HAVE TO READ THIS - Rages, itching, yeast, etc.

[pmoreno]

As many of you may already know, 70% of the immune system is housed in the GUT. If there is any problem with digestion, it throws off how the body responds to viruses, yeast overgrowth, etc. I believe that my daughter's PANDAS was helped tremendously by IVIG back in October, but she eventually started having behavioral problems again and a lot of itching, rages, inappropriate laughing, seeing dots, spots and so on. It was NOT the same behavior that we saw before she had the IVIG. She was on antibiotics for about 4 months (first augmentin, then zithro). I think this really threw things off in her GUT. We tried a few things like diflucan, flagyl and nystatin, but the itching continued and the rages. Apparently if you kill the yeast, you get an overgrowth of clostridia, so these things take turns causing problems and then when you treat them, they get a die-off reaction which can look almost the same as when they're having yeast or clostridia. I did see some small improvement over time with using S. bulardii twice daily and in addition a green powder called essential greens by mother necessity (contain multiple probiotics, enzymes, chlorella and concentrated greens). But what really did the trick is when I started giving kefir. Forget yogurt - the bacteria only stays in the GUT for a few days and then its gone unless you eat more yogurt. Kefir actually populates the GUT with good bacteria that will stay there (you have to take it for a while - a few weeks at least - but why stop, it's really healthy) I started out giving young coconut kefir (google it to see how to make it). It tastes awful, but you can mix it with any other juice to kill the flavor. Start with 2 tablespoons and work up to 1/4 cup twice daily according to the recommendations - we haven't even gotten up to that much and have seen wonderful results. In addition I started her on goat milk kefir. Anybody with sensitivity to milk products need not worry - the goat milk kefir breaks down the lactose & the proteins. So by giving her both, I'm sure she's getting a much broader exposure to various good bacteria. Anyway, I have to say that after MONTHS of itching (it went from anal itching to vaginal itching to inner ear itching to eye itching) that she has not complained of ANY itching in several days, and simultaneously has had no rages, pleasant mood, able to sit and do her school work and only made 2 or 3 comments that could be considered OCD-like, but she snapped out of it fairly quickly.

 

From what I've read about kefir, it contains bacteria and enzymes which help with digestion and with immune support and is many more times effective than probiotics that you buy in capsule form. So, anyone whose children are having problems with yeast issues or viral issues, give this a try. Pat

[Caryn]

Pat,

 

I agree 110%.

 

We've been doing kefir daily for almost 1 1/2 yrs now. We add it to his breakfast 'shake' which includes the B-complex, zinc, mag, and fresh fruits. He drinks that down with his fish oil supps and borage oil caps.

 

We've been on a specific diet and supp plan for over 2 years now and our son has NO symptoms of anything, finally. No tics, no ADHD, no OCD-like tendancies. He is pleasant, happy, has friends at school, sleeps well, plays sports, is enjoying his childhood.

 

I think-- and I've yet to research this so I have no proof--

I think the probiotics are helping to eliminate the many allergies he originally had. His diet is much more varied now than it was when he was tested with 17 allergies. We also do digestive enzymes (no longer daily but when he eats rich foods-- hard to digest), and we still keep him on a low sugar diet (honey in lieu of refined sugar, sometimes using evaporated cane juice.) It is a lifestyle change, really. We all eat differently now because of this experience.

 

I don't have testing to prove that he had either candida or clostridia. I can attest to the fact that his symptoms did seem to worsen before they got better. But anything beyond that would be circumstantial and leading. We deal with allergies here and not PANDAS (negative on the titers), but I agree that when the gut was healed my son's symptoms stopped.

 

I recently (since December) started vit. D supps and noticed a huge difference in him this winter as far as overall immune health. He did not get sick at all this winter. (First time since he was born-- he was a chronically infected kid-- ear infections, croup, sinus infections, eczema, etc.....)

 

Thanks for sharing, Pat.

[pmoreno]

Pat,

 

I agree 110%.

