qannie47

I think that your Pandas child could just perhaps be wax/waning from the original exposure... The couple of days off abx having no relationship to your pandas child looking symptomatic again. However, I think it is important to check non pandas twin to make sure infection is cleared. Otherwise, your pandas twin will continue to flare. Does this make sense?

Makes good sense to me llm. I used to have big stomach acid issues. I lived on the typical acid reducers. I was also getting sick all of the time. I accidently discovered through the South Beach diet that Carbs were the real enemy. When I reduced them, my years of stomach/gastro issues went away completely within 3 days of the diet. While I never stayed on that diet for long, I learned to reduce my carb intake if only for my stomach. I have not taken acid neutralizers for about 2 years now. Coincidentally, I have not been sick as much either....perhaps not a coincidence after all. Never made the connection until your post. I just love this place.

SSS, I am very glad to hear that your doc has begun to open his medical mind! I am not surprised. My kid's peds doc (the one whom dx him originally), reported about 8 months ago that Pandas was covered at a standard medical convention. He said that they took a raised hand vote on believers: Over half raised their hand. He was happily shocked. That was 8 months ago. I can tell by the posts here that indeed Pandas is finally being embraced! I wonder how long it will take the insurance companies to start raising their hands????

Rachel, I finally started down the road to a Gf/CF diet! I feel it is imperative for my non Pandas child. I have decided to go slow, and hopefully by 4 weeks I will have mastered much of what is needed to know. I am excited that I have found Gluten Free oat flour. I so far have made excellent pancakes, chocolate chip cookies, breaded fish/chicken, and orange scones. They are almost identical to the real thing, I cant believe it!!! I have decided to make the whole house abide by the diet. So far I have managed 3 days of no gluten/dairy and I am shocked at how much better I even feel. I am sure it will take much longer to see noticeable results in my son, but I am hopeful.

A friend whom was a part of a NIH study for Pandas was told by Dr. Swedo that ADHD is often a co-morbid condition to this disorder. Is it caused by it? Maybe. She did say that it does need to be treated, the ADHD separately. Do you have her on a gluten/Dairy free diet? I cant speak to this personally, but I have a ADD son, an I am finally starting to address it from this perspective. I have had much positive feedback regarding how helpful/important this aspect is.

I agree with Powwow. If a new bed gives him relief, it is worth it. Decisions: I use this on my one child whom can't make decisions easily, and it also works on his twin who tends to "dislike" things. Instead of an open ended question that leads to a yes or no, I give 2 options and ask, "Which one do you like?". It tricks both of my children into making a decision.... Actually, I use this approach in many scenerios and it has worked very well....

Early neurological symptoms: you might be surprised at what is neurological. sleep walking/talking is, although I am sure you already know this. Think about moments that occurred for 1 to 2 days. Odd moments that can be passed off as "kids do weird things". Spinning, motoric movements, hyper-activity that came and went, repetitive motion, thoughts, or actions. My son was a hoarder, for example: paper, block, toys, the child just liked to collect. Again, never caught my radar, but it was in hindsight that I saw the misc. dots start to align. Again, perhaps your child has "topped" off. Perhaps it is not this horrible disorder. In support, q

