IVIG update along with abx/yeast & other issues

[pmoreno]

Hello all and Happy Holidays,

Haven't posted for a while because we went on a cruise for a week. It was nice getting away to warm weather, but Gaby has been going through a rough time. We did IVIG in Oct. and as many of you remember, great results for 2 weeks, then gradual decline back to pre-IVIG days. Things had actually improved again just before our trip with her falling asleep and staying asleep pretty consistently. There was a minimum of OCD behaviors - still not the concentration like before, but in general things were pretty good. We had an OAT test done by Great Plains and it showed a lot of yeast and other bad bacteria in her gut, so we consulted with the DAN doc in Florida and he recommended Flagyl for 10 days and nystatin 4 x a day for 14 days. In addition we started her on a high dose of probiotics (bought by recommendation of great plains nutritionist) 10 to 20 times more potent than found in most health food stores. Within a few days of this, fearfulness returned, OCD returned, sleeplessness returned. She would yell out (at least once or twice a day) "Something is bothering me" or "someone is being mean to me" and then she would scream hysterically and cry. This would usually last about 5 min. Prior to these meds, her stools looked pretty normal to me, but within a few days of starting them - they looked "fluffy" and orange. Almost the whole trip she would repeat various phrases over and over usually within a few minutes of each other. The most frequent one was "Am I loveable?", then "Does everyone like me and love me?", "Am I pretty?", "Do I have a kind and gentle heart?", and "I think the people don't know I'm Gaby". She would say these things so frequently that you couldn't carry on any kind of a conversation with her because she would interrupt constantly to repeat these phrases. She seems to have regressed by about 5 years in age. She's very baby-like.

 

My DAN doctor felt that the augmentin she has been on (which is something Dr. K likes to keep his kids on after IVIG) has been shown to cause some brain swelling and he feels that zith 500 mg. once weekly would be a better choice. (also says that it means the gut is only assaulted once weekly rather than daily) I have not started that yet, but am considering it. When she took zith 250 mg daily for a week, she became quite irritable, but DAN doc says could have been the red dye in the liquid. He plans to have the zith made by a compounding pharmacy in a pill form.

 

Now, here is what I'm really concerned about - what if we are just making things worse by trying all of these things. Just as a control, we had sent the urine off for testing to Great Plains for her neurotypical twin, Stefi, who has not been on abx for any reason and is just fine - never had behavioral issues, etc. and her test shows that she has an equally high amount of yeast and bad bacteria in her gut like Gaby - how is that possible? I certainly don't plan to give Stefi anything - I mean if it's not broke, why fix it? But it makes me wonder - did Gaby really need the meds we gave her? I know some people on this forum say that the probiotics have to be changed frequently to confuse the yeast and that if they stop giving them, their kids get worse - but that's just what I'm afraid of - that she will develop a dependency on these probiotics so that her gut can't work out the balance on its own anymore.

 

At this point I am still considering LDN patches (the DAN seems to think they're fairly effective for the OCD), also thinking about OPC 3 or something similar. Her neurotransmitter panel indicated that she was quite unbalanced and kavinace seems like it might be helpful, but I don't want to try too many things at once and the LDN might do just about the same thing that the kavinace would, with the added benefit of helping the immune system so I might start there.

 

Just when I think things are starting to make sense, it seems like they get pretty confusing again. Pat

[Dedee]

Gosh Pat, I have absolutely no suggestions for you, but I wanted to say how sorry I am that Gaby is having such a tough time. This has been such a hard battle. I do agree that when you add several things or change several things at once that it tends to confuse the issue. It's just always so hard for me to wait long enough to see if one thing is working because I want so badly to do something that works NOW! I haven't heard of the patches that you mentioned. What are they for and did you get them from your DAN? Praying that things settle down for you soon.

