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GatsMom

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Posts posted by GatsMom

  1. Hi there,

     

    I have only been lurking for the past month because things have seemed so bleak over here. However, we may have found some new pieces to our puzzle that are helping our DD4. I wanted to post it for everyone in case it could help anyone else. I'm putting a link to my blog to keep it concise. If anyone has any questions, please let me know.

     

    http://pandasmom.wordpress.com/

     

    Great blog and I'm with you on the anti-inflammatory piece. Have you tried the omegabrites that momto2pandas really likes because of their 7:1 EPA/DHA ratio. We switched to the a few weeks ago and have seen some nice gains. At the time it was the only new thing we'd added having taken away abx and antifungals because of the state of his stomach. Enhansa was added yesterday at a very low dose. Your approach makes sense to me and I'm sure sorry for the rough time you've had lately. Hang in there!

  2. I am sorry things have felt so bleak but I am very glad you see some light. It is interesting since I was just reading up on Curcumin and Tumeric tonight looking for some answers myself since I have been so down lately goo. I consider it a sign and I will give it a try. Thank you for sharing what you have learned and good luck!

     

    Susan

     

    We just added organic tumeric to DS13's supplement regimen about 10 days ago, and so far, so good. He's taking so many supplements in addition to the abx, it is difficult sometimes to acknowledge any particular effect as being tied to any particular addition, but he's definitely feeling better and behaving better! Thanks for the blog!

     

    Yesterday was our first day of Enhansa (enhansed curcumin supp). I'm starting slow at 75mg once per day. According to Lee Silsby's diagnosing schedule it should be 150mg once daily for the first week but I'm cautious about die off in a kid who already has a lot on his body's plate. How much are you giving your ds13?

     

    Gat's mom

  3. Thanks for everybody's interesting thoughts and experiences. Sounds like from your feedback, my best guess is this is a bit of a detox reaction from really bumping up the antifungals following the antibiotics. I have been totally grain free, and no peanuts or pistachios, and no yeasts or fermenteds or vinegars and so on, only very occasional small amount of grapefruit or granny smith as far as fruits are concerned, and on and on, really feel like I've eliminated about all that I can as far as that goes. I have even tried swooshing the mega-doses of nystatin in my mouth for a while before swallowing, not sure if it helped or not, but it's still there. Don't use the kefir/yogurt products, but will definitely try the coconut oil swoosh, sounds delicious. Timing wise, ugggh, literally just back from an NAET session where we treated essential fatty acids and got instructions to avoid all oils for the 24 hour period, so, that'll wait until tomorrow! Perhaps can try swooshing on the tongue the probiotics I do take, since I empty the powder from capsules anyway.

     

    Gat's Mom--Regarding the acid reflux and yeast overgrowth issue, I suffered with acid reflux for over 20 years, it just got worse and worse and worse with time. Finally went to a GI doc, asked if it was candida or anything like that, she did endoscopy and colonoscopy, diagnosed hiatal hernia, said nothing like candida as she would've seen it. I started on antifungals a couple/few months ago, have needed extremely large doses and made amazing progress. Acid reflux is completely gone except for occasional night when bump up nystatin dose and get die-off reaction. I can attest to the acid reflux, at least sometimes, being really caused by fungal/yeast infection, contrary to the lame story the GI doctors sell that your body just making too much acid, because it's just too darn stupid to know when to stop. Given how popular these drugs are, methinks that half the population can't have bodies that are just too darn stupid to know when to stop. By the way, all of these proton pump inhibitor "acid blockers" like prevacid are low-grade antifungals, and this may be some or all of the reason why the have the very limited positive effect they do.

     

    Michael

     

    Wow, Michael, I had no clue prevacid had an antifungal quality to it! Gat does well as long as we don't skip probiotics and prevacid. I should mention in keeping with the topic that Dr. T brought up a few days ago, the only time we have reflux/yeast/gut issues is when he's in a PANDAS/PITAND exacerbation. Chicken or the egg?

  4. This is something I've started to wonder about again lately. As I mentioned in a previous post, I had documented issues associated with EBV infection 20 years ago or so. Now I'm getting sore throats, etc. every month and I've been assuming that it's strep or some other bacteria I'm not kicking, but I'm wondering if it's EBV coming back to haunt me. I was doing some research on IgG Subclass 3 deficiencies after I got my kids' results (and mine, which are also low but in the normal range for this). Apparently, there is evidence that EBV can cause such immunodeficiencies. IgG3 apparently deals a lot with viruses.

     

    My kids haven't been tested for EBV. They've definitely had bacterial infections based on the green nose slime and (at least temporary) response to antibiotics (though this could just be their antiinflammatory effect), but with the persistent high lymphocytes even after antibiotic tx and with the IgG3 deficiency, I'm thinking that there could be something viral going on too.

     

    From what I can see, that creates a very difficult boat to be in - virus creating an immunodeficiency that makes you unable to fight the virus or other infections. Then what do you do? Literature suggests some evidence for utility of IVIG.

