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GatsMom

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  1. All of our family members are on 500 billion units of probiotics a day. Our nutritionist says that even at this high dose, it will take a few years to really heal their bodies. Our goal is that strep no longer becomes the enemy because their bodies become strong enough to live with different bacteria. Strep is all around us.

     

    Elizabeth

     

    That's a ton of probiotic! I'd love to get that much into him as I completely agree with your sentiments. How do you manage to get it into your family if you are dosing abx, too? I'm told they should be given away from one another. Does anyone know how many hours away from abx probiotics should be given?

  2. We have been doing one culturelle capsule per child everyday. I am interested in what others are doing. My children cannot swallow pills and are picky eaters...

     

    If you can suggest a brand, dose, and how you administer- that would be great!

     

    Thanx.

     

     

    Dr T told me to get florestor I got it at Costco behind the pharmacy area

     

    I have been known to open probiotic capsules and mix into kefir or yogurt. Normally they are taken on an empty stomach but our DAN! said that this was the next best thing.

  3. Strep does reside in many individuals. A typical person needs to learn to manage ongoing levels of bacteria to remain healthy. Each person has a about pound of bacteria in them. If the immune system is compromised you will have issues managing bacteria. On way to improve a persons overall health is to improve the gut flora so bacteria's are not absorbed into the body. We are attacking that issue with high dose probiotics, Kefir, probiotic drinks, etc.

     

    I agree SF Mom. I believe our 3 backslides over 7 years can attributed to dips in his ability to keep something that I suspect he's long had brewing in check. 3 years ago, with our last episode, I started following the DAN! guidelines which really stress gut health. After drinking kefir everyday for 3 years, he was over it so I let up a bit. He also is tired of taking so many "vitamins" that "none of my friends have to take". He'd been so good for so long that I backed off some elements of the protocol. Several months later, boom, another episode. It's been tragic but it's certainly been educational. I'm thrilled to have Dr. T. in our corner and strongly suspect this kid will be a good responder to Augmentin (which we'll be starting today) based on his abx history but once this strep is beaten down, I will not be backing off my gut protocol again anytime soon and will always ramp up in fall.

     

    SF Mom, could you please define high dose probiotics? We're back to the big gun, Klaire's Therabiotic Detox support but just one per day. I suspect that it needs to be a higher dose during a flare.

     

    Thanks much,

    Gat's mom.

  4. Anybody else think Buster should be running a PANDAS research study at some major university medical center?

     

    You'd get my vote, Buster! Maybe you can apply for some of the Federal Stimulus money?... ;)

     

     

    Agreed! The charting system above does give better at-a-glance data. The flow chart from a few days ago is great, also!

     

    Thanks for all of your hard work, Buster!

     

    Gat's mom.

  5. One of the most difficult things that my son is going through is issues with sleep.

     

    Prior to IVIG (30 days ago) he was having trouble settling down to go to sleep, but he would get to bed at 10:00 or 11:00 vs. 8:00 or 9:00, so I went with it.

     

    Since having the IVIG he is literally up the whole night. He can't go to sleep until about 4:00 a.m. Because he is so exhausted I don't want to wake him up the next morning.

     

    I know this seems completely crazy, but I am just letting this happen because of his healing process.

     

    His OCD symptoms are so much less than they were. I really am able to P U S H him gently through some of the OCD rituals that continue to bombard him.

     

    I have tried so many things to help him sleep, Tryptophan, Tylenol PM, Advil PM, Ativan, Calcium/Magnesium.

     

    What concerns me is that even on the mornings that I wake up early (normal wake up time for other kids), he still cannot get to sleep at a decent hour.

     

    Any suggestions would be appreciated so much!

     

    Thanks,

     

    We have sleep issues, too, when in an exacerbation. My ds16 takes Melatoning 5mg and a couple of epsom salts baths per week. Interestingly, the deeper into a backslide he is, the less epsom salt (mag sulfate) he can tolerate in the bath without becoming itchy (like, crazy itchy). Start low on the epsom salts if you decide to try that. At about 9p, my whole house shifts into night time mode. We don't use flourescent lighting at all but most table lamps get turned down or off. I burn a little lavender in an oil burner, too. When he goes to bed, I put a calming classical cd on in the living room which he can hardly hear. He knows I'm still puttering around the house or sitting in my bed reading and the house remains quiet, all of which help him relax into sleep which seems hard to find at night for these kids. This is one of our healthy rituals that continue on most nights even when PANDAS isn't a daily part of our life.

     

    Best wishes,

    Gat's mom.

