qannie47

Singular made my Pandas child look autistic...

Thanks for all your input guys/gals. I will put on my detective hat.

Similar diets, however non pandas twin is on limited dairy/gluten: gives him stomach issues. No, he is not on an abx. I have had him on probiotic for about 3 months: hoping that his gut issues can clear up and increased serotonin can be produced. The fact that he responded so well to 5htp gives me a clue...I have restarted that as of yesterday. My concern about non/pandas child is that he WONT swallow pills....ugh Yes, I now see that it would be stupid not to approach helping non-pandas child through a Pans approach. At least start looking into it... As of yesterday, my Pandas child, whom has done SOOO well has cracked under the chronic stress that his brothers issues have brought to the entire household. His brother is taking out his current "state of being" on him. Pushing his buttons every time I leave the room. Simple things, but he knows it gets the job done. Pandas child had 5 meltdowns, BIG ones in the course of 30 minutes this morning. Apparently he had one at school yesterday as well. I am sure the stress has caused an autoimmune response... Oh yeah, as of yesterday, my husband had to attend a meeting with after school program, (not same daytime school). IF ds gets one more write up, HE IS OUT. The chances of him not getting a write up??? Slim to none. When it rains it pours I guess...

So the jury has spoken...I guess I was hung up on the difference that A)his twin's Pandas symptoms came overnight, like a bomb exploding. Pandas child was always cyclical, in between he was this sweet little peanut C)non child is always to some degree ODD D) non Pandas child also able to be manipulated 90% of the time with behavior mod tools E)Pandas child: in the grips of flare, God himself would not be able to manipulate him...things like this... But you all make sense...I guess I just needed a shove...DNA carries weight, and I was hung up that it just did not look like Pandas...(at least in the way that I have experienced it). I do have him on list for Greenblatt whom is a psychiatrist, but has experience with Pandas/Pans/Methylation/gut issues/nutritional approach before he reaches for the script pad...hopefully June... I do ascribe to the belief that mood disorders all have an organic base... Thanks Guys/Gals

Okay, you all know how well my Pandas ds has been doing. Sigh.... It's his twin. Age 8 Recently, an ACN friend has urged me to consider Pans for him. My gut says NO. He just does not fit the profile. Pandas twin fit it to a T. But friend says you cant ignore DNA. Profile: Age 3 exhibited profile that exactly fit ODD criteria. High defiance, rage, mean, annoyed easily. Hyper-sensory Issues. Mild ocd but manageable. Frequent urination/anxiety. Lactose sensitive/gluten sensitive. No fears until last couple of months, now afraid of sleeping alone, going into rooms by himself...chalking it up to emotional milestone....??? Has not been sick. Past fall started 5htp: Excellent response. Mood/focus/temperament greatly improved. However, seemed to build up in system after 12 weeks and abrupt anger. Stopped supplementing mid Feb. As of Today: High ODD. High opposition: about to get kicked out of after school program. Daytime school working with me, but they are having a difficult time controlling him. HE IGNORES THEM. At home, highly negative, oppositional, crying a lot, anxious, stomach pain. (these are behaviors that I have not seen in 11 months). I think I unfortunately have ODD on my hands. Not saying that it cant be handled from a nutritional/auto-immune perspective... But what do you all think?????

Optimized Curcumin, with Neurophenol by Douglas Labs....Douglas believes that the Neurophenol that theirs contains assists in better absorption by preventing it from being destroyed by stomach acid...I take 2 a day at the same time...

Thanks Powpow. I just sent it to several people, including school and brother who's son was dx bi-polar about a year ago. He is not very open to everything I have been trying to share with him, so maybe this article, which speaks to bi-polar, will open his mind....

I get the whole shotgun state of mind..the good news is with all the clinical trials tumeric was found to be one of the few that has NO SIDE EFFECTS...AT ALL our exp supports that. I use new chapter tumeric force for ds and douglas labs cutcumin for myself...got it free from doc...thatd the only reason why mine is different

Glad to hear the great news!!!!

Have to chime in with regards to Turmeric. Started it 1 month ago, and I cant believe the results...My ds8, whom was already doing very well, went to amazing. All residual tics have stopped completely with the start of the 2nd week. Saw improvement within 24 hours though....Receiving wonderful notes from teachers at school! I was curious and decided to take some to see if I could feel anything. I have chronic back/shoulder/neck pain and live on Aleve. It actually works BETTER then the Aleve! This speaks to the anti-inflammatory properties that Turmeric is supposed to possess...