     

    I'm going to look at Chemar's suggestions.

     

     

    I've read a couple of posts (including one from Dr T) mentioning EBV as a possible trigger for PANDAS, but can't find any good info on this. I am very interested in this as this is the one thing my son HAS tested positive for recently, though he never had mono. Does anyone have any links or info on this possible connection?

     

    momto2,

     

    I would definitely give a trial to L-lysine given what you wrote above! It gets some good press in the fibromyalgia world where EBV is prevalent. I always have it in my house and at the first sign of anything viral, I ramp it up. I have a 94 year old client who says as a child she and her siblings were made to take it all winter long.

     

    btw, thanks a million for the lead on omegabrite! We started on 2/21 after a horrific backslide that forced us to give up Biaxin for myco p. Some days are still way less than optimal but he's tolerating the omegabrites (3 per day) well and I believe they are having a good effect as he's showing improvement and that was our only new addition until yesterday when we started Enhansa for more inflammation control.

     

    Gat's mom

  5. A few days ago, I ended up with this slightly furry looking yellowish-greenish stuff on the top of my tongue, covering a lot of it. I had really strange breath and it made food taste really weird for that day. After the one day, it has diminished, the breath and tasting issues are gone, but it is still there. This came about 5-7 days after stopping biaxin, and just a couple days after bumping up the antifungal nystatin dose, so kind of wondering if it could be fungal or bacteria related. I have seen internet pictures of candida growth on the tongue, and it was white, but otherwise similarly gross. Has anyone had anything like this? Any guesses on what it might be? Kind of wish my doctor hadn't blown me off on Monday, he would've got a good luck at it!

     

    Michael

     

    My son will sometimes wake with a brown tongue that can be anywhere from just the back of his tongue to covering it. He reports a bad taste and can tell me its brown before I even look. It always coincides with the symptoms we call acid reflux but that our DAN! doc used to call yeast overgrowth. In my son's current state, if we miss one day of probiotics or prevacid 20mg before bed he'll wake up with it. It's interesting to think that he was dealing with it last weekend and many times during his middle school experience and in neither of those cases were abx being used. In my kid, it's a good barometer of the fragile state of his gut on any given day.

     

    Gat's mom.

  6. Thanks everyone for the support. I managed to take one epsom salt bath. I'll run the probiotics at 4am by my mom but the only issue is that I typically dont fall asleep till past 6:30 in the morning.

     

    Excellent job on the epsom salt bath! Count that as a score for you. Wow, you're up all night? If sleep is a big issue right now, maybe there is a better time for the probiotics. I was thinking about you today and wondered, since the probiotics have been tough on you in the past that maybe even starting with a very small child or baby's dose. Any is better than none and you can work up from there as your body gets accustomed to it. Keep up the good work!

  7. I'm pulling this question from Worried Dad from another thread because I wanted to see what ideas everyone has on ADHD -

     

    "has your son started exhibiting any ADHD tendencies? Since the OCD has receded, this has become more of an issue for our son: difficulty sitting still, focusing, concentrating on homework for any length of time. Have you seen this?"

     

    When we had a setback in January, my son had terrible ADHD/OCD mix. One day, the kids were supposed to work on independent work for 30 minutes and the teacher emailed me, saying that she could not get my son to concentrate for more than 30 seconds at a time, despite constant reminders. When I asked him about it later, he told me he kept having the sensation that someone was staring at him and he had to keep "checking" and looking around the room to make sure no one was staring. As soon as he started back to his work, the feeling/compulsion would come back. So this was OCD presenting like ADHD. Other times during homework, he seemed to have genuine ADHD and could not stay focused - very frustrating for both of us.

     

    We started a prednisone burst and things got better. But in the interim, I met with the teacher and we talked about OCD and ADHD and Pandas. I explained to her that my son isn't really motivated by "pleasing others". He has never really cared about pushing himself beyond his comfort zone just to make someone else happy (unlike my daughter, who lives for praise and affirmation). I also explained that when you're sick, the things that work to motivate "regular" kids don't work as well. The teacher had gone home the day before with a stomach bug. I said "When you felt horrible, you wouldn't have been motivated to stick it out just because someone would compliment you. You went home. But if the reward for sticking it out was $1000 or a week's vacation, you probably could've forced yourself to make it through the day." When you're not feeling well, sometimes the rewards have to be higher to get you to push through the hard stuff.

     

    So we developed a reward system to help my son with his ADHD. My son and I developed a "menu" of items he could buy with "attention points" - points the teacher would give him every time he stayed on task. 8 points would buy an ICEE at the grocery store, 20 points would earn him staying up late on a Friday night or being able to eat junk food for breakfast, 50 points earned him a family trip to the ice skating rink. So if he had a bad week and only earned a few points, he could still get a reward. But if he really tried and was willing to "bank" his points over a few weeks, he could earn something really big (he generally earned 3-5 points per day). Of course, things got easier as the prednisone kicked in and the PANDAS went away, but he was still rewarded for learning to fight back and take ownership of his actions as best he could. Praise or stickers wasn't going to cut it.

