amyjoy

Hello, Paula Welcome to the forum. Just wanted to put in my 2 cents about gut flora, which would be a problem with any antibiotic that you use, and like you said, probably for most kids with immune issues anyway. What are you using as probiotics? My suggestion is that you use a foundational probiotic strain called S Boulardii, which doesn't get killed off by antibiotics and can kind of "hold the space" for other good bacteria to recolonize by keeping the lactofermentation process going. Then you can rotate in other good lacto/bifido (strep-free) probiotics, at different times than the antibiotics. Depending on GI testing you can also use prebiotics or gi immune supports, like arabinogalactins or beta glucans. But i can't answer the amox vs ceftin question because my son never used either one, he went straight to the azithromycin. Hope that helped in some way. Good luck with your child, you'll find lots of info and answers here on the forum. amy

Yes i think no matter what we do, we as moms are wired that we should be all knowing and all powerful every step of the way. i have beaten myself up a xillion times for not seeing it sooner. all those early chronic ear infections - don't they say not to give abx? and the one time i caved and gave poor screaming little DS amox and he got a rash - well i was sure it meant an allergy...now i wonder...was it die-off?? shouldn't i have seen it? all of those things that have been posted - i have done and felt and failed every one. including my marriage which completely fell apart, and financially, i have spent every single cent i owned (emphasis on ownED in the past tense) my entire life savings and inheritance on this process, and am completely resource drained. heck, we had to do a fundraiser just to treat my son with ivig in november. i try not to think of it in the middle of the night when i wake up, especially. and yes, i know, we are parents and can only do what we can do. but the path i go down is, i am also a provider so i REALLY should have known better. double triple wammy failure. anyone of you would say that's crazy, and i would tell any of you the same thing. we are extraordinary moms and we are making a difference not only with our children but with each other's children and the world's children, ultimately, by revealing this process and this entity called pandas. on the flip side, i know that my son feels really bad about the stress his illness has created in me, he feels my stress and also, he knows, i'm always always there for him. i do everything i can to show him i'm fine, and happy to be there in whatever way, but i'm sure he feels the vibe beneath the hug and smile. recently as part of his healing process i've had him work a few sessions with a somatic therapist who does some clinical hypnotherapy. I noticed, that although he's having such a good response to the ivig, whenever he has a symptom, he super focuses on it and it scares him. So, i wanted DS to feel inside of him his undamaged healthy place, deep down, since he's been sick most of his life he probably couldn't even remember that there is such a place. he's only had maybe 3 sessions but it helped instantly and he has told me a number of times he wants me to go experience this so that i can remember that i have a healthy place i can go to inside of me. they are so wise, those children of ours.

Hi kcdc3, How is your daughter, is she improving? How are you holding up? amy

AMYJOY: May I ask? I am also in CA with Kaiser insurance. My DAN! told me he worked with a SO. CA Kaiser Dr. who was able to approve IVIG- and I have heard of 1 IVIG being done at a Kaiser hospital in Walnut Creek. I am waiting for my CAM test to come back, and then go make my case to Kaiser. Any tips for me? I'm very sorry to hear you did not get help from them- tho, not surprised. :-( Glad to hear your son is doing well! Sarah & Samantha 5 Hi SARAH I wish i did have some tips. We went through pediatrics, peds neuro, rheumatology and immunology and they all said sorry we do not believe that exists we do not treat that. the last words his pediatrician said to me were "there is nothing we can do to help your son". So now hearing that one child has been treated with ivig in walnut creek, that really is great and it totally pisses me off. But i have since gotten my son out of kaiser and onto anthem blue cross, which we're working with re: ivig, but at least they pay for all the testing we need to do. Good luck, you'll be sending the rest of us tips. amy

I believe that the definition of Primary immunodeficiency is that it is inborn, rather than developed. Otherwise it would be secondary immunodeficiency.