 

Dedee

[Caryn]

Pat,

I've never done an OAT test, so I can't comment on that specifically. But I wanted to forward you a link from Celiac.com. The info there is pretty eye opening about how Celiac (an autoimmune disorder) can develop when there is a presence of gut bacteria coupled with a vitamin D deficiency-- in the article there are links and references to the possibility that this could lead to other autoimmune disorders as well (maybe PANDAS?)

Anyway-- would be worth the read, I think.

More Evidence Links Gut Bacteria to Celiac Disease

 

I am certainly not suggesting Gaby has Celiac, but I wonder if you've had her tested for food intolerances? It is possible that the bacterial overgrowth has caused enzymatic dysfunction, thus leading to food intolerances which may improve when the gut flora is brought back into balance. (We originally had 17 allergies and now he can successfully eat all but wheat, gluten, and corn). We use enzymes almost daily and he also drinks Kefir. He is the healthiest of the bunch as far as his immunity goes these days.

 

We never used antibiotics, so I can't comment on that. We did use probiotics with our son and although the recovery was slow and long I am happy to say he has been consistently better for over 1 1/2 years now. We have not seen an inkling of an OCD like behavior in over a year. (In the beginning he used to change clothes six times a day, after each trip to the toilet, and used to have repeat ritual phrases too. He also have sleep disturbance issues as well and had periods of what I called "cucko" time-- bouncing off the walls hyper.) Now he just seems like a normal kid to us.

Caryn

[lss]

Hi Pat,

 

Sorry to hear that Gabby is not doing well. As you remember, my son had his urine and blood tested and I was told he was allergic to gluten and any kind of dairy, eggs, etc. Afterwards, I took the results to my regular peds dr. and she looked at them and told me to disregard them. She had already done blood work for celiac disease and it came back negative. She did suggest reintroducing the dairy and eggs back into my sons diet slowly.

 

As for the Kavanice, he was doing great until he was around a teen who is a strep carrier. His tics came back for about 2 weeks. Yesterday was the first day that they were actually much, much better. He is still having the night dreams, and waking up, but it seems its only in the first hour of his going to sleep. Once he wakes that first time, he is fine for the rest of the night.

 

I spoke with a dr. who was at Yale and is now in Chicago (not Dr. Leckman) who is a friend of my step-son-in-law, and the only suggestion he gave me was to NOT use any psych drugs. He did speak very highly of Dr. Leckman and said if it was his child going thru this he would either go to Yale or to Childrens Hospital in Philadelphia. He had not heard of Dr. K.

 

By the way, my son is still on the zithromax, and when I went to pick up his refill, they had given me the generic brand, which I never use, but I did notice that they are white, not red. I'm wondering if this would make a difference with you daughter and the dye?

 

I've noticed some people posting the dangers of having IVIG. Were you at all worried about it with Gabby? I'm thinking of going up to Chicago in March (am also still considering going to Melbourne, Fl to have it done there), but after reading these post, I'm begining to get worried.

 

My prayers are with you, please keep me posted.

 

Linda

[Char]

lss,

Hi, I was wondering if you could tell me a little bit more about how the Kavanice has worked for your child. You said it worked for tics? Any suggestions would be great to hear, I'm trying to help my sons tics. Thanks Char..

[pmoreno]

OK, I'm sorry I sounded a little panicky in my earlier post. I've since talked to my DAN and I have a better perspective. The odd behavior that Gaby had a couple days into our trip (along with the frequent fluffy stools) is as a result of the yeast - some die off and still some overgrowth (since the flagyl killed the clostridia and allowed more space for yeast to fill in). He is putting her on 5 days of diflucan which should take care of the yeast (the nystatin works, but in this case wasn't strong enough to deal with the extra yeast growth). We are switching to zithro 500 mg. once a week (pills made by a compounding pharmacy without the red dye). He recommends using nystatin only just the day before, the evening of, and the day after the zithro since it causes the most problems in the gut on the day that it is taken.