     

    We use a similar reward system for ERP, with different rewards. I was wondering what other things parents do to help with either OCD or ADHD...

     

    I'm all about the reward system but there was a point at the tail end of my son's middle school exacerbation where all of the reward in the world couldn't help him to focus of keep from being impulsive. Our DAN! suggested using P5P and L-tyrosine and we also added pycnogenol. All naturals and they worked pretty well for him taking the edge of the impulsivity that really causing trouble in the classroom. We used a blend of the reward system that was geared exactly toward what he was capable of achieving in combination with the naturals and got through 8th grade. Hope that helps.

  8. Feeling a little discouraged and overwhelmed today. Started thinking back to Oct. when I started this renewed PANDAS investigation. Here's the rub:

     

    Ped 1: Sinus infection - go see allergist

    Psych 1: PANDAS - you need to see a specialist - I can only prescribe psych meds

    Specialist 1 (email) - PANDAS - you need IVIG yesterday

    Ped 2: No sinus infection - oops, xray shows there is, you were right - see allergist

    Allergist: no allergies, no immunodeficiencies - see ENT

    Specialist 2 (phone consult) - not PANDAS - see an immunologist as to why he's sick so often

    Psych 2: maybe PANDAS, but that's just a theory anyway - try new psych med

    Ped 3: Sinus infection is cleared, sorry he's getting sick so often, he may just be unlucky

    ENT: Chronic sinus infection - lets do surgery!

    Specialist 3: no, not PANDAS, maybe seizures?

    Specialist 4 (phone consult): yes, PANDAS - lets treat for Myco P (though we're not sure he has an active infection)

    Specialist 5: not seizures, lets do PET scan, but only do IVIG if its positive

    Specialist 6 (phone consult): sounds like PANDAS and chronic sinus reinfection from family. need to treat all of you but dont do surgery.

     

     

    Do you see how a person might go a bit nuts from all this?! All these doctors and all these different opinions. I feel like I'm spinning in circles. I have daydreams of an inpatient hospital I can take my son to, where I can check him in and stay with him (unlike the psych ward) while the developmental pediatrician, the nutritionist, the neurologist, the immunologist, the ENT, the infectious disease doc,the lyme specialist, the psychiatrist, the ERP therapist all take their turns evaluating my son and running their various tests. Then they meet in one big room together and hash it out, and come back to me with ONE diagnosis, ONE treatment plan. And then he stays there while the treatment is done so THEY can observe if their treatment is working, and rehash it together if it is not. No questions of who to trust, and who not to. No dead ends. (oh, and of course this fantasy hospital will be in Miami and have a luxury condo for the parents to hang out in next door while their child is treated, and daily massages to ease our stress will be matter of fact included in this hospital program that is, of course, fully covered by insurance) OK - now I really am dreaming. It just shouldn't be this hard...

     

    In the world of oncology, a multidisciplinary think tank like you describe above happens all the time in the hospital I'm affiliated with. It's called a tumor board and all new cases are brought before the board for all to review and comment upon. I happen to be that massage therapist that you also mention who works on patients and families in a tiny oasis inside the hospital. There is every reason to believe that cases like our kids will someday soon be reviewed in such a way, approaching treatment from a variety of angles. There are docs like T & K and the technology exists. We need a few more players for this dream team but I know they will come with the press this condition is starting to receive.

     

    Hang in there, you really are doing a remarkable job!

  9. We have an interesting story. I am posting here in reply to your comment about inflam. bowel disease just because this is our most recent experience. I will outline in order to shorten this:

     

    -boy, now age 11

    -history of early uri's, starting age 3 months with that being first antibiotic therapy

    -severe ear infections, pharyngitis, tonsillitis

    -confirmed strep throat at age 2

    -dx of Coats' Disease at age 3, with loss of vision in 1 eye following two surgical procedures

    -from age 2 onward, behavior changes

    -first noticed repeating of words about age 3

    -age 5 first motor tic episode, head to toe, extremely violent torso stretching, trunk twisting, with symptoms resolving in weeks.

    -1 year long battle with severe tonsillitis, pharyngitis, now starts bowel problems (encopresis)

     

    -at age 6, one year later, sudden onset head to toe motor tics, followed by first vocal tics within two weeks of motor tics

    -tics lasted from April until July, when he was treated with nystatin and yeast elimination diet- symptoms resolved between July and August.

