qannie47

Is the Motrin not working? If it is how about just stick with that? I used to do compression therapy on my when this was a problem...pm me and I can elaborate...worked extremely well. If motrin does work, I would suggest to keep with that. Melatonin does work on the brain chemicals, and if you don't have to mess with them.....

done

I would think that since you went through the trouble of doing 23 test, and you found problem areas, you should follow up with a doc whom can help address them. Seems to me that both go hand in hand.

That's interesting, both my kids peed up a storm from the time the were potty trained....anybody whom ever had contact with them asked me if they had bladder infections...Only one twin dx with Pandas, but other has his own set of stuff.............

teri, running a fever is a very good sign. after Ivig, my ds started running fevers for the first time in his life. I too hoped that this was a sign of a maturing immune system...since last june(ivig), my ds has made constant forward progression in healing....not perfect...(who wants perfect anway), but headed in that direction to being a well rounded crazy 8 year old...

When my ds was dx with Pandas, age 6, as I learned about this disorder all the "peculiar" momentary blips on the radar suddenly made perfect sense. Dr. k believes that Pandas actually starts to get set in motion around 18 months of age, then the "big" episode happens around age 5/6. My ds was also dx with Hypo sensory, age 4, then there was that strange period of time when at age 3, my son suddenly went from walking with a typical strike pattern to tip-toe walking. He was diagnosed with "idiopathic tip-toe walking". Meaning, the specialist had no answers for me....Then there was the time when coming off of a chronic sinus infection, age 5, that he suddenly looked "autistic": lots of spinning and not connected...His doc and I chalked that up to a reaction to allergy meds...all of these things disappeared as suddenly as they appeared. When my excellent peds doc finally put the pieces together, we looked back at his records. My phone calls, citing these unusual behaviors always followed after a strep or sinus infection............ So yes, I think that Pandas does not exactly appear overnight as reported. I agree that many have that big sudden onset, but when one looks back, I bet many can find that what they had brewing was the "Perfect Storm".

what your sharing is very typical. Remember, IVIG is great for bit picture, but not an instant cure...your child will still flare, have great days/bad days. Don't panic....I know in all of our hearts. when we try a new form of treatment, we hope it is the end all....unfortunately it does not seem to work that way...

Mpatti: PTSD...that is where you are right now. It is completely normal. As time goes by, as you see him/her get through episodes/flares, you will start to see that the world is only temporarily tipped against it's axis. You are not alone. You will get through this. Remember that all the worry in the world will not stop a flare...try to allocate your energy to enjoying the good times....simple, I know, but true

If I am correct, the POINT of an IEP or a 504 is that any realistic requests can be made and if possible...fulfilled...for my sons 504, I was a little stunned at what accommodations were made...so I think that some extra time for her to finish course work is reasonable....if the work load needs to be lessoned, that sounds reasonable as well...

I am curious about the OATS test. I have the paperwork and test kits at home. What else did it reveal?

Some other suggestions. If I had it to do all over again...I would have sat down with chosen doc and come up with a comprehensive set of tests you want to run. You little one is only 3. Get your quantitative set of blood work that you want to run, and do as much of it in one shot. That way you are not dragging her to the doc over and over and poking her. That alone is enough to make anybody unravel. Plus, a Big Picture snapshot will be great. Start slow with chosen supplements. One at a time. Again, I made the mistake of loading my son up with too many to fast and then I did not know what was working and what wasn't. Give each supplement several weeks before you decide if there is any benefit or is problematic. Unless you see an instant highly negative reaction. Test ideas: Strep titers, Cunningham's panel, 23&ME, "The OATS test", Lyme & co-infections, autoimmune work up, blood panel. These tests, for starters, will tell you a lot about nutritional deficits, methylation issues, gut issues, neurotransmitter imbalances, active infections... I am sure others will chime in with other suggestions as well.

The good news is that you are not writing off red flag behavior and waiting for her to outgrow it. Maybe she will, but does not make sense on taking a chance when there is so much that has been learned about behavior and correlations to diet, disease, gut issues, gluten issues, methylation issues, tic born infections etc.... When reading your post, you have a situation that could indeed be anything, or a combination of the above. Remember, there are many labels like Sensory Disorder, ADHD, etc. We have all learned here in this forum that while these types of disorders are legit, the most important thing is to find the "root cause". Not for the faint of heart, but doable.... This can take time. A lot of time. Would your doc humor you and at least start with a strep titers test for example? See if she has had strep in the past? Remember, many Pandas children are Asymptomatic, so a blood test can sometimes tell a different story. I would start with asking him as well to run some basic blood panels to get a comprehensive peak at her.... I also would suggest that you not jump to Pandas....it could cloud your perspective. Rather then trying to prove a certain disorder at this point, I would start with just letting the tests/blood results come in and go from there. Let some of that tell the story. Sensory issues, my son is Hyper-Sensory...your description fits the bill. But again, maybe it is maybe it isn't....get the evaluation. You have your work cut out for you....but you will do it, and eventually find answers that make sense to you. If your doc is not willing to venture down a "search and discovery" approach to your daughter, I highly suggest you find one that will. I currently am a big fan of Dr. James Greenblatt, out of MA. He has a website and some very interesting published articles that talk about the relationship between mood/metabolic issues/gut/nutrition....just to name a few Good Luck!

