Stephanie2

Thanks, Meg's Mom! I just started another post titled: I think we have strep!! 'nuf said, right? I think God has me confused for another, stronger, more capable mommy!! LOL!

So, I'm not thinking strep in dec. But after sitting here for hours trying to figure out what is wrong with ds6 (sudden onset with pandas symptoms 48 hours ago). Then I remembered: I was out of town this last weekend and the whole time I had a sore throat, sinus infec., etc. My throat was RAW! So, I come home on Sunday, and by Monday night he is starting with sudden-onset emotional lability. Then the dilated pupils. The fears, meldowns, ocd. WHAT IS WRONG WITH ME?? By now I should have this pegged within the hour...the minute! 48 hours to figure this out?? Wow... Last time (which was only in Sept.) it took me 36 hours to put it all together, I had a sore throat, both kids fell apart. Went in for a culture and they had strep on the rapid. OK, I can sleep now. Call pandas doc in am...

I was thinking this too! Maybe the flu set him up. And you have a point about getting strep after the flu! I hear that a lot! I actually emailed Scott (Smith) and am going to request antibiotics in the morning b/c I'm pretty sure this is strep. I COULD increase his OLE and see what happens, but I think I will throw this thing a curveball instead. Dunno, either

DS6 has been in very good shape in terms of pandas since I started OLE back in Sept/Oct. The past 48 hours, however, he has gone downhill. My first thought was clostridia (still am wondering about this), but our pandas practitioner today suggested that maybe he is reacting to a virus, which I know he is. But the virus started at least a week ago, but the pandas symptoms appeared about 5 days into it. Is there commonly a delay? Also, I am curious as to why he did not react one bit to our recent bout with influenza A. Why would he now be reacting to a common cold? His nose seems to be very stuffed up, does he have strep in the sinuses now? Thoughts???!!! I started the "motrin protocol" today, regular dose every 3-4 hours while awake for 3 days. He improved immediately, emotional lability GONE! But what do I do after the 3 days if he doesn't snap out of it. Thought about increasing OLE, or maybe I need to do a round of an antibiotic...thinking about augmentin just in case it is strep or clostridia. We just got over klebsiella!! Ugh!

Unfortunately, the "exhausted and out of juice" happens quite frequently for me and many others on this board. Just keep it in your mind that you are not alone and over time THEY DO EVENTUALLY LEAVE YOUR HOUSE LOL!

DS6: early onset (20 months), diagnosed at age of 4, complete resolution of pandas symptoms at age of 5. Required one low-dose IVIG. DS2: early onset (15 months, maybe even at infancy), diagnosed at age of 2, complete resolution of symptoms at age of 2.5. Required a 20-day steroid taper. both maintained on OLE, LDN, Spironolactone.

In my experience with my little ones, fears are a BIG sign of strep/inflammation. We don't get the fears with yeast or other bacteria, only strep. It took me a very long time to put this all togehter. My older boy tells me what he is afraid of, my younger one just looks around his room like he is paranoid and can't quite figure out what it is (he will point to different things in his room). If I had to guess, whatever abx he is taking is just not doing it. I had to switch to OLE to get rid of the fears. I'm guessing that the strep had some resistence to the azith and augmentin we were using (high doses). The fears went away after 3 days of OLE (also high dose) and they come back when I lower the dose. I think your son is just not controlled yet (in terms of pandas). Have you thought about moving on to a pandas specialist/IVIG or a steroid taper?

My boys also have mitochondrial dysfunction (learned after the fact, of course). If only we could get the peds to screen these kids - LOL! Back to reality... Treating them with the mito cocktail has made a very big difference for them. For example, more muscle tone, stamina, ability to function during colds, etc. For one of my boys he even developed more speech. We use: Carnitine CoQ10 Vit E B12 (supposed to use all b vitamins but it tastes terrible so they are not compliant) I have heard that D-ribose (I think) is very good, but I do not use it. Also, MCT oil used as needed is good. Oh, and regarding the decompensation after vaccines, yes I watched this happen many times, often putting them into a pandas exacerbation as well. They no longer fall apart with illnesses (even had influenza A recently). We no longer do vaccines, just immune support... Now I'm wondering if mito dys should be part of the initial pandas work-up. Is this why my boys are doing so well in terms of pandas, b/c we are supporting the mitochondria, and combating oxidative stress, etc?

Wilma, can you be more specific about what her symptoms were like before the azith and what they are now? Are they different? I ask b/c several times now azith has pulled my son out of pandas (strep) only to throw him into aggressive behaviors from klebsiella which is a gut infection caused by the azith. If that is the case, it will not go away without a specific abx to kill the bacteria. For us, augmentin and septra have been useful to kill klebsiella. Could also be yeast or other bacteria. Scott could run labs to see what is happening. My guess is that if things are getting worse, you should ask the doc to change her to augmentin and see if things improve. She also may need an antifungal (diflucan, etc.). Are you using probiotics?

I am going to PM you b/c something you shared with me previously along with the reaction to azith makes me think of lyme...