  6. I'd recommend the summary at http://www.latitudes.org/forums/index.php?showtopic=6265

     

    and then include copies of some of the referenced papers. The best amongst them are:

     

    [Kirvan2006] Kirvan CA, Swedo SE, Kurahara D, Cunningham MW, "Streptococcal mimicry and antibody-mediated cell signaling in the pathogenesis of Sydenham's chorea". 2006 Autoimmunity 39 (1): 21–9. http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf

     

    [Pavone2006] Pavone P, Parano E, Rizzo R, Trifiletti RR (2006). "Autoimmune neuropsychiatric disorders associated with streptococcal infection: Sydenham chorea, PANDAS, and PANDAS variants". J Child Neurol 21 (9): 727-36. http://jcn.sagepub.com/cgi/content/abstract/21/9/727

     

    [Yaddanapudi2009] K Yaddanapudi, M Hornig, R Serge, J De Miranda, A Baghban, G Villar, W I Lipkin Passive transfer of streptococcus-induced antibodies reproduces behavioral disturbances in a mouse model of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection Molecular Psychiatry August 11, 2009 doi:10.1038/mp.2009.77 http://www.nature.com/mp/journal/vaop/ncur.../mp200977a.html

     

    [Moretti2008] Moretti G, Pasquini M, Mandarelli G, Tarsitani L, Biondi M (2008). "What every psychiatrist should know about PANDAS: a review". Clin Pract Epidemol Ment Health 4: 13. http://www.ncbi.nlm.nih.gov/pmc/articles/P...5-0179-4-13.pdf

     

    [shet2003]Shet A, Kaplan EL, Johnson DR, Cleary PP, "Immune response to group A streptococcal C5a peptidase in children: implications for vaccine development", J Infect Dis. 2003 Sep 15;188(6):809-17. http://www.journals.uchicago.edu/doi/pdf/10.1086/377700

     

    That should tied him/her over.

     

    Buster

     

     

    My ped (who is not much into this pandas thing and definitely not a believer in prophylactic antibiotics) gave me a pamphlet he had on it from uptodate.com ..I am supposed to return it after I read it..... of course in it it says that they don't believe in prophylactic antibiotics for this... it also stresses titers a lot. I want to return it with some of my own stuff but it can't be anything that is a compilation from parents.. he already let me know what he thinks of online research and accuracy when I told him I have researched plenty myself... that some of it is certainly good but so much of it... So anyway I want just a few basic clear articles from respectable people...

     

    What would you pick to give?

     

    I plan on giving him a copy of the stuff Dr. Cunningham gave me with my ds's results because this is not the dr. I really see regarding my son but I can tell I intrigued him enough to get him to look for some info and want to see if I can interest him a bit more....

     

    Thanks! So helpful!

    Gat's mom.

  7. Hi,

    My dd16 is on day 5 of high-dose Prednisone (10 mg) and we've opted to go for a weaning month.

     

    We saw a worsening of symptoms within a day of starting this course, OCD, extreme irritability, head-picking, fatique, day/night flipping, etc. Doc called this a "blip" and we switched from 2xice weekly Azith. to daily Augmenten. For the past 3 days she's also complained of breathing difficulties, to the point that I was calling Doc's office wondering whether ER was needed yesterday. We just kept her under adult supervision at all times, which meant an upopular outing to her sister's swim practice. But at least she did it. Last night she woke us up several times with insomnia, shortness of breath, and continued peevishness. She ended up camping out on our floor so that we could at least get some sleep.

     

    So, my real question is whether these are exacerbated symptoms or just side-effects of the meds? Doc thinks the former, and the breathing issues sound like a panic attack, which makes sense. But still I worry. Anyone else out there have a similar profile or experience?

     

    Everyone, including the dog, (except my husband) has been swabbed for strep. I'm clear. Dd11 has Strep-G (what's that?) and will be tested for Pandas next. Waiting to hear about dog. Anyone know whether bunnies can carry strep?

     

    Thanks,

    Allison

     

    Allison,

     

    Shortness of breath is one of the many manifestations of a panic attack in my ds16. Admittedly, when that one started it scared me to death but inevitably when the panic subsides (which is nearly also with the help of meds) the shortness of breath goes too.

     

    How long have you been on Augmentin? Seeing any benefit?

     

    Best wishes to you,

    Gat's mom.

  8. Keep trying, you have the right phone, the answering machine is not always on. Or it is full.

    You can try his email trifmd@gmail.com as well.

    He's very busy.

     

    Thanks so much. He must be an incredibly busy man, thank God for the work he does. I will try email next as well as phone again later.

     

    I hope your son is doing better!

     

    Gat's mom.

  9. Tantrums-

     

    I am so glad to hear things are going well. I think you will continue to see improvement over the next few months.

    My advice:

    - keep your child on prophylactic antibiotics, and if things look like they are going downhill for 3 days, up the dosage for a week to 10 days

    - keep the stress level low, lots of sleep, good foods- really baby your child for the next year (health wise)

    - avoid all immune challenges if possible: surgery, dental work, vaccinations, etc for at least a year if possible

    - consider having child see dentist for a cleaning every 3 months- do avoid dental work

    - if you haven't, see a pandas specialist. Have a steroid burst (did you do one?) in your cabinet for use if your child has issues after an illness

     

    These are my thoughts, and part of my plan for dd. I think if your child does have another episode, the sooner you zap it with antibiotics and steroids, the closer to baseline she will get. Please keep us posted, especially if things continue to go well.