    -encopresis, night terrors, sleep disturbances, anxiety, phobias, social probs persist

    -trichotillomania persists for duration

    -no sign of tics other than eyelash pulling until 2009

     

    -2009, December, motor tics and vocal tics appear suddenly overnight, including severe coprolalia, echolalia, signs of autism (no eye contact, inability to follow a command)

    -severe bowel problems

    -is withdrawn from school since tics render him nonfunctional

    -stool sample tests positive for Clostridium difficile, immediately placed on Flagyl, then Vancomycin

    -within 24 hours, tics diminish, and continue to do so until all are gone within two weeks.

    -tics that exploded in late December are gone by February or early March.

    -symptom free for one year now

    ???????????????????????????????????????????????????????????????????????????

    PANDAS?

    C. diff?

    Mycoplasma?

     

    Wow. Has to at least have you thinking about Chemar's quote by Pasteur that indicates its less about the microbe and more about the terrain. I have said for 4 years that 99% of what I do for my son is in an effort to "level the playing field" so that his body can right itself.

  10. I was on Biaxin for ten days with no results. I have also been on zithromax for 3 months with no results and augmentin for 1 month also with no result. I got my blood tests back yesterday. I had "highly significant" levels of mycoplasma pneumoniae as well as an IgG 1 subclass deficiency. I also recieved my CamKinase II results back in November at the level of 200. The only relief I have had from my symptoms was from a 5 day burst of steroids and a month long course of steroids. I gained about 4 weeks of my life back but they wore off about 1 month ago and my life has gone down the toilet again. I dont want to go back on the steroids because the side affects are so awful. My stomache is now in a wreck from all the pills I've taken. I am now on tylenol-codine for my physical pain as well as advil. We're going for an IVIG but insurance has denied it, but hopefully since we found this subclass deficiency I can finally get it. Hope this helps.

     

    PANDASkid.

     

    thank you for posting

     

    were you on a high enough dose for your weight?

     

    i believe aug wouldn't help at all...zith might, but i not sure if you were on biaxin long enough,depending on how long you had this and your current age..

    from what i understand looking at the one study...they did 2 months of abx...and some say 6 months or longer and you may want to rotate other abxs

     

    i also understand you may now have some other underlying issues...

     

    keep in touch

     

    And add LOTS of high test probiotics far away from antibiotic dosing. Have you tried epsom salt baths for pain and anxiety? Sounds benign but they really can help.

     

    Gatsmom,

     

    Thanks for the advise! I've been drinking lots of milk and have alot of yogurt. I was on probiotic supplements too but have stopped taking all my supplements cause they hurt my stomache. My mom loves the herbal and natural approaches and also encourages me to take epsom salt baths but I have extreme difficulty with things like showers and baths as well as brushing my teeth. Normally I am very clean and like to look nice but I cant keep that up when Im sick. Any advice on that front?

     

    Thanks,

    PANDASkid

     

    Wow, you are beautifully articulate for your age! How about a foot soak with epsom salts and working your way slowly up to a bath? One tiny step at a time. I wake my 16 year old up very early in the morning (like 4am) to take his probiotics, he's up for 30 seconds and rolls over and goes right back to sleep. They are long digested before he wakes up for good. I wonder if that might help with any stomach upset. My son has a very, very sensitive stomach when he's in a PANDAS exacerbation. Maybe run that trick by your mom and see what she thinks and start slow with your dosing. My son skipped early a.m. probiotics for the past two days because he had a friend at the house overnight (a miracle in itself) and woke today with stomach pain and a brown tongue all over again.

     

    You hang in there and good job being so proactive in your recovery!

  11. My daughter, 7, has been on Biaxin for just two weeks, and has had really really remarkable progress. She's being treated currently for mycoplasm.. Just last nite I spoke of her here, with fear and hope in hand. Because you never know, from one day to the next with these children. When she woke up today, she had "the look" - the red circles under her eyes, and I kind of felt it early on - not going to be a good day. And it wasn't. On a scale from one to ten of improvement, she measured in at about 3 today. She went shopping with my Mother-in-Law and myself for a dress for her Communion, and flipped out about hating God and how she's NEVER going to receive it. "God is just a big fat idiot" her familiar line returned along with one really loud "JESUS CHRIST" - along with this she acted really really hyper - not really paying much attention or interest unless she really wanted to - and settled down, finally, on our ride home. Tonite, while at a visit with my sister, she started up again, really screaming at me and her cousin. Sigh. I'm just so frustrated. I'm not looking for a miracle here - I know to expect good and bad days. But it was sooo good. And today was all too familiar on the bad side of things. I swear, though, that "look" speaks volumes. That is their body saying "Help. I'm just not right." I wish I knew how to.

    Thanks, everyone.

    Noelle

    Hang in there. My dd had one bad day a few days ago and then is back to her new and improved state, over all. A little difficulty here and there but much improved over all.

     

    Angela

     

    We're having the same experiences as Angela. I know for both my ds16 and I, those backslide days that come after a string of good days are PARTICULARLY difficult. Do your best to hang in there. Her body is doing its best to recover itself and she will forget about today likely far more quickly than you will. So sorry about what you are going through! Been there and tomorrow could be a much improved day for you both.