 

He suggests enzymes with meals because even if she doesn't have food allergies or gluten/cassein intolerance, the yeast will tend to cause some leaky gut syndrome. I'll continue that for a while until I'm sure that the yeast is pretty much under control. I don't have her on a complete gluten/cassein free diet, but I'm limiting those foods as much as I can (without it being a real burden) just in case -

 

He recommends l-carnitine supplementation because a lot of PANDAS kids and kids on the spectrum have mitochondrial dysfunction and this helps to correct that. (plus, her OAT test did show a deficiency in that)

 

He also recommends lauricidine (but this is a brand name and its fairly expensive). I ordered it through new beginnings nutritionals and they sell it by the name of monolaurin which is the same thing but cheaper. It is a fatty acid derived from coconut oil and lauric acid (also found in mother's breast milk) which has strong anti-viral, anti-bacterial and anti-fungal properties (that should kill 3 birds with one stone - and it's natural).

 

Finally, I'm starting the LDN (low dose naltrexone) which, if given in small doses (1 1/2 to max of 3 mg) nightly (a topical cream) applied 1 to 2 hrs. after they're asleep, it prompts the body to produce more endorphins which has a calming affect and helps with anxiety and OCD symptoms. It also gives support to the immune system.

 

I had mentioned that I haven't completely ruled out trying the kavinace in the future to help balance the neurotransmitter levels, but I don't want to add too much all at once and I want to see how all this works first. It should bring everything back to normal gradually, but if I get desperate, I might think about the kavinace which would work fairly quickly (within a few days). I'm just so wary of overloading her with too much .....stuff.

 

As far as the IVIG goes, it probably did help, but I'm seeing a lot of problems cropping up right now because of the prophylactic antibiotics and the behaviors of that are similar to PANDAS behaviors. Linda, you mentioned something about the dangers of IVIG - I guess I haven't read any of those posts - can you summarize for me? At this point, its done for Gaby - I won't repeat the IVIG. We've given what the doctor recommended should work and if it hasn't, then I don't see a reason to repeat it. I just hope that it has helped and that these other issues clear up with the yeast control. I am still worried about keeping her on long-term antibiotics because of that - but for the moment we'll try to do damage control. Pat

[Caryn]

As you remember, my son had his urine and blood tested and I was told he was allergic to gluten and any kind of dairy, eggs, etc. Afterwards, I took the results to my regular peds dr. and she looked at them and told me to disregard them. She had already done blood work for celiac disease and it came back negative. She did suggest reintroducing the dairy and eggs back into my sons diet slowly.

 

 

Linda,

Thought you might like to look at an article written by Dr. Scott Lewey, a gastroenterologist. He is much more liberal in his reasoning for proactively trying a gluten free diet despite a negative biopsy or blood test for celiac:

 

This article appeared in the Winter 2007 edition of Celiac.coms Scott-Free Newsletter.

 

Celiac.com 01/30/2007 - Gluten intolerance resulting in symptoms and illness similar to celiac disease without meeting diagnostic criteria for celiac disease is a new concept. This concept of non-celiac gluten sensitivity (NCGS) or gluten related disease (GRD) may be a new paradigm that is hard for some people to swallow, especially when I suggest that it affects as much as 10% to 30% of the population.

 

Gluten ingestion is an avoidable, treatable, and reversible cause of illness in many people. It is contributing to the rising epidemic of autoimmune diseases. Many resist these concepts finding them either unbelievable, unacceptable or both. I believe that their rejection is neither rational nor helpful. It may be reasonable to reject them for cultural or financial reasons though I don’t believe they can legitimately be rejected based on scientific grounds or experience.

 

Celiac disease is not rare. Celiac disease affects 1 in 100 people in the world. Yet the diagnosis of celiac disease is still frequently missed and/or delayed.

 

It is a common disease that is often undiagnosed or misdiagnosed. It may even be the most common autoimmune disorder. Though the risk is largely genetic, it is preventable by simply avoiding gluten. Autoimmune diseases associated with celiac disease may also be preventable by avoiding gluten.