 

We've been doing kefir daily for almost 1 1/2 yrs now. We add it to his breakfast 'shake' which includes the B-complex, zinc, mag, and fresh fruits. He drinks that down with his fish oil supps and borage oil caps.

 

We've been on a specific diet and supp plan for over 2 years now and our son has NO symptoms of anything, finally. No tics, no ADHD, no OCD-like tendancies. He is pleasant, happy, has friends at school, sleeps well, plays sports, is enjoying his childhood.

 

I think-- and I've yet to research this so I have no proof--

I think the probiotics are helping to eliminate the many allergies he originally had. His diet is much more varied now than it was when he was tested with 17 allergies. We also do digestive enzymes (no longer daily but when he eats rich foods-- hard to digest), and we still keep him on a low sugar diet (honey in lieu of refined sugar, sometimes using evaporated cane juice.) It is a lifestyle change, really. We all eat differently now because of this experience.

 

I don't have testing to prove that he had either candida or clostridia. I can attest to the fact that his symptoms did seem to worsen before they got better. But anything beyond that would be circumstantial and leading. We deal with allergies here and not PANDAS (negative on the titers), but I agree that when the gut was healed my son's symptoms stopped.

 

I recently (since December) started vit. D supps and noticed a huge difference in him this winter as far as overall immune health. He did not get sick at all this winter. (First time since he was born-- he was a chronically infected kid-- ear infections, croup, sinus infections, eczema, etc.....)

 

Thanks for sharing, Pat.

 

 

Caryn:

 

Glad to hear that you've had similar success. I forgot to mention the other supplements that she's on because it is fair to give credit to them, although I may wean her off of them after she's had the kefir for about 6 months because I believe that by then, that's all she will need (from what I've read). Particularly if you use a really good kefir with potent strains of bacteria. So far I have found that there are none better than the (ugh!) coconut water kefir or the goat milk kefir. The goat milk kefir does come in a very tasty blueberry/pomegranate flavor from Whole Foods. Just curious - what kind of kefir are you using?

 

The supplements are: vitamin B complex, extra vitamin B6, vitamin E (200), zinc, cal/mag/butyrate (the best combination comes from New Beginnings Nutritionals and I was giving this mainly to heal her gut. I believe that after all the yeast issues - unavoidable due to the antibiotics - we ended up with leaky gut syndrome and with that comes all the food allergies that they never had before., fish oil, the s.boulardii at bedtime, methionine on an empty stomach in the morning and at night (her levels were pretty low - which is not surprising for someone with a dysfunctional immune system). Also she takes vit B12 shots (just under the skin - feels like a mosquito bite and she doesn't mind) along with methyl-folinic acid (not plain folic acid because this doesn't allow for proper absorption of the vitB12) This combination is done for poor methylation which is also typical of kids with a dysregulated immune system. I will onlyneed do tha injections for 6 mos.

 

I have to say that like your child, my children did not get very sick either this year - I believe it may be because at the onset of any sniffle or stomach pains, headache, I gave them a teaspoon of vitamin C powder (equivalent to 5,000 mg) mixed in a small amount of orange juice (and then chased with more of plain oj because the C is very bitter). By the following day they would always be symptom free. I've done the same for myself and I haven't had one cold or flu this year (unusual for me). I took Gaby off the antibiotics back in January and I worried a little because of all the odd symptoms, but now this confirms what I suspected - the PANDAS was pretty much resolved by the IVIG and the other symptoms I saw were associated with the gut dysbiosis. (which has taken a long time to resolve - you're so right when you say they get worse before better). I just can't believe what a positive change I've seen in her and all that after a nightmare of rages and itching. Oh, as far as diet goes - this is not always easy - especially when they have siblings who indulge or go to events, but I have compromised on that. I do no added sugar, use agave syrup (better than honey) to sweeten anything, avoid all dairy except goat milk kefir, don't use much gluten (maybe a little - I let her have a whole grain bread - like 12 grain sometimes) and that's about it. I know that some kids whose guts have been more seriously affected by the leaky gut syndrome need to be a little stricter on the diet, but I believe that after you do a couple of months of cal/mag/butyrate, you can patch up the holes and then with the kefir to prevent new holes from forming, it may not be necessary to be that strict with the diet (just my thought).