     

    My ds16 has had 3 episodes in 6 years. Those episodes went largely untreated so they went on way longer than they should have, darn close to a year each one but there were also long periods of time (1-1.5 yrs) where he was completely asymptomatic. Like you, it was surreal to have it be over. I was twitchy, anxious and it took months for me to release a little and start to enjoy life again. As stated above, I was never the same, though and that's not a bad thing. We've simplified our life immensely and embrace the smallest joys daily. There are things I will simply never take for granted ever, like him getting out of the car and school, smiling at me and going on about his day effortlessly. I cannot place a value high enough on such things in my life. Through the good times and now again the bad, I gain a great deal of comfort by looking at some truths. 1. So much more is known, published and publicly available than there was when he first got sick at age 8. 2. I am quietly determined to explore all treatment and educational options for him, regardless of how unpopular it makes me, how many physicians are relieved of their responsibilities in his car or what a nut job/PITA I am to the school system. 3. There are people like momto2pandas who had it herself, recovered (without cutting edge medical care) and live a happy life now. There are Saving Sammy stories, evidence of recovery and as, I believe Dr. T said, this becoming a childhood memory. 4. There are Dr. T's, K's, L's & B's out there now and with each day the opportunity to add to that list grows. 5. The body is an amazing machine with unimaginable abilities to correct and right itself, evidenced when you look at your child now.

     

    These are some of the truths that I cling to when times are dicey and solidify into my belief system when things are good. Enjoy recovery....wallow around in it daily.

    Gat's mom.

  10. My ped (who is not much into this pandas thing and definitely not a believer in prophylactic antibiotics) gave me a pamphlet he had on it from uptodate.com ..I am supposed to return it after I read it..... of course in it it says that they don't believe in prophylactic antibiotics for this... it also stresses titers a lot. I want to return it with some of my own stuff but it can't be anything that is a compilation from parents.. he already let me know what he thinks of online research and accuracy when I told him I have researched plenty myself... that some of it is certainly good but so much of it... So anyway I want just a few basic clear articles from respectable people...

     

    What would you pick to give?

     

    I plan on giving him a copy of the stuff Dr. Cunningham gave me with my ds's results because this is not the dr. I really see regarding my son but I can tell I intrigued him enough to get him to look for some info and want to see if I can interest him a bit more....

     

    I have some similar "skeptics" in my fold, and I put together small binders for each of them. Knowing their sensitivity (okay, let's call a spade a spade: "snobbery") about the quality of scholarly research, I searched the forum here and downloaded copies of the more technical, medical journal articles and research provided by the likes of Suzan, Buster, Vickie and others. The "mouse study paper" was front and center, followed by some of the other available info I found here. I haven't gotten any feedback from either of the doctors since I left that package in their hands (one is the pediatrician, the other is a psychiatrist), but I made a point of opening a few of the articles up myself for the psychiatrist while I was in his office with him because he is a self-admitted snobby skeptic! :)

     

    Actually, I asked my son to leave the psychiatrist's office for a few minutes ("go get a drink of water") while I arm-twisted the doctor to at least open his mind up a bit more about PANDAS in general. He is a tough nut to crack, however. When my son came back in the room, he grinned and asked, "So, did you guys work all that out?!" To which I replied that I was still working on it but it was okay anyway because Dr. B. only had my son's best interests at heart anyway, and so long as he didn't get in my way, I thought we could work around our differences. I added that, "Besides, Dr. B. knows that if he tries to fight me, I will just find another doctor for you!" Which I will, and you can, too! That's always an option, and they should be aware of that!

     

    That little binder of yours would be exceedingly helpful for me right now. I'm sure I'm familiar with some of the work but I have not read the mouse study that I hear about. Could you please give me the titles/authors/journal info on as many of those articles as possible if you have time?

     

    Many thanks,

    Gat's mom.

  11. This is really a tough one. Some sites list symptoms of candida that are so similar to the PANDAS symptoms. I am 42 and have PANDAS, and now that I am taking antifungals, before trying to treat with antibiotics, I am seeing how badly the candida has been affecting me all these years--perhaps since childhood. The GI doctor wants to feed me acid-blockers forever, but why is my body over-producing acid? Suddenly with treatment for yeast, the body stops over-producing acid, just like that, how about that? She even gave me endoscopy and colonoscopy, and I asked about candida, and she said I didn't have it, she would have seen it if I had it. The one thing I can say, don't trust a doctor to know. Really, sorry to say, but the easiest way to know, is to start taking antifungals. Nystatin has quite a reputation for being very safe, partly because it is not absorbed in the intestines. This strength means it also will only treat yeast in the digestive system. It might be a relatively safe first-step, particularly for someone with any kind of digestive issues--food sensitivities/allergies, stomach pain, indigestion, diarrhea, constipation, and so on. There are other antifungals that will get the whole thing. Sensitive to chemicals or smells. If you see genital itching, it's a clue also, but don't know if a child is going to have that. Books like "The Yeast Connection" have a full questionnaire and a long list of symptoms to look for.

