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Showing content with the highest reputation since 03/22/2018 in Posts

  1. 2 points
    kos_mom

    Tonight's Chicago Med episode

    I contacted PANDAS Network right after the episode. This morning I received this response from Diana Pohlman: "We heard from lots of parents and 600 innundated the producers email. We are following up with an email to the producers as well. Happily 20-20 is doing a great story on REAL TREATMENT mid May and that will be on ABC." NBC is the producer for Chicago Med.
  2. 2 points
    MomWithOCDSon

    Help....when to be admitted?

    Oh my, I'm so sorry! Your son's description of how he's feeling reminds me vividly of Susannah Cahalan's description of her own auto-immune illness in "Brain on Fire." She, too, experienced paranoia and some other symptoms that many traditional doctors would all too readily dismiss as solely psychiatric manifestations, dispensing with the underlying physical issues. If your son is a danger to himself or to others, you will need to get him immediate help; if that means the hospital, then it's the hospital. Unfortunately, I think it likely that you should expect to be met with some psychiatric interventions -- tranquilizers, at a minimum -- if he presents as agitated or full-on delusional at admissions. You may have reached a crossroads where the abx are insufficient for meeting his illness adequately. Can you get a PANDAS/PANS specialist on board? I know a number of families here have allowed short-term and periodic use of anti-psychotics or tranquilizers (Valium, Seroquel, etc.), just to get there kids calm enough to travel for help, and/or to give the kid and the whole family a break and some sleep. I'm not advocating that, necessarily, but you have to do what works in order to give your kid their best chance at a route which leads to the best healing. Hang in there. Hopefully, someone else will chime in with more direct experience that may resonate with your situation.
  3. 1 point
    jenann

    Tonight's Chicago Med episode

    A firestorm of comments have gone up on the show's Facebook page. Please join them. https://www.facebook.com/ChicagoMed/ And here is a link to complain directly to NBC. https://www.nbc.com/contact-us
  4. 1 point
    Cind

    Strep alters gut leading to inflammation

    The results obtained from this study suggest that streptococcal infections can alter gut microbial communities leading to a pro-inflammatory state in the gut by selecting for specific bacterial strains that are normally associated with gut inflammation and activation of the immune response (Figure 7). This condition is likely maintained in patients, even after the infection itself has resolved. Moreover, an altered GM composition could have indirect effects by reducing the production of metabolites involved in important brain functions such as SCFA, D-alanine and tyrosine metabolism, and the dopamine pathway. Thus, the GM composition may possibly influence behavior, as clinically observed in PANS/PANDAS patients. https://www.frontiersin.org/articles/10.3389/fmicb.2018.00675/full
  5. 1 point
    JenniferG

    LD vs HD IVIG

    Unfortunately, my provider will only prescribe to the a certain infusion company. (He owns it). Not my preferred scenario, but kids are healing.
  6. 1 point
    The medical community has a hard time believing Molecular Mimicry. However, when you have a child that is not able to stand, walk, has all over body pain, nonstop headache, scalp pain, hoarse voice, vocal tics and a doctor from MAYO suspects postinfectious encephalitis then it's time to figure out what the illness really is. The Cunningham Panel can determine if the antibodies are present but only needs to be done when a child is in a flare in (my personal opinion). My son was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) in October 2011. POTS can be caused by a virus. He had mycoplasma walking pneumonia in January 2011. Two years later testing revealed high Igg levels of mycoplasma, HHV6, Parvovirus, and a 500 strep DNASE level. My son suffered with his symptoms for several years and they did not appear overnight. The testing (Cunningham Panel) is available to prove that the antibodies do attach themselves to neural receptors. Thank goodness we have a few doctors that recognize what this illness is but it needs to be called neural receptors autoimmune encephalitis.
  7. 1 point
    To a great extent, the medical science is beyond me. But as a recall, the actual magnitude of the titer count (whether anti-dnase-b or ASO) matters as some "highs" are, in the end, essentially statistically insignificant while others are truly indicative of something amiss. My recollection is that the anti-dnase-b titer test measures a strep infection exposure that was at least 4 to 6 weeks in the past; if your son's exposure was 3+ months ago, then the fact that his titer level is still "high" by his doctor's standards would suggest that, potentially, some molecular mimicry has taken place in which the strep has exchanged some molecular material with body tissue, tricking the immune system to continue to produce antibodies to attack the "invader" which is actually "self." This is my simplistic understanding of what can happen in this autoimmune condition. For the "devil's advocate" view and some decidedly more scientific responses on these topics, I would drop "anti-dnase-b" and/or "molecular mimicry" into the forum search box and then thumb through the resulting topic threads. These topics have been discussed in some detail during previous years here, but it's been a while. And it's fairly complex, at least for someone like me. But there is a wealth of information here, if you have the time and inclination to dig through it! Good luck!
  8. 1 point
    bobh

