qannie47

I use CALM, by Puritans Pride. Available at many stores. 2 tsp. will deliver about 325 mg. This product is dissolved in water, and the bio-availability is high to the brain. I tried it myself, and I was astonished by it's effects. I was ready to go to sleep within minutes of ingestion. I believe it is water soluble, so do not worry about it becoming toxic. I would give your child a banana every day to help with diarrhea, because it will soften the stools, and if your child already has and issue, the banana will help. I would start with 1 tsp and go from there.

Have you had his copper levels tested?

Interesting pr. My pandas child can have mood swings, and I have been wondering if it could be a possible blood sugar issue...Interesting Thanks! I do not know much about hyperglycemia. Does one have to remove all sugar?, or just balance it out a bit more with increased protein? I am not sure either that one has to be full blown hyperglycemic to experience the mood swings/irritability; as we all know that many kids on our forum can react easily. I am going to start adding more protein to breakfast as a start, see what happens. The good news is that both kids are really in a great place, however a little tweaking never hurt anyone!

awesome sauce

Yes. My Pandas boy experienced the same thing as well from 3-5. Drove his father nuts. Although, I never attributed it to a flare. I just assumed that it was basic curiosity, and an expression of his creative side. By age 7, this went away completely. Now he plays football and is all boy....

Smiling. It is so wonderful to hear your joyful news!

Also on leg pain...my Pandas son had chronic intermittent leg/knee pain. After he had his first BIG Pandas flare, and we treated with abx for 6 weeks, his 2 year long bout of knee/leg pain all went away 100% and never returned. Keep in mind, the leg pain all occurred before Pandas. Some theorize that Strep hides in the joints. That it is there that the Strep mutates and is able to form that protein layer around it's own cell that is similar to the heart and basil ganglia. Hence, the road to Pandas. My son's strep titers were never remarkable either...yet he has had several bouts of strep in his young life before Pandas.

Good question, I would guess yes. Hopefully the Lyme people will chime in for this one.

oops, I should have been more specific! I agree with beesknees, I meant time will tell under the treatment of a good doc!!!

Very true Dedee, each case is unique unto itself too a certain degree. One of the things that I think is great about the Pandas conferences that are held is that while each doctor may have a different opinion on certain aspects, they all come together and are respectful to one another in the united quest to understand and treat Pandas.

If you read through the many threads in this forum, you will find that tics can change, as well as wax and wane. Time as well will also tell you whether it is truly Pandas.

Yes, this is Dr. K. This is his viewpoint based on his medical hands on experience. We did experience this with my son. The first initial abx worked like magic. By the time we got to the 4th flare, abx stopped working to reduce symptoms 80-100%. When they stop working, it is then that he feels that IVIG is a possible solution. That being said, it seems that there are the "responders" and the "non responders". I am sure you all have heard this before. The odd thing is that kids whom respond well to a steroid do well with IVIG. Kids whom do poorly on steroids seem to not benefit as greatly from IVIG. I do not think science has these answers yet, unless I have not read that particular part of research....Same thing with regards to why abx stopped being as effective.

Quote; "currently things are mild and manageable".... What is her baseline? We have needed up to 2 10 day prescriptions to halt a flare after the initial first Flare. After the first 3 flares, returning my son to his baseline became more difficult. Eventually, abx stopped working. It was at that time that Dr. K said we needed to consider IVIG.

I know I am a constant echo with this...but Turmeric is wonderful for inflammation. I really like the Douglas Labs brand. Optimized Curcumin. It is supposed to have the highest bio-availability.

call dr. K

sorry to hear that searching for help....

Hi guys/gals. Things have been going so well with my twin boys that I have not needed to post much these days.. However, I did want to share a test that I learned about through Dr. Greenblatt. Genomind is the Lab. It is called Gencept Assay Dna test. It looks for genetic markers that can help guide a doctor to pick which would be the most effective medications, and which ones to avoid. While my child is doing so well that it looks like meds won't be needed, it is a very interesting report indeed! No cost with insurance. Company does not balance bill. Refreshing....