     

    Gayle

  12. Interesting. This patient was strep antibody negative. Not clear if she was tested for mycoplasma

     

    http://psy.psychiatryonline.org/cgi/reprint/50/4/425

     

    Is there any parent who may have a child or a history of Crohn's or other inflammatory bowel disease?

     

    Dr. T

     

    Dr. T,

     

    During his middle school exacerbation, Gat failed to have a solid BM for over a year. It coincided precisely with his PANDAS (or, in retrospect, likely PITAND) episode. He was never diagnosed as Crohn's, the DAN! doc attributed it to leaky gut, yeast and inflammation. As he healed, emotionally, his gut healed right along with him. During his 18 month reprieve before this exacerbation, he had no gut or bowel issues at all. The beginning of our current exacerbation brought about the same gut and bowel issues again though they, like everything else, have stabilized in the past couple weeks. We have MS, trigeminal neuralgia and vocal tics in the family tree (maternal grandfather for TN & tics and his brother had MS). We can definitely link Gat's bowel issues to PANDAS/PITAND episodes.

     

    Gayle

  13. I know you probably posted this somewhere, but did he have a flare in symptoms first as a result of possible die off? I need to just start a poll abut mycro P kids and what they experienced.

     

     

    So, what seems to be the timeline for Biaxin and Mycro P? How long did it take everyone before they saw signs of improvemnt and realized it was working?

     

    Within 3 days for us and Gat is IgM and IgG positive.

     

    I view the cough he was having as a die off or herx to the biaxin but the stomach stuff was really unlike what I'd expect to see in an abx driven die off unless it was treating an infection of the gut. We couldn't have carried on any longer at that particular time even if it was die off without some sort of mood stabilizing meds and serious pain meds for the gut (which would have brought about another whole set of probs). As I've said, I would LOVE to see him give it 7-10 more days on the biaxin XL but I can shove them down his throat. We are seeing good things now and I credit the week of biaxin complemented by what we're able to get into him now.

  14. Awhile ago I inquired about using echinacea and someone said they were told it is an immune booster and may not be a good idea to take with an autoimmune disorder. I quickly looked it up and did see some people (not PANDAS) who had an autoimmune idsorder did have flare ups aftre using echinacea.

     

    I saw that, too, Vickie and Gat would normally be not be considered immune compromised but I will say that when, now and historically, we've done things some small moves to strengthen his immune system he doesn't show any worse for the experience. So far, we've had no negative backlash from the echinacea and OLE (except the occasional burp back taste) but we're only on day 4 of it. OLE started a few days before.

  15. I was on Biaxin for ten days with no results. I have also been on zithromax for 3 months with no results and augmentin for 1 month also with no result. I got my blood tests back yesterday. I had "highly significant" levels of mycoplasma pneumoniae as well as an IgG 1 subclass deficiency. I also recieved my CamKinase II results back in November at the level of 200. The only relief I have had from my symptoms was from a 5 day burst of steroids and a month long course of steroids. I gained about 4 weeks of my life back but they wore off about 1 month ago and my life has gone down the toilet again. I dont want to go back on the steroids because the side affects are so awful. My stomache is now in a wreck from all the pills I've taken. I am now on tylenol-codine for my physical pain as well as advil. We're going for an IVIG but insurance has denied it, but hopefully since we found this subclass deficiency I can finally get it. Hope this helps.

     

    PANDASkid.

     

    thank you for posting

     

    were you on a high enough dose for your weight?

     

    i believe aug wouldn't help at all...zith might, but i not sure if you were on biaxin long enough,depending on how long you had this and your current age..

    from what i understand looking at the one study...they did 2 months of abx...and some say 6 months or longer and you may want to rotate other abxs

     

    i also understand you may now have some other underlying issues...

     

    keep in touch

     

    And add LOTS of high test probiotics far away from antibiotic dosing. Have you tried epsom salt baths for pain and anxiety? Sounds benign but they really can help.

  16. Well, we got the test results back yesterday, are now officially part of the growing positive Myco Plasma IgG group (negative IgM). I wanted to ask if anyone who has tested pos. for MycoP igG and has their child taking Biaxin - how are they doing? The only updates I've seen so far is 2-3 days in. So if your child has been on it longer and you could share, I would so love to hear any changes you've experienced. I'm also wondering - is there anyone out there who has been tested for Myco P and it has come back with negative/normal IgG???

     

    My ds16 was on 7 days of Biaxin 500mg twice daily. This came immediately on the heels of a couple weeks of Azith and 16 days of Augmentin 1000mg XR twice daily. We had to abandon the Biaxin on 2/18. His stomach was a train wreck. Dr. T. promptly called in Biaxin XL at the same dose which is supposed to be easier on the gut buy my son, who has never refused medicine, absolutely refuses to take it. I can tell you that while we were taking it, we started to see good changes in all areas where he struggles by the 3rd day. I was so happy about that but his gut continued to deteriorate. One thing I can also share is that we did see a cough develop that really freaked my son out. It didn't happen after all doses, but it did happen after some and would last about an hour. You may not see that in the IgG positive kids, my son was positive for IgM & IgG.