    GF diet helped, but then stopped. Input?

    That low-grade fever and red throat seems like a clue that what he could be fighting caused the flare - if the timing makes sense. A couple of days (and possibly longer) before those fever/throat symptoms could still explain a flare then.
  9. 1 point
    I am sorry to hear about your troubles and wish your daughter a speedy recovery. Unfortunately, vaccines can cause serious injuries especially the HPV. There are many reported incidents regarding this vaccine. Definitely hold onto tightly to all medical records and if, unfortunately, your daughter might have some lasting injuries you should contact a lawyer and apply for compensation to the Vaccines Courts. Have the administrating doctor report this reaction to VAERS (Vaccine Adverse Effect Reporting System) as soon as possible. Hope you might find any other solution to help you.
  10. 1 point
    Where are you? What hospital is your daughter currently in? Any more new with respect to test results? Did these symptoms come on suddenly? Is your daughter otherwise neurotypical, or has she previously presented with autism or another neural disorder or "difference"? Yes, these symptoms are ones that can show up in severe episodes of auto-immune disorders, but not every medical professional is going to recognize the signs for what they are. When you had blood tests, what tests were included? You mention having an "immunity test." Via blood panels? What testing is included there? Make sure you're testing for ASO and anti-d-nase b (strep antibodies). Catatonia (even narcolepsy) has been associated with untreated strep infections, and many people are classically asymptomatic for strep -- no fever or sore throat, but raging antibody levels nonetheless. If you're spending time in the hospital, waiting, you might try getting a copy (it's available in digital format as well as paper) of a memoir by Susannah Cahalan called "Brain on Fire." Susannah suddenly developed all sorts of bizarre neuro symptoms, some of which your daughter is also displaying. She was studied and poked and prodded and tested, and they couldn't find the culprit; a set of doctors decided that she had a multitude of illnesses, both physical (seizure disorder) and mental (psychosis), but then one out-of-the-box thinking doctor noticed a few atypical behaviors and kept studying her and ultimately determined that she had developed some auto-immune reaction to some unknown microbe. It's been a while since I read the book, but I don't think they ever found out definitively what it was. I believe Susannah was treated with multiple interventions, but infusions were definitely in the mix, and she recovered. She was in New York, and the doctor who essentially saved her was Dr. Souhel Najjar.
  11. 1 point
    Sheila

    will these tics ever go away?

    Hi mlee, and welcome to the forums. I'm sorry that your son has been having some tics. Seeking help from a good naturopathic doctor is a great step to take. I hope you will let us know what foods come up as problematic. That should give you some good direction. You can also ask this person for suggestions on nutrient supplements. Charting is also a terrific step, though I know it can seem overwhelming, as you say. It will get easier with time. Keep it up--but also, only take on as much as you can without stressing yourself too much. If your son has a problem with gluten-- and not everyone with tics does -- it can take some time for improvement to be seen. I would give it a couple of weeks, and even then do not expect a dramatic change immediately as it can be a gradual change, and there may be other issues going on as well. Our organization has a new book out on tracking down triggers for tics. You might find it useful. Also, I think it would encourage you, because you asked if people are able to get the tics under control, and yes, many do and some of their accounts are in this book. But it can take a comprehensive effort, not just one or two things that usually bring about all the change. Have you already had a chance to make other changes in the diet like avoiding artificial colors, flavors and preservatives in food and drink? What we have found is that a three-pronged approach can often help: 1) dietary change, 2) avoiding allergens (is your child or immediate family allergic?) and 3) avoiding toxic products typically used in the home like bleach, scented products, pesticides. In addition to the above, you want to be sure there is not an underlying infection. Please get back to us and let us know a little more and also what the naturopath suggests about the food testing. And you should definitely have hope! You have already taken some very positive steps.
  12. 1 point
    bobh

    Tonsillectomy and Adenoidectomy?

