JoyBop

While its great that you feel you've made progress, I think its ridiculous that he won't order tests without another doctors request. Ruling out a strep infection is a primary care doctors job and he should not need a note from a psychiatrist or some other provider. I would be looking elsewhere.

I agree. Time to move on! You are not going to be able to convince this doctor anything and he obviously doesn't have an open mind. I also done think that doc will take the time to write you a letter. Many docs charge these days for letters written and in sure he's not going to want to put anything in writing that could be held against him later. When you think about it, if you are able to go elsewhere and prove your child had a strep infection , and you have a letter stating you had asked for testing and he denied, he could actually get in trouble. I wouldn't waste anymore time. I know a bit about behind the scenes medicine and can tell you that some insurance cos won't pay for the strep test without documentation if certain criteria. Maybe he doesn't want to not get paid? You could offer to pay out of pocket but I doubt that would fly either. I'm MA medicade won't pay for a rapid PERIOD!! They have to do the culture and make the kid wait several days before treating. I'm sure obamacare will follow that policy.

Please add Joybop DS and DD. what a great idea!

http://www.nepandasparents.com/resourcesandnews.html

I wouldn't wait to find a special doctor. If its as bad as you say I would be concerned about putting strain on the heart. Have you taken him to his pedi? How is his heart rate and blood pressure? Is he on any other meds? Prednisone can make these symptoms worse. Did it get worse after adding? Has he had a full blood workup? I would take him to a trusted doctor ASAP and not be fishing around for a new one as it could take a while to get in. How is he sleeping?

Very interesting!! I think there are so many elements at play. I have always avoided thinking about the cell phone aspect. That's such a scary thought! All of this makes me seriously want to help heal their gut in any way possible. Due to the fact that my two kids used to have life threatening allergies and were always on a restrictive diet we have avoided going back bc for DS it brings back such stressful and scary memories which brings in even more OCD and anxiety. We tried an optional trail off gluten and dairy and I didn't see any change. We did it for 4 months, but it did make him miserable. However I became aware after the fact that he was eating everything available at school. Once again, thanks school system for following doctors orders and ignoring our requests!! DS has a scope in feb. After we see the biopsies we will make the decision on how to proceed but I'm guessing no more dairy, beef or gluten as those were his triggers in the past.

That's so disappointing. I hope they can accommodate her soon.

Sending prayers as well. I can also relate. My son fell off the deep end after his tonsillectomy. How long ago did he have it done? It took 5 weeks for things to settle back down, and that was on abx. I feel your pain. I hope it passes quickly!

If I asked who has had strep on this forum I'm not sure that would have been thinking outside the box....I am focusing my question in the abx exposure because that has been identified as a risk factor doe auto immune related GI illness. I'm making the gut/brain connection with this one.. He did not have any infections early in life, but I did and that's why I was treated. I had the mastitis after he was born. I had the uterine infection after he was born and I did not have an active strep infection when I delivered. I tested positive for colonization of group b strep as a large percentage of the population has. Still, IV abx are give. During delivery to prevent the newborn from contracting it. We already know of the connection with the onset of PANDAS and infection. We all understand the inflammation feeds this disorder. This question is about other things that may have weakened the immune system or altered the gut to predispose a child of certain genetics to develop PANDAS. The other thing that led me to ask this question (aside from the coincidence that many pandas kids have or had allergies or problems with their gut) is that they have seen several other children exactly like mine. The matching history, family history of illness, and exposure to abx are almost identical. Could it be coincidence? Time will tell. I thought it would be interesting to see if early exposure to abx could be a clue in what triggers PANDAS.

They are fine for a few days. It's longer periods of time (weeks) and higher temps that are a problem.

Here's an interesting question. Please let me know if your child was exposed to antibiotics in his/her first year of life. Its a long story how I have arrived at this question but I'll try to summarize briefly. We have been going through an immunologic work up with a pandas doc. My kid (as many others around here) had horrible gut problems and food allergies earlier in life. As it turns out, my kid has 2 out of 3 risk factors for another rare immune disorder. The most fascinating risk factor is that my child was exposed to abx early in life and at birth bc I was strep b positive. Then at 3 days old, I had a double mastitis And was nursing with Keflex for 10 days. Despite being on abx at 7 days post pard I had a horrendous uterine infection and took Flagyl. That made him and me very sick! Anyway. It got me wondering, how many of our pandas kids were exposed to abx early in life? How many mothers were strep b positive during pregnancy/delivery?

