qannie47

My non Pandas twin was recently tested with very similar issues, amongst others. Testing flushed out a Very Slow Processing speed. He had done Very well with elimination diet, which fixed mood issues...However, I was convinced to try Conserta to address the Slow processing speed since that is a hard wired thing as Mommybee inferred. The results were instant and amazing. At home I saw increased focus, better impulse control, and no figity behavior during homework. His reading became much more fluent, and he now will take the time to sound out hard words. I see that he is more excited about reading and his comprehension has increased. School has reported the same and his teacher said the difference was so remarkable that she almost started crying in class she was so happy for him.... Dr Swedo talks about the effective use of medication with Pandas kids. She gives the example that the Root Cause does not rule out that medication can't still be helpful. If it helps, why not use it? She also states that in her vast profiling of Pandas kids, she sees a lot of ADHD. Co-morbid or the result of inflamation/Pandas....hard to tell I suppose. My point, I am so pleased with the results with my one twin, that if his Pandas brother tests out similar, and if med is suggested, I will be open to it. I see an upswing in my one twin's life quality on med. I'll take it. He is happier and feeling more successful.

Hi Ophelia, I was sitting waiting for my father at his Urologist yesterday. There was an article about OAB and newly approved treatment and thought of you. Botox injections. I know your root cause is different, but perhaps it could still help you? You have probably either already tried this or considered...but just in case you had not heard of it I thought I would post it.

Hi Ophelia, I am sorry to hear that you have not found any relief. Don't give up. You have a fighting spirit, and that has to eventually count for something.

Another thought, how long has she been on Lithium Orthate? My doc took our son off of it after 6 months. He said that should be enough to bring up levels....When I quickly googled toxity....it spoke to erratic behavior.

Keep in mind that if this is Pandas related, your child has lost her ability to be reasoned with. She has lost cognitive assessibility. When my child was in the thickest grips of a flare, there was NOTHING I could do. Nothing. I switched my goal from trying extract reason or desired behavior to "anti-stress" therapy. Many times this worked. Joint compression therapy worked well: Just below each joint, for example the knee, slightly push the joint in and out over and over, about 10 times. Move onto the wrists, each finger, ankle. I also would gently pull on each finger to create a stretching feel. I would do this with his arms and legs: holding at the ankle (imagine the stretch going all the way up to the hip) With the arms: create a stretching feel by holding onto the wrist and pulling with constant tension. They should feel the pull all the way up to their shoulder. Do this whole body therapy for ten minute increments. Sometimes I would have to do it 3 times in a row.... I also did back massages with aroma therapy. Hot baths. Think DESTRESS. With my son, I believe that the dopamine surge was sending him into a fight/flight mode and these kinds of things helped. It would often result in him feeling drowsy from the relief....

I used benedrill when my ds was in the thick of it. I hated the thought that I was drugging him, but honestly, the crazy behavior was just too much to handle for any great length of time. It worked. I am sorry that things are so rough in your household right now... Best of luck with IVIG. We had great, lasting results with it

ditto to rowing mom!

I have two voices in my head: Is it a separate, co-morbid issue and just a food intolerance/mood issue, or is it connected to Pandas> in the sense that if it the food goes undigested>which eventually causes bacteria/inflammation>then causes lesions in the gut>LEAKY GUT>which when leaches into the blood stream>causes an autoimmune reaction> Pandas or just Food Intolerance which is essentially a similar reaction in the sense that it is believed that antibodies created by the leaky gut crosses the BBB and causes inflammation and mood disturbances..... See the dilemma? I have a Pandas twin and a strictly Food Intolerance twin....both react to the same food in a negative way. My conclusion: When it comes to certain foods, if it causes a reaction: Avoid

I really like the biocarbonic version, Calm. I heard the bioavailability is higher and faster into the bloodstream Why cant I get a larger font.....I have it set on 14

vit C deficiency can cause nose bleeds. My non/pandas son had No traceable Vit C in his blood, or next to nothing because of his gut intolerance. He was not absorbing needed vitamins because of the inflammation in his gut. His biggest symptom of low vit C was bleeding gums

I would see if Dr. Swedo would see you.

my kids take it in a biocarbonic version. I tried it once and it knocked me out!!! Immediately.

