Kathy4Him

Thanks....I think capsules would be easier for my son at this point. I am waiting to get the ok from his treating Dr.

What brand of capsules do you buy? I think that would be easier than drinking the powder. Thanks!

GI Protect™ Featuring IgG 2000 DF™ & L-Glutamine GI Protect™ features XYMOGEN’s IgG 2000 DF™, with the added benefit of the amino acid L-glutamine. IgG 2000 DF represents a breakthrough in immunoglobulin supplementation. It is a highly concentrated, non-dairy source of serum-derived immunoglobulin antibodies and immunoproteins. It possesses three times more immunoglobulin G (IgG) and total immunoglobulins than colostrum and has twice as much cysteine, an important amino acid for maintaining glutathione levels. Compared to colostrum alone, IgG 2000 DF delivers 15 times the level of transferrin and lactoferrin. These and other immunoproteins contained in IgG 2000 DF have demonstrated an ability to enhance immune function by directly boosting immunoglobulin levels in the gastrointestinal tract.* One daily dose of GI Protect provides over 2000 mg of IgG as well as 1000 mg of L-glutamine, which is added to support intestinal mucosal barrier integrity. GI Protect™ is naturally flavored and tastes great, making it easy to consume.* Supplement Facts below represent GI Protect™ Wild Cherry Supplement Facts Serving Size: 1 Scoop (10.5 g) Servings Per Container: 31 Amount Per Serving % Daily Value† Calories 35 Total Carbohydrate 6 2% Sugars 6 g Protein 2 g IgG 2000 DF™ (Serum-derived immunoglobulin concentrate providing IgG, IgA, IgM, IgE, IgD. Also provides transferrins, IGF-1, and TGFß-1) 2.5 g Immunoglobulin G (IgG)(from IgG 2000 DF™) 1.125 g L-Glutamine 1 g †Percent Daily Values are based on a 2,000 calorie diet. **Daily Value not established. All XYMOGEN® Formulas Meet or Exceed cGMP Quality Standards.

It was prescribed by Dr. Stephanie Cave, MD for leaky gut/malasorption. We buy it at her office. She runs lots of the tests described on this forum, her love is helping autistic kids but helps very ill patients from all over the world. She is big on supplements for healing. It is not considered a probiotic. I think she gives it mainly for gut issues.

I was cleaning out my pantry today and found this powder: G I Protect, DS Dr. Stephanie Cave gave us a couple of years ago that he quit taking. It was supposed to help malabsorption - leaky gut. My son has, so far, refused IVIG because he does not want donor antibodies. I began reading the label and this is what it says...GI Protect features XYMOGEN 's exclusive IGg 2000 dfwith the added benefit of the amino acid L Glutamine. IGg 2000 represents a breakthrough in immunoglobin supplementation.It is a highly concentrated non dairy source of serum derived immunoglobin antibodies and immunoproteins. I am in a hurry but will post a link to their site maybe some of you experienced parents can ck it and let me know what you think. ?I am dropping my container of at Drs today (rheumatologist, who is treating him for pandas) to see what he thinks. Thanks!!!! Kathy

