qannie47

I was chronic sinusitis sufferer until I used the netti pod. I think the key difference is that the pod contains a lot of water and really does a great job of flushing out the sinus's. The other ones, sprays, and bottles were too expensive and I was inclined to use them sparingly. I also started off 3 times a day for first 2 weeks. That's how much rinsing it took to do the job...After, it was twice then once a day as a regime during allergy season.

You have nothing to lose and everything to gain by checking into the immune component. If I had listened to others with regards to both my children, age 8, they are twins, both my boys would be off the deep end by now. BTW, both are doing great for different reasons.... Follow your gut. For starters, you are in the right place. I think Dr. L is a GREAT start.....Best of luck

When my son had his 3rd episode, it took a very long time for him to move out of all the symptoms. I have found that each episode is unique onto itself. It took awhile for me to find threads of predictability. Have you considered IVIG? If you cant move him out of those tics perhaps you should start thinking about that if it is an option. In the words of Dr. Swedo, "All kids recover from Pandas".

I definitely think that the abx is aggravating your dd's stomach pains. Being sensitive to gluten is another piece of the puzzle. Do you have her on a probiotic? My non-pandas child is gluten sensitive, and has suffered stomach pains for years. When I give him a probiotic, it helps immensely. Being on prophylactic abx requires probiotics. If she is already on one, perhaps you might consider switching to another. It also makes sense that a Pandas episode would exacerbate stomach issues. The anxiety that these children go through would be enough to give anybody a stomachache. Have you thought about a milk intolerance or sensitivity. My son has that as well, and gas can build up and cause pain in the abdominal area as well. I use gasX strips. If that helps her, then you have part of your answer.

A glutamate blocker...recently a reacurring theme in this forum...interesting...sorry, I don't have any formal use with this product. It seems to be used for alzheimers....so are there safe dosages for children...clinical trials?

I don't know much of your history, I apologize...How long has the limited eating been going on? Will they eat any one thing?

what supplements is she on

ibcdwc: I don't know that I agree with being incorrectly diagnosed. As the research evolves, we can see that there is a lot of overlap between all of the disorders that fit within the spectrum. Perhaps, as more research is done, the labels will change...leading to a clearer picture where many of the psyche disorders overlap, unique onto themselves, but have the same common denominator of immune/gut origin. Over time, as I have researched Pandas,and related disorders.... I keep coming back to immune, gut, methylation.....I think this is the elephant in the room that will eventually change medicine, and change lives forever....

ditto

http://abcnews.go.com/Health/anxiety-head-gut/story?id=20229136 Yes, we will all smile and say..."well isn't that interesting".

http://autoimmunethyroid.wordpress.com/2008/10/29/gaba-and-diy-for-bipolar-disorder/

After reading ingredients that are listed for True Calm, I notice the parallel with many of the supplements that many here are already using in this forum. Niacin, Magnesium, B6 more commonly. These are all known to support the central nervous system. I know that I have also seen valerian root used as well. What I have not heard about is the use of GABA supplements. At quick glance, it seems that not a lot of research about the safety of GABA supplements. I had a poor experience with Valerian root myself, years ago, so I hesitate to go near it. I am curious if anybody has used GABA supplements by themselves?

very interesting.

I wonder if anxiety is the reason for all this sweating. I wonder because besides dealing with Pandas, both my boys are hot. Always hot. Hot in the way that it can be below 0 and both my kids walk around with no shirts, shorts, and no blankets all year round. We keep it 67 degrees all year round. They hate the heat. At night, when I check on them, there is a film of sweat on both there bodies. One is Pandas, One is Sensory. Both are in a state of heightened anxiety for separate reasons. It is the only common denominator that I can find.