 

When I was in medical school over twenty-five years ago, I was taught that celiac disease was rare. In residency we were shown photos of short, emaciated children with skinny limbs and pot-bellies. We were told that their medical history included symptoms of profuse, watery, floating, foul-smelling diarrhea, and iron deficiency anemia. The picture and story was burned into the hard drive of our brains, not necessarily because anyone believed we would see someone with celiac disease in our practice, but because celiac disease was considered rare and odd enough that it was a favorite board examination question. That image and story remains in the mind of most physicians, preventing them from seeing celiac disease in a much broader light.

 

When I entered subspecialty training in Gastroenterology, 13 years ago, specific blood tests for celiac disease were available but still new. We were beginning to order the blood test when classic symptoms of celiac disease were seen without an identifiable cause, or if we happened to sample the small intestine during endoscopy and classic Sprue changes were seen in the intestinal biopsy. celiac disease was still considered somewhat rare. We did not routinely biopsy the small intestine to screen for celiac disease, and genetic tests were not yet available.

 

It wasn’t until 2003 that Fasano’s landmark article reported Celiac disease affected 1 in 133 people in the U.S. Only recently has it been accepted that family members of people with celiac disease, those with digestive symptoms, osteoporosis, anemia, and certain neurological, skin or autoimmune disorders constitute high risk groups for celiac disease. They have an even higher risk of between 2% to 5%, though most physicians are unaware of these statistics. Every week, using the strict diagnostic criteria, I confirm 2-3 new cases of celiac disease. I also see 5-10 established celiac disease patients. However, for every identified celiac disease patient there are 3-10 who have clinical histories consistent with celiac disease, but who fail to meet the diagnostic criteria. Yet they respond to a gluten-free diet. Many have suggestive blood test results, biopsies and or gene patterns but some do not.

 

More than 90% of people proven to have celiac disease carry one or both of two white blood cell protein patterns or human leukocyte antigen (HLA) patterns HLA DQ2 and/or DQ8. However, so do 35-45% of the general U.S. population, especially those of Northern European ancestry. Yet celiac disease is present in only 1% of the same population. DQ2 or DQ8 are considered by some experts to be necessary though not sufficient to develop celiac disease. However, celiac disease without those two genes has been reported.

Other gluten related diseases including dermatitis herpetiformis, the neurological conditions of ataxia and peripheral neuropathy, and microscopic colitis have been described in DQ2 and DQ8 negative individuals. The DQ genetic patterns found in other gluten related diseases and associated with elevated stool antibody tests indicate that many more people are genetically at risk for gluten sensitivity. Furthermore, the response of numerous symptoms to gluten-free diet is not limited to people who are DQ2 or DQ8 positive.

 

Most celiac experts agree upon and feel comfortable advising people who meet the strict criteria for the diagnosis of celiac disease: they need to follow a life-long gluten-free diet. Controversy and confusion arises when the strict criteria are not met, yet either patient and/or doctor believe that gluten is the cause of their symptoms and illness.

 

Many alternative practitioners advise wheat-free, yeast-free diets, which are frequently met with favorable response to what is really a form of gluten-free diet. Similarly, the popularity and successes of low carbohydrate diets require adherence to a diet that has been credited with improvement of headaches, fatigue, bloating, musculoskeletal aches, and an increased general sense of well-being that is self-reported by many dieters. I believe this is because of the low gluten content. Gluten avoidance is clearly associated with improvement of many intestinal and extra-intestinal symptoms such as those listed above.

 

Many also stumble onto this association after initiating a gluten-free diet or wheat-free diet on the advice of friends or family members; dieticians, nutritionists, alternative or complementary practitioners; or after reading an article on the Internet.