Home News Features Strep throat and OCD are linked, Israeli researchers find Researchers at Tel Aviv University discover that the childhood exposure to the bacteria streptococcus A, which causes strep throat, can also damage brain function, leading to obsessive-compulsive disorder later on. By Dan Even | Jan.08, 2013 | 11:41 AM A common microbe that leads to childhood strep throat, long seen as an irritating but easily treatable virus, can have menacing long-term effects on brain function, Israeli researchers have discovered. The same germ that causes the sore-throat and fever-inducing sickness in childhood, the researchers found, can manifest in obsessive-compulsive disorder (OCD), an anxiety disorder marked by repeated and intrusive thoughts that can trigger hording, obsessions and intensely repetitive behavior. The results of the study, which was conducted on young rats, will pave the way for the development of new OCD treatments. Scientists have been examining the connection between OCD and childhood diseases, including throat infections, for more than 20 years. This most current study, however, led by Prof. Daphna Joel, head of the psychobiological department in the Laboratory of Behavioral Neuroscience in the Department of Psychology at Tel Aviv University, pinpointed the route that caused an outbreak of the disorder in rats. After exposure to streptococcus A, the microbe that causes strep throat, the rats displayed OCD behavior. In the study, which was conducted as part of the doctoral thesis of Lior Brimberg of the Department of Psychology, and in cooperation with Prof. Madeleine Cunningham of the University of Oklahoma, the rats were injected with streptococcus A microbes. They developed antibodies to the microbe, and were later injected with a substance that would simulate the transfer of antibodies to the brain. The researchers found that after penetrating the brain, the antibodies attached themselves to three regions in the brain, and were also connected to changes in the level of neurotransmitters in the brain. Compared to a control group of rats that had not been exposed to the microbe, the researchers noticed changes in the behavior of the rats in the research group. Among other things, they diagnosed disturbances in the rats' balance and coordination, which were reflected in difficulties in moving toward the cage on a board and in using their forelegs to pick up food served to them. They also observed standard obsessive behaviors among the rats in the research group: When you sprinkle water on rats' stomachs, they tend to groom themselves, but the rats in the research group engaged in self grooming for a prolonged period of time, in an obsessive manner. The findings were recently published in the journal Neuropsychopharmacology. The research was groundbreaking in its ability to highlight the link between a childhood illness and an adult disorder, Joel said. “It’s almost impossible to show how strep can lead to OCD in humans ― almost all of us, even very young children, have been exposed to the bacterium at one time or another," she said. "Therefore the description of the model in rats is of great significance." In a later experiment, the researchers noticed that the streptococcus antibodies became bound to dopamine D1 and D2 receptors in the brain, a finding that will likely aid in development of treatments for OCD. "We have yet to examine whether the antibodies cause the activation or the blocking of the receptors, but their effect on the receptors will help in the development of new medications for OCD, which is liable to be caused by the route described," Joel said. In the 1980s, the scientific community first realized that most sufferers of obsessive disorders, which are marked by prolonged hand washing and overly meticulous attention to cleanliness, had previously suffered from strep throat. They also found that the same group carried a high concentration of antibodies to the streptococcus A microbe in their blood. The phenomenon was later named PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus), which appears several weeks to three months after the strep throat. The phenomenon includes another disorder attributed to the infection, the appearance of tics. The research findings emphasize the importance of proper treatment of strep throat in children, with use of antibiotics in the case of a streptococcus A infection. Even more crucially, the researchers call on parents to be alert to the development of OCD in children after an acute sore throat. Joel implores parents to give their children a low dosage of antibiotics in addition to psychiatric medications if they suspect a disorder has developed as a result of strep throat. Researchers remain undecided on whether or not the OCD caused by strep throat will disappear with time or turn into a chronic condition, and as such have not yet ruled on whether or not antibiotic treatments should be for a limited time period or for a lifetime.

Mom and Dad both 29 at son's birth. Autoimmune issues on both sides in grandparents: Rheumatic Fever, Raynauds, Psoriasis, RA

I had switched from Probiotic Eleven, Natures Sunshine to Pearls. While on Pearls we saw an increase in tics. Took him off and tics have gone away for the most part.

Oh this is such good news! Praying he will continue to get better! This encourages me and I am sure others, too, to keep on going. Thanks!

It is also listed under the Neurology Topics for the conference. I say it is a good thing it is being discussed...may be some believer's there who will push for recognition of the illness.

So your doctor doesn't think probiotics are necessary with abx? This particular Dr. who is heading up DS case does not believe they are necessary. I checked with Chief of gastroenterology & hepatology at Tulane who also treated son and he said "probiotics are fine" So...although I have always been a believer in probiotics I have seen a drastic change for the better in stopping them. We may try them again and see what happens. Everything with this illenss seems to be a "wait and see" treatment. It makes it hard because no two cases are alike.

Lilly: I am sure with all supplements there are some that are considered better than others. I buy some things at Whole foods but most at Dr. Caves office because I know she is very particular about what she chooses to use. Here is the link to her website if you care to check it out: http://www.cypressintegrativemedicine.com/

We use Metagenics D3 5000 IU. High potency, Bioavailable Vit D Softgels easy to swallow! I order from Dr. here and they do ship. Dr. Stephanie Cave, if you need info pm me. I think they come in 10000 IU also

I had switched probiotics to the pearl brand. Shortly after this, our son started with tics which got worse. After several weeks I totally eliminated probiotics and within a few days tics were slowly stopping. It has been about 3 -4 weeks now and NO more tics! I told his Dr. and he thinks it was the probiotics. He (dr.) wasn't big on them anyway. I don't know if this is a problem for your child but thought I would share. Hope it gets better soon!

You are so right to keep him out of psych ward!!! Perhaps you can try to see a pediatric rheumatologist who treats autoimmune?

Our Dr. is a rheumatologist. He spent weeks researching Pandas/Pans and told me that he believes the reason most Drs. do not use immunosuppressants is that they are not really used to treating autoimmune illnesses. Because Pandas/PANS is considered autoimmune he chose to treat it as he would other autoimmune illnesses which is his specialty. He spoke with 2 other Drs. a neurologist and internist who instructs new interns and they all agreed this was the best treatment. One thing I have noted is that no two cases seem to be alike although there are similarities and treatments vary although there is consensus on IVIG. If the immune system is mistakenly attacking the brain then to suppress it seems like a good idea. All I know is we are in our 5th week of treatment with Cellcept, Prednisone and zithromax and we are seeing some positive movement. Definetely no negatives. Prior to starting treatment he put our son thru so many tests and sent us to specialits to make sure he was not overlooking anything. The Drs told us it would be a slow process but we are hopeful it will work. DS is 23 and has been suffering with this for 4 1/2yrs. Allergic to augmentin, penicillin, and keflex.