I 2nd pr40 with regards to never heard of ibuprofen causing tics... Yes, Stress>anxiety>turn on a glitch immune system>new Pandas flare.... Stress turns on the autoimmune system, and for Pandas kids, it will cause a flare. Until the immune system has matured/healed, call it what you like, anything that activates it will most likely cause a flare. That is how it has been explained and experienced in our household. As the child heals, stress/exposure/illness, etc...will have less of an impact. 10 months under your belt, I see this as a good sign. I know full well that we Pandas parents, when in a good place for a period of time find it very disheartening when we see those old symptoms appear again....AGH............ PLEASE REMEMEBER: AS IT DID IN THE PAST.....THIS TO WILL PASS

USE IT LOVE IT. TOOK MY NON PANDAS CHILD TO ANOTHER LEVEL OF SUCCESS ALMOST IMMEDIATELY. He is my adhd/angry child. It helps him immensely along with the elimination diet of eggs/dairy/gluten. After diet, his reading jumped up ONE year to grade level in 2 weeks. After Lithium, his reading got even better. His anxiety also diminished impressively. I give 1/2 dropper once a day by Pure Encapsulations. They are on the internet.

Hi pr40. Sorry to hear that you all struggled this summer. Lipoic acid, turned my child into a ticking mess. Have you tried CALM, by Puritian's Pride? It is a bio-carbonate magnesium product in powder form. It is supposed to have a higher bio-availability then a tablet.... 5htp: yes tried it, like it. However, you can not use it for more then 6 weeks, or it can build up in the system and cause opposite effects. We did experience that. However, perhaps you can use it for the short term to give your child some relief. A higher serotonin levels might help him to feel more relaxed. Will be thinking of all of you. q

Hi Smarty, A friend of mine took part in a NIMH study, and she shared with me that Dr. Swedo shared this with her. I am not sure if this is documented anywhere.

Welcome! Unfortunately, there is no easy way to answer your question. While much has been learned about Pandas/Pans, there are too many variables involved that can make each case quite unique. But to answer your question. I would say that the average flare can last 2 to 6 weeks. How many a child has depends on many variables as well. My son, his first year had about 4, each lasting about 5 weeks. He has received treatment, and now two years later, he has not had a big flare in 8 months. It is truly a healing process of the brain/immune system, and that takes time. I used to hope that my child would be the one case that went away and never returned....but that is just not how it works.

NiMH, when testing Pandas kids, found that visual memory, actually, any form of "working" memory is affected with Pandas kids... If memory serves me correctly, working memory is in the front of the brain, coincidentally where the basal ganglia resides.... My Pandas child.....Good God....his visual/short term/working memory is awful. Just awful. He is in recovery and doing very well. However, the last to heal is his memory and evening bed wetting... Stress, can also create the kind of problem you are describing. Stress will create havoc with focus. I have experienced that. Also, the more you dwell on it, the worse it can get if stress is the root cause...

Dr. Greenblatt says that once you are gluten free, it will take a very little amount of gluten to cause an adverse reaction. Have you checked Casien allergies? Again, Greenblatt says that is a biggy for brain fog as well. My son is horribly allergic to it. In fact, when we removed all mild products, he no longer looks add at all. I have heard that pure encapsulations has a new product that will break down gluten faster so that it can leave the body faster: and decrease the IGG reaction. A pharmacist told me about it, but I have not had time to research it, and I do not remember the name of it. We have also added liquid Lithium to my allergy kids diet, per Greenblatt. It has helped immensely with brain fog. You can order it online. When researching it it is very safe. This is not the psyche drug. btw

Even if it is a compulsion, she still can learn to take some control.... And while that may take awhile, I would take the Ipad away UNTIL she is able to control what she throws. However, I would not put it too her as a punishment; more so a necessary cause and effect because "Ipad's cost a lot of money", and they can't be thrown. I would keep it short and sweet.