 

Within the medical community, there seems to be an irrational resistance to a more widespread recommendation for gluten avoidance. Physicians who maintain that those who fail to meet strict criteria for diagnosis of celiac disease should not be told they have to follow a gluten-free diet will often acknowledge that many of these patients respond favorably to a gluten-free diet. Some, however, continue to insist that a gluten-free diet trial is unnecessary, unduly burdensome, or not scientifically proven to benefit those who do not have celiac disease. This position is taken despite the absence of evidence that a gluten-free diet is unhealthy or dangerous and much evidence supporting it as a healthy diet.

Those of us who have observed dramatic improvements, both personally and professionally, find such resistance to recommending a gluten-free diet to a broader group of people difficult to understand. Considering the potential dangers and limited benefits of the medications that we, as doctors, prescribe to patients for various symptoms, it really seems absurd to reject dietary treatments. Yet, it does not seem to cross most doctors’ minds to suggest something as safe and healthy as a gluten-free diet, let alone to, at least, test for celiac disease.

 

My personal journey into gluten related illness began when my physician wife was diagnosed with celiac disease. I had mentioned to her numerous times over several years that I thought she should be tested for celiac disease. After her second pregnancy she became progressively more ill experiencing, for the first time in her life, diarrhea, fatigue, and chronic neuropathy. An upper endoscopy revealed classic endoscopic findings. Celiac disease blood tests were elevated, and genetic testing confirmed she was DQ2 positive. This forever changed our lives and my practice. But the story doesn’t end there.

 

Having diagnosed myself with irritable bowel syndrome (IBS) and lactose intolerance in medical school, I had not considered gluten as a possible cause of my symptoms until my wife turned the table on me and said I should also be tested for celiac disease. My blood tests were not elevated but I was confirmed to also be DQ2 positive.

 

Having observed a good response to gluten-free diet in a few of my patients who had elevated stool gliadin antibody levels, I looked critically at the research behind this testing and spoke with Dr. Ken Fine before paying to have my entire family tested through Enterolab. Both my gliadin and tTG antibodies were elevated and I responded well to a gluten-free diet. I began recommending stool antibody and DQ genetic screening to patients who did not meet the strict criteria for celiac disease but appeared to have symptoms suggestive of gluten sensitivity. Contrary to some critics’ claims about the stool antibody tests, there are many people who do not have elevated levels. Almost everyone I have seen with elevated levels has noted improvement with gluten-free diet, including myself.

 

Not only did my “IBS” symptoms resolve and lactose tolerance dramatically improve, but my eyes were further opened to the spectrum of gluten related illness or symptoms. I was already aggressively looking for celiac disease in my patients but I began considering non-celiac gluten sensitivity (NCGS) or gluten related diseases (GRD) in all my patients. What I have found is that gluten is an extremely common but frequently missed cause of intestinal and non-intestinal symptoms. Dramatic improvements in symptoms and health can be observed in patients who try a gluten-free diet.

 

Since only a fraction of DQ2 or DQ8 positive individuals have or will eventually get celiac disease, does that mean gluten is safe to eat if you have those gene patterns? Even if you do not get celiac disease, does continuing to eat gluten put you at risk for other autoimmune diseases, especially ones linked to the high risk gene patterns? Why do some people with these patterns get celiac disease but most do not? Do some who do not have celiac disease experience symptoms from gluten that would improve with gluten-free diet? These questions need to be answered so that people can decide whether they want to risk that gluten is causing them to be ill, or is increasing their risk of celiac disease or other autoimmune diseases.

 

Added to my gluten-free diet, a daily diet of scientific articles on celiac and gluten related disease has revealed that there are many clues in the literature and research indicating the existence of non-celiac gluten sensitivity or a need to broaden our definition of celiac disease. Dr. Hadjivassiliou has called for a new paradigm. He advocates that we start thinking of gluten sensitivity not as an intestinal disease but a spectrum of multiple organ, gluten-related diseases. Mary Schluckebier, director of CSA, asks that physicians interested in this area work on forming and agreeing on new definitions for gluten related illness while pushing for more research and cooperation between medical researchers, food and agricultural scientists, dieticians, and food manufacturers.

