tantrums

That is wonderful!! I have to say, both our family doctor and immunologist (who he was just seeing for regular allergies/croup) have been WONDERFUL, researching themselves and doing their best to help while admitting their own limitations. I feel confident they will use this knowledge to help others in the future. I've had parents say to me "why on earth would you have such faith in a doctor that YOU had to tell what was wrong with your son??!!". I defend both of these doctors to the hilt! They listened to me, did their own research and concurred. I see nothing wrong with that! I have all the respect in the world for it in fact. And they are both wonderful people, parents and doctors who I know will go on to help other children with pandas now~!

Who is that? Is it Bristol Myers Squibb hospital? I'm so glad you got some help!! Do you think he will be good for follow up?

My son is too young for an FB account, but if he had one, I'm sure he'd do the same thing... We have issues with him, and his friends, "pantsing" each other, saying things like "up your butt" and the like. I am sure a lot of it is typical 7 year old boy stuff, but the frequency and intensity of it I believe for my DS is related to pandas. Mainly because there are CONSTANT reminders that it is not allowed and constant ending of playdates due to it. Only for it to continue the next day as if nothing was every said about it. In our case, the other kids also have figured it is fun to egg on DS I hear a lot of whispering to him followed by an offense, which is very frustrating. So no whispering is yet another rule here. They also constantly start to play "truth or dare" which usually ends with me coming screeching from around a corner yelling NO NO NO!!!! I can only think that will NEVER end well in this house Personally, if you can bring yourself to do it, I'd just cancel the FB account to save yourself the aggravation. If it's pandas related, it's not likely to stop.

I didn't know what casien was. I just looked it up. quite honestly - NO WAY NO HOW!!! We can't live like that!!! If I were dealing with autism spectrum or very severe pandas, absolutely I'd try anything. But no cheese or yogurt??? Not in this house!

Who is that doctor at UMDNJ? Is it Bristol Myers Squibb or just UMDNJ? I have an appt with ped Rheumatology in October. Also Dr Friedenfeld. Is that a neuro? I didn't hear great things about Elia so I made an appt with rheumatology directly at CHOP. When I called the referral line at CHOP, they tried to refer me to Elia bc they said she is the one who treats PANDAS. I said I wanted the physical symptoms treated NOW! I had the same problem with finding a psychologist as well I cannot tell you how many I called and emailed! Started with who I heard was good and worked my way down just contacting ANYONE!!! I have an appt monday with a LCSW.

Thank you all. We are definitely jumping in with both feet starting next week. I already cleared a lot out of the pantry and freezer today and planned the meals for this week to use up all of the yummy gluten - LOL! I've started gathering recipes already and have a shopping list here that I am working on so I have a lot of stuff to work with and we don't feel deprived. DS seems to be really gung ho on this! I have explained we are going to be eating a healthy diet, which he has been on ME a lot about. I have included him in looking at lists of what to eat and not to eat and having him help me with the shopping list. I'm preparing him in advance with a heads up so to speak on "remember we wont' be able to have that after this week" and he seems to be doing okay with it. Now question... Should I just plan on packing his lunches? For now, he is in a day care/camp setting. I work 9-5 so there is no option. They are very good - he went there from age 1 through Kindergarten and really do love him. But even if they mean well, is it possible they'd feed him the right stuff? I can ask for the menu in advance I suppose. Same for when he goes to second grade. I will have access online to the menu and can send in lunches on the days that seem questionable. I have to say though... this kid who just got a 504 is ON THE BALL! I said no more breadcrumbs (found a box of oven fry and that is SOOOO on my menu this week!). He said when they do breaded chicken at school then, he can just take the skin off and eat it! He is one smart little cookie! I think he will adjust fine to this

Thank you. Website is marked for reading later. I am torn between hiding from and dealing with the current freak out (JUST when I was thinking the abx seemed to be working...). But guess I best deal and will read later I am getting sortof excited. I just question how well I will manage to stick with it! But years ago, when my GERD was at its' worst, I mean I could only eat "white" foods, I adjusted. So, I'm sure I can adjust again if this feels good. And if I see a difference in DS, well, that will make me stick with anything!!

OOOH awesome! DS has been on a chex mix kick for weeks and weeks. I think that would be the hardest to give up! If the packaged chex mix isn't GF, I can probably come up with our own recipe that is. I KNOW I'll be needing sweets - LOL! But I'm also not one to bake. I'm a wegmanns girl all the way I'll go get a GF cookbook this weekend though. DH will cook it for us

So I need some tips on getting a couple of these into him... He is great with the fish oil (calls it his lemon drop) and the Inositol (says that tastes good). The tryptophan/seratonin drops he says taste like sanitizer, but will take them without a problem. But the OPC Synergy. What on earth do you put that in to mask it? Having a hard time with this one. I have to agree with him, it looks and smells like dirt, so I can only imagine what it tastes like. And I just tried making the "smoothie" with the Whey Pro Complete. I thought it tasted okay. Not exactly great, but palatable. But even that was only after adding chocolate ice cream, which I am guessing I shouldn't be doing. I originally put in just milk and frozen strawberries. Any other suggestions? Can I just mix this into a regular drink?