     

    I really do think the yeast issue is not considered enough, reading the posts here. Perhaps it is the reason for some children why things don't get better with the antibiotics, perhaps not, but I do wonder.

     

    I have heard there are now blood tests for yeast infections. Perhaps they work well, but I would also consider if you trust the results will be looked at well. I remember wanting chelation, getting a test for the metals, and the doctor thinks I don't need it, the levels aren't too high. Then I take an acid-blocker with aluminum in it (omeprazole, generic of prilosec), and start getting spasms all throughout my body. Yeah, I'm sure nothing to do with having too much aluminum. Maybe he was reading it right for most people, but not for sensitive me. So I'd have the same concern regarding a yeast test for someone with PANDAS/TS symptoms.

     

    Michael

     

    I agree with Michael. Though its so frustrating in our case to know my son should have been treated during the last episode (as I pleaded) for high test abx from our DAN!, it is clear I still learned a lot from my time with him. There are a couple tests for yeast but I know many would say they are unreliable with a large portion of false negatives. Our doc used to go by the symptoms Gat was presenting with and I do believe he was right on the money. We use Diflucan instead of Nystatin and it's worked well for us, historically, though I know many who have great success with Nystatin. There is also a wide array of naturals if you want to adopt the low and slow method of introducing antifungals. (oil of oregano, goldenseal, caprylic acid to name a few). During our good times, we use a few rotating naturals throughout the week. It kept things good for about a year and a half before it all broke loose again. Now with all of his PANDAS symtpoms back (separation anxiety & ocd), I'm seeing the tell tale yeast behaviors as well. It may all be PANDAS, it may all be candida but I'm sure not sitting around waiting to see what develops. Our DAN still insists on maintaining Gat's dose of Diflucan at the same strength he did 3 years ago when he was an emaciated 7th grader. I've asked him to increase his dose which I know from my pharmacist is possible at Gat's weight but he doesn't want to go that high. He's uncomfortable with abx altogether...which brings me here. We have very good gut support in place for 3 years here and he's at a normal weight with good eating and bowel habits so I really believe we've got more than yeast. Titers last time were through the roof and candida can't do that. What I really believe is that we have is a biofilm encasing strep and candida but we'll have to blast some high dose abx to get things stable before we can address that. The protocol for it is pretty easy to follow and from a bacterial/fungal survival of the fittest standpoint, the theory makes a lot of sense. In the meantime, good gut health can't be overstated.

    Gat's mom.

  12. Dear Gat's Mom,

     

    I am just about to start tackling the yeast with my ds12. He just had IVIG 30 days ago and has been on high dose antibiotics for 3 months. I have a DAN dr. that I am working with, but he is so aggressive. He is used to treating yeast with kids that are autistic. My son is not autistic, but I guess yeast is yeast is yeast.

     

    I am afraid to do the anti-yeast treatment that it will do something to his brain that I can't bring him back from. Does that make sense. I know I have to tackle the yeast but even when I have just tried small doses of pro-biotics my son really has a backslide, which I'm sure is from the yeast and I probably just have to ride it out.

     

    I just feel like it is so inhumane. He has struggled so much with this healing process from the IVIG, Old OCD behaviors are storming back at him, cycling throught and then going out. It is so frightening for him that I feel like I need ot give him a rest, but then I'm afraid if I do, he will suffer from all this candida.

     

    The DAN doc wants to do anti-fungals, biofilm, you name it, he wants to throw it at his gut.

     

    Can you offer advice from the perspective of a PANDAS child and yeast?

     

    Thank you,

     

    MomtoCole

     

    My dd went to bed normally as usual tonite about 9:00 and fell asleep within 15 minutes. At 11:30 I heard her in her bedroom laughing hysterically very loudly (I call it the "bats in the bellfree" laugh that she had prior to any pandas treatment -- still haunts me), she was speaking nonsense...I thought she was dreaming. I went in to check and she was wide awake acting completely bizarro. I told her to go back to sleep and that it was very late. She proceeding to continue with the laughing, made up words, potty talk, screeches, squeaks, banging the wall with her foot, occasional "what are you doing, mom?" This continued for over an hour and a half. She has not been like this since last summer at her worst. She then said she was "hot" and came out here to the sitting room where I am. She was all sweaty and flushed and drank a huge glass of water. She seemed pretty lucid, and watched a bit of tv with me. She went back to bed about a half hour later and is sleeping soundly. I had posted a few days ago after reading some threads where kids complained of being very hot as they were perhaps close to or going through conversion. My dd10 has had 5 ivigs treatments and for the past month has awakened in the middle of night very sweaty (she is in light cotton pjs and regular quilt) or in the mornings with that matted damp hair. This has now happened for the 5th time in the last month. "Conversion" is one of those funny words to me in all this...a bit ethereal, and not something that I have read much about. Have any parents further up the chain seen this as their children's brains were healing?