Hi Grandma, I don't normally jump category's, (I live in the Pandas forum), but your post caught my eye....So I just wanted to say welcome! Ditto to Sheila, your grandson is indeed lucky to have a grandparent like you. Congratulations on finding this forum as well. As you dialogue your way thru ACN, you will find a very intelligent, educated set of parents whom have an abundance of information to share that I am sure, will be fruitful and eye opening. Best of luck!!! I look forward to checking in and hearing your success..... Best Regards, Q

Just thought I would share the name of this marvelous company in case any of you have never heard of them. I discovered them a couple of years ago and I fell in love with not only their product, but the whole concept. Wild Tree has an array of cooking products that are free of preservatives as well as many organic options. Interestingly enough, the line evolved from a mom who had children who were reacting to a lot of different foods/preservatives, gluten, all the junk that goes into much of what we can buy on a supermarket shelf. Her line is amazing. I mean amazing. One of her products that I really fell in love with were the infused grape seed oils. After using it, I found no reason to ever use olive oil again which was shocking because I use olive oil so much. Grape seed oil is not only healthier , it is actually cleaner tasting...She also has many other products that make healthy cooking a breeze. What shocked me is that her herb mixes, like the scampi taste like you made it from scratch....all of her blends do...I mean truly, I am a food snob, and truly, had I not seen the boxed packages, I would have never known...I have not tried her gluten free products yet, but I plan to soon.... I encourage you guys to look at the website. Just google Wild Tree. No, I am not a representative.

http://pandasnetwork.org/resources/providers/provider-list/#MASSACHUSETTES

Very happy with curcumun supplement. No side effects.

Hi Kari. Yes, your are very right. Everybody responds differently. First, to set your mind at ease, yes, some have what I like to think of as a "steroidal effect". An instant positive response. IVIG contains steroids. The immediate response can sometimes be an instant cesstation of symptoms because of the anti-inflammatory effects and the shutting down of the immune system. Here is the important part: This immediate response, it only last about 3 months. My son indeed responded "instantly", but I had to learn that the "big picture", the "important" aspect about what IVIG is that is matures the immune system. That takes time. A year or so. We were about 9 months out where I really saw the cumulative results.... So don't give up. Actually, the fact that he is not having huge negative reactions may be a good sign.... Best Regard

After reading this, much of what I wondered about seems clearer, yet I still don't get how a hospital can Veto a very prominent doctor's doctors from Tuft. That has yet to be explained. Despite the fact that the Pelletier's lost there cool and lead with their broken hearts and anger, there is no excuse for the clear abuse of power. Yes, it seems that her parents angered a lot of people. Still, it does not take a rocked scientist to understand why these parents would have moved to such an emotional/reactive state of mind. From the way that this case was handled from the beginning, it set the parents up to lose...Who would not have reacted with such rage to have a child torn away from them in 24 hours...It seems to me that this has turned into a Pi######ing match. I don't think that the judge, hospital, appointed guardians, or dcfs have Justine's best interest in mind at all. What we have here are powerful egos whom seem bent on playing their powerful hand. I have encountered individual's whom's best defense is a great offense. These people play with your emotions. They are experts at pushing buttons in order to elicit high emotional charges...That way they can say that your crazy.... This is all just so sad.

huh....I though for sure that the parents would get custody back. Something is very strange about this case.

Do you give her melatonin? It could be from that. I don't have any more info on that. I just recall reading that somewhere.

woops..that was the end to my pm to you...

My other question was about Yeast die off.. Q 1) When does that happen? His behavior took a turn about 2 weeks into probiotics. Q 2) How long can I expect behaviors before I seen improvement.... I read that Dr. Greenblatt says that it can take 6 months for gut/serotonin to level out and see improvement.

I played around with doses when I first encountered this problem. took him off for one week and then restarted every other day instead of once a day...Problem still occurred several weeks later again. It must build up too much serotonin...I guess when you are manipulating neurotransmitter levels, this can happen. I also wonder if the increase of serotonin produced increases receptor sites...which means they would require more to maintain balance....like an addiction of sorts....

Yes, Dr. James Greenblatt

Hi Ophelia...Cyber Hug to you. My ds had IVIG about 9 months ago. He did not have any negative side affects and he was one of the lucky ones whom was an "instant responder". However, he did have a big flare 4 months later. Since then though, I have seen other different, dramatic improvements. I have wondered if it was the delayed big picture affect that I have been seeing. They say that IVIG can take months up to a year to do its thing, so I hope that is true for you. I have my other non-Pandas son on a waiting list for Dr. Greenblatt. Have you read up on him? Somebody here posted a link here. That is how I found him. He is a psychiatrist whom is also integrative. What I have read has impressed me. He is in MA. I know that the idea of another doctor, another opinion probably sounds dismal to you. Just remember though, it only takes one doctor whom might make a connection that others missed that could be life changing.. Don't give up.