How is his mood? Is he off his baseline behavior? No eating can certainly make you lethargic. With the limited eating going on for awhile, I could see where he has lost his appetite. We have all experienced this while dieting...Hopefully you just have a viscous circle going one...Is there any food that he loves? Perhaps you could indulge him and let him eat plenty of it just to jump start his appetite. Yes, this can also be typical...teenagers are notorious for wanting to sleep all day. However, you as his mom know your son, so go with your gut...

I would say that a fever after t/a should be looked into.

Nice to hear T

Sorry to hear that...I know how heartbreaking it feels after a long stretch. I would go to similar dose that you would give to treat an infection, like strep. When I make the decision to go from prophylactic dose to higher, I go with standard dose that a doc would write for infection.... About 4 weeks or so ago, I started my ds on New Chapter Tumeric Force. One a day. I started seeing results one week later, and even greater results by week 4. It has strong anti-inflammatory affects. My hope was 3 fold: 1) eliminate the use for motrin during popcorn mini-flares. 2)Eliminate need for abx when ds is dealing with exposure or mild infections that can cause flares 3)Bring him to another level of "better". So far, for the last 3 weeks I have not had to use motrin because I have not seen any mini flares at all. In fact, I have not seen any behaviors/tics that resemble his unique pandas symptoms. None, Zero. He in fact has gone to another level of calm.. He did have a cold ten days ago, and I saw no flare whatsoever. So do I hand all the credit over to Tumeric. Well of course not. However, I do believe I came across another piece of the puzzle in learning how to help my ds. Maybe give it a go? Best of luck....

I am surprised about the Benedryl though....

Spring is strep season...so exposure can do the trick...also, remember pandas kids can be asymptomatic with strep. I always check just to be sure...Seasonal allergies and the autoimmune inflammation response is not our friend either...

My ds was dx with Pandas about 2 years ago. After all the reading I have done to learn about this autoimmune linked disorder, I have come to conclusion that all psyche disorders are in some way linked to either autoimmune, methylation, and gut issues. There are just too many parallels to make this a coincidence. My pandas twin is on a waiting list with Dr. James Greenblatt. He is out of MA. He is an integrative psychiatrist whom believes in looking at the things listed above before he reaches for the prescription pad. It seems that he has had a lot of success in treating kids from this perspective. He has published books and articles that you may find interesting. You can ask your peds doc to order a metabolic and autoimmune panel. There is also the oats test. The Cunningham panel. Did they run a basic blood panel to see white blood cell? There are lots of ways you can approach this. There is lyme, 23&me. If you can, get your doc to order all at the same time so you don't have to keep running to doc for blood draws (not all blood though). Having the results from these test be very revealing and time saving......... Best of luck.

ibcdwc: My ds gets facial tics from fish oil. I am convinced it is the ala that is in MOST fish oil supplements.

My ds had one IVIG. He looked great for 12 weeks or so then had a small popcorn flare, a couple of days. Then at week 16 he had the worst flare to date. I was rather disappointed. However, when the reports came in from fall conference, clinical studies showed that IVIG takes at least one year to do its thing, maybe a little longer. In the meantime, flares are gong to happen. I reset my expectations. I had hoped that a flare would never happen again. This is really not a good expectation. The good news is that since then, my ds had done GREAT. I will share that he did have a T/A about 4 months ago. Since then, he went to another level of great. I think it was a combined level of IVIG and t/a. My point is, as research dribbles in, it looks like more then one IVIG in typically not necessary.

p mom Thanks for sharing! These success stories truly transcend hope. While I had great success with IVIG as you all know. I truly felt like it was the t/a that was as important, if not more beneficial then even the IVIG.

pr40....Just think of it as the ultimate compliment! Truly, I personally love it when I see fathers weighing in.

Interesting thread. My non pandas twin, but with sensory issues, moderate odd has the flushing cheek/ear issue...over time, this has lessoned. Still see it from time to time though...

SSS: I love this doctor....he has some wonderful videos. On my cabinet, a quote from him, "If a child could do well, he would". Now I know that sounds contradictive of discipline, but I believe it is about knowing what your child is capable of/or learning and knowing what he/she is not capable of at the present time in their life... holding them accountable or showing divine mercy.... Discerning the difference can feel like winning the lotto....

STRESS: Don't forget about GOOD stress. As funny as that sounds, when learning about my children's sensory issues, I noticed that Good stress (like anticipating xmas, etc.), and Bad stress, both can be interpreted by the brain as the same: A heightened emotional response, which when prolonged, can have the same exact outcome on the body.

When I find myself wanting to rationalize inappropriate behavior with my Pandas ds, I remind myself that just about every person on the planet is carrying around their own form of a cross. Yes, some worse then others, but if I did not instill in my child that they still need to be held accountable for their actions, in fact can take control of some of their actions....I would not be doing my job as a parent. Need to add that I make this same mistake enough of the time.