Steph, RE: Leaky Gut. I think its critical to find out why someone has leaky gut. It doesn't happen randomly, of course. So the way to heal it does depend on the reason it exists. In DS' case, he had leaky gut to due undiagnosed celiac. Celiac responses to gluten turn an intestine to something akin to chopped liver. The inflammation and bogginess of the tissue matrix creates space between the cells, little teeny spaces that allow entrance of molecules that are normally too big to pass through. This can include partially digested foods (creating allergies/sensitivities) and bugs. Doing a really good stool test will help to sort out the proper pathway. Is there inflammation in the gut, or immune suppression, or overactivity? Or dysbiosis, or frank infection? Each one is dealt with differently. I really like the Metametrix 2100 panel to help with this, it has a full chemistry in addition to the microbial study that is DNA screened. SO, in DS' case, stopping the gluten assault was the first thing. Secondly, cleaning up the clostridia and a little mold in there with herbs, the right probiotics and tissue-mending supplements. Drinking a high-grade whole leaf aloe vera a few times a day is easy for kids. We especially like the aloe concentrate by Univera, high grade plus you only need an ounce at a time, or you could even start with a tbs of the concentrate with little ones. And I think it tastes the best. Just be sure whatever you get is NOT inner fillet. Then the powders that help restore the ingredients the body would use to repair the tissues. These are typically rich in glutamine and contain mucilaginous / hydrophilic properties. Each child again is different - some are allergic to shellfish for example, so you would not use the powders with glucosamine unless it is vegan and you have to look hard for those. What we used to start this rebuilding process is the NEuroscience GI repair kit, which i like alot for this exact situation (each child IS different) as it also balances TH1/TH2 responses, plus a glutamine rich protein powder (palatable to each child). We really like the Xymogen i5 formulas. They are hypoallergenic, anti inflammatory, yummy, contain lots of immunoglobulins as well as arabinogalactins, one of my favorite things to help restore gut immunity without overstimulating. We also really like the Natura Beyond Whey protein alot, and have used one of the Metagenics proteins for GI restoration but i can't remember which ones. Here are some other examples of GI barrier support products we would use in our office for a child like DS: http://www.emersonecologics.com/Products/EmersonMain/PID-GIBEN.aspx http://www.emersonecologics.com/Products/EmersonMain/PID-GIREV.aspx But I can't stress enough that the gut evaluation is so important and the treatment is tailored. Does that help?

RE: cranial work In terms of the exact cranial work, it was not cranial sacral although we did try that. This is called, I believe, craniopathy. It entails a more rigorous resetting of the bones of DS's head. He literally moved the sphenoid bone, the nose, one cheek bone, jaw, palette, etc into place a number of times until it held. I can tell you that when we went to see this Dr., my DS's tics and imbalances were at an all time worst worst awful. But the very first treatment (which ended up being on a Sunday evening at this DR's house because the referral came in urgently from a good friend of his) resulted in DS going to sleep that night like an almost normal person, for the first time in 2 years. It was staggering. This was the sunday before TG 3 years ago. We saw him every day till TG and by the next week, the vocal tics were practically gone. And by the week of Christmas, we actually went to the mall, my (then) husband DS and me, walked around and went to a movie, like almost normal people. It was the first time we were out in 2 years. I had hopes that went through the roof. I am not saying of course this is a cure for PANDAS but it is #1 in my tool box and the first place we turn for wierd symptoms. What it did was to re-establish DS's baseline so we could see more and more what we were dealing with. And its how we realized the inflammatory nature of his stuff. After that first treatment, when the DR said to also give DS some ibuprofen that night to help the treatment settle in, wow, DS's response was quite dramatic. If you live in northern CA i'd be happy to share this referral with you.