We tried it twice. The first time in Feb 2009 started at 100mg went up to 300mg. At 200 mg he said it helped stop the ocd thoughts. At 300mg, he was confused and forgetful. New Neuromed Dr helped us wean him off in Nov 2009. Withdrawal was tough! We tried it again in Feb. 2011 but did not help. I would reconsider it at a low dose. I have a friend whose daughter takes 50 mg for anxiety and it really helps. She has been on it for 2 yrs.

I just read your description of daughter and age. My son is non verbal also. He never was before this. I am going to pm you later and hope we can share. I am always curious as to symptoms in older kids. My son had just turned 19 when this started, but like you think he had it at a younger age. Thanks! Kathy N

Our Rheumatologist has our son, 23, on Cellcept, an immunosuppressant, as well as prednisone and zithromax. We have completed 5 weeks of this. Labs done every 2 weeks are great. Inflammation in liver has gone away. Seeing baby steps with pandas symptoms. I was nervous too when Dr. first brought this treatment up about 3 months ago, but so far it is fine. No negative side effects. The only thing is we were told it will take a long time to know if it works for ocd/pandas symptoms...perhaps a year.

This is for all the parents: Lend Me Your Hope (Author Unknown) Lend me your hope for a while, I seem to have mislaid mine. Lost and hopeless feelings accompany me daily, pain and confusion are my companions. I know not where to turn. Looking ahead to future times does not bring forth images of renewed hope. I see troubled times, pain-filled days, and more tragedy. Lend me your hope for a while, I seem to have mislaid mine. Hold my hand and hug me; listen to all my ramblings, recovery seems so far distant. The road to healing seems like a long and lonely one. Lend me your hope for a while, I seem to have mislaid mine. Stand by me, offer me your presence, your heart and your love. Acknowledge my pain, it is so real and ever present. I am overwhelmed with sad and conflicting thoughts. Lend me your hope for a while. A time will come when I will heal, and I will share my renewal, hope and love with others.

I think this is the post that I needed to read! I needed a kick in the pants to remind me that we are better than where we started three years ago on the pandas journey. The rages are almost non existant, but the fatigue is worse. We had a great musical concert at the middle school and he looked so handsome. He even attended his sister's musical concert, unheard of before now. I also need to remember that after each steroid burst, he has had almost full recovery (for a while). I called an advocate to work on our behalf with the insurance company (a little expensive, but eases so much stress) to pay for the previous IVIgs which were preapproved. I also faxed his bloodwork to the doc and have asked for a phone consult to ask about the thyroid. Sometimes action makes me feel better. LLM...Thank you so much for your words of encouragement. I have been at this for 4 1/2 years, but things are better than they were several years ago. We are still not in a great place but we are taking baby steps!

Mom's... I too allowed myself to go to the same place as many of you this weekend...To the worry corner where I allowed my thoughts and fears about my DS life to put me in a scary place. Until my husband reminded me that we must hold on to hope and to God's promises. It does us absolutely no good to allow our minds to envision our son's and daughters as a possible criminals, or worse. This is tough, it is the toughest thing I have ever gone thru, BUT..we have to keep believing our children will be well one day. KO's mom has heard this from me already. If we do not hold on to hope, then we have nothing. If we put our hope in Drs. and medicines, then we are let down when they do not work. My hope for my son's healing is in the promises of God. Yes we have great Drs. and yes he is on meds for the autoimmune illness, BUT ultimately we are trusting God to bring his healing. We must be so careful how we speak about our kids. I am so guilty of this, speaking ill about this situation. The reality is our words are very powerful. Let's all ban together and agree to speak LIFE and HEALING over our kids and see what happens. I had to turn the tv off. The media loves to place blame on mental illness. What about violence in the movies, tv shows, games...Mental illness is so misunderstood. And moms...PANDAS is not a mental illness! This is not the life any of us would have chosen, but we must encourage each other thru this. Praying for each of your kids! Kathy

I do not know if this is an option, but my Dr. suggested lavender tea when I could not sleep and melatonin did not work. The tea does work.

We had short term memory issues and it was really frightening. I would tell my ds something and 5 minutes later it was as if I never told him. That is getting better.

My son did not do well on probiotics either. Increased tics. We do without it. he does not have gut or yeast problems so fortunately we do not need it 911 and Kathy, are you giving abx currently? and if so, are you giving anything for the gut, ie fermented foods? Gosh, i would just be very cautious knowing now, what i do about the gut? how much worse were the tics on the probiotcs? Maybe you needed a different type? we are in a pretty decent place right now, but also on abx? But always thinking like most here, i wonder if something i am doing is holding us back from 100% Does anyone out there think the probiotics were causing some herx, displacing yeast or other parasites? not saying a herx was or wasn't a cause, just asking for thoughts. DS 23 has been taking 250mg zithromaz since Oct. 15. He is also on immunosuppressant - cellcept and prednisone. We have tried other probiotics, but he is not taking any right now and seems to be fine. tics were pretty bad and have stopped. but still holding on to ocd thoughts processes and avoidances. Making small strides. Began cellcept and prednisone nov. 12.