1 year ago: sudden tic and ocd 5 months ago: Pans symptoms Current: residual tics/mild ocd You have a pattern that is very typical of Pans/Pandas. I bet if you search your mind going backwards, you will find yourself remembering weird/idiosyncratic behaviors that occurred while your child was growing up that "suddenly appeared", and as soon as you started to become concerned, "they disappeared". An example for my son in hindsight was his "3 month spell of tiptoe walking" at age 3. Doctors puzzled, ran tests, it went away, and the dx became "idiosyncratic tiptoe walking" (this means doctors have no answer). It went away, and we never thought twice. Looking back, there were several times in his life where "odd" things came and went that had a neurological feel. It was explained to me by Dr. K that Pans/Pandas can start as early as 18mo of age. Like the perfect storm brewing, all you have for years as far as symptoms are these little odd "moments". Your son had his FIRST "big" exacerbation I would say 5 months ago. One year ago probably qualifies with the sudden tics, but what really got your attention were the accompanying Pans symptoms 5 months later. My point: I would never ignore and "wait & see". I have too much respect for this disorder to know first hand what it is capable of doing to a child's and families world...It is brewing....I don't mean to sound so dramatic. But it is. Is it possible that this is as bad as it gets for your child? Sure. I just would not take any chances. There is much that you can do from a "proactive" stance. First, I would see a Pandas/Pans specialist. Prophylactic abx is important. Addressing the Gut is important because much of the immune system resides there. Supplements like Omega's, Vit d, Turmeric instead of Motrin are just a few of the many very important things you can do. My child's first "big" "on the Pandas radar" was at age 6. He responded so well to 6 weeks of abx and went back to 100% (actually even better because his strange RLS which was with him for years went away for the first time and never returned). We decided to wait. Well, 3 months later, another flare. Then another. By the time we decided to do IVIG he was a mess. There are many different opinions regarding IVIG on this forum, and they are all to be respected. While we all have much in common when you read our stories, when you dissect, we are also unique in our own way. So for my child, IVIG was a Godsend. I wish I would have done it sooner then later. Our doctor felt that as long as abx was working there was no rush for IVIG. In one very big sense he was right. There is a course/protocol that must be followed. I get that, I respect that. It is good medicine. That being said, my recommendation would be that you consider IVIG. Along with some of the other golden nugget supports that you can find on this forum. Best of luck.

My child also was a complete dream whenever steroids were given. The fact that your child had such an amazing positive reaction to the steroid at least supports that this is auto-immune and inflammation based...I think it is the steroid taper that is unfortunately causing some regression of symptoms. I also second what pr40 said, it takes a year or so for the full effect of the IVIG. My ds is coming up on a year and he seems to be getting better and better... Perhaps you have read this in my other posts, but the Turmeric/curcumin supplement has worked amazingly well for him. I started it about 2 months ago, and I have not seen the residual motor tics at all, and I have not had to give him Motrin once. You may want to add this to his regime. I have 2 I can recommend: New Chapter: Turmeric Force (its an oil extract in capsile), and Douglas Labs: Optimized Curcumin (the root of Turmeric). I have used both, and I feel like the Douglas Labs product brings just a little more to the table. However, I was very happy/amazed with New Chapter as well.

Many docs advise not to chase titers...timeline on when test is done will give varied results. Plus, some people dont create high titers like my son whom had strep for 6 weeks...blood titers were in normal range..hence this nebulous disorder. Having no recent strep infection does not mean you have outgrown pandas...having zero symptoms for years means you have...best of luck with ivig...it helped my son a lot

So glad for you and your son!!! It is like an elixir for hope and provides great emotional nutrition when good news is shared!!!! q

Thanks momwithocdson. Luckily, I found a group right in my PEDS office. There bread and butter is CBT, and get this, they even run a summer camp that integrates fun with therapy that is covered by insurance....WOOOOHOOOOO!!!!!

I have pondered the same question, it seems like our children are in a similar phase, thank goodness the healing phase, with more down then ups and quick reversal with abx use. My ds is still on abx 250 mg once daily, and doing fine. The curcumin is helping immensely with in between flares, so it is a shame that your child can not tolerate turmeric... If I were you, I might try once a week...if that is not sufficient, then twice a week...see what works. Perhaps google other natural supplements that stand up to clinical trials for anti-inflammatory and see how those work as well. As a Pandas parent, you are already used to being your own doctor to some extent, so trust your instincts. I am glad, based on your post that your child is doing so well!!! Blessings, q

Hi guys/gals. I have decided that both my boys would benefit for CBT therapy. I live in a suburb about 30 miles West of Chicago. Anybody have a referral name? I would appreciate it. Thanks, q

I remember one time when I think I had fielded maybe my 4th phone call for the week between the teacher, school psychologist. Now it was the principal. After he got done talking, the only thing I could think of to say was, "I need a drink". Now, one with any brain cells in their head would never utter such a statement to a principal. But I did. He agreed.