Sounds right on the money to me! ASO rises a week or so after infection (sometimes even later) but then falls. The dnase rises 6-8 weeks later. Both may stay elevated for up to a whole year. Our ID doc recommends testing every 4 months.

3b I would live a book like you mention about OCD. I never thought about it, but DS OCD is definitely a moving target! Something occurs for a week or more and then it disappears and we are on to the next. I'm fascinated by the use of a scan to determine OCD! Sertraline is the generic Zoloft. We just took him off of it to prepare him for the study at the NIH. We now realize that just 12.5 mg which is all he could handle without flying off the deep end, really did take the edge of his symptoms. Unfortunately the side effects were at least as bad as the original symptoms so I'm not sure I can resume the Sertraline. abilify is next on the list. If that fails we might have to go it alone.

You should look into the IGG issue. Do a little research because depending in how low they are IVIG might be the treatment!! Also long term abx are frequently given to their with immune problems. Can you ask your pandas provider to direct you to someone who will treat?

I had asked the clinical coordinator and she said it was but I'm not sure she was the right person to ask. Let me know when you find out.

Agreed. I get how some docs might not be comfortable with experimental treatments or even dealing themselves with disorders that are outside their own comfort zone. What I don't understand is how they can take parents right away and keep children locked I psych units against their families will. They treat us all like criminals. The best we can all do is stay away from those places as much as possible and keep strong connections with the docs that are on our side. Someone made a poignant comment on another thread reminding us to Play the game and keep a reasonable and responsible profile so we don't put ourselves in a compromising situation. There were a few mentions at the conference if a few inpatient hospitals that DO treat PANDAS patients appropriately. I suppose if my kid was escalating out if control I would contact one of those facilities sooner rather than later and stay out of unknown hospitals. We live in the Boston area and get amazing treatment at mass general. Thank goodness we never went to BCH. I never did get a good feeling there. When my DS had mysterious and life threatening GI issues they had huge egos and dismissed us bc we did not fit into a nice near package of black or white.

I think that once the PANS/pandas cycle has begun, just about any heightening if the immune system can cause a flare, long after the strep infection (or other offending infection) has resolved. We saw our ID dr yesterday and asked why is he still flaring, even with no apparent infection? His answer was that its not uncommon in these kids. We just had a full immunologic workup done and there were no signs of infection whatsoever. We are fortunate that we did catch that strep infection at onset or we might still be scratching our heads. We are also going to that study at the NIH. The tests you mentioned are to learn more about the child with childhood onset OCD and developmental changes, and to look at a broad range of children that suffer with these problems. The goal is to diagnose these kids, learn from them, and Give their recommendations on treatment. They also do the Cunningham panel which we are most excited to see the results of. The other tests I was told that will be performed that you did not mention is nueropsych testing and Panness testing which looks for soft movement disorder. (Subtle piano finger, chorea form movements, ect). We were told they are making a connection with pandas patients and poor quality rem sleep despite achieving the correct amounts. While all of this info will be interesting and hopefully they will learn a lot from our children, they may not result in more conclusive triggers for the disorder or answer our specific questions. Its a natural history study. Its a win win as far as I'm concerned. We get to be a part of the solution, get expert advice, and access thousands of dollars worth of testing. We are looking forward to our visit at the NIH and hope we are able to learn more ourselves.

Do you have an immunologist directing treatment for IGG disorder? Your child might get coverage for IVIG with certain diagnosis. It sounds like until you address the immune system you may not be able to stop the illness causing continual flares. Is your child on abx continually?

