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Update on Gaby-Good News


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Hello all,

Haven't posted for quite some time - we were out of the country most of the summer. For those who don't know us - Gaby was 7 1/2 when she had a virus (turned into an initial herpes simplex outbreak which then repeated itself almost every month thereafter).She developed typical PANDAS like symptoms of OCD, tics, sleep disorder, extreme anxiety, paranoia, visual hallucinations, decline in handwriting, math skills, reading, social skills, ability to dress herself, ate with fingers instead of fork (just to name a few). Her behavior had improved the summer before last for a few months, but with another viral outbreak, started all over again. We had IVIG last October which got rid of the tics, but all other behaviors hung on with January, February & March being the worst months. In April we started her on Kefir and she is still drinking it daily. It has now been over 5 months without a herpes outbreak (unbelievable). Last month I stopped all the vitamins & supplements that we had been doing for at least a year. The only other thing I do besides the kefir (since it has really boosted her immune system) is that if I detect the slightest sniffle I give a teaspoon of vitamin C powder diluted in small amt. of OJ (equivalent to about 5,000 mg) & by the next day she is usually fine (sometimes I have to give a second or third dose, but rarely). If she complains about a stomach ache or I suspect any kind of infection, I give 3 or 4 drops of oregano oil mixed with a tablespoon of any other oil (fish oil or olive oil - just to keep the oil of oregano from burning the throat - its strong).

 

Gaby is about 98% herself now. No obsessive thoughts or questions. The only thing that remains is that she still gets a little more upset when provoked by her twin than she used to, but it's manageable.

 

Since I can't cite any research studies that prove this - I can only say that since Gaby started drinking the goat milk kefir 5 months ago, she has not been sick and with that her behavior has gotten better & better. I can't say that she won't ever have this again - because who knows? I do know that this is the longest that she's gone since starting the symptoms of being close to her "normal" self. I tend to think that if the good microflora in the intestines are plentiful, this keeps the immune system functioning well - might help to ward off strep or viruses.

 

Anyway, we're on a roll so let's keep our fingers crossed. Pat

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glad to hear your daughter is doing so well. do i understand correctly that she didn't have strep but a virus but similar symptoms to PANDAS? i've heard about oil or oregano but haven't used it. i've heard it's very strong and hard to get kids to take it. can you mix it with anything else? is it only for short-term use?

thanks,

kathy

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I am so happy for you! It is so great to hear good news!

 

Questions:

 

How old is your daughter now?

 

I started buying lifeway kefir (not goats milk), but I have not been giving it to her regularly. Now that school is in session, I want to start. How much per day did you give your daughter/ how much does she weigh? I have no idea how much my dd should have. Do you think the regular kefir would be as beneficial as the goats milk? Where do you get it? What brand?

 

Thank you!!

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So nice to hear good news. Congrats!! Hope she continues to do well.

 

Deanna

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Thanks for the update Pat. I was just wondering about you the other day! :)

 

So maybe there is something really good about the combination of IVIG and kefir? Now someone just has to tell me how to get my dd to drink that stuff! She is too picky. She would like to be a vegetarian, but isn't totally (probably b/c I'm not keen on that plan). (Not while she's growing and with her pickiness and hx of anorexia.) Plus, she doesn't even like most vegatables. (I'm running out of food groups here.)

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Pat - Things post-ivig have been very good for us as well. We know that pandas is a brain inflammation issue. Neurologists/brain surgeons have told me expect at least one year post recovery. I think kefir is great to do. But it no cure. Dr. Cunningham's tests show that there is an encephalytic reaction due to strep. And to smash it down with antibiotics and ivig are important to do.

 

My son had to do a smaller dose of IVIG in May (just 3 months ago) - to iron at the residual issues. WHY? because I did a thorough immuno work up and saw low and behold!! he had a IGG subclass deficiency (low subclass 1 and 3). It makes these kids have a harder to time to repair post-ivig. NOT ALL PANDAS KIDS HAVE A SUB-CLASS DEFICIENCY - but if they do - it is entirely reasonable to do another ivig.

 

My biggest frustration and hope is that kids with PANDAS-like symptoms get decent immunological workups. That other infections, like herpes, re-curring ear infections, URI's -- are paid attention to by doctors. Pat, your daughter and my son, did not have decent blood panels done before IVIG so it is hard to tell where the "cure" is coming from.

 

I for one will keep my son on proph abx just as in the Rheumatic Fever kids. Because he absolutely had a reaction from strep that knocked him to his knees. I don't think that was ever clear in your daughter's case with regards to strep. But for kids like mine -- I will not subject him to that illness again. Clearly his autoimmune system is rebounding now - he is robust and healthy and happy and I don't see pandas either. These kids need a helping hand to get them "out of the wood" and scientists are working very hard to prove this.

 

Thank you Buster and EAMom as always for the studies you find on pandas. Diana

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Thank you for your kind comments. I will try to answer all questions in one post. I usually give Gaby one large glass of kefir (mixed with juice, fruit, honey-in a blender) in the morning. Sometimes a smaller one at night. She weighs about 70 lbs. I used to have her stay away from cow's milk completely - she used to have some stomach pains after drinking it. Now, after 5 months of the kefir, I believe it has helped to break down the casein in cow's milk so when she does drink it (which is not often), she doesn't complain of a stomach ache.

 

Someone asked me about the oil of oregano - yes it is strong. If you take 3 drops and mix it with a tablespoon of fish oil, they can usually tolerate it, especially if they immediately chase it with some good tasting juice. I only give it if there are any symptoms of a cold or flu starting & I would only give it for 1 or 2 days.