    Ok, here is a spreadsheet attached that includes a brief description of the tonsillectomy experience, and then a link (all but 3 to a thread here at ACN Latitudes) if you want to read more. (The hardest part of this was actually weeding out duplicate responses in different threads). tonsillectomy_results.xls
  13. 1 point
    Joyle

    Where to find Clerodendrum Inerme extract?

    Hi everyone, Yes, the plant Clerodendrum inerme does work to reduce tics and other comorbids very effectively. We have discovered it doesn't work for everyone but it has helped many. The Facebook group is called Natural Care for Tics and Tourettes. There are lengthy discussions there about this plant which we have nicknamed cleo. It can be taken as a green juice or in capsules after dehydrating and powdering the leaves or as a tincture or as a homeopathic remedy. The only restriction is you will need to source the plant and grow it in a pot or your own backyard. The safety profile of the plant is exemplary. Please also do your own research to satisfy yourselves .... there is a wealth of information about Clerodendrum inerme on the Internet. Kind regards, Joy
  14. 1 point
    We also had very severe separation anxiety as the first symptom. Then we got many others (physical as well as behavioral/psychological). During the first 2-3 months, while DS (age 10) was getting worse and worse we did 2x weekly CBT with lots of "homework" (exposures etc). It did absolutely nothing. In fact, I think the CBT had a very negative effect: permanently imprinting truly awful memories of his school in his brain (thankfully he is now back in school but there was no way he was going to go back to the school where this started; to this day, he won't set foot on that campus). I wish I had taken the energy we were putting into CBT (and then going to the psychiatrist for zoloft, also totally ineffective) and put it into medical treatment (abx, naproxen, steriods etc). Our son would never have gotten as sick as he did had we known sooner (like practically every PANDAS kid). It is very hard to know what to do, but if the antibiotics are not sufficient in bringing back your child (and unfortunately, that appears to be the case quite often) , then I would start pushing for a 5 day steriod burst. If there is a glimmer of hope with that burst, then you know it is not separation anxiety, but brain inflammation and you can pursue more medical treatment options more rapidly. As others above have said, CBT is a very useful tool. Just not for someone in a full flare of PANDAS/PANS. I think CBT can be very helpful after a child has started recovery and parents are trying to nudge them along to be able to do more and more. When we got to that stage, I had a thought along the lines of "oh, so this is what we should have been seeing with all that CBT." And unfortunately it seems CBT is a tool many parents continue to have to use when recovering from future additional flares along the way... Best of luck.
  15. 1 point
    lysia

    Do symptoms change after puberty?