     

     

    I'm unfamiliar with the term "conversion" as used in this group but I can tell you in the DAN! world laughing in their sleep and temperature issues mean yeast. Those moms wouldn't bat an eye at it, would immediately label it candida overgrowth. We saw it a lot in my son during his middle school backslide and sure enough, it and many symptoms went away with antifungal therapy. He's not autistic but that condition also deals with inflammatory and BBB issues and I garnered much good information from those genius parents. Best wishes.

    Gat's mom.

     

    Hi MomToCole,

     

    The DAN!s go after yeast hard which I believe has merit BUT only if the child can tolerate it. If yours doesn't tolerate a probiotic well, it would be my guess that he would struggle with natural or rx antifungals. I see the word "sawtooth" written on this board and I'm not sure but think it may have a similar meaning to a herx reaction or a healing regression. The latter two are the terms used to describe the heightening of symptoms when a new medication or supplement is added. Some folks actually view them as a good sign, I'm not so sure. I think that when the right meds/supps are added at an appropriate dose the patient should feel better, not worse but I could be wrong about that. In my son's case, he never suffered because of the addition of natural and rx antifungals or kefir to his diet. The battle hymn in the DAN! world seems to be "low and slow" wrt adding new meds/supps. Maybe you need to start very low and slow with your son. Have you ever looked at bodyecology.com? There are many natural food sources that are high in probiotics, perhaps thats a place to start and work your way up to probiotics, then antifungals, etc.

     

    I do understand your fear about trying something new and hoping it doesn't do more damage and I'm so sorry that you are going through it. When we have our current backslide under control I will be looking much harder into the biofilm protocol. We actually did 7 days of it but he was already spiraling down and I wanted to simplify everything until he's under control again. I think there is much merit in the logic behind a biofilm as a possible explanation for the strep in our kids that requires so much more medical/pharmaceutical intervention than other kids. A strep biofilm would make sense, particularly but not exclusively, if the child has some possible heavy metal toxicity from immunizations.

     

    In my view the abx, antifungals, IVIG and PEX are the guns in this war but just as important is the background game. Gut, brain, immune & emotional support are very important around here. Little things like our trampoline, epsom salts baths are noninvasive calming measures. Online video games with his friends (especially when he can't make it through a day of school) keep him grounded in his pre/post PANDAS life. He's watching a funny movie in his room right now after a very hard, disappointing day and I just heard him laugh a little...first time today. He should be doing his French homework but I think finding some joy in this day is so much more important right now. Just my opinion.

     

    Remember, low and slow. See if he'll drink an ounce or two of kefir to start.

    Gat's mom.

  13. Hi Gat'smom,

    yes, give the Azith. a whole month.

     

    How much does your son weigh?

     

    Have you tried Advil (Ibuprofen--don't get the recalled stuff though! :huh: )? I would give that as well. Short term, you can give it 3-4 x daily. Give it with food (to prevent stomach upset).

     

    He weighs 150lbs.

     

    Yes, we're doing Advil 400mg 3X per day with food. Long before finding this group and before the research on ibuprofen enhancing rx antifungal activities, I knew it helped my son. Back when he was 12, I'd see a difference in him after a really bad day when he complained of a headache and I gave it to him. His headache went away and overall he seemed calmer. So that's now part of the daily stuff since starting the azith.

     

    Thanks so much for the advice, we'll trudge on for now.

  14. When I had that nasty sinus infection late last year that caused a first-in-many-years resurrection of specific PANDAS symptoms, my doc cut bait after 2 weeks of azith, since it wasn't "getting at the infection," and switched to Augmentin, which did clear it up. It's so hard to decide whether to be patient vs. "throwing good money after bad" with something that isn't going to kill that strain of whatever it is. If you're seeing improvement, though, seems to me that that's a good sign. I don't recall seeing anything get appreciably better with the zith that I took that time. Of course, it was probably easier to assess in my case since the sinuses indicated very clearly whether anything was getting better.

     

    I know I sound like a broken record with the omega-3 fatty acids this morning, but I notice that he doesn't seem to be taking any from your description below. In my view, those are critical - have you given them a try?

     

    My ds16 is on day 7 of azith 500mg. While we're seeing some improvement in him overall, transitions (particularly leaving home) and school are still very difficult. School is downright impossible. He pushes himself to go everyday and then is so angry with himself and life that he cannot get through even first period.

     

    I'm seeing some improvement but not the silver bullet we had hoped for. Is this normal progress after 7 days? Is it at this time that we should be giving Augmentin a trial or is it too soon?

     

    I left a message with Dr. T's office to get a consult. Our kit for the Cunningham tests should be here on Friday. Our DAN! has pretty much thrown his hands in the air and won't rx anything else. I had to call a doc friend to get the 1 month of azith 500mg that I have.