Right now we are at about 300 twice a day. He was originally on 1x a day. It was the second dose that seemed to do the trick. Good to know that I can go to a higher amount.

Recently I spoke with our doc about my non-pandas child whom just developed a mild vocal tic. He told me to increase Calm from 2tsp 1x a day to 2x day. It worked! My Pandas son just started his first real flare in over 14 months. UGH. However, the worst of it lasted only 2 days and it seems to be diminishing pretty rapidly with the exception of his Facial Tic/Verbal....I decided to give him a second helping of Calm today, and it worked for him as well.

Thanks everyone. A lot of good info to think about.

Hello, I feel lucky that I have this educated group to turn to when looking for possible solutions. My NON-Pandas child just finished testing. He came up very low, 10%, with processing speed. Auditory primarily affected. Examiner feels that this is "root" cause for his reading/spelling/comprehension problems. This processing problem also granted him an ADHD and reading LD dx. Doc feels that meds would speed up processing issues and explained that 'slow processing" is what "causes" ADHD?????? Dr. Greenblatt will weigh in via phone, and if he agrees that meds could help I will go with his recommendation. Q: Anybody have any luck with any programs (to do at home), that can help speed up/strengthen this area? Thanks, Q

strep can hide in the joints as it did in my son for years and it caused constant joint pain behind his knees. When we eradicated the Strep, years of joint pain went away...and never came back. Magic

would she allow you to do the netti-pod? I had CHRONIC sinus infections for 3 years from august thru Feb. I stared using the netti-pod 3x day for one month and not only did I not need abx, moving forward, I started using at the start of the season, 1x day. I have not had ONE infection since. It has been 3 years since last infection

could this be a yeast die off reaction from the probiotic? Early on, when I first introduced probiotics, it caused all the same symptoms that you are describing. Chest pain, could this be from him doing some minor hyperventilating from anxiety??? I only ask, because there was a time in my life where I had anxiety, and I did some mild hyperventilating. Not in any big way, but a lot of long deep breaths, nobody even noticed...however, it cause strain on my chest muscles, and I experienced a fair amount of pain.... elbow pain: is he ticking with his arms? If he is doing a weird move, it could cause elbow pain with constant intermittent movement. Optimized Curcumin by Douglas Labs. They are wonderful for ALL kinds of inflammation. I suggest them because I know they are the real thing with the best bioavailability. I no longer need to use motrin and it provided 24 hour relief .... for my pandas son or myself (I have chronic back neck shoulder pain). Don't mean to sound so simplistic, but I always start with the easiest answers....it has saved me time and money.... Keep us posted, and good luck.

There is a test by Trace Minerals that will ck those levels.

Well, he certainly is hitting many of the red flags when looking for a Pandas/Pans link. My advice is that you do not cancel his appointment. If this is Pandas/Pans, you are going to need to put a game plan together with your doctor. There is a very high likelihood that you will continue to see future flares; the faster you treat him with an abx, the faster he will recover from a flare. You have caught this early, this is GREAT news. I suggest that you read all that you can about this disorder. The more you understand about it's etiology, what to expect, and treatment options, the better prepared you will be to help your son. Best regards, Q

Interesting. My pandas son never ran a fever until after ivig. A sign to me as well that his immune system is working properly...now, I do not rush to lower a fever until it is over 101

With litiumI would think that you should test levels before giving

Tested 0 for vit c? That is an absorption issue...can cause loose bowel...

Both my kids are on liquid lith by purr encapsulations. I have seen mood stability and focus Improve with both my twins. 1/2 dropper one time daily