Of course, we all have our own opinions about things, that's a good thing. but i treat hookworm and other infestations in my practice. its nasty, it causes GI problems and nutrient deficiencies of all kinds. this is not what a "pro-biotic" does, by definition, it does the opposite. There may in fact be, as I have read, some immunosuppressive properties that hookworms have due to the chemicals they secrete in the gut that make the gut less likely to attack it, its it's own lifesaving measure. I can the benefit of this kind of chemical. And perhaps if this chemical is extracted and patented by big pharma it can be used in a health promoting manner in autoimmune dysfunction and other immune regulating problems. Absolutely. But in my personal value system, creating a potentially damaging condition to fix another, well, it just reminds me of how many MDs will use a medication and then end up adding 5 medications to fix the side effects of the others medications and how that is for people in my practice. But that's just me, a philosophical thing, I think. If any of you decide to undertake hookworm infestation therapy, i'd be interested to see how it goes, for sure!!

depends on weight of child and form of skullcap you use. I like the elixer as it goes in to work right away. You can probably find an alcohol-free version if you have a great health food store, or if not, you can put the tincture into some warm to slightly hot water or juice and some of the alcohol will burn off. Skullcap is bitter bitter bitter, but you can mix it. i have a big child. We get the Simplers skullcap (you can find that at most large health food stores, its a bulk form that you dispense at the store in 1 or 2-ounce amber bottles that they have or you can bring your own.) We use 3-4 full droppersfull, you may end up using half that.

Well that's an interesting link. I sent this homeopathy practitioner an email to find out more about this particular case, maybe she's open to sharing more info. In terms of my son, we have tried almost every holistic avenue to cure his PANDAS, before and after we knew it was PANDAS. I work in an integrative practice, so my inclination is natural means but am willing to include the medical because to me, that is "holistic" - the inclusion of all of it. We have done herbs and supplements, enzymes, all kinds of gland and organ supports, acupuncture, chinese herbs, a number of kinds of body work and body-based therapies, ayurveda, detox, anti-inflammatories, prayer, shaman healers, chiropractic, psyche meds including natural ones, gut and liver supports of all kinds, energy healers, reflexology, cranial sacral, psychotherapy, emdr, nlp, biofeedback, juicing, a zillion different versions of diets and allergy elimination, rotation, wheat free, gluten free, chemical free, dairy free, whatever free. Gosh, we have gone broke doing all these things while having Kaiser insurance that covered zero, plus they did zero of the testing he ultimately needed except they were willing to do an ASO titer (which when it came back as 600 they just shook their heads and suggested 5 days of zithro). Nothing in and of itself eliminated the situation. At different times, different things did help. There are a couple of main things. THE FIRST was, a specific form of cranial work that DS has had, helped him tremendously from day 1 before we ever knew it was PANDAS. We had spent 1 1/2 years thinking this was a psych issue. Then our third therapist had the brilliance, after 2 appts, to say hey, this is an organic tic disorder not a psych issue, and she referred us to a chiro who specializes in neuro and cranial stuff, a lifesaver, literally. All we knew is that it transformed our child from an 11year old becoming less and less functional and barking and shaking and ticcing and up all night into a sleeping much more, no more verbal tics and definite coordination improvement almost immediately. Really it just took the edge off and helped us see more of DS's baseline without the added cranial structural stuff he had for whatever reason putting extra pressure on already inflamed brain tissue and cranial nerves. It was a Godsend and continues to help tremendously, although he's in such a different place now. It also was the first clue that what we were dealing with was inflammatory, as that is not a typical tourette's scenario. SECONDLY - testing. Thorough and complete and accurate testing. Doing a full GI workup and the right blood testing gave the kind of information that was targeted and showed us how to tackle it head on. We would never have known about the celiac if we hadn't gone out of Kaiser's system (their one TTG test showed negative but that's not a great test) or about the clostridia in his gut. Or the methylation problems. Or certainly about the PANDAS. But getting off of Gluten changed his entire existence from a puffy achy bloaty pastey waterlogged child to a pain-free (almost) unbloated less waterlogged almost normal looking child with a tad of color in his cheeks. and the stomach aches went away completely and stinky awful poops. It took alot of supplements to clean up his gut and then help rebuild his damaged intestine and intestinal lining, months, before we felt we could even start him on antibiotics (we found out about the PANDAS at the same time we found out about the celiac). THIRDLY - natural anti-inflammatories esp Avipaxin, which reduces inflammatory cytokines in brain, also some very cooling chinese herbs, and methylation/liver support and magnesium magnesium magnesium, and oils. AND FINALLY - IVIG. 2 months post IVIG, oh my gosh. The other night after a basketball game one mom came up to me and said that parents were remarking in the stands at my son's extraordinary progress and coordination improvement on the court in the past 2 months. They did not know what he has been dealing with. Life is better so so much better in my house. OH, one last thing we are now working on. A few weeks ago, my DS had this wierd stomach feeling and then it made it that he felt he couldn't take a deep breath or something, and it created a few weeks of anxiety as we ran our circuit of healers and no one could make this go away. It occurred to me that perhaps, if you or I had originally felt this symptom or set of symptoms, we probably would have noticed it and then not really stressed over it and more than likely it would have eventually gone away. But because my dear boy has grown up mostly ill his whole life, when he gets a symptom his entire little being focuses on it and worries over it, and maybe, makes it bigger, i don't know. So i decided that maybe a part of him had to remember his healthy self inside him, and help him to maybe re-wire some thing in there. I had this picture of like, a tuning fork inside him resonating out, hello, this is who you are despite all of your years of suffering and illness, and maybe remembering this would help him. So i brought him to a somatic therapist, who also does clinical hypnotherapy and calls himself a "psycho biologist" or maybe a bio psychologist? Anyway, after 2 sessions, all of this breathing stuff is gone and DS is learning some wonderful skills about dropping down into some healing space and bringing his power back together as a whole being. All of this said, he's still on antibiotics and a host of supplements and will be for however long it takes. And i'm still broke. But i think of the term "holistic" as being very inclusive, so that everything is open territory and that we can pull from all realms of healing, and that each child's path is unique. Anyway, sorry for the long post, but maybe something in here might help someone.