 

Hope more of you can benefit from the kefir. Pat

[Caryn]

what kind of kefir are you using?

 

We used to use goat milk kefir exclusively but our son never tested intolerant to cow's milk so now we are on the cheaper cow-based stuff. We still avoid cow milk altogether and only give him goat milk to drink or bake with goat milk/kefir, whichever is available (as the goat milk is easier to digest). I bought a yogurt maker a while back and just used the Meyenberg goat milk containers to make the kefir in. This saved us time as Whole foods is about 40 minute drive. We only removed cow based dairy products for leaky gut symptoms (all the literature tells you to do that until the gut is healed) and have since reintroduced it very successfully again (after about a year off of it. We used to do heavy mega vitamins, especially B6, to stop the ticcing symptoms and OCD-like symptoms (he was never officially dxd OCD, just had some minor symptoms of it). This was when he was very reactive and was struggling with the leaky gut issues.

 

Now we do a B-complex which includes elevated b6, b5, and decent amount of b12. We do zinc, and mag w/o the calcium (due to dx for pyroluria). The calcium is in his diet now with the dairy, so I am satisfied with that.

We have recently started NAC too. We stop the D in the spring and summer months and will pick it up again in November. We do Borage oil and vit. E (regular RDA dose). I agree on the methylation issues. I also agree that all these things do repair over a very long, slow healing process when the internal mechanisms are dealt with.

We never did the b12 shots, but I have read that they are necessary for some with tic disorders.

 

 

I have to say that like your child, my children did not get very sick either this year - I believe it may be because at the onset of any sniffle or stomach pains, headache, I gave them a teaspoon of vitamin C powder (equivalent to 5,000 mg) mixed in a small amount of orange juice (and then chased with more of plain oj because the C is very bitter).

 

I avoid C like the plague due to Tigger's corn allergy. Even the supposed corn free ones seemed to cause tics a few months back. Now that he is much better I may try C again. I just feed him foods high in C regularly, but I may try that next time he gets sniffly.

 

You mentioned about a low gluten diet-- I am sure that gluten intolerance isn't the case in all kids with tics/Pandas. Leaky gut, however, most certainly could be. It seems like anyone who tests for it finds dysbiosis, whatever the cause may be.

 

BTW, your theory about kefir may be true. Recent studies have linked one particular strain of bacteria to helping heal damage caused by gluten in celiacs as well as preventing future damage when the test subjects ingest gluten. I'm not in a rush to introduce gluten again with my son, but it is nice to know that there is a kefir available to help him minimize the damage should he fall off the bandwagon and cheat sometime. We are committed to Kefir for life too!

[Suzan]

You mentioned about a low gluten diet-- I am sure that gluten intolerance isn't the case in all kids with tics/Pandas. Leaky gut, however, most certainly could be. It seems like anyone who tests for it finds dysbiosis, whatever the cause may be.

 

My children are on gluten free diets, one because she is highly gluten intolerant and the other as a trial to see if it would help even though her test results were negative. She has been greatly helped by going gluten free. I have read that gluten causes inflamation in the body even if you are not gluten intolerent or allergic. I imagine that might help with symptoms for PANDAS patients if true. Anyway, I just thought I'd mention what I've heard.