     

    We've now had to drop back to plan B, treating with all naturals addressing myco p as well as gut & brain inflammation, immune support & sleep support. The 7 days of biaxin did help though and he is continuing to make slow progress using the all natural route. I'm hopeful as he improves he will consent to 10 more days on Biaxin XL. Our short time on the biaxin was the ONLY time we have ever seen a positive result come that fast.

     

    Hope that helps,

    Gat's mom

    May I ask what naturals you are using to treat instead of the Biaxin? I am currently on Biaxin for a sinus infection but have asked the doc to switch me to a Z-pack b/c of the stomach pains, diarrhea, and headaches I've been having. I am on day 4 and I just can do no more! I am taking heavy duty probiotics and a probiotic drink as well as trying to keep my diet simple ie; pasta, rice, sourdough bread, etc.

    By the way, I'm usually on the tics/tourettes side as my son has a tic disorder and I will possibly be looking into PANDAs if he has another episode like he had last fall. He had some bedwetting, sleep disturbances, and major anxiety. It's taken me until now to realize that we might have a mild case of PANDAs going on. What I can't understand is that he's so normal otherwise except for the tics. OK: how did I get off topic, LOL!???? Anyway, if you can provide me with info. for cleaning up an infection naturally, I'd love to hear about it!

    Thanks,

    Bonnie

     

    Hi Bonnie,

     

    The echinacea was the suggestion of our herbalist after she checked her references for a natural that acts as a macrolide (the biaxin class of antibiotic). The olive leaf extract was my suggestion after I cross referenced her echinacea suggestion online and found almost as much mention of olive leaf as echinacea for myco p. Since we have history a couple years ago of OLE really helping with his ocd behaviors and the two are not contraindicated we are doing both. I will say it again though that the 7 days we had on biaxin definitely did help and possibly set the stage for the naturals coming in and continuing to help. He continues to improve overall daily right now. The occasional moment of panic but they are significantly less than 2 wks ago. I've also been doing a serious amount of reading on inflammatory cytokines and what can be done about them. I'm really excited to be given Enhansa a try starting as soon as it arrives. I firmly believe that the steps we're doing to decrease inflammation are as valuable as anything now that the infection piece seems to be at least stable. Enhansa is our next big assault on the cytokine storm that Dr. T. talks about and my herbalist has been saying for months.

     

    Gayle

  17. I call the patients who ONLY show p41 IgG/M positivity "Lyme-like illness" just to keep an open mind.

     

    I'm aware this could be Borrelia burgerdorfi (Bb) Lyme disease. In fact, with this finding it's our obligation to do the best we can (and it's very hard, I know) to rule Bb infection in our out.

     

     

    However, p41 is a very interesting protein. It is called FLAGELLIN, so these patients have anti-flagellin antibodies.

     

    The p41 is a major component of the bacterial tail found in those bacterial that are flagellated, i.e. have a motile tail, similar in function to that on a sperm cell.

     

    Now p41 is found on many bacteria that (seemingly) have nothing to do with what generally think about. It is NOT found in streptococci or mycoplasma, so infection with those can't be confounding this result.

     

    Spirochetes, in general, are flagellated, so there are many possible non-Bb candidates.

     

     

     

    BUT THE PLOT THICKENS ...

     

     

    p41 is found on many enteric (pathogens such as Campylobacter, Giardia, etc.)

     

    The interesting thing is that the immune response to p41 is HIGHLY specific. p41 activates Toll-like receptor #5 (TLR5), and another (minor) pathway. Furthermore, p41 is the only known activator of TLR5.

     

     

     

    Recently, it has been shown that TLR5 knockout mice develop severe colitis. It is now widely believed that the physiological function of TLR5, which is highly expressed in gut endothelial lining, is to protect us from nasty food-borne bacteria.

     

    http://www.ncbi.nlm.nih.gov/pubmed/18066550

     

     

     

    Now, is there any example of a flagellated enteric pathogens leading to a NEUROimmune response - absolutely! Camyplobacter is the major cause of Guillain-Barre syndrome (don't worry if you don't know what that is)

     

    http://www.ncbi.nlm.nih.gov/pubmed/20157729

     

    But pathogenic Campylobacter, while flagellated, plays a trick on the immune system to avoid TLR5.

     

     

    So this could be the link to stomach pain experienced by many of our patients before the onset of PANDAS. See Dr.K's discussion on "adolescent variant" of PANDAS!

     

    http://www.webpediatrics.com/pandas.html

     

    So interesting. Gat has long, historically, has long, healthy remissions of more than a year at a time during which he has absolutely no stomach issues at all. The only time he has stomach pain is when he's in a backslide and then the stomach pain is every bit as life limiting as the anxiety. Thank you so much for your continued work and offering hope to these worn out kids and their parents!