Thank you! I will definitely look up that doctor and his book. I was looking at everything DH brought in from food shopping. He brought beer and I told him no more after this weekend. He is NOT likely to follow it to the T - LOL! I did realize though that the only way to know if it works is to do it full on so that is what we WILL do. I totally need the weight loss effect! I'm in a catch 22. Gained a TON with 2 back surgeries. And since the first failed, I was unable to do much of anything for two years (even walk one flight of steps). This recent surgery helped a lot, but it's hard to get moving with 50 extra pounds I also have IBS, ezcema, chronic headaches and some other stuff including a weird come and go high blood pressure. Looking at the description of "leaky gut" yeah that is me!! So in a way, this is a VERY good thing for my family in general. Me getting healthier also will benefit DS as I'll have more energy to keep up with him and to deal with him. He won't worry obsessively about me being unhealthy and hopefully it DOES show a benefit to him as well - although as I said, he actually already IS naturally a healthy eater. But I am admittedly the queen of processed and he has to eat a lot of that by default.

I've been thinking about this for a while - for MYSELF actually. When i brought it up yesterday at the nutritional consult for DS and the doctor said absolutely do it now, it really struck a cord. I was just reading on leaky gut and I fit the bill. I am quite frankly, a pretty unhealthy person myself. I never thought of nutrition much for DS because being the little rebel he is LOL the child gravitates towards all things healthy foodwise. But I think this would be a good thing for all of us. But I've been poking around online today and I am SOOOO overwhelmed! Is there any benefit at all to doing it gradually or does it have to be a full commitment from the start to show any benefit. I'm just concerned it will be such a dramatic change, none of us will be able to hack it. Does anyone know of one very comprehensive website that I can go off of?DH is actually food shopping now, so it won't be started this week, but I really would like to get going next week. Also, I'm reading a lot about PREbiotics. Do we need to be taking those too now?

I know you are supposed to avoid the panda heads, but I can't stop myself from smashing them

I still have to research the gluten thing. I don't even know why he suggested it, although he is GF and I believe just thinks that is healthier for all No specific reason for my son. I have digestive problems myself though and have been considering it despite being negative for celiac sprue. I am a social worker for people with Developmental Disability and know many parents use it and it works. I just don't know why... Does that make sense? The tryptophan and seratonin is to help level out his moods and insomnia. Well, I'll tell ya, it sure didn't work tonight!! But the doctor felt it will take time. He basically said everything is essentially backwards for my son, which is why melatonin won't work, benadryl, etc... He feels it will take quite a while to get this right. I told him, the other doctors are telling me my DS was diagnosed quickly enough there is still hope he can completely get RID OF pandas and I am hoping that happens before his projected 6-9 months of playing with supplements. My other point though really... I'm trying so many different approaches here at this point, ABX, supplements, diet changes, starting a therapist for possible CBT monday, how am I going to know WHAT works? Stephanie - I may PM you soon if that's okay. I have some ACM questions for you. I'm off to bed now though so I may do so tomorrow.

So nearly $300 later... we are back. I hadn't realized the nutritional stuff isn't covered at all by insurance I knew the supplements wouldn't be, but not the testing and consult. UGH! We are doing an Omega 3 fish oil, a drop that is seratonin and tryptophan, a protein shake (he is protein deficient) and two other things as well. What I find most interesting actually (even DH who is not one to believe in this stuff was amazed), was a heart rate test. They had him lay down on a heart monitor for several minutes and then stand up with it on. It showed no change. So, as if his body didn't realize he was standing rather than laying down. That makes total sense to me, although I can't wrap my brain around the logistics of it. But he has no concept of where his body is anymore. And basically, also shows the fact that things are just backwards in my sons brain and body. Interestingly enough, this was also one doctor who did NOT totally brush off the Chiari in my family. He said there is a lot here that would be related to that rather than pandas, which I also suspect (insomnia, night sweats, clumbsiness). I've dealt with that one myself for a long long time and it has actually kindof helped me to navigate with this. But since for DS, pandas takes precendence, I have hardly bothered to argue my concern over ACM with him lately. Oh - he also pushed gluten free. DH and I have talked about it a few times lately. I know it would be incredibly good for me with my health problems. Since it would possibly help DS too, I really have to look into getting off my rear and doing it.

Hope you can get them soon!! I just went last week. I requested the lab send them directly to me as well as Dr. T. I have three other doctors that want them as well and really, it was just easier to have them sent to me and I will send to the other doctors. I also will need to bring them to CHOP and Bristol Myers Squibb for the upcoming appointments. Next time, see if your lab will send directly to you as well. May still need the doctor to interpret some and to tell you what it means to him as far as treatment, but at least you can get an idea right away.

I'm so sorry your aunt is a putz. But happy your mom is so on your side! My mom was a total doubter at first I was so upset. But finally, once the doctor dx'd him, she was on board. She even paid for Dr. T because I was just coming off of disability and in bad shape here. My father kept saying "but we just don't see any of this. He is soooo good when he is with us." Yes, but he was with them last in January, when I had my surgery and he was on the first round of ABX and doing GREAT!. We went out to breakfast for fathers day. My dipwad older brother was continually talking about his dog dying and other things to set my son off. Then my son was doing his head rubbing tic all over my dad and actually scratching and punching my dad!!! As much as I hated to see that - I had to say "hmmmm Dad - see it NOW?" He had such a pained look on his face though. He worships his firstborn grandson. But I was glad he saw it!