 

Susan

[Suzan]

As many of you may already know, 70% of the immune system is housed in the GUT. If there is any problem with digestion, it throws off how the body responds to viruses, yeast overgrowth, etc. I believe that my daughter's PANDAS was helped tremendously by IVIG back in October, but she eventually started having behavioral problems again and a lot of itching, rages, inappropriate laughing, seeing dots, spots and so on. It was NOT the same behavior that we saw before she had the IVIG. She was on antibiotics for about 4 months (first augmentin, then zithro). I think this really threw things off in her GUT. We tried a few things like diflucan, flagyl and nystatin, but the itching continued and the rages. Apparently if you kill the yeast, you get an overgrowth of clostridia, so these things take turns causing problems and then when you treat them, they get a die-off reaction which can look almost the same as when they're having yeast or clostridia. I did see some small improvement over time with using S. bulardii twice daily and in addition a green powder called essential greens by mother necessity (contain multiple probiotics, enzymes, chlorella and concentrated greens). But what really did the trick is when I started giving kefir. Forget yogurt - the bacteria only stays in the GUT for a few days and then its gone unless you eat more yogurt. Kefir actually populates the GUT with good bacteria that will stay there (you have to take it for a while - a few weeks at least - but why stop, it's really healthy) I started out giving young coconut kefir (google it to see how to make it). It tastes awful, but you can mix it with any other juice to kill the flavor. Start with 2 tablespoons and work up to 1/4 cup twice daily according to the recommendations - we haven't even gotten up to that much and have seen wonderful results. In addition I started her on goat milk kefir. Anybody with sensitivity to milk products need not worry - the goat milk kefir breaks down the lactose & the proteins. So by giving her both, I'm sure she's getting a much broader exposure to various good bacteria. Anyway, I have to say that after MONTHS of itching (it went from anal itching to vaginal itching to inner ear itching to eye itching) that she has not complained of ANY itching in several days, and simultaneously has had no rages, pleasant mood, able to sit and do her school work and only made 2 or 3 comments that could be considered OCD-like, but she snapped out of it fairly quickly.

 

From what I've read about kefir, it contains bacteria and enzymes which help with digestion and with immune support and is many more times effective than probiotics that you buy in capsule form. So, anyone whose children are having problems with yeast issues or viral issues, give this a try. Pat

 

Pat, so glad you have seen such great improvement with Kefir! I think I will check it out too. My 7 yr old had horrble itching as you describe and her's was much improved by going gluten free. Your post caught my eye though because of the symptoms you describe... "but she eventually started having behavioral problems again and a lot of itching, rages, inappropriate laughing, seeing dots, spots and so on." I'm interested in hearing more of your daughter's symptoms since they sound so similar to my dd who I am working on getting tested for pandas. She is highly emotional right now with inappropriate laughing too and she says she sees dots, snowflakes and flashes of light. This is new for us.

 

Susan

[P_Mom]

Pat,

 

Glad to hear your daughter is doing better!!

 

Hey, one question. I also got Essential Greens a while back...it is a great product. How in the world do you get you daughter to take it...that stuff is so strong, I can't get my kids to take it...I don't blame them....I take it now myself and it is a struggle!

 

Kelly

 

P.s. Does your daughter still get symptoms when sick?

[pmoreno]

Pat,

 

Glad to hear your daughter is doing better!!

 

Hey, one question. I also got Essential Greens a while back...it is a great product. How in the world do you get you daughter to take it...that stuff is so strong, I can't get my kids to take it...I don't blame them....I take it now myself and it is a struggle!

 

Kelly

 

P.s. Does your daughter still get symptoms when sick

 

 

 

Luckily, she has not gotten sick - since I've been giving Vit C in mega dose (5,000 mg) powder at the onset of any sniffle or headache, she actually hasn't gotten sick. About the essential greens - yes, they are strong - either mix them with a smoothie or another juice (but in a small amount so that she can guzzle it quickly - then chase it with something good tasting, or another thing that works is dilute in water and add some agave syrup which is quite sweet so you don't need much, but its better than honey. So it ends up tasting a little like a sweetened green tea.