 

Only those who look for NCGS and advise a gluten-free diet to those not meeting the strict criteria for celiac disease, are going to see the larger group of people who have a favorable response to a broader application of the gluten-free diet without further research. Those of us who are personally affected by gluten sensitivity or professionally involved in treating individuals with adverse reactions to gluten (or both) should support the research into the broader problem of gluten related illness. I believe that NCGS is real and will be validated in studies. Are you open to this concept and are you willing support more research in this area?

 

Dr. Scot Lewey is a physician who is specialty trained and board certified in the field of gastroenterology (diseases of the digestive system) who practices his specialty in Colorado. He is the physician advisor to the local celiac Sprue support group and is a published author and researcher who is developing a web based educational program for people suffering from food intolerances, www.thefooddoc.com

 

Copyright 2006 The Food Doc, LLC. All Rights Reserved.

 

Gluten Ataxia is a very real, research proven neurological disease that is directly related to non-celiac gluten intolerance. In time researchers may find many more neuro conditions that can be associated with NCGS. In our personal experience getting rid of gluten in our diets made a WORLD of difference for our son. Any child with a wheat allergy, in my opinion, should be given a trial gluten free diet to see if that wouldn't help resolve issues, as wheat avoidance is not the same as gluten avoidance. It can't hurt to try. It beats having to go to countless doctors every couple of months and paying heavy medical bills. We see our doctors for wellness visits now. That's about it. My son has been prescribed one antibiotic since changing his diet. He used to get 4 courses a year pretty much. He hasn't yet been absent from school this year with an illness. He used to miss up to a week at a time....

[pmoreno]

Started Gaby on diflucan around noon today to clear up the yeast. She has been screaming on and off at school today and when I called home at 8:30PM (I'm at work), my husband said that she tried to run out of the house without her coat and said she just wanted to die - just wanted to kill herself. I haven't seen this behavior since exactly one year ago when she had 1 -2 months of really scary behavior. Hoping that this is just a reaction to the yeast dying off - I've heard it could be like this. Hoping it's another full-fledged PANDAS episode starting up. Will keep you all posted. Pat

[pmoreno]

I kept Gaby home from school today since she was so disruptive there yesterday and I wanted to keep an eye on her to see what's going on. She spent most of the day (about every 15 minutes or so) asking if she was loveable and if I tried to interrupt her or distract her from that she would get upset and insist on having an answer. She frequently complained about spots in front of her eyes and tonight at bedtime she complained of her stomach feeling yucky. This yeast is a horrible thing. Today was day 2 on the diflucan to kill the yeast so I am hoping that in a day or 2 things will start turning around a little. We had a meeting at school yesterday with one of the special ed consultants for the district and they are going to give her an aid until the end of the school year, so that if she starts getting distressed (which has been coming on randomly lately - completely unpredictable), she can be taken out of the classroom so as not to upset the other kids.

 

On another note, while I was checking on the internet for supplements and other things related to yeast control, I came across some really interesting information on xylitol in the Wikipedia. It is a natural sweetener that not only is OK to use with yeast, but actually inactivates yeast, but what I found fascinating is that it mentioned in this article that kids who chew gum made with xylitol (particularly xylomax I think it was called) have been found to have fewer ear infections because it helps to kill some of the bacteria in the middle ear. You have to read it to get all the details - so any of you out there with kids that have chronic ear infections - check it out.

[pmoreno]

just received an e-mail from Dr. K yesterday which I thought I would copy & paste an excerpt that might be interesting to some of you - here goes:

 

PITAND as such (and as originally described) likely DOES NOT EXIST. More likely it's the "classic" PANDAS syndrome that is negative for GABS. To explain it a bit: once an autoimmune process is fully developed, ANY infective agent (bacteria other than GABS, viruses, Immunizations, etc.) can cause symptoms' recurrence. The reason for this is that (this is the newest information, that was not available at the time Gaby received her treatment) autoimmune reaction causes DEPOSITS of antibody-antigen complexes in the walls of parenchymal blood vessels of the brain (in PANDAS, blood vessels of the basal ganglia region!). These deposits ALTER the permeability of blood-brain barrier, thus allowing OTHER agents AND toxins to enter the basal ganglia and cause the damage.