Regarding his comments on Lyme, how can he definitively that only 2 of his patients had lyme? Does he routinely run an igenex test on each child coming through the door? You don't know you have lyme unless you test for it, and even then...the false negatives. Secondly, as a mother of 2 previously severely affected pandas boys who are now symptom free, it is very hard for me to hear that we should wait until the child is debilitated before stepping up treatment. I understand where he is coming from with the abx resistence. I get that. But what about thinking outside the box here. I mean we have 3 standard treatments: abx, steroids, ivig. There are so many more options out there. As many of you know my boys are maintained on Spironolactone, LDN and OLE. This has prevented the need for further IVIG, steroids and antibiotics (knock on wood). So much more research is needed...

Both of my boys are "recovered" from pandas (meaning they require many meds/supps to stay there - I wouldn't say they are cured). DS6: IVIG 1 gr/kg, one infusion Spironolactone ( http://www.icdrc.org/documents/Bradstreet%20Spironolactone%20Author%20Copy.pdf ) LDN ( http://www.lowdosenaltrexone.org/_conf2006/J_McCandless2.pdf ) Augmentin/Azith (discontinued and switched to OLE) OLE (Olive Leaf Extract) current regimine: Spiro, LDN, OLE and several other supps to support immunity DS2: same as above, only difference being that instead of the IVIG infusion we did a 20 day steroid taper and followed up with all the rest. They have been recovered for 6 months now, only flared when they both contracted strep in Sept, which quickly came under control with a course of Augmentin and then OLE. We even flew thru a bout with influenza A without setbacks. I believe it is the spiro and LDN that allowed that (both immunomodulatory and antiinflammatory).

Very interesting...we were prescribed quercetin for the same effect: histimine/gut repair. We were also prescribed IgG but i have yet to start it. Sounds like your doc is very on top of things. Funny how the pandas tx's go against the leaky gut repair. That's why we switched to OLE.

What are you using? www.customprobiotics.com, D-Lactate Free Formula Also, culturelle, 2 capsules per day (to keep clostridia at bay) What is the dosage? perhaps including per weight or age or per antibiotic 750 billion cfu's per day (divided in two doses) for my 30 and 50 lb. boys Is it a pill or powder? powder Where do you get it? www.customprobiotics.com Anything else that might be helpful about it. I did a stool analysis on my 6yo right before starting these probiotics and he had very little beneficial bacteria. 6 mo after starting this probiotic I did another stool analysis and his lactobacilli and bifidobacter were sky high! Even with chronic antibiotic or olive leaf use.

I would guess that I am more at the intolerance end (many people are) and maybe my 2yo is full celiac. I say that b/c some of the transient GI stuff I had revolving around my pregnancies and post-partum period are now fully resolved without meds. I never get reflux or stomach aches or bowel issues (lucky me, I know how awful that can be). Here's a question for you, though. Do you think that your lyme status is what created your celiac status?

I have been told by several docs that maybe my youngest child has celiac and that is on my list of things to check but I never thought about having myself checked. You make a good point. Not to mention, I think that most of my kids' problems came from me, so usually when something tremendously helps them, it turns out to tremendously help me. I am starting to have the kids' DAN doc run more labs on me... Thanks for the story and the tip. I am glad to hear you are doing better.

Tantrums, seriously? This is good stuff! You had me LMAO!!! And I have never used that acronym, so you know that was good! Now if only we could get this stuff published in the name of PANDAS research. Instead of Chicken Soup for the Pandas Soul, I like "Rants from PANDAS Moms"...

Our doctor ordered the "basic lyme panel" from igenex for me. 1. Is that a good one to start with? Here is what it includes: western blot igg, western blot igm, lyme igg/igm/iga screen (IFA). 2. Doc did not order a provocation with antibiotics with this. Should I request that? Also, should I discontinue olive leaf extract before the test (is antibacterial and I hear it has action against lyme)? Anything else I should discontinue? I am on many supplements. Thanks!

So, Wendy, if I go see a good LLMD and he/she looks at my igenex report and says I don't have lyme, what other things would he investigate? Remember I have an expensive biomedical expert on board!! Is there something a lyme doc can do that he can't? Thanks, I value your input...

Well said!! That about sums it up! FYI, not to give you too much hope, but DS6 had a big turn-around at around 3.5 weeks post-IVIG. I know...I know...shouldn't have said that. All kids are different. And by the way we did a smaller dose, maybe that is why the inflammation came down sooner than the standard 12 weeks that ppl talk about. Keep us posted! Oh, by the way, we didn't do Christmas one year when both kids were a train wreck. Very depressing. Give yourself permission to let it go if that's what you need to do to preserve your strength and energy for more important things. But then again, you could always go to walgreens and pick up a tiny tree and decorate it with some tiny ornaments! Better than nothin!