[pmoreno]

As many of you may already know, 70% of the immune system is housed in the GUT. If there is any problem with digestion, it throws off how the body responds to viruses, yeast overgrowth, etc. I believe that my daughter's PANDAS was helped tremendously by IVIG back in October, but she eventually started having behavioral problems again and a lot of itching, rages, inappropriate laughing, seeing dots, spots and so on. It was NOT the same behavior that we saw before she had the IVIG. She was on antibiotics for about 4 months (first augmentin, then zithro). I think this really threw things off in her GUT. We tried a few things like diflucan, flagyl and nystatin, but the itching continued and the rages. Apparently if you kill the yeast, you get an overgrowth of clostridia, so these things take turns causing problems and then when you treat them, they get a die-off reaction which can look almost the same as when they're having yeast or clostridia. I did see some small improvement over time with using S. bulardii twice daily and in addition a green powder called essential greens by mother necessity (contain multiple probiotics, enzymes, chlorella and concentrated greens). But what really did the trick is when I started giving kefir. Forget yogurt - the bacteria only stays in the GUT for a few days and then its gone unless you eat more yogurt. Kefir actually populates the GUT with good bacteria that will stay there (you have to take it for a while - a few weeks at least - but why stop, it's really healthy) I started out giving young coconut kefir (google it to see how to make it). It tastes awful, but you can mix it with any other juice to kill the flavor. Start with 2 tablespoons and work up to 1/4 cup twice daily according to the recommendations - we haven't even gotten up to that much and have seen wonderful results. In addition I started her on goat milk kefir. Anybody with sensitivity to milk products need not worry - the goat milk kefir breaks down the lactose & the proteins. So by giving her both, I'm sure she's getting a much broader exposure to various good bacteria. Anyway, I have to say that after MONTHS of itching (it went from anal itching to vaginal itching to inner ear itching to eye itching) that she has not complained of ANY itching in several days, and simultaneously has had no rages, pleasant mood, able to sit and do her school work and only made 2 or 3 comments that could be considered OCD-like, but she snapped out of it fairly quickly.

 

From what I've read about kefir, it contains bacteria and enzymes which help with digestion and with immune support and is many more times effective than probiotics that you buy in capsule form. So, anyone whose children are having problems with yeast issues or viral issues, give this a try. Pat

 

Pat, so glad you have seen such great improvement with Kefir! I think I will check it out too. My 7 yr old had horrble itching as you describe and her's was much improved by going gluten free. Your post caught my eye though because of the symptoms you describe... "but she eventually started having behavioral problems again and a lot of itching, rages, inappropriate laughing, seeing dots, spots and so on." I'm interested in hearing more of your daughter's symptoms since they sound so similar to my dd who I am working on getting tested for pandas. She is highly emotional right now with inappropriate laughing too and she says she sees dots, snowflakes and flashes of light. This is new for us.

 

Susan

 

 

Susan,

while you're in the process of getting her tested, see if you can get a microbial oat test done by Great Plains Laboratories (you need a doctor's precription). the micro will probably give you enough information to know whether there's an overgrowth of yeast or clostridia (or other organisms). I think it costs roughly $140 maybe (you can check the price list on the web site). There is another test that is much more comprehensive and costs about twice that much. I had that one done on my dd initially, but then do repeat micro tests every now and then to see how things are going. If there is some type of dysbiosis going on, then you might want to start by clearing that up (with the goat milk kefir for instance) before you move on to other things - who knows - it might be all you need to do. Let's hope.

[Suzan]

Susan,

while you're in the process of getting her tested, see if you can get a microbial oat test done by Great Plains Laboratories (you need a doctor's precription). the micro will probably give you enough information to know whether there's an overgrowth of yeast or clostridia (or other organisms). I think it costs roughly $140 maybe (you can check the price list on the web site). There is another test that is much more comprehensive and costs about twice that much. I had that one done on my dd initially, but then do repeat micro tests every now and then to see how things are going. If there is some type of dysbiosis going on, then you might want to start by clearing that up (with the goat milk kefir for instance) before you move on to other things - who knows - it might be all you need to do. Let's hope.