[TiredMom]

just received an e-mail from Dr. K yesterday which I thought I would copy & paste an excerpt that might be interesting to some of you - here goes:

 

PITAND as such (and as originally described) likely DOES NOT EXIST. More likely it's the "classic" PANDAS syndrome that is negative for GABS. To explain it a bit: once an autoimmune process is fully developed, ANY infective agent (bacteria other than GABS, viruses, Immunizations, etc.) can cause symptoms' recurrence. The reason for this is that (this is the newest information, that was not available at the time Gaby received her treatment) autoimmune reaction causes DEPOSITS of antibody-antigen complexes in the walls of parenchymal blood vessels of the brain (in PANDAS, blood vessels of the basal ganglia region!). These deposits ALTER the permeability of blood-brain barrier, thus allowing OTHER agents AND toxins to enter the basal ganglia and cause the damage.

 

 

Hi Pat,

Thanks for posting this - this is VERY interesting to me and makes a lot of sense. The last 2 major "PANDAS" episodes for my daughter were caused by viruses. She's on 250 azith everyday, but this doesn't cover her for viruses. An immunologist I saw said the antivirals only protect against a slim margin of the viruses she's likely to get, so I do worry that she's wide open to viruses. We've put a halt on all further immunizations until who knows when....

Peggy

[colleenrn]

Peggy,

Have you tried monolaurin? It has anti viral and anti bacterial properties. I had great success when I used it with my daughter.

Colleen

[TiredMom]

Peggy,

Have you tried monolaurin? It has anti viral and anti bacterial properties. I had great success when I used it with my daughter.

Colleen

 

No, I have never heard of it. I googled it quick and saw it's natural antiviral derived from coconut oil? I will try to find more research on this. What source do you use, is this something you can get at whole foods? Thank in advance for any info you have. Thank you for posting this - I appreciate it!

Peggy

[colleenrn]

I buy mom from keycompany.com. It is a derivative of coconut oil. It comes in 300 mg and 600 mg. I use 600mg. I first gave it to her when she was about 9 and I gave 600 mg 2x/day. We rate her PANDAS on a scale from 1 to 10 (10 being the worst). After taking it for 2 weeks, she went from an 8 to a one. We continued that for about a year and stopped for awhile (honestly I don't rememberr why we stopped but it was not due to any side effects). I recently have her back on it, but with 4 kids and so many health issues, have not given it consistently. I plan on upping it to twice a day and trying to be consistent about giving it to her. It is a capsule with powder. I need to find out if it is safe to open the capsule and dump the powder into a liquid as I really want to tey it with my 5 and 7 year old sons (almost 6 and 8).

Colleen

[Betty04]

just received an e-mail from Dr. K yesterday which I thought I would copy & paste an excerpt that might be interesting to some of you - here goes:

 

PITAND as such (and as originally described) likely DOES NOT EXIST. More likely it's the "classic" PANDAS syndrome that is negative for GABS. To explain it a bit: once an autoimmune process is fully developed, ANY infective agent (bacteria other than GABS, viruses, Immunizations, etc.) can cause symptoms' recurrence. The reason for this is that (this is the newest information, that was not available at the time Gaby received her treatment) autoimmune reaction causes DEPOSITS of antibody-antigen complexes in the walls of parenchymal blood vessels of the brain (in PANDAS, blood vessels of the basal ganglia region!). These deposits ALTER the permeability of blood-brain barrier, thus allowing OTHER agents AND toxins to enter the basal ganglia and cause the damage.

 

 

Thanks so much for posting this. It is very interesting! Did Dr K explain the mechanism in which IVIG would address the altered permeability of the blood-brain barrier?