    I am an adult female. I was never diagnosed with any mental illness as a child, as my parents addressed any psychological issues as solely behavioral problems to be disciplined. That being said, I suffered from very severe OCD symptoms that (I suspect) **might have been a result of PANDAS. [As this was never diagnosed nor treated, it is purely personal seculation based on the symptomology and relative timeline of exposure to streptococcus- I also share other speculations as to possible causes for the disorder, though mostly suspect the former.] I can say that for myself; the OCD began to dissipate very significantly after puberty and continued to do so over the years. I have no significant nor any life debilitating symptoms remaining of OCD whatsoever. The most debilitating and severe period of OCD that I had was between the ages of about (I think) 7-12. However, the habitual thought patterns that I had developed in my brain during that time (mind you with no counseling/medication or understanding of it as a disorder whatsoever) did take a significant amount of years to fully recover; therein many behaviors still remained. I say this because I do believe that it is highly possible that the neurophysiological OCD had in fact been mostly if not wholly eradicated during the pubescent period in which I would had been experiencing many hormonal and chemical changes in the brain possibly countering or overwhelming some others. (Again- this is much personal speculation.) Nonetheless, because OCD is what it is, I find it impossible to consider these behaviors would disappear at the same time. Gradually they did go away. I imagine then on came bigger problems of being a teenager and every little bit by bit the tics and compulsions and obsessions did dissipate. I was VERY secretive of rituals (tapping/counting/hoarding/maaany others) and did them in a way not to be seen. Because of this and that whatever my parents might had known was never pronounced to me as a "mental disorder", I credit my ignorance to having an actual illness in a way to having had allowed me to recover; as there was no stigma or added obsession (i was highly obsessed with everything) that I was handicapped with a psychological ailment. In a way, the denial around me helped. This is NOT to diminish that as a whole, however I suffered far more severely because of it. But it is worth noting i think that sometimes less attention may help with recovery. Overall of course, a child needs their mother so much, and for one with ocd- they really need their mom. I love my parents who did just as they felt best, but during that time (that to this day I remember SO well as being so truly horrifying for me), I didn't have that. I was so extremely confused, shameful, scared, and exhausted. And so incredibly isolated. I am so grateful pediatric illnessness like these are finally recognized and kids now can have amazing mothers like you who are on their side of the struggle with them rather than at the other end of it. No child should have to feel so shamed, scared, and alone. Illness, treatments, recoveries and even regressions are just as any other experiences and trials of life. They are part of each individuals journey into becoming the person they are meant to be. And children are (be them healthy/disabled/'normal'..whatever) absolutely beautiful and perfect every step of the way. This is what I wish my mother would had said to me. So i could have understood that I'm not my illness, but my strength to battle this is part of what makes me so incredible and builds my character into the fantastic person I am to become. (Of course- this and also 'lets see a psychiatrist and get treatment'), but all the same Sorry about the tangent! I came about writing this commenr ( now... memoir) in searching this subject in Google just now out of random curiosity while reflecting upon my past. When I saw your q, I felt I just had to respond with hope because my google search q was: "my pandas ocd gone after puberty". When I read this, I was so inspired by you and what you are doing for your child. Asking these questions, treating her, and being in the fight along side with her. I joined just so I could write this to you to thank you for what you are doing for her and to send the hope to u both that it absolutely goes away. I can only imagine how exhausting and challenging it could be for a parent. But can also know first hand how horrible it is to have the illness, and to go it alone as a kid is beyond awful. So that's it, really. BLESS you mom for taking care of your girl and it absolutely does get better, as I feel that indeed post pubescence changed everything. So yes- hope is there and she WILL recover. I had a fantastic time by high school being ocd free (mind you tendencies there but I feel this is a bit of personal brain wiring and takes lots of time and work . It was NOT like it was before puberty). Keep being the AMAZING kick mom you are. I'm so SO happy she has you. Just needed to respond. [[**As a side note: in respect to the other comment made by a parent in which i felt some ocd kids might be getting stigmatized by the illness and certain behaviors are being either dismissed or over addressed as psych symptoms when in fact they are either one of 2 things: an unrelated call for help or personal struggle environmentally that isn't to do with ocd, or otherwise just a very healthy response to