Turmeric has been very helpful with motoric movements and emotional lability. Just make sure its a good one. We have used new chapter, turmeric force. I have also used optimized curcumin which is the root by douglas labs. My son has not needed motrin for 6 weeks since we started

Did they use a steroid during surgery? I hear it is pretty standard these days, but you did not mention it. I think that antibiotics is very necessary in your case because of the Pandas dx. Remember, the abx works for the infection part, but it also in an anti-inflammatory. Without a steroid and abx, it makes sense that you would be doing worse or no change right now. Your body just went through surgery, so your immune system is turned on. That is what the steroid/abx could control...On the bright side, when your body is done healing, you may find the relief you are hoping for. Best of luck q

I often find myself thinking, "My children, with their individual issues would have thrived so much better had they been born 50 years ago." I am not in denial that my children have issues that need to be addressed, but raising "imperfect" children in a society that has stolen childhood from children across the board has made it all much more stressful. It seems that children are no longer allowed to be children. You never see kids outside very much anymore. Everything about children's lives are so structured. The pressure to perform academically starts at age 3. In my area, academic material is about 2 to 3 years ahead grade levels from what I remember in school. Kids are no longer allowed to climb trees, ride there bikes around the block, get dirty, or free play for any great length of time. Summer Camps go by these kinds of names these days: Math Camp, Literacy Camp, Engineering Camp, etc.. Then there is the fear factor variable. Kids are being raised to be too afraid. One time, a neighbor came over, and politely asked, "Do you think it is wise to let your children climb over your fence? (the fence is about 4 feet high). I replied, "Didn't you ever climb a fence when you were growing up?". I could go on and on. I feel like society wants robots, not children. So, I not only feel sorry for my children, whom have to try to blend in with these new norms, I also feel sorry for the child whom came into this world without any special challenges. So when even a typical starts to exhibit stress cracks, society wants them medicated.

Wow...I thought id heard it all

We did it. Showed nothing. But it at least ruled out other dx's. I was told that the MRI is not strong enough to see the kind of inflammation thought to be affecting the Basil Ganglia. I did hear though that there are other imaging tests that can...

I had some real success with my son age 8 for about 12 weeks. Then it seemed to build up or become not as effective. Not sure which. Chemar: I have been researching long time use for 5htp and I have found some articles that claim it can be for long term...Have you found a reliable source that says not for long term?

some kids are not yet at the point to be able to problem solve in a collaborative way. Transforming the Challenging Child, the Nurtured Heart Approach, by Howard Glasser is the only approach that has not only worked, but offers immediate results.He does have a video. I recommend that. The program itself is not complex, but he offers a lot of insight about these kids that really lends itself to not only understanding your child, but the the success of the program. He was a difficult child.