     

    Other than the gut support (probiotics, kefir), brain support (CLO & D3) and stress support (Vit C, Methyl B12), is there anything else I should be doing? Could it be important to remember that as a toddler with CHRONIC ear infections we often had to rely on Augmentin to finally clear it? Might that suggest Augmentin as a good abx choice for him now?

     

    Sorry, I know that's a lot of questions. Like everyone, its so hard to watch your child suffer when I fully believe there is relief available for him, it's a matter of finding it. Buster's flow chart is great, we're at step 9 and wondering if our current dose or abx choice is the right one.

     

    Thanks for any advice.

    Gat's mom.

     

    The augmentin question has been sticking in the back of my head for a couple days. I will give the zith a good two week trial. It would make sense that he might require some time as he was several hard weeks into this backslide with me doing little else other than trying to treat it as a candida overgrowth. Thanks for you input on the augmentin. That sort of information really helps me to weigh things out intelligently.

     

    He takes 2000mg of CLO (cod liver oil) as his omega 3 supp each day. The vitamin D3 that he takes also contributes another 115mg of omega 3. Would you suggest he take more?

     

    Thanks so much,

    Gat's mom.

  15. Gat'smom,

    could I ask why the DAN doc has 'thrown his hands up and won't prescribe"? just curious.

     

    we were at our DAN docs office yesterday, more for a consult on some blood tests my son had recently, and I also wanted to pick his brain on PANDAS. This doc has PANDAS patients, altho he is of the school that titers should be high to show the strep connection. I asked about antibiotics and he said they are just for 'prevention' of strep. I asked 'what if the strep is somewhere in the body and "intracellular" and asked how you get at that, and he said "you can't".......

     

    I'm not agreeing or disagreeing, just relaying what he said.

     

     

    Faith

     

    Hmmm. It sounds like Dr. T. needs to speak at some DAN! conference to set these guys straight.

     

    Faith, we must have the same DAN! In my experience they don't seem to be big on aggressive abx therapy unless there"s Lyme involved. The best I could get out of him was 250 of zith for 3 days, followed by twice per week for a month. It's all we've ever tried for Gatlin and it's the equivalent of a handful of M&M's. I agree that abx are often overprescribed in benign cases but that's no more of an offense than withholding them when there is so much evidence of their benefit in this population. This is our first true trial of abx at the correct dosage in 3 major episodes of PANDAS. I've learned much from our DAN! and respect him but I think his preconceived mindsets about abx are as potentially limited as a regular peds mindsets about vaccines. Thank heaven for Dr. T, K & L and the others.

  16. Hi!

     

    I know we've talked about this previously, but I'm still not clear on what the symptoms might be of over-active yeast production in a pre-teen or teenage boy. Do any of you have experience, diagnosis and/or a list of symptoms you could share?

     

    I recall there were some behavioral aspects ("silliness") and some other potential signs, as well, but since PANDAS symptoms themselves can be such a mixed bag, I'm having difficulty separating the wheat from the chaff, as it were.

     

    Any help very much appreciated!

     

    Here are our big candida flags, all of which became evident when he was 12.

    Acid reflux...worse than I could imagine a child having, complete with brown tongue upon waking some mornings.

    Silliness...laughing more than normal about things...or about nothing at all.

    Laughing in his sleep.

    Difficulty controlling his body temp, he complained of being hot all the time but was never warm to the touch or running fever.

    Craving carbs and sugar more than normal.

    More tics or stimming.

     

    Many of the symptoms our kids have would be defined by others as characteristic of candida overgrowth. Abx and steroid use would just foster more candida. However, you can't blame elevated titers on candida and if it were exclusively candida you wouldn't see improvement with abx and steroid therapies. I do think, though, that exception care of the gut must be taken with our kids when utilizing abx and steroids.

     

    Interestingly, there is some research out there now that talks about adding, of all things, Advil behind Rx'd antifungal therapies as it, for some reason, increases the effectiveness of the antifungal. There are a few similarities in what this group has success with versus how my DAN! doc treated PANDAS in my son in the past. We are currently using azith but are still using fluconazole, too.

     

    Gat's mom.

  17. Gat's Mom-

     

    Try to be patient. It took 30 days on full strenght zith to see something we could call major, sustained improvement for my dd. Much of the recovery is sawtoothed. Some things improve, some may worsen, but the overall weekly trend will hopefully be positive. Unfortunately, still now, I have found I have to look at the week as a whole- not individual days. While dd is still doing really well overall- she will have a pandas-y day here and there.

     

    Buster and EA mom have developed a system where they chart their dd's behavoir. It is broken down to maybe 10 pandas behavoirs, and each one is given a ranking from 0-10 in severity. I never did this- but think it would be so helpful to see the trend.

     

    Thanks so much! That helps a lot. I'm taking notes throughout the day with happy faces and sad and there are more happy than sad since day 2 of abx so we'll keep pushing forward. I appreciate your input.

