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Everything posted by junkyardjean

  1. Rheumatology was a source for us to test for everything autoimmune - looks like we might be dealing with lupus too
  2. I don't have any info on California as I'm from canada, but my dd5 is dealing with autoimmune issues as well. From what I gather, what you call integrative docs there would bet he docs here who we have found to. Be the most helpful in the whole body approach to autoimmune regulation. Rheumatologists (again, depending on their philoposphy base) have been helpful for looking at some creative options for us as well.
  3. Our dd5 has these about twice a year, usually attached to a flare. They are also beyond foul smelling, and will burn her skin (she started having them while in diapers, and it would actually burn her skin). Through the years, we have realized that during some of her flare ups, there is inflammation in her liver as it is working so hard to clear her body. When her liver is having to work too hard, we see these types of BMs. The only thing we have done so far is monitor - they do repeated liver and kidney panels during these times to watch - so far, her body has been able yo resolve itself and clear it out.
  4. Our dd was three when the strep infection hit that ultimately rolled into pandas. She was first diagnosed with rheumatic fever, and was placed on prophylactic abx after the first abx run for the active strep. Given what I know now about the gut, I wish we would have been able to support her gut better while taking abx for that length of time. I think her gut is so damaged now from the 8 months do abx that is has exacerbated her immune system to the level that her whole system is a mess. For us, we now do a mix - we work a lot with naturopathic dr, and treat her with short term abx with active infections (with LOTS of gut support), then back to "food medicine" only. Even though she did have abx that first time, it did not stop her system from more damaged - ironically, I think for her, those months of being on abx (without us knowing the impact on her gut), was what has made it worse. I have learned that if her infections aren't treated, the autoimmunity issues get worse (she now has lupus like involvement with her livers and kidneys). On the other hand, due to our naivety, I think having her on long term abx also made it worse as her poor gut is struggling to regain its ground. If only! Hindsight is 20/20, and I can't predict what would have happened if we woulda, could, shoulda...... End of the day - when on abx, be sure to support the gut.
  5. Did the trip to Mayo produce any findings? I think pictures can be very helpful in documenting progress. I knew going in that they would be hesitant to talk PANDAS - lucky (or unlucky), her symptoms have evolved to be much more obviously physical (like cyanosis - they are ironically more comfortable with that). I was also clear that we were not looking to engage in pandas vs no pandas discussion, but to hear their expertise on immune systems. We are from Canada, and needed a plan for what to do with follow up here over the long term. Her immune complement system is not normal, and it is clear from her results that during times of illness, her body is showing inflammation and organ damage. It looks like her body is trying to flip into an immune complex disease (along the lines of lupus) based on the tests. While no help with the pandas, we also were not "seeking" any. To save myself disappointment, I went in with the mindset that immune dysfunction is immune dysfunction, they could call it steak and cheese - I could use the immune information across the board. Their support was definitely helpful in that way, and their expertise was very helpful. I would say that the docs we saw would not have so helpful on the pandas only discussion - we heard the "we are not saying it's not real, but there is more in medicine we don't know than we do" thing, thankfully due to her other main presenting symptoms at the moment, we didn't gave to go further into it!
  6. We received a book from dd's daycare a few months ago that she has attended since a baby. Dh looked thru it first - first comment - you can tell by her face/eyes when she was sick. It was profound the difference for me - I hadn't seen the pictures of flare vs. non flare times so nicely put side by side. It made me sad , but also helped me realize that we are dealing with something very physical here, and to get back my fire back burning on high. That led to the Mayo clinic self pay trip!
  7. Both the doc and dentist had told us the orange color was the combo of the colouring in the medicine itself, added to the change in mouth flora that the abx created - her mouth couldn't break down things the way it normally would, and the orange colouring just showed off her new coral reefs that much more!
  8. Your post grabbed at my heart... I recently realized that my stomach drops to my feet when I learn we have to meet a new doc/specialist. The treatment we have received has caused PTSD type symptoms in both dh and myself - to the point that we are managing physical symptoms at home that 99.9% of the parent population would take their kids in for. We have lengthy conversations on when to go in - her medical history is so complicated that a part of me wants to hide the history so they can just see her with new eyes, and the other part of me wants to hand the whole sordid story over in the hopes that the new person just may have a new piece of information that I need, or an advocate to lead to something else. There are some days that I wish for symptoms/diagnosis that fit into a nice clean checklist.... I hear your vent, and you are not alone!