  18. Well, we got the test results back yesterday, are now officially part of the growing positive Myco Plasma IgG group (negative IgM). I wanted to ask if anyone who has tested pos. for MycoP igG and has their child taking Biaxin - how are they doing? The only updates I've seen so far is 2-3 days in. So if your child has been on it longer and you could share, I would so love to hear any changes you've experienced. I'm also wondering - is there anyone out there who has been tested for Myco P and it has come back with negative/normal IgG???

     

    My ds16 was on 7 days of Biaxin 500mg twice daily. This came immediately on the heels of a couple weeks of Azith and 16 days of Augmentin 1000mg XR twice daily. We had to abandon the Biaxin on 2/18. His stomach was a train wreck. Dr. T. promptly called in Biaxin XL at the same dose which is supposed to be easier on the gut buy my son, who has never refused medicine, absolutely refuses to take it. I can tell you that while we were taking it, we started to see good changes in all areas where he struggles by the 3rd day. I was so happy about that but his gut continued to deteriorate. One thing I can also share is that we did see a cough develop that really freaked my son out. It didn't happen after all doses, but it did happen after some and would last about an hour. You may not see that in the IgG positive kids, my son was positive for IgM & IgG.

     

    We've now had to drop back to plan B, treating with all naturals addressing myco p as well as gut & brain inflammation, immune support & sleep support. The 7 days of biaxin did help though and he is continuing to make slow progress using the all natural route. I'm hopeful as he improves he will consent to 10 more days on Biaxin XL. Our short time on the biaxin was the ONLY time we have ever seen a positive result come that fast.

     

    Hope that helps,

    Gat's mom

     

    Vickie: His stomach was killing him ALL the time, not just when he was anxious. His acid reflux was out of control, waking every morning with a brown tongue. Omeprazole 20mg at bedtime wasn't even denting it, neither did propping his pillows and his mattress. Non-complex foods, tons of homemade soups didn't help either. He ate as little as possible and weight was falling off him.

     

    Smartyjones: I'll preface by saying, I'd rather be doing biaxin...what we're doing now is really plan B.

    *Myco control: echinacea and olive leaf extract

    (we have a middle school history of good results with OLE for ocd behaviors. this was before we knew about myco, which i believe he had in middle school, too. the autism world just related OLE for ocd behaviors. upon researching i found it helpful for myco which is likely the connection in my son.)

    *Inflammation (gut & brain): omegabrites. Have ordered Enhansa and it should arrive within a day, will be starting very low and slow.

    *Immune support: Vit C and zinc (as well as omegabrites, echinacea & OLE)

    *Sleep support: Epsom salts baths nightly, melatonin 5mg lozenges

    *Adrenal support: Drenatrophin PMG (Just started product yesterday suggested by our herbalist...she also started me on one)

    *Gut support: Klaires Therabiotic Detox Support probiotics (100 bil per day), omeprazole 20mg at bedtime, yogurt, kefir

     

    Most of the above were in place before he boycotted biaxin and would stay in place if he retries it. I do feel a multisystem support plan is needed for these kids. Their bodies are under so much strain.

  19. I've thought about updating the board but didn't want to jinx us. ;P I've also been wondering how the rest of the Biaxin kids were doing. Thanks for the updates. Sounds positive, overall.

     

    Dd did a steroid burst a couple weeks ago and I am still not sure if the benefits we are seeing are from the prednisone or the Biaxin xl, but as more time goes by, I'm leaning toward the Biaxin.

     

    The first steroid burst she had, gave her good results of days 13-18 following the burst. (6 day burst, tapering dose)

     

    The second steroid burst (40mg no taper for 5 days) was one week before starting BIaxin. Coincidentally, (or not) the day she started Biaxin, her OCD symptoms diminished considerably. She went form needing me to watch EVERY bite she ate, to eating 95% independently, even going to get her own food. She also has begun to eat a slightly larger variety of foods. Her reassurance questions have gone WAY down and almost everything seems to be a bit easier.

     

    We are on day 13 now of BIaxin XL. (generic) 12 out of the last 13 days have been the best in a long, long time. 3 days ago, she had a very difficult day and I thought perhaps the steroid was wearing off and that the benefits may have been only from the steroids. But the next two days were good days again. (last time when the steroids wore off she declined steadily) Today is the 3rd day following that bad day and this morning has started out with some difficulties (and some positive things too) so I'm worried again, but we'll just wait and see.

     

    Wish I could be more certain of the cause of her improvement, but I'm just glad she's improveing. Maybe its the combination of both therapies? It's given me a lot of hope.

     

    Angela

     

    That's a great report, Angela! Good for you and your family.