  18. My dd went to bed normally as usual tonite about 9:00 and fell asleep within 15 minutes. At 11:30 I heard her in her bedroom laughing hysterically very loudly (I call it the "bats in the bellfree" laugh that she had prior to any pandas treatment -- still haunts me), she was speaking nonsense...I thought she was dreaming. I went in to check and she was wide awake acting completely bizarro. I told her to go back to sleep and that it was very late. She proceeding to continue with the laughing, made up words, potty talk, screeches, squeaks, banging the wall with her foot, occasional "what are you doing, mom?" This continued for over an hour and a half. She has not been like this since last summer at her worst. She then said she was "hot" and came out here to the sitting room where I am. She was all sweaty and flushed and drank a huge glass of water. She seemed pretty lucid, and watched a bit of tv with me. She went back to bed about a half hour later and is sleeping soundly. I had posted a few days ago after reading some threads where kids complained of being very hot as they were perhaps close to or going through conversion. My dd10 has had 5 ivigs treatments and for the past month has awakened in the middle of night very sweaty (she is in light cotton pjs and regular quilt) or in the mornings with that matted damp hair. This has now happened for the 5th time in the last month. "Conversion" is one of those funny words to me in all this...a bit ethereal, and not something that I have read much about. Have any parents further up the chain seen this as their children's brains were healing?

     

     

    I'm unfamiliar with the term "conversion" as used in this group but I can tell you in the DAN! world laughing in their sleep and temperature issues mean yeast. Those moms wouldn't bat an eye at it, would immediately label it candida overgrowth. We saw it a lot in my son during his middle school backslide and sure enough, it and many symptoms went away with antifungal therapy. He's not autistic but that condition also deals with inflammatory and BBB issues and I garnered much good information from those genius parents. Best wishes.

    Gat's mom.

  19. My ds16 is on day 7 of azith 500mg. While we're seeing some improvement in him overall, transitions (particularly leaving home) and school are still very difficult. School is downright impossible. He pushes himself to go everyday and then is so angry with himself and life that he cannot get through even first period.

     

    I'm seeing some improvement but not the silver bullet we had hoped for. Is this normal progress after 7 days? Is it at this time that we should be giving Augmentin a trial or is it too soon?

     

    I left a message with Dr. T's office to get a consult. Our kit for the Cunningham tests should be here on Friday. Our DAN! has pretty much thrown his hands in the air and won't rx anything else. I had to call a doc friend to get the 1 month of azith 500mg that I have.

     

    Other than the gut support (probiotics, kefir), brain support (CLO & D3) and stress support (Vit C, Methyl B12), is there anything else I should be doing? Could it be important to remember that as a toddler with CHRONIC ear infections we often had to rely on Augmentin to finally clear it? Might that suggest Augmentin as a good abx choice for him now?

     

    Sorry, I know that's a lot of questions. Like everyone, its so hard to watch your child suffer when I fully believe there is relief available for him, it's a matter of finding it. Buster's flow chart is great, we're at step 9 and wondering if our current dose or abx choice is the right one.

     

    Thanks for any advice.

    Gat's mom.

  20. Hi, I am so sad today. We go to a private school and my daughter's teacher told me she could not send her on to third grade unless something changed with her focus. It is not an academic problem, it is strictly focus. She cannot perform in class and she is holding the others back because she takes so much time to get her work done. I do understand because I have the same problems at home with homework. What should take 1 hour, takes us 4 hours.

     

    Could y'all share with me if your children takes anything and if it works well and side effects you experience. My daughter has a tendency towards tics so I don't want to do anything to aggravate that aspect.

     

    I don't feel my son is a good candidate for stimulant therapy (adderall, etc) for attention and focus issues and neither did his DAN! doc. We use P5P (a form of B6) in conjunction with L-tyrosine (an amino acid). We also use pycnogenol (a type of pine bark extract). All are found at our local health food store. Not sure of the dosing schedule for P5P and L-tyrsonine (he takes 50mg & 1000mg) but I recall the dosing for pycnogenol to be one mg per pound of body weight.

     

    Gat's mom.

  21. For my 12 yr old son it is the guitar. He taught himself how to play two summers ago on YouTube. He started with his tics/OCD in September '09. After all this time trying to figure out what is going on, the guitar has helped him. I even have him taking classical guitar lessons. He still has a defiant attitude of not wanting to take them but after every lesson he's glad he took it.

     

    He's now on CEFDINIR 300 mg twice a day. AMOX-CLAV 875 mg twice a day didn't work out. He was starting to feel rage come on and he told me. This kid is very passive ... someone who's a peace maker. He was able to tell me that this was going on and I called the doctor. He switched him to CEFDINIR. So far so good after 3 days. Keeping my fingers crossed.