Wow, Sarah, do you feel better? I know I do...some of your "gripe" had me cracking up...not at you but with you!! Now I feel responsible for your book club not having a meeting room, did I push you to that decision?? LOL! Girl, I have felt every one of those social abnormalities, still do but I have come to accept it I guess. I quit all extra-curricular activities: moms' church group, junior league, going out with friends, going to the gym, going out with my husband, shoot I had to quit church all together for a good 1.5 years b/c of the separation anxiety and my anxiety over the kids getting strep unnecessarily! I think the toughest part about this is the isolation and I think that is what you are feeling. There will be a light at the end of the tunnel for you. And by the way, sometimes like you I feel like I will never recover from this, but I am always surprised at how quickly I feel "on top of the world" when both of my children are well. Then something happens and I am on the floor again. But even with that rollercoaster of emotions, over time you learn to trust in the fact that "this too shall pass", and your emotions don't go up and down with the kids. At least that's what I'm told!! So, Sarah, you've seen me all smiles with my little family on facebook, now you got the real deal!! LOL!

So, I just requested the igenex kit and I am going to have the blood drawn in the next couple weeks (on myself). I wanted to give a description of my symptoms to see what you moms think. Some of you have already told me to do it!! My first bout with anxiety was back when I was in college, about 21. Went to the ER one night feeling like my throat was closing up, and from time to time my chest would get tight (still does). I guess that would have been considered a panic attack, but I didn't feel panicked! Subconsciously, I guess? I managed my anxiety with lots of exercise all through my 20's. I also had some depression but it was only the couple days right before my period. I would also be aggitated at that time and sometimes take it out on my husband. I was diagnosed with asthma at the age of 28, but since then have lost this issue due to cutting back on dairy and other interventions. Here's where things escalated. When I was about 6 months along with my first child, I developed SEVERE depression, mood swings, I would cry so hard that you would think that someone close to me just died. To my own credit, I was on very strict bedrest (preterm contractions) which was against my type A nature. BUT, my severe meltdowns felt very out of proportion to how I was feeling. I felt like I was losing it!! I went on to have a very long, traumatic labor and delivery with no pain meds (not by choice). When I went to my obgyn a few weeks later complaining of post-partum depression, he said that he felt that I had PTSD from the "horrific delivery" - his words! He said I will get over it and soon feel better. I did eventually get better (maybe 6 months after delivery). About 12 months after this delivery I suffered from SEVERE IBD! Severe stomach pain, and the only thing they could find on colonoscopy was that my left descending colon was "twisted" - I attributed this to c-section complications. This magically disappeared about a year later...??? Fastforward to my son's first pandas exacerbation at 22 months of age (of course didn't get the dx until MUCH later), 6 months later I went into a SEVERE depression which I attributed to my child falling apart. Went on Lexapro. Then came the next event, a miscarriage. A year later I got pregnant again and had a horrible pregnancy - hyperemesis until week 29!, malnutrition, anemia, dehydration, strict bedrest for 3.5 months, preterm labor, reflux, you name it. This delivery was much better, but son went right into NICU. This child came out of the womb with very low muscle tone, torticollis, reflux without vomitting (? or was it early onset pandas?), distended belly, enlarged head, reaction to DTaP (lost all ability to verbalize - zero babbling, zero attempts to communicate), later went on to suspect autism due to no babbling, no attempt to socialize, behind on all milestones. Went on to be diagnosed with Chiari Malformation, mitochondrial dysfunction, methylation issues, inflammatory bowel. Had first definitive pandas exacerbation at the age of 15 months. I have since begun to see a functional medicine doctor who did labs which showed: anemia, low magnesium, insulin resistance/prediabetes (no diabetes in the family, I am 36 and not overweight??), mild thyroid problem, low testosterone, low DHEA, adrenal insufficiency and gut dysbiosis. After addressing all of this, I have been able to go off lexapro (with the help of 5HTP and SAM-E) but I'm not sure I feel as mentally well as I could be. I just have to wonder if lyme is bringing us all down! Or something! Or sometimes I just wonder if each one of these events is just snowballing together and maybe I don't feel great b/c of what is going on around me! (editing this to add one more detail, wondering what ppl think about this: a couple years before my mom got pregnant with me, she became very ill for a period of 6 months and it progressed to the point where she was too weak to hold a pencil and she could hardly walk. She was in and out of the hospital, no one had any answers, she was given meds, etc. Out of sheer desperation she one day decided to take some left over antibiotics that my dad had in the medicine cabinet. She said she was up and walking around within 2 days and she has been ok ever since besides some anxiety and thyroid issues) Feedback would be great...do you think I have lyme? Is this worth investigating?

Wilma, we spoke on the other forum and thru email. But I forgot to ask you, did you have the cunningham test done? Also, the confusion and bumping into stuff makes me think of yeast...does she act like she is drunk sometimes? Extremely silly?

By the way, thanks for the house cleaning tips. The housekeepers are coming this morning. I got nothin left!

You're the best!! Screw cap, I love it!!!! That's exactly what I was thinking when I was looking at the wine bottle while the crap was hitting the fan around me. Don't these people know we have better things to do than to fight with a cork?? Such as...drink wine! Throw out sophistication, bring on the screw cap and the boxed wine!!! Happy hour, anyone?? Glad my church friends don't read this forum!! LOL! Not that my church minds a glass of wine (or two), they actually told us that when we joined!! LOL! Permission to drink? I knew I loved this church for some reason...