stresses of puberty. I wanted to throw out the fact that nearly every pubescent child/young adult/teen are often incomprehensibly 'nuts by nature' too! Please consider it's a crazy time for them (thier brains, bodies, self identy, sense of life..) and the healthiest girl during puberty can be a total weirdo obsessive anxious nightmare of a kid too I wouldnt had wanted my parents to say to me it was the 'ocd' every time I acted out (either by way of empathizing/diminishing/ reprimanding or whatever) and I could be horrid at times. I fear it would had kept the obsession for me longer and I would had never believed I would be rid of it. . Maybe i would had even used it as an excuse to get away with bad behavior which would had also drawn self identity to ocd and inhibited recovery . A BIG part of breaking this very strong mental lock is to forget it whenever possible. And it is VERY hard to do, but a beautiful thing when it happens. And each instance builds into healing. Sometimes it is rare and fleeting. Sometimes it is overwhelmed by something else negative (like even some nutty teen drama being created). I would just hate a reminder if it wasn't on my brain already. So i say, if they are being teen brats and it is not 100% textbook symptomatic of OCD, then dont call them out on having a psychological illness, call them out for being brats! (Just my opinion)]]. Good luck to you and your amazing kid. You're really a hero to me. Truly. Much love.
  16. 1 point
    Hello, My son has been suffering with PANS/PANDAS since age 8. He is now 14. He was diagnosed at age 11 by a PANDAS doctor after a few years of having standard mental health treatment without success. After two years of antibiotics he received IVIG and six week post-IVIG became significantly worse. Our doctor had never seen this before. We called Dr. K. in Chicago who said my son probably still had strep in his tonsils. We were unable to get a doctor to remove his tonsils based on the PANDAS diagnosis alone. One ENT gave him clindamycin which has a history of getting into tonsils better. His PANDAS doctor then ordered the Cunninham Panel which was negative. My son did not want to participate in their study. We were left with returning to conventional neurology for the tourette symptoms and psychiatry for the OCD. A new neurologist/psychiatrist (a conventional mainstream doctor) heard our story and thought we should try the IVIG again. We did a second round and my son improved greatly then after the third round he's like his old self (as much as I can remember him after all these years.) It feels like a miracle to me. Although he's not 100% better it's remarkable enough for everyone in his life to notice. I'm not sure what helped this time. Maybe the clindamycin before the IVIG? Do not give up based on a Cunningham Panel. It is still experimental. I was crying when the doctor told me it was negative and IVIG would not work for my son. I was certain it was PANDAS. They (Cunningham) are still looking for markers and the current panel does not cover all possible markers which is why they ask families to participate in the research to find new markers. If I had turned down the offer for more IVIG based on the other doctor's recommendation from the results of the Cunningham Panel my son would not be on his way back to wholeness today. His tics are almost completely gone after years of severe tics and anxiety is very low. Almost normal. Of course after years of being in the grips of PANDAS my son has much catching up to do with peers. We still have much healing to do. I'm not sure he will ever catch up but at least now he has a chance. Good luck to everyone. Eva
  17. 1 point
    Hi, I've read several testimonies/blogs were essential oils cured PANS/PANDAS in children. Young Living Oils has the Raindrop technique with specific oils for autoimmune disorders. I reached out to PANDAS Hope for Healing twice last year and never got a response.
  18. 1 point
    Would love the same referral please for a Pans/Pandas doctor in Southern California who also is LLMD. Need a specialist in busting biofilms, Would love to find eastern or western approach at this point. Thank you!
  19. 1 point
    Did you receive a recommendation for a PANDAS doc in Orange County? I live in OC as well and have a good integrative medicine doctor that we have been using. My DS has also been diagnosed with Lyme so now I'm spreading out to an LLMD but up to now I've been happy with our integrative medicine doctor - she is very thorough and caring. Let me know if you'd like a referral and I'll private message you.
  20. 1 point
    If your child has Myamotoi Borrelia it would NOT have come up positive on standard Lyme test. It has different proteins and not testable at this time. Borrelia Spirochetes can be sexually transmitted and also passed from mother to child in-utero. We have 3 children with gestational Lyme et al PANS/PANDAS/Autism. I PM'd you a list of Dr.'s. One is located in Santa Barbara for you plus some really good Dr.'s/NP's in Bay Area. 2 of the NPs listed have children with PANS/PANDAS. Look in upper right hand corner for PM message.
  21. 1 point