  20. Well, we got the test results back yesterday, are now officially part of the growing positive Myco Plasma IgG group (negative IgM). I wanted to ask if anyone who has tested pos. for MycoP igG and has their child taking Biaxin - how are they doing? The only updates I've seen so far is 2-3 days in. So if your child has been on it longer and you could share, I would so love to hear any changes you've experienced. I'm also wondering - is there anyone out there who has been tested for Myco P and it has come back with negative/normal IgG???

     

    My ds16 was on 7 days of Biaxin 500mg twice daily. This came immediately on the heels of a couple weeks of Azith and 16 days of Augmentin 1000mg XR twice daily. We had to abandon the Biaxin on 2/18. His stomach was a train wreck. Dr. T. promptly called in Biaxin XL at the same dose which is supposed to be easier on the gut buy my son, who has never refused medicine, absolutely refuses to take it. I can tell you that while we were taking it, we started to see good changes in all areas where he struggles by the 3rd day. I was so happy about that but his gut continued to deteriorate. One thing I can also share is that we did see a cough develop that really freaked my son out. It didn't happen after all doses, but it did happen after some and would last about an hour. You may not see that in the IgG positive kids, my son was positive for IgM & IgG.

     

    We've now had to drop back to plan B, treating with all naturals addressing myco p as well as gut & brain inflammation, immune support & sleep support. The 7 days of biaxin did help though and he is continuing to make slow progress using the all natural route. I'm hopeful as he improves he will consent to 10 more days on Biaxin XL. Our short time on the biaxin was the ONLY time we have ever seen a positive result come that fast.

     

    Hope that helps,

    Gat's mom

  21. This morning started out with a 20 minute episode because dd8 could not figure out correctly how many hours she slept. She would not let me help her but begged for help. She called herself stupid for not being able to figure it out. She sat at the top of the stairs and cried and moaned and whined and beat the floor and asked "why, why, why did I try to figure it out this morning. It ruined everything!"

     

    The thing is, sh'e so smart. She ended up writing down a pretend school schedule that mimicked the hours she slept. Once she figured it out, it was over and now she's fine. This happens with her homework a lot. I told her teacher that I often won't correct her mistakes because it will send us into this for the rest of the night.

     

    My trouble is I don't know how to not get engaged. I feel like I don't have what it takes to ignore her. When she is like this, the anger and fear and frustration builds up inside until I feel crazy. It only makes it worse, for her to see me upset or angry. I know this but I can't seem to just stay calm. It upsets her if I ignore her and it upsets her if I respond to her so I have no idea what to do.

     

    At least it only lasted for 20 minutes. It would have been hours before. In the middle of it I had her pop some motrin and L-Theaning. Maybe that helped. Now she's fine and I feel drained. I've felt like the abused parent for a long time.

     

    Susan

     

    I certainly don't have the answer to this, but I wanted you to know you are far from alone. The frustration to anger to rage meltdown cycle is one I know all too well. He flies off at any suggestion I make but I am also not allowed to be absent from it eihter. I pace or sit and gently rock. I have several 3X5 cards with everything from Bible passages to quotes from other inspirational texts, all of which speak of maintaining hope and love. I read them over and over again to myself while he goes through what he goes through and look for any shred that I can grab hold of to get me through that moment. They always pass, we are always both exhausted after. Afterwards I begin a DEDICATED search for even thesmallest non-PANDAS thing he does to be openly thankful for. I use it as evidence of him getting back on his feet after being knocked down again and trying again to reclaim his life. It has been hard in the darkest moments to not lump him in as part of the enemy and I'm always working to distinguish clearly it is he and I versus this disease, not he and the disease versus me. Stay strong and know you're not alone.

  22. My dd tested neg. for strep but positive for mycoplasma. she has had symptoms for 3 years. Initially they were moderate. severe enough that erp didn't make her symptoms managable and we put her on ssris. This fall however, her exacerbation incapaciated her. She could pretty much only sit on the couch and watch tv and eat. She couldn't dress, walk, brush her teeth, shower, all daily activities caused excessive repetitions so much so that she stopped doing anything that she would feel compelled to repeat, which was pretty much everything except watching TV.

     

    Before beginning augmentin I discoverd that Advil helped tremendously. So then when we did start augmentin it was hard to say if it was the augmentin helping or the advil.

    Then when we added Zith to the regiment, she did begin to improve within days (vocal tic left within days but came back for a while when she got sick, then went away again)but never got back to baseline. I can't wait to pick up her new script for Biaxin XL tomorrow and start that. (that is what Dr. T wants her on for ten days, then reevaluate)

     

    I pray that this is the answer we are looking for.

     

    Angela

     

    Angela,

     

    Can't wait to hear how she does. Due to stomach upset from regular Biaxin, Dr. T switched Gat to Biaxin XL yesterday. We picked up the Rx today, gave him another full day today of no abx and fighting yeast to try and get a foothold on it. Tomorrow we start XL. My fingers couldn't be crossed any tighter. My son is also a very good responder to Advil.

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