make this all right, or we will have to request home tutoring. Thank goodness for the state law that any one who has to miss 14 days in a school year for medical reasons can have a doctor send a certified letter requesting home tutor.

Hope everyone is having a great Thanksgiving weekend. I've missed this place while it was down! The blood work from our immunology appointment are slowly trickling in. There were a few surprises. The most shocking was the lack of strep pnuemo titres. Out of the 23 tested, he was deficient on 21 of them. He is 8yo and was up to date on all his PCV7 vaccines. Does anyone have experience with this? I know they are going to want to re-vaccinate him to recheck titres. Will this be a nightmare for PANDAS kiddo? The other surprises were that he is slightly anemic and Im worried that the around the clock use of motrin since May is causing a bleed. ANA came back positive at 1:40 of the speckled variety. Anyone have any comments based on experience?

Is it possible the medications are tough on the stomach? Are you making sure our child takes the harsher meds with food? I know Motrin can be very tough on the stomach. What does your dr say?

Mayakoba, awesome resource!!!! I just printed it and emailed it to our advocate!

LLM your knowledge blows me away!!! Thank you. I am just beginning to read about these things. I will follow your leads and let you know if I have any more questions but I think that link about the nuerotrqnsmitters will hit the spot! I have hired our local psychiatrist to be my advocate at our IEP meeting. She is the one who diagnosed DS and knows how to treat the whole child from medical to emotional to behavioral. I am so lucky to have such a doctor!