That is about the only thought that my brain is able to embrace right now. I have been a great mom. I have dealt with Sensory Issues, Insanely Highstrung behavior, Pandas, ODD, you name it. This is the short list. I have handled it. People look at me and say things like, "They are so lucky that they have you for a mom", "I don't know how you handle all of that". I have spent the vast majority of the last 5 years educating myself on the internet, signing up my retarded husband up for parenting classes that reaped...NOTHING, putting together behavior mod programs, I have invested an enormous amount of time talking to: teachers, psychologists, principals, marriage counselors, doctors, camp counselors, babysitters, karate instructors, baseball coaches, family members, and neighbors whom I hate. I have read books, watched videos, listened to anybody whom I thought I could learn something from. I know way too much about Strep, the brain, neurotransmitters, vitamins, probiotics, behavior mod programs. I mean, my best friends biggest dilemma with parenting is, "Luke said a swearword today". ugh. And you know what???? Yes, I have been very lucky. I have reaped great results in the grand scheme. But today....it was just one of those days. I can even admit that the crime that has apparently sent my psyche into the land of *&^*^**& tomorrow wont even look that bad. But here we were, at the peds office. Now, I have spent the last 6 months sharing glourious emails with Dr. D about Just how well my Pandas Ds was doing. I was even excited about our appointment. While he did have a heads-up that his twin had just fallen off the cliff behavioural wise, I walked into his office calm, and excited for him to see first hand just how well life was.. OF COURSE...THE MINUTE DR. D WALKED INTO THE ROOM, NOT ONE BUT BOTH OF MY KIDS PROCEEDED TO ACT LIKE TOTAL AND COMPLETE NUTJOBS. THEY LOOKED LIKE A FLASHBACK FROM 2 YEARS AGO WHEN I KNEW NOTHING AND HAD NOTHING UNDER CONTROL. I WAS STUPTIFIED TO THE POINT THAT I DID NOT EVEN KNOW HOW TO REACT!!! I MEAN, STUPTIFIED. In the end, Dr. D was looking at me with pity and I wonder if he now seriously will second guess anything that I have to say in the future. Now, this truly may sound like it is all about ego, and I suppose some of it is. However, one thought led to another, and then one bad behavior led to another, and NOW BOTH KIDS HAVE BEEN BANISHED TO THEIR ROOMS FOR THE REST OF THE NIGHT. I DONT WANT TO SEE THEM, TALK TO THEM, HEAR THEM. UGH To their credit, even they know a crazy person when they see one. They are both in their rooms, quite.... In the end I am just tired. In my fantasy I wake up tomorrow and I have typical parenting dilemmas. In reality, I know that I will wake up tomorrow morning, take a deep breath, remember just how amazing my kids are. but for the moment, I still would like to throw just one through the window....Just one?????

Headache is typical. When my ds had IVIG, I was given a steroid to administer. I was told that it was important to give steroid as soon as a headache emerged. It did. Gave the steroid, headache went away immediately. My son had Rheumatic fever about 2 years before Pandas symptoms. It is seen in enough Pandas kids that it is noted in many researchers criteria. Interesting...makes sense My ds had joint paint for years. Did not make the connection. When he exploded with first Pandas flare, and treated with abx for 6 weeks, his joint pain/RLS went away and never returned. So yes, I think it hides in the joints. Some researchers believe that it is there in the joint that he Strep mutates while hiding in the joint. By imitating similar protein surrounding heart/brain cells. For our child, this is how I believe the disorder of Pandas was tripped off... I am glad that your child is getting some good treatment!!! Best of luck

Hi Swedish mom, welcome to our forum. Antibiotics: They do 3 different things. The obvious is that they ward off infection. They are an anti-inflammatory. They shut down the immune system so it does not create "misguided" antibodies. I suspect that when you miss a day, it is the anti-inflammatory effect that your child is missing. Seems like that is the pattern. To a certain extent, you are right, Pandas is on "hold". Until your child's system is truly recovered, the "wax/waning" will be a part of all your lives. It is often a long road. Know that what you are experiencing is typical, not a sign that you are on the wrong road. I recently supplement with New Chapter, Turmeric Force. 1 a day. Because the inflammatory process is such a big part of this disorder in causing symptoms, the supplement has worked wonders for my child. I encourage you to try it. Be careful about brand you choose, not all are the same. Douglas Labs also has a good one. Optimized Curcumin. Given daily, you might find it is enough to hold "symptoms" in check when you miss a day of abx. Each child is unique though... My child received IVIG. Plasmapheresis is more involved, and considered the "golden Cadillac" when using these kind of approaches. For my child, IVIG worked extremely well. Again, each child is unique. Remember, treating Pandas often takes a multi-layered approach. Each step brings something important to the table. Best of luck.