Personally, I think it was the HOPE that my ds was 100% cured, and that he/we would never have to go thru that again that did the most damage to my psyche. It took 4 flares, about 1 1/2 years of it to bring me to the point of resignation. When I got to that point, it was actually a relief. Instead of wondering "if" he was going to flare, I moved to a place of wondering "how bad/how long" it would be. Over time, I at least gained confidence that he would recover from each episode. I remember the state of mind that you are in. Truly. I think that is the worst part, and not healthy. Sitting on pins and needles, reading the internet until all hours of the night, going into a sheer panic everytime my ds expressed anything close to a Pandas symptom....it can drive you crazy. Your child will episode again. All your worry will not change that. The fact that you are on this forum, and treating him will. Stop fighting the inevitable, and you will find relief when you embrace the truth. Episodes will happen again, and you will indeed get through it..... p.s Not a thing wrong with you

Rachel, good for you. I have tested the waters with a gluten free diet, and I just did not have the fortitude to pull it off. So I envy anybody whom is willing to put forth the effort. One suggestion, quite a few people have raved about spaghetti squash. They say it is quite wonderful. You can use it with pasta sauce and I bet a cheese sauce (for mac/cheese), would pare well with it. One thought, if you don't eat out much, I wonder if MSG is really the culprit. p.s Rachael Ray went on the South Beach diet awhile ago, and came up with a lot of great substitutes. I would google that.

my ds has always been treated with amox/clave, and unfortunately his teeth are mottled. I am hoping that down the road this can be fixed with whitening or some other treatment. I guess it is a small price to pay if the pay off is recovery.

I get why you want a label. I suspect, the right label will allow you to treat her accurately and the right label will give you some peace of mind and something to wrap your brain around. I get all that. I also think it is important to be able to put a name to what your dealing with. You are also wise to consider that your daughter's issues might be multi-faceted. Follow your gut. That has what has always worked best for me. I do not know anything about dyspraxia, sorry. It sounds though that you are a wise mom and in tune with your child. That alone will carry you far. Keep reading through the threads here, there is tons of info to be found.

I did the clock test, he did fine. However, he was not in a flare either. I am going to try and remember when the next flare comes. One thing that I do notice that physically, when it comes to doing right brain things my son struggles a bit. Gets mixed up. Ex: In karate, when he has to execute a move on his left side, even a simple kick, I can see him having to stop and really focus to get his body oriented. He gets all mixed up. I have seen this before with other things and I have always been a bit surprised because for athletics, it all comes very easy to him. So I wonder if there is a subtle right brain issue going on even when not in a flare.

If you have been assigned a case manager I think that is a positive thing as well. Now you will have one person with whom to deal with. You will form a relationship with him/her and will be able to relate to them about your situation on a more personal level, as opposed to being just a bunch of words on a computer screen. We had a case manager, but it was through a peer review company that was asked to evaluate my son and help determine what was medically necessary. I would not ignore it. It would not help anyway, if they decided to assign you a case manager, you now have one.

Mental Illness is a symptom, not a disorder in my humble opinion. That is how psyche symptoms should be addressed.

First, nothing will change until you are sure the strep is truly cleared. My son's first exacerbation with Pandas took 3 rounds of abx to clear step. You need to wait 2 days after abx, test, and if he is still positive, more abx. That being said, even if he shows negative, you have to remember that this is a antibody/brain inflammation issue. It will take time for the brain to calm down, and the immune system to realize that there is no more strep in his body. That can take time. Most likely, even if you clear strep with first round of abx. you will need to do more until you see cessation of symptoms. The abx not only kills infection, but it also serves as an anitinmflamatory, and also tells the immune system to stop. Which is what needs to happen. My guess is that it will take at least 30 days before you see improvement on abx. Best regards, Q

Hrosenkrantz: No, he did not come to my house. When the first peer review came back as non-supportive/no coverage, I wrote a long letter describing my son's symptoms and recovery with IVIG, abx, steroids...I took exception to the fact that somebody so far removed could decide how to treat my son. Somehow, miraculously, with my clinical appeal, laced with a little "shame on you", they re-opened the case a gave me full boat for coverage, past and future, along with a written vindication for what we have been dealing with. I would have at least accepted his initial decision HAD he come to my house. ibcdwbc: my son's ANA and dnase was only slightly elevated, and within normal range...but I wondered if the fact that it was elevated at all spoke to something.

What a lovely testament to your son....tears in my eyes. You did a good job mom.

My son just received an AE dx from a peer review neurologist that our insurance company sent out to determine coverage. He said it was based on my clinical observations as a parent and the 2 O Bands they found in his spinal fluid and not blood serum. I don't think this is the proper dx. I think it was the only one he could give because Pandas is not officially on the books yet...In his letter, he wrote that my son had some very concerning symptoms. I as well though feel that the two dx's are closely linked. p.s. We received reimbursement for past IVIG and approval for monthly IVIG if we wanted them.