We use skullcap liquid in a pinch like that, works amazing for my DS (and for me:O)and can help with pain as its a nervine. Also, ibuprofen is calming while not natural.

WOW Vicky, that is so so awesome for you and your DS. It just takes time to watch and the waiting is so hard. We had a child in our office who's everything escalated after taking him off of cephalexin and putting him on zithro, and we gave it two weeks. he just got worse and worse. within 48 hours back on the ceph, he was completely better again. so each child is different but it is worth the wait to see what happens. The initial herx can make the symptoms worse for awhile even when its the right antibiotic.

ps i think that's a good sign, your MD doing the One Test. He must be thinking out of the box, in a more integrative fashion, and you are lucky you have someone like that working with your child!!

clostridia can create neuro symptoms, yes. they produce nasty waste products that can damage neuro cells and also greatly interfere in gut function. how are you treating it?

where do you live?

I do not believe there have been any reported cases of curing PANDAS using 100% holistic (as in completely non-chemical) products that we know of. If there were, and there was a holistic cure, we'd all be doing it and this forum would be emptied out. There are many ways that holistic solutions are part of a good integrative care plan for a child with PANDAS, such as for GI support or immune support, cranial assessment/manipulation or whatever is right for a particular child's situation. Many of us have found supportive therapies that have helped our children. But as far as i have heard, no one has reported a total cure using all natural products. please inform us if you know of anything.

Have you tried using antibiotics for lyme? If the lyme is causing the neuro problems / OCD then the symptoms could possibly improve with the correct antibiotics. Makes sense to try that first.

I HOPE so for you. Is she on antibiotics and other immune supports in the meantime?

What a delight. Normal is so...so good, just so normally good.