  9. Dd was on penv for approx 8 months. We had to make the decision to take her off due to increasing teeth issues (we would brush her teeth 4 times a day, and she still would orange coral reefs formed at the next brushing) and increasing abdominal pain. She had also stopped growing while on it. It definitely helped keep her safe from strep, but I agree with your statement - didn't help at all with the viral stuff. We would see her behaviour spike each exposure. We tried to put her back on when she was getting ready to start kindergarten (had been off for about 1 year), but her immune system is so wonky now that she broke out in hives and is considered allergic. Over the two years since this all began, she has developed new allergies, especially to abx. Thankfully we are from a small town, so everyone here knows her and just stays away if they are sick. The school lets us know if there is a sick child in the building so we can plan on our end.
  10. We have started working on conscious, active verbal reminders on why we fell in love in the first place. We are drowning in life right now, and the fights get pretty bad when dad's behaviour goes south (there is only so much gas in the tank). When we take 10 secs (and yes, sometimes it is in the bathroom) to verbally say - I remember when your eyes sparkled when... It helps to remember "us" in this gigantic mess. I know it won't work forever, but it's helping us survive right now
  11. The wait list for rheumatologist is lengthy here, and from what I understand it will still be awhile - leading to further my frantic feeling . What we've been told so far on the complement piece is that the pattern are what they are looking for. In some illnesses, some complements are up, others down - with both of hers being so low, it is showing that her classical pathway is being activated, and the proteins are being used up too fast. SLE, immune glomernephrtis (sp), are two examples of this particular pattern - ipboth being low indicate a "complex systemic immune disease". They had said that if her c4 was normal, that would indicate something else - something about the way different inflammation is managed by the human body. In RHeumatic arthritis, the inflammation is handled differently by the immune proteins, leading to different patterns? It is times like these that I am so frustrated living in a rural area - family dr has been fantastic, but we limited in specialists and equipment that the times to access are long. Her main set of symptoms now - behaviour (of course, that always flares up in these times), sleep issues, no weight gain on 3500 calorie diet (she's 5 and weighs 33 lbs), chest pain, joint pain, +++abdominal pain, tachycardia, palpitations, cyanosis episodes (no loss of consciousness). Her heart is fine on EKG and echo. Just submitted results on a take home monitor to rule out electric issues (not likely as she doesn't lose consciousness) The blood test results: High - Urea, creatinine, LDH, direct bilirubin, albumin Low - Calcium (corrected), rbc, hgb, hct, mpv, c3, c4 Normal - WBC (barely, close to low cutoff), mcv, mch, mchc, rdw, plt, sodium, potassium, chloride, total co2, ggt, alt (sgpt), alk phos, total bilirubin, total protein, calcium, phosphate, uric acid, magnesium, eGFR Any thoughts?
  12. I'm wondering if anyone here has info/experience with very low c3 and c4 immune complement levels? Dd has been struggling with new and different symptoms since July - they ran these two levels and both are close to zero. Lupus has come up in discussion - her ANA panel came back negative, but her direct bilirubin, albumin, urea, creatinine, ldh are all elevated which is new for her. Gluten panel also came back fine (checking for celiac). ANY information is so appreciated! We are in a frantic bind trying to figure out what to do/where to go next...
  13. I just wanted to post that your exhaustion, frustration, and despair caught my heart. But, so did your resilience. My dd is going through a very rough physical time right now ( different for us, and we are used to more behaviour based symptoms), and am feeling at the end of my rope on what to do, where to help. Your love is evident - I'm a social worker in my working life, and have a whole new appreciation for behaviours based on our experience in the pandas world. Caring for the caregiver is a massive component to managing these diseases, compounded by the trauma we parents have to face in dealing with the medical system. Always being in fighting mode for advocacy is very hard work, and very under appreciated. I have started to utilize more advocates in the system - being a social worker myself is helpful, however she is my kid. Having someone on the team for advocacy/support has been helpful for me to see different paths/resources that I may not have known about. In this province in canada, there is an organization that one can access to get a medical advocate - saves me from having to have so many stupid fighting conversations with docs who don't get it - we joke between the two of us that she's like my screening answering machine.. Sorry I don't have any medical info - all I've got to offer is Internet hugs
  14. Dd5 was sitting with me chatting with dd6months - she has been complaining of headache at the top of her head. It is SUPER hot and humid here right now, so had been pushing water all day. I look at her, her limbs are a mottled grey, her face ashen, her skin around her lips, her lips themselves were bluish-grey. It resolved in about 10 mins or so. Any experiences? I'm trying not to freak - but weight loss, headaches, obvious blue skin, there's something up. I just don't know what and the ped on Friday just listened to her heart and said no worries. What else could cause that! How serious is a transient episode? I'm officially very worried...
