junkyardjean

Rheumatology was a source for us to test for everything autoimmune - looks like we might be dealing with lupus too

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.

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.

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.

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!

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!

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!

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!

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.

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

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?

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...

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

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...

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