     

    I never thought about YouTube for lessons. Mine wants a drum set bad and I know any form of movement helps him. He doesn't want lessons but wants to know how to play. Things are too dicey, emotionally, for me to commit him to lessons of any kind right now BUT if he could find something on YouTube that might get him started. Thanks for the info about your lad and how nice that you have a doc whose responds so quickly. Hope the good holds for both of you.

  22. I just thought I'd throw out there that during our last exacerbation at age 11, our back yard trampoline became the most effective form of therapy in our arsenal..keeping in mind that I could not get a doc to rx abx, steroids or anything else other than ssri. He's 16 and spending less time on it, though this is the first nice day we've had since he really slid backward. I strongly suspect he'll be out on it later today. But back in the middle school days, in ALL weather conditions, he would go out and jump straight up and down (no flips or the usual acrobatics he's capable of). He'd face away from the house and wear it out for 15 minutes. When he'd come back in he'd be calmer and more focused. When we first met out DAN! doc (our first free thinking doc) I mentioned this to him and he was not surprised to hear it. He summarized to me that when his feet hit the canvas it serves to balance him from a neurological standpoint. Gatlin has lots of outdoor entertainment at his disposal but the trampoline was where he'd head the minute he felt bad.

     

    Just thought this might be another tool to add to everyone's toolbox.

     

    Gat's mom

  23. I've seen a couple parents post that they wonder if they had/have PANDAS. I'm wondering how many wonder this and why.

     

    As for myself, I had tonsilitis over and over again as a child. They stopped testing me for strep, but would give me antibiotics (penicillan) every times my tonsils were covered in spots. I remember having OCD tendencies as a child, I remember misbehaving a lot, not listening, major fights with my mom, even me being physical. Looking back I can't remember how bad I behaved and my mom passed away so I can't ask for details. At one point I was agorophobic. But, I've been tested for strep as an adult and never had a + test.

     

    I've had a neurological issue in the past that involved inflammation of the optic nerve. It makes me wonder if that means that I am prone to inflammation problems.

     

    Some OCD and OCD spectrum disoders run in my family. My cousin was a strep carrier that never got cleared-her brother has BDD. There are a lot of autoimmune disorders on my mom's side of the family (same side that has the OCD issues). An example is my mom had horrible RA and dermatomyocytis.

     

    It just makes me wonder. For awhile I've "just known" that PANDAS comes from my side of the family (not my husband's), but I never quite put the dots together to think that maybe, just maybe, I could have had it myself.

     

    I had way more intrusive thoughts than most kids and I had some rituals that made them easier to manage for me. I hid them growing up, my parents would never have understood. They are only now just starting to understand as their grandson goes through it (far worse, though, than I ever did).

     

    Interestingly, the day before his first titers were drawn 3 years ago confirming diagnosis, I had him in to see an herbalist in our town. I was seeking answers anywhere and the allopathic medical community had let me down on a grand scale at that point. She did applied kinesiology on him and he tested very strong everywhere except when she puts two fingers on his clavicle and he couldn't begin to resist her pressure on his arm. She turned to me and said in her British accent, "The boy is covered up with strep." She knew nothing of me discovering PANDAS online, she only knew I had a 12 yr old who was paralyzed with fear out of nowhere. As we discussed further and it came to her attention that he had NEVER been diagnosed with a classic strep throat, she asked about his dad's and my medical history. In discussing our childhoods I mentioned that mine was uneventful save for recurring urethral strictures from 16 mos til about age 8. She immediately shook her head and said, "Did you know almost all urethral strictures are strep related?" No, I didn't know! It's her belief that I may have passed this on to Gatlin though he had enough ear infections in the first two years of life to support that theory, too.

     

    At this point, I don't believe removing his tonsils would solve our problem and I suspect he may have never been fully clear of strep, a condition that this herbalist says is rampant among those with even manageable quirkie behavior. In my head, I keep coming back to a strep biofilm and a BBB that, for whatever reason, is too porous.

     

    Gat's mom.

  24. If he has allergies, that may be causing that weird feeling. Also, if the house is even a little dusty, he could be getting little pieces of dust caught in the hairs in his nose. Sounds funny, but that's what it would feel like...like baby powder in your nose. Change his sheets and pillow case too. My ped said dust mites are making it big this year.

     

    Hi Vickie,

     

    He hasn't complained about it at all today but I'll be changing his sheets in the morning regardless and giving his room a good dusting. There has been a little chatter in the group about allergies as PANDAS triggers. This backslide started shortly after what appeared to be a virus of some kind. Gatlin has never (in 16 yrs) been diagnosed with strep throat but has high titers. All of his episodes come on the heels of a "virus". Since he, historically, doesn't backslide after a cold or after some little viral assaults, I've come to believe that those 3 "viruses" over the past 6 years that brought him down were likely strep. However, I should also mention that this last backslide coincided perfectly with a major flooring renovation at my house. 10 year old carpet was ripped out of the entire house and laminate was put down. He got sick right along side the carpet coming out after being well (no ocd/anxiety) for a year and a half. Coincidence?

     

    Gayle

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