 

Diana, if you are reading this, I wanted to answer your post. I think most of the kids here have some form of encephalopathy. The difference is that some (like your son, I think) are true PANDAS reacting to strep only & truly needing the antibiotics while recovering with IVIG or other treatments. Other children (like my daughter) react to viruses only and some children react to both.

Regardless, they all have the same symptoms - sleep disturbances, fears, OCD, rages, tics, sudden deterioration in academic & social skills, etc. When strep is the only trigger, the good news is that usually the antibiotics will hold symptoms at bay - with viruses being the trigger - antibiotics won't help & you're always at risk for catching something out there. On the other hand, its no fun having your child on long-term antibiotics & all the side effects that brings.

 

As I've said before, the IVIG has been really helpful in most cases. I still think that the biggest problem for the kids is their very odd & unregulated immune system. Sometimes one IVIG treatment can do the trick, sometimes they need more. Not everyone can afford multiple treatments. So, as an alternative, I feel that whatever they can take to modulate their immune system (and strengthen it to avoid further episodes of strep or viruses), that's what we can give them.

 

I think that the kefir has helped Gaby (unless it's purely coincidental that during these 5 months of taking it, she has not had any viral outbreaks & all symptoms have ground to a halt). But not all kids will willingly drink it and there are other things out there that have been proven to improve the immune system. One is called EpiCor - When you search for it - make sure you write EpiCor for the immune system (otherwise it comes up with something unrelated). Anyway, it has been researched and found to totally boost the immune system. If Gaby had not improved so dramatically, I would have found a way to try it.

 

So thanks again for all the well wishes & good luck to all. I have been reading some of the posts from newer members and it breaks my heart that there are more who are going through this nightmare - the rages sound all too familiar. Pat

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Hi Pat:

 

I have been reading your posts with great interest since I have been reading so much lately about the gut and the immune system. We have just finished IVIG and we are on antibiotics for the next year. My question is - what are your thoughts on probiotic or prebiotic supplements if you cannot get your child to drink kefir or if your child is allergic to dairy? I know that you can take a high dose of probiotics in the capsule form now from Whole Foods or you can order it on line. i just finished reading a book about taking probiotics with antibiotics and it suggesting spacing the two out by 4 hours since the antibiotics do go in and destroy so much of the good bacteria in the gut.

 

elizabeth

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Thanks for answering that question. I was curious because I remember reading somewhere that cows milk can be a breeding ground for strep and other bateria. Currently my son just doesn't want milk. I just recently got him to start drinking one glass a day a few days a week. I've wondered whether the decrease in cow's milk over the course of the last few months somehow aided in him getting better. Even if it was in a small way. I wasn't avoiding it, he just didn't want it. But, then, sometimes the human body has the innate reaction to refuse to drink/eat things that are bad for you.

 

I'm definitely going to look at Kefir next time I'm at the store. I wonder whether my kids would drink it. Since he's not on antibiotics, I need to try everything i can to keep the family healthy.

 

 

 

 

 

Thank you for your kind comments. I will try to answer all questions in one post. I usually give Gaby one large glass of kefir (mixed with juice, fruit, honey-in a blender) in the morning. Sometimes a smaller one at night. She weighs about 70 lbs. I used to have her stay away from cow's milk completely - she used to have some stomach pains after drinking it. Now, after 5 months of the kefir, I believe it has helped to break down the casein in cow's milk so when she does drink it (which is not often), she doesn't complain of a stomach ache.
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I am just wondering if you buy the kefir you give to Gaby or make your own??

Thanks

 

Hello all,

Haven't posted for quite some time - we were out of the country most of the summer. For those who don't know us - Gaby was 7 1/2 when she had a virus (turned into an initial herpes simplex outbreak which then repeated itself almost every month thereafter).She developed typical PANDAS like symptoms of OCD, tics, sleep disorder, extreme anxiety, paranoia, visual hallucinations, decline in handwriting, math skills, reading, social skills, ability to dress herself, ate with fingers instead of fork (just to name a few). Her behavior had improved the summer before last for a few months, but with another viral outbreak, started all over again. We had IVIG last October which got rid of the tics, but all other behaviors hung on with January, February & March being the worst months. In April we started her on Kefir and she is still drinking it daily. It has now been over 5 months without a herpes outbreak (unbelievable). Last month I stopped all the vitamins & supplements that we had been doing for at least a year. The only other thing I do besides the kefir (since it has really boosted her immune system) is that if I detect the slightest sniffle I give a teaspoon of vitamin C powder diluted in small amt. of OJ (equivalent to about 5,000 mg) & by the next day she is usually fine (sometimes I have to give a second or third dose, but rarely). If she complains about a stomach ache or I suspect any kind of infection, I give 3 or 4 drops of oregano oil mixed with a tablespoon of any other oil (fish oil or olive oil - just to keep the oil of oregano from burning the throat - its strong).

 

Gaby is about 98% herself now. No obsessive thoughts or questions. The only thing that remains is that she still gets a little more upset when provoked by her twin than she used to, but it's manageable.

 

Since I can't cite any research studies that prove this - I can only say that since Gaby started drinking the goat milk kefir 5 months ago, she has not been sick and with that her behavior has gotten better & better. I can't say that she won't ever have this again - because who knows? I do know that this is the longest that she's gone since starting the symptoms of being close to her "normal" self. I tend to think that if the good microflora in the intestines are plentiful, this keeps the immune system functioning well - might help to ward off strep or viruses.

 

Anyway, we're on a roll so let's keep our fingers crossed. Pat

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