  15. Thanks for posting the update! I needed to hear this today... 2 years in with ARF, PANDAS, and all the rest of the fun that goes with it, we are struggling to see the bigger picture right now. Dd starts kindergarten in a couple of weeks - instead of the fun worry that comes with that, we are super scared, pee our pants kind of worry on what this is going to be for her. It's wonderful to hear stories - I find it gives me strength to keep moving forward and putting things into perspective. The parental strength and knowledge contained on this board is amazing
  16. Thank you for te info! It was a Diagnos techs saliva/stool. Ped seemed to think it was not a valid result and ND was taking us for a financial ride. I'm not so sure, as we were actually looking for ideas around food trying to address her weight loss. I'm thinking that if ND was "padding" the report somehow, the food intolerances would have shown as we could have bought those products from his clinic. Instead e. avium shows, he suggests abx (which NDs philosophically stay away from), but because she's in such a rough place, he's concerned if the e.avium manages to get into a different part of her body, or if she gets exposed to something else, she won't be able to fight it off and will get bad quickly. From reading last night - I'm thinking overgrowth leading to malabsorption. Until we get the overgrowth taken care of, we can feed her all we want, but we are not going to get anywhere. We see our family doc on Monday and I will talk with him to see if he will help with next steps. The ND suggested linizolid to cover the vre just in case. Diagnos techs did not indicate in their report if it was the resistant strain or not. PowWow - can you tell me more about your experience with it? For ONCE, I wish we could walk in to a docs office and not feel beat up, confused, and having to spend 25 hours of research time to get anywhere.... Thank goodness for this board
  17. Made an error - thought I better put exact wording... No ova or parasites seen. + yeast - many. (This is under ova & parasites, x1 (stool)) (The list below is under bacterial stool culture) Heavy growth mixed gram negative rods/flora Heavy growth mixed gram positive rods/flora Mixed flora consists predominantly of nontoxigenic E. coli - heavy growth and enterococcus avium - heavy growth No salmonella, shigella, E. coli o157, yersinia, vibrio, aero moans, proteus or pseudomonas isolated Only other "off" result is the total intestinal SIgA (stool) is 16. - ref range 400-880 Any info/ideas/advice is badly needed - we are really struggling right now TIA...
  18. Dd craves simple carbs - just learned today her gut has heavy yeast growth and the yeast is making her crave simple carbs so it can feed itself. It is also using up the energy/calories to grow so, as a result, her body is stalled on growth/weight gain.
  19. We just got results back from stool/saliva test. Dd5 has been physically sliding for the few months and the new ND thought it was worth exploring food intolerances. The results are in, and I'm surprised... Negative an all food intolerances Yeast - heavy growth Enterococcus avium - heavy growth Intestinal SIgA - 16. Reference normal 400-880 No other parasites/ova All other panels negative Thoughts are that the enterococcus avium has taken over her gut, leading to further yeast overgrowth and very low SIgA levels. Suggested abx ASAP to clear it out, and IV nutrition to get her strength up as she tires after about an hour of play. but when we met with ped (the main stream is where we get the abx from), he scoffed at results and stated "we need to think scientifically". He asked if she has diarrhea - she doesn't, but has ongoing stomach pain, grey skin, dark circles, and even after eating 2500 calories a day for three weeks, has lost a pound (she only weighs 30 lbs). When I asked him his response was - if she doesn't have diarrhea, then she's fine - give her more boost, she needs more calories... WTH - she eats nonstop.... I need some experience from the board - has anyone dealt with this avium thing. Is it the root, or because she has no diarrhea, we can move on? I asked him to test for the avium in mainstream - blood and rectal swab would do it, but once he heard ND, he glazed over, referenced hocky science, then focused on more calories. Another up and down day...