While at the birthday party of one of DS' friends a couple of weeks ago, DS had a minor meltdown, which was noticed by friends father. He is a chiropractor who runs a "natural healing" center. We talked a bit once I got DS calmed down and now we are going to his office tomorrow. He was very receptive to pandas and I didn't get a typical "chiropractor vibe" from him. He acknowledged the abx are necessary, but says he has some ideas of other supplements to assist - mainly an omega 3 that he showed me. And also some dietary changes for adhd issues we are having. I'm sure others have gone this route. I've seen discussions on omegas so know that is a good thing to try. But any others to try? Others to avoid? What about chiropractic? Has anyone tried that? I have other fears of that though as we worry he may also have Chiari so I don't think his neck should be manipulated anyway.

I NEVER drank. Just didn't like the taste of much. I would drink mudslide like once or twice a year. In the past month, I discovered wine is quite manageable My neighbors are enjoying bringing me several bottles of it each weekend to "sample". We let the kids go wild and just have a ball. Meanwhile, I also went myself to the doctor today and got myself a script for Ativan. Yep - it DEFINITELY takes a toll on the whole family!

I can't say I've researched this much, but I do want to add some food for thought. My DS had sleep apnea and eventually progressed to "glue ear". No, we apparently don't get ANY run of the mill illnesses here But he had to have T&A along with ear tubes at 3 and a half to remedy this. This was 2 years pre-pandas for us. So it didn't seem to help much for him I also question this theory bc despite not having tonsils, wouldn't the strep just be able to sit "in the throat" so to speak without tonsils anyway? DS has had positive throat cultures since having his tonsils out. He just didn't have symptoms of a sore throat to go on. I actually fear removing the tonsils makes it easier to mask.

Hmmm. So your son wants a pony, and YOU want a dog which is the size of a pony. LOL!! Didn't think of it that way. Maybe I can convince him the Dane IS a pony? Okay, I have to say... Reading the Explosive Child now and really just NOT impressed. I can't seem to get past the use of "what's up" and it's making me nuts!!! The basic concepts seem very psych 101 to me, but maybe because of my job as well. It's pretty logical stuff, so not knocking it. It's a lot of what I kindof do now, but admittedly, not consistently which I know I have to work on myself. Not to mention, I find myself screaming at the author "the kid probably has PANDAS. Try medical treatment!!!" at at least half of his case studies. And unfortunately, the pony repetition is increasing

I should add here though - the pony thing is way different! The way he is saying it - I can tell he isn't REALLY asking me for a pony. It's just a repetition. Almost like an echolalia.

Oh My Goodness!! And once again, I think I hadn't thought about something else he does that is totally related. Although, really, I think any 7 year old could do this as well - just with less intensity. Mom - when can I get a dog? When I'm 7? When I'm 8? When I am in second grade? Why can't you EVER let me get a dog???? Happens several times a week and escalates to meltdown just about every time. In that case though, I also think it's a sense of not understanding time. Our dog is 13 (I posted months ago about him hitting the dog too) and lately cannot handle other dogs. DH and I had discussed when would be a better time to get another. I think emotionally, it would be best for the people in the house to do it now. But don't think present dog would agree So, he knew it had been discussed. He also wants a YOUNG dog so he doesn't have to think about it dying. He wants a small dog of his own - he knows I want a great dane and that intimidates him. So a lot of the OCD thoughts are involved in this one. Mainly, I think it centers around his obsession with death and dying and the fact that our dog in his mind is going to die any day And yes, also the inflexibility. He wants it NOW and when he enters into this questioning, the answer would never make him stop. I cringe now as soon as he asks bc I know the rest of the day will be a disaster.

I hope so too! When trapped in the car listening to it, I'm ready to just drive to a stable and buy a pony if it will make it stop! I know it could surely be worse. It's just been bugging me trying to figure it out - what it is. Should I answer him or totally ignore it?

Thanks. That makes sense. No, I'm not overly worried about it. Just feeling badly that I missed so many things that WERE tics in the past (sucking his shirt, licking his lips)

A couple of weeks ago, actually on the way to see Dr. T, my son started saying "mommy I want a pony". He said this over and over despite my answering him (obvously NO LOL) for several minutes. He also says it in an odd voice, sortof a "valley girl" type sound. He did it again briefly on the way home, but I think only said it two or three times. He did this again this past weekend in the car. However, he is adding lines. "mommy I want a pony" "can we get a pony" "I want to get a pony". Again, I answered once and then didn't respond any more. I also didn't address it since if it is a tic, I don't want to make him self conscious. But trying to remember that he is a 7 year old boy and any 7 year old boy does odd things His tics just seem to be getting odder and odder to me (if this is also one). But overall, they aren't that constant. Prior to DX, he had very "classic" tics which went away with the initial course of amox.