    Your child's Periodic Fever Syndrome as a toddler has me concerned there are other potential infections involved. Many of us found that although strep was an obvious trigger there were other underlying infections or viruses. Borrelia Miyamotoi is the more predominate TBI (tick born infection) in CA and is not testable via any standard Lyme test. Borrelia Miyamoti is also known to cause relapsing fevers. Here is a little blurb and you can google Borrelia Migamotoi Relapsing Fever for more references. Borrelia miyamotoi is a relapsing fever Borrelia group spirochete that is transmitted by the same hard-bodied (ixodid) tick species that transmit the agents of Lyme disease. Tick Study in CA: http://www.bayarealyme.org/about-lyme/what-causes-lyme-disease/borrelia-miyamotoi/ http://www.cdc.gov/ticks/miyamotoi.html I would highly recommend seeing an LLMD (Lyme Literate Dr.) that understands PANS/PANDAS to investigate further for your son. We have wonderful LLMDs in Northern CA that are very well versed in PANS and/or PANDAS if you are willing to travel. Please PM via the forum for referrals. Does your child have a known tick bite at any point in his life?
  22. 1 point
    I know this is an older topic, but the easiest way to get IVIG approved is to read your policy and to go with what your policy says. PANDAS/PANS is almost always excluded. Immunodeficiency is almost always included in some way, shape or form. Whether your son meets the guidelines and what dosage he will qualify for depends on what your policy says and what your doctor orders. It may well be if he qualifies under an immunodeficiency section of the policy that your doctor can get them to approve HD IVIG on the basis that he also has an underlying autoimmune condition that would contraindicate low dose IVIG. Most IVIG policy provisions are updated yearly and there should be a date on the written IVIG coverage provisions to ensure you are dealing with the latest one.
  23. 1 point
    Full immune panel (IgG, IgA, etc.), ASO (strep), anti dnase B (longer-term strep titer). I think methylation issues are a VERY worthwhile trail of exploration for someone your age dealing with these issues, and it appears from your signature line that you done that. So none of the interventions you're trying for the mutations has been effective? Wombat, I don't want to discourage you from exploring every available avenue, but as the mom of a now 18-year-old who was first diagnosed with OCD at age 6, didn't get a PANDAS diagnosis until age 12, responded very well to abx (brought him back from a totally dysfunctional brink), but continues to deal with some ongoing OCD and anxiety issues (though manageable) . . . I just want to encourage you to perhaps not get hung up on the testing and interventions tied to traditional PANDAS/PANs (rapid onset, pre-pubescent expression, abx, IVIG, etc.) and perhaps lean toward more "lifestyle" type interventions that will hopefully help make life more functional, more fun, and help you push away more of the OCD that interferes with your everyday life. If you do yet have underlying infection, be it lyme or strep, etc., then abx, IVIG, etc. will likely help you to an extent. (How long were the course of abx you've tried in the past? Can you get a longer-term prescription for them and journal your behavior patterns for a period of months? We found that, after the initial "burst" of palpable benefits, abx tended to yield more subtle improvements over time . . . perhaps unnoticeable to a majority of people, but by reading back through our journaling of things our DS used to do but didn't need to do anymore, or things he'd given up to the King OCD but had begun to resume as he improved). But just from our experience, having contended with OCD for as many years as you have, I would not want to lead you to believe that abx or IVIG will be a panacea -- a cure-all. And if either of them is to be effective, IMHO, given your age and the term of your dealing with this condition, I'd wager that that you would need a longer and/or more repetitive course of these medical interventions than might be the case for a younger, more recently diagnosed case (our DS took abx for about 2 years). Additionally, I would suggest dietary, supplements, ERP/CBT and perhaps even some prescription medications to help you gain more leverage over the OCD, even if only as temporary measures. In the end, the PANDAs tests and interventions turned our DS's life around, but even so, he continues to need supports. Whether that's because he was older and the anxiety/OCD was more entrenched by the time we determined the immune condition, or if it's because it's genetically part of who he is and the PANDAS just made it worse, I can't tell you. But I've made my peace with throwing everything at this monster that's at our disposal, and that methodology, in the end, has given my DS his life back. Keep fighting, keep searching and never say never! All the best to you!
  24. 1 point
    amyjoy

    Holistic Treatments for PANDAS

    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.
  25. 1 point
    Hi Claire, although we did food sensitivity testing when my son was young (4yo) and again after his TS diagnosis(10yo) and also specific food elimination when we were detoxing from candida(yeast), my son does NOT have any food allergies or sensitivities, other than to artificial ingredients. He showed only a slight reactivity to peanuts, but now seems to tolerate them just fine. He does however react big time to artificial sweeteners, colors, flavors, high fructose corn syrup, preservatives and MSG and so we totally avoid these.


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