junkyardjean

We used this method lots when her inflammation was bad (dd was 3 at time). We were advised to keep her in 15-20 minutes as well.

Yes, the serum sickness was very bad - her joints were swollen (refused to walk, use her hands, etc), she was almost comatose in her lethargy, high fever, rash, the whole experience was awful. The docs have told us she most likely had milder versions leading up to the major reaction as she had been on amoxil before, but symptoms were masked by the illnesses she had at the time. Her reaction started on day 7 of taking amoxil. Constitutional hydrotherapy consists of placing hot towels on her bare skin for about 10 minutes, then changing to ice cold towels (these stay on until the towels are warm). Each treatment consists of towels on her back, then on her front. The constitutional part is the use of mild electric current on specific organs (she had lots on her liver) during the treatments. The change in the temperature of the towels sounds brutal, but she only ever argued when she was in a flare up and we had lots of sensory issues going on. It is a very relaxing treatment (I would sometimes get one right beside her). The research shows that this treatment helps to produce new, healthy white blood cells (dd's dropped wayyyy low when she was sick - her bloodwork showed a dramatic increase in WBC after each treatment), and the extra stimulation to the organs helps to tone and regulate the existing "wacky" immune cells. It is a slower process, but thankfully we had great success with dd. Her original strep was cleared with amoxil - but then she got the serum sickness. The hydrotherapy helped to clear all of her infections since last year, but we have also not encountered strep yet. Due to the rheumatic fever, I will be most comfortable using abx - but we are slowly running out of options that are safe for her...

We ended up going completely natural with dd4 (was 3 when this all started) - we made the decision initially because she has such a bad reaction to abx (serum sickness with amox, no growing with proph. pen v, severe abdominal issues with zith). It seems dd mixed with abx was making her physically much worse. Because she has always been so small, the no growing was a major issue... We started seeing a naturopathic dr - started with constitutional hydrotherapy, then some homeopathy, then added dietary changes. Overall, it was slow, but steady improvement - after 6 months of treatments, we are now to the point where she is no longer reacting to random bugs and not getting tics/behavioral changes when she gets sick. That being said, she has not had strep again - that will most likely be a whole different ball game. Working with the ND was much more comfortable for us - we are still very much connecting with regular doc as well, and I foresee a future of mixing the two perspectives when she has a relapse. Thankfully, our family doc is willing to work with the ND as part of dd's medical team, and has never made us feel like we were going to a "whack job" (phrase other specialist used when she met with dd for assessment purposes). I wish you the best of luck - we step tentatively and quietly each day with hopes she will not a relapse any time soon. After feeling like we lost our dd for just about a year, it is soooooo nice to have her regular baseline self back.

We have had experience with Rheumatic fever - it is a clinical diagnosis, and they use the Jones criteria to establish. Severe joint pain is a hallmark, and dd struggled with her knees in particular - her joints were also swollen, red, and hot, and the affected joints would rotate. Thankfully, she has shown no heart involvement at this point, but we are not out of the risk period yet. Initially, no one know what was up - bloodwork that came in super handy after the fact was the ASO titer, CSR, and ESP - these blood markers can help (as they are indicated in the Jones criteria) to rule in/out different diagnosis. ESR & CRP are inflammation markers, and when dd was in the midst of RF, they were really high. Where we are, not many docs have experience with RF anymore, so a big piece for us (and continues to be on the PANDAS front as well) is to find a doc with open mind and curiousity to look at the whole picture. Our biggest hurdle has been to find medical personnel without any blinders on....

dd was diagnosed with RF last year at the age of 3. She has not had any heart involvement yet (but they tell us there is a window of risk that she is not through yet). Her skin is often grey, she tires super easy, and she does complain of chest pain, but so far no heart changes (as seen through tracings & echos). It seems her body is still being affected by her autoimmune response triggered last year by the asymptomatic strep infection (although when the RF took over, it was scary - she was so lethargic and 103+ fevered for over 10 days, almost comatose and lost 5 lbs - she only weighed 28 lbs at the time, so she dipped into skeletal territory) On the flip side, ds7 who has never had RF or any other serious sickness beyond ear infections, was diagnosed with a heart murmur at the age of 6. Totally benign, not related to anything except genetics (that we found about after the fact - two of my sisters also have a benign heart murmur) As we are learning - symptoms are so different for every child. If your heart is telling you something isn't right, keep checking it out... I hope your child feels better soon

Sorry for the naive question... The Cunningham test - if child is not in a current flare up, can it still indicate PANDAS, or will the test have to be completed when symptoms are present? The reason I ask is that other autoimmune conditions can still be detected in the absence of symptoms - but I'm not sure if the c-test works the same way?