WEll, this mom was the insurance company's total nightmare of persistence. She literally scheduled in two hours each morning to talk on the phone to Anthem. She quickly dismissed the case manager and the case manager's manager as being completely powerless. She started calling the office of the President of Anthem and insisted on talking with her. She called every day and pushed and pushed. She did this a couple of years ago as well, when her child was dx'd with Lyme and they needed to get very expensive bicillin shots covered, and finally she did get through to the president of the company. After telling her of the nightmares of trying to do business with her company while her child was ill and suffering, the president herself ended up ok'ing it. This mom had been told by a number of people in Anthem that these antibiotics will NEVER be coverd and she said, just watch i'll get it covered. Anyway a couple of weeks ago, she finally reached someone in the president's office about this IVIG denial, who became willing to listen to her and ultimately, he is the one who made it happen. While at first it sounds like he did what she asked him very begrudgingly, he did explain in detail what they were wanting in her son's file. Every time he said to her...."now call the doctor and ask him to send us such and such..." she said no, YOU call the doctor....YOU do the follow up, this is what I am paying your company for." And she constantly made it personal..."what if this was your child suffering, what would you do??". Then today, he called her told her the great news, the denial has been overturned. I have asked her to share this person's contact info, and she felt she needed to ask him first, if this would be ok. And if not, to give us the contact person who would help us deal with this as there are many kids out here needing our denials overturned. She also wrote a letter to the insurance commissioner, to her senator and to the governor's office as well. These are all things that we can do. I'm hoping to get the name of a contact high up in Anthem that we can connect to. I'll let you know what happens with that.

I'm running out the door so cannot get specific but must tell you that a child in our office just had a DENIAL of IVIG treatment funds OVERTURNED at Anthem BC. It took a gargantuan effort on the part of this mother and I can tell you more later, but it happened. And its HUGE for them, and for us, for all of us. So DO NOT GIVE UP. Amy

HI PHASMID i hate anthem, they denied us and 2 children we have treated with IVIG in our practice - well, one we treated and one who is struggling with the company and continues to elevate the level of dialogue to higher and higher people. I think, who the heck are they to deny coverage, when other insurances do cover it, so does canada and other countries' own healthcare systems. Anthem is outdated and needs to be pushed. We are working on a packet for them but also i have my ear on this mom who is brazenly working her way up the anthem system to push for ivig coverage for her DS. I will let you know any info i have on that. also i told her that if she is able to push it into coverage we may hire her to do so for us/ our practice and to help with the overall cause. Meanwhile, we ended up having to fundraise the money to treat my son, just in November, over TG break. And he is doing amazing, amazing. Tics down, OCD down, anxiety down. Last night a mom at my son's school said to me, after the basketball game (someone who does not know what my DS has been through), she said that parents in the stands were all remarking on the incredible progress my DS has made on the bball court and in his coordination in the last 2 months. Ta-DAH!!!!!! Who knows what tomorrow brings, but today brings great acknowlegement from the universe that its the right thing. KEEP GOING and PM me if you want to conspire. Amy

Just to echo the sentiments of the group, I want to encourage you to not brush this under the table in your great wish to have everything be ok. I wish I wish I wish I could turn back the clock to an earlier time where strong intervention during a more acute phase of my DS's illness could have prevented years of sorrow and suffering on all of our parts. This may be your moment to take matters into your own intuitive hands and stay the course of steady treatment now. We as the PANDAS moms of the universe support you with all of the courage and good juju it takes to pursue this path against the grain of your comfort zone and medical advice. Many blessings to you!!!

hi phasmid, do you have any idea what the insurance outcome was for this poor person? I am looking at putting together something like this for PANDAS insurance denials, and this one is an amazing example of intention to get coverage. And it must have taken a super long time to write, but its inspiring. Where did you find it?

I personally think it sounds way more risky than IVIG and like a desperate measure of the medical community who doesn't know what else to think of. Maybe a more comprehensive approach to assessing our children's real health and medical issues would be better than this fractured archaic gesture. Personally for me, this highlights everything that is wrong with our medical system.