 

Oh yes, we've done the OAT. She's had horrible yeast problems and has been on antifungal in the past. Her last OAT did not grow (they say that happens sometimes, just luck of the draw). But she is on probiotics and caprylic acid to help control her yeast now. Although I figure we still have more to control. She had chronic sinus and ear infections as a younger child and was always on antibiotics it seemed.

 

She is allergic to dairy so I have been reading up on the coconut or goats milk kefir, interesting.....

 

Susan

[pmoreno]

Just to update everyone - it has been 6 days of bliss around here (with just one minor episode of irritability on Thursday evening) - other than that - no complaints of itching - lots of good moods - no repetitive questions or intrusive thoughts, no hitting, kicking, yelling or other aggressive or OCD behavior. I don't want to be premature about this, but this is the longest run of normal behavior that I can remember in a long time, and I'm sure it has to do with getting her yeast & other pathogens under control in her GUT with the probiotics and kefir. We're on a roll and I hope we stay there. Pat

[EAMom]

I'm keeping my fingers crossed that things continue to go well!

 

I'll play the devil's advocate though...could it be that the IVIG just took this long to "kick in"? I've heard that IVIG can take up to a year to take effect.

 

But whatever the case...I'd keep up the Kefir! (I wish I could get my kids to drink it!)

[T_Mom]

Great Pat--That is good news to hear! We have also used alot of Kefir, and other probiotics which I think could only help the healing process. Great to hear--

T.Mom

[michele]

Yeh! I am so happy for you Pat! This has been a long time coming! Do you mind listing the exact brand names you are using in probiotics, kefir and omega 3's. I want to go shopping for them. I want to get the right things.

 

Michele

Just to update everyone - it has been 6 days of bliss around here (with just one minor episode of irritability on Thursday evening) - other than that - no complaints of itching - lots of good moods - no repetitive questions or intrusive thoughts, no hitting, kicking, yelling or other aggressive or OCD behavior. I don't want to be premature about this, but this is the longest run of normal behavior that I can remember in a long time, and I'm sure it has to do with getting her yeast & other pathogens under control in her GUT with the probiotics and kefir. We're on a roll and I hope we stay there. Pat

[pmoreno]

I'm keeping my fingers crossed that things continue to go well!

 

I'll play the devil's advocate though...could it be that the IVIG just took this long to "kick in"? I've heard that IVIG can take up to a year to take effect.

 

But whatever the case...I'd keep up the Kefir! (I wish I could get my kids to drink it!)

 

 

EAMom - As far as the IVIG taking a year to take effect, I'm not so sure about that. You may remember that when she had it in October she had great results right away which lasted for at least a month. IVIG has a short half life. It only stays around in the body for about a month. So the immediate effects are that it immediately settles down the over-active immune system and cuts down on the inflammation. That's why they recommend doing it only for those kids who are in a current crisis because you will see results almost right away. What takes time is for the body to re-regulate the immune system and this sometimes happens spontaneously (as long as there are no new episodes which might require more IVIG). What takes so long is for all the neurons that have been damaged from the episode to heal and regenerate. That usually takes months up to a year. Sometimes the IVIG actually helps to re-regulate the immune system (that's what we're always hoping for), and sometimes it is just the body naturally getting to that point. What we have to do in the meantime is help the body to reach that point by giving those supplements that stimulate a healthy immune system. The glitches that we encounter along the way are often the yeast overgrowth and then die-off reactions (when they're treated) that we get from the antibiotics (and even if they're not on antibiotics, they often get yeast overgrowth just because their immune system is compromised). The behaviors that they have from yeast, or die-off so closely resemble the original pandas behaviors that it's hard to know whether you're having a new episode or what. That's the problem that I have had after IVIG - panicking every time there was a new onset of behaviors. After all this time and many organic acid tests, I have figured out what's really going on. I don't believe she's had any new episodes since the IVIG, she has just had a lot of yeast, clostridia, etc. Now that we're getting that under control with the probiotics & kefir, we're seeing some huge improvements. I'm praying that we have no new episodes in the future. Pat