3B, thanks for the insight. Yes, I do believe obsessions are at play here. Yes, we have just done extensive bloodwork and all seems well. No elevated white blood count, ASO now back to normal range. Our infectious disease doc says he sees many PANDAS kids that have these flares without any known infections, but who knows? He was slightly anemic and are going for a GI workup tomorrow as there is a chance he has bleeding uclers again. (Had a lot of problems in past) Weve stopped Motrin for this reason. I am going to address this with his therapist and psychiatrist. I am afraid to make him stick to the first one because I feel like I would be supporting the lie, if the first story werent the truth. In fact, I know none of his first stories were the truth. I think I would only be adding to the problem if I were to insist upon what he told me the first time. My approach for now, until I get some expert help, is to reassure him that he will never get in trouble for telling me the truth. Im trying not to put any added pressure on him so that he will trust that he can talk with me, bc he tends not to want to say anything when asked a question. I think if he is really stealing things, its also a compulsion. He is so afraid he "might" do it that he feels he has to. Then we get into this ritual of telling what did/didnt happen. This is really a tough one!!! He is also ramped up on his fears of gum. We were in Boston Friday and he was hopping and tiptoing all around the side walks. At one point he got stuck on a square in the cement and couldnt move. He started screaming. I down played and and rushed him along as it was 17 degrees and the wind was blowing. Again, Im not sure how to handle these things. They have always been there, but never so debilitating on a "good" day. Maybe the Zoloft wasnt so bad after all?

I dont know what else you have tried, but have you tried switching probiotics since you find a connection there? Have you tried Miralax? Extra fiber or Metamucil type supplements? Stool softeners such as colace or the like?

Early, mild cdiff can start with cramping and a little diarrhea but if left untreated it will eventually get explosive and watery. The problem with the stool testing is that there are many false negatives. Sometimes you can get up to three false negatives before getting the positive. So you many have to have him tested several times if it persists. I also wanted to mention that sometimes when kids hold it in, they can create constipation which can cause a clog in the system. Then the sludge and other particle that are left shoot around the impacted stool giving the appearance of diarrhea when in fact its a result if constipation...just a thought. Good luck at the meeting!! Well be thinking of you. So glad Beth is going to join you.

We used to do that with Dd when her sensory symptoms were bad. They only come back now when she's in a flare which are very short bursts of time. However, we've noticed that when she does, she puts in snug winter hats and right fitting clothing. This misgiving her that tight squeeze and pressure she is seeking. We also use a weighted blanket. There are times that's what's they need. I can give you ana amazing source for these blankets. It's like getting a big comfy squeeze all night long.

That is an interesting idea. Only in afraid that will put even more pressure and fear into him. But you may have a gods point about writing down all the different stories and we can review them after. He has a very difficult time answering any questions even the first time so if i put all that pressure on the first story he may never tell me anything again. This is a tough one.

We have a strange and complex issue going on with DS. He has this fear of telling a lie to the point of either not answering any question directly, or even telling more lies to try to satisfy this fear. I suspect he's been stealing things from others and when people question him he lies. Then he tells the truth. Then he lies again and swears he knew nothing about it, he was just afraid he had done it. And this goes back and forth until he has no idea what the truth ever was or what happened. Its testing him apart but I feel like I can't just totally let it go as I don't want him to be stealing or even be putting himself in this awful scenario even if he didn't. Two specific things happened this last week. The first happened at school where someone and a rice Crispy treat that went missing. DS told me this story and his he was set up. So done had planted the wrapper in his desk and his friend found it. He had a funny look on his face, the kind that gives you the inkling someone is not telling the truth. Then he admitted he did it, then he did t then he did then he didn't. Each time this went on it became more stressful and painful. The other episode was worse as it involved a siblings missing wallet and missing money when the wallet turned up in a bizarre place. Has anyone dealt with this? Any advice on how to help? I have been telling him he's not in trouble if he tells the truth but this only adds to the pressure. All of this as well as other awful OCD and anxieties have been running rampant since we discontinued low dose of Zoloft. That made him agitated and wacky. Now he is sweet and much more down to earth but suffering terribly. I feel like I can't win!

I don't think that it would be possible to hold it in if it were really cdiff. Cdiff diarrhea is explosive and quite severe. Many people end up in the hospital with it. I'm not suggesting that he doesn't have something going on but my guess is that its not cdiff if he's only going once a week. I'm sorry he's having such difficulty with this. It sounds like a horrible thing for him to have to face. I hope the doc is able to help heal his gut.