  20. I don't have any answers, but wanted to say I'm glad you are asking! They have decided to send dd for this and I have no idea what to expect... Will "intolerances" will captured, or just "allergies"? I use quotation marks as I've benn scolded by past drs that intolerances are nothing - but for her, they are everything!
  21. From the explanations I've been given - similar to prophylactic abx for rheumatic fever - ongoing abx can help provide protection from infections entering their bodies causing further flares and cementing the abnormal autoimmune response. Infections have various stages - my dd will flare with 1st stage alone which is basically just being exposed and bugs thinking about setting up shop in the body. For others, flares come with active infections alone. Abx can help be a shield (so to speak) if that treatment works for the individual.
  22. I am so thankful for this forum! I will f-up with the Lyme lead - when she was first sick, it was November in manitoba, super cold and snowy - no ticks so I assumed that was out. Been doing more reading and realized the Lyme world is much more complex (chronic, congenital). The strep/ARF/pandas may have just aggravated her already low immune function from a pre-existing Lyme infection?? Will be looking into canadian resources - if anyone has any ideas or leads for up here, very welcomed The recent samples were sent and results should be 2 weeks or so for the parasite question.
  23. Things that worked in the past were hydrotherapy, diet changes away from certain proteins, homeopathy - we are still doing these but they are not effective against her new symptoms. We met with a new ND who recommended we do a saliva and stool panel through diagnos techs in the states to see about intolerances and what is potentially growing in her gut. We should get those results in two weeks or so. She eats like a horse as she packs more food away than her brother (8 years) and myself combined. She is ALWAYS hungry, and she has nonstop access to fresh veggies and fruit. I don't know where it goes though, as she only has a small bm once a day/every two days, and is only 32 lbs soaking wet at five years old... She doesn't show the traditional symptoms of celiac (beyond the anemia), nor of parasites, but the ND stated this panel will be the best bet to start to rule those in/out. Our ped wants to move to ivig, and is willing to coordinate that here in our province (prior to his arrival, we were going to have to head to states). But, I am unsure - my concern is that if we start that now, she is very young and hopefully has a long life ahead if the organ inflammation does not get worse.. How many can a person have ivig in their lifetime? She is also not "typical" pandas behaviour like she was the first flare where he had true OCD, tics starting, and lots of tantrums. If this is now a different infection, leaky gut, etc. will the ivig still be effective? Kindergarten starts in a few weeks, and although the school is highly engaged, I'm worried about the exposure risk
  24. I've been reading and posting when I could - we added another dd to mix and I forgot how tiring new babies are Dd with pandas is now 5. We've done lots of dietary changes - she has shown allergy to almost very abx she's been on. They say it is a sign on how whacked her immune system still is. Recent appt - looks like possible heart issues from ARF from 2011, liver inflamed, not gaining weight again (talking iv nutrition), behaviour not rapid spike up, but slow build into mid-high level difficult behaviours. Her skin is often grey and has massive black bags. A stranger in the grocery store actually gave me a hug and talked to me about how hard it is to watch your child die in front of your eyes (she thought she was in end stage cancer because the way she looks is similar to her daughter who died from cancer). Feeling completely overwhelmed needless to say... I still carry this thought that we will get a handle on this, but it's been 18 months and sliding back. We've been able to manage the behaviours the best (which is hard because they are SUPER tiring!). When I look at her, I can see something isn't right and don't know what to do. It's hard breaking watching her physically disappear again... I am so MAD at strep right now - we are lucky to know this was her root, but what it is evolving into is scary.. Just feeling very alone - this place is the one solace that I know people here really understand that feeling. Trying to be strong with everyone, but I need a place to where I don't have to fight/advocate all the time...
  25. I'm in manitoba - haven't been on the boards lately due to a very complicated pregnancy and now in the wonderful midst of 4 month new baby... We have had a ped move into our rural area who actually treated a few kids with pandas in his previous work overseas. It was weird not having to convince him of anything - he also said he would be willing to coordinate ivig if we needed here as pandas is indicated for ivig treatment under canadian blood services. We also have a fantastic pcp who is very supportive locally- sometimes small town living is useful as people are used to having to be creative and look outside the box ( also helps I'm a pitbull advocate at this point ). We are still struggling, but at least no more arguments around labs, treatment options etc. we are definitely in the mode of day to day management.
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