We developed a binder with different sections - lab work, behavioral logs, family doc notes, specialist notes, etc. As we are learning, beyond the strep history, clinical history/timeline of symptoms are very important. It saves time for us to give them a look through the binder to get a sense of what has happened and what labs have already been completed. Good luck! We are still looking for supportive specialists...

Thank you so much for all the kind words - I have been working hard to find my grounding since Friday and not let it overwhelm me... I was asked by the dr when my first symptoms started. I explained to her that I was young, but that as an adult, I discovered I was very badly traumatized over a period of time very early in my life and that my medical team feels strongly that many of the symptoms were related to the trauma. I started my bipolar symptoms on schedule in later teenage/early adulthood (I do feel my bipolar is the regular run of the mill kind... complicated by the previous trauma of course). I am in a really good spot and have been for a long time. I haven't been on medication for over a year as I was in a place where I could bump up the non-medication coping strategies and that is working well. I never in a million years dreamed my psychiatric history would impact the care of my children... The stigma is so sad and so hard to fight all the time - I think that is why it is important for us to get the proper treatment for my dd. If it is bipolar, fine - just give me the data that shows that. The docs on Friday were unable to do that, so their "theory" doesn't hold a lot of ground with me at the moment. The previous docs were able to show me the criteria for RF, Serum Sickness, and PANDAS - their ideas make more sense because of it. I also know that regular bipolar does not disappear (like dd's symptoms) - I feel lucky that we are early enough in the game that she is coming back to baseline so we can see the difference. Every day, I have to work with my bipolar in managing it. DD is only 4, so does not have the cognitive ability to manage so well for so long in between episodes without anything. I think my bipolar is an easy cop-out for them to fall back on when they are seeing things that don't make sense. The phrase - "When you hear hooves outside, you think horses. But what if it is zebras?" It is foolish to make assumptions and not be curious in my eyes... I think we have a "zebra" on our hands

On a previous post I talked about going to get baseline neuro-psychological assessement done when dd4 is well. We had it done on Friday and dd4 has been pretty much back to normal, so the timing was great. The great news - dd's assessment came back as no issues and she is doing very well and developmentally ahead of the game. No surprises for us - unfortunately, the docs seemed to be so proud of themselves to come in and tell us she was fine, and when we said we know - the point of the assessment was to have the baseline done so when she is not doing well, we can get a handle on the difference. That is when the crap started.... "It's not that we don't believe you, but...", "You don't want to be making her more sick than she is...", and the best - "She doesn't fit the clinical criteria for RF, PANDAS, RA, Serum Sickness - but does fit the clinical criteria for the precursor for what you have (meaning my bipolar- and from what I gather, there is no clinical precursor criteria)". I asked directly - the previous docs took us through the clinical criteria for RF, PANDAS, and Serum Sickness and she fits them all - what do you see that she doesn't fit? Answer - you don't want to make her more sick than she is. What the????? This makes no sense and I felt less than a piece of dirt and they were looking at me like I'm making her sick somehow. I know she is doing well right now and that was the damn point on doing the assessment in the first place. Because she is doing well, now we are crazy? The topping of the cake line - "She's doing fine now, there's more in medicine that we don't know than we do, forget the past year and move on and try not to create anything" This has completely deflated me and makes me feel like I don't ever, ever want to go see another doc again. I will not be surprised if Child Protection comes to my door this week for a follow up. I thought these appointment were to creat a plan for if she gets in a bad place again - I did not expect the investigation and dismissal portion. They said they were not referring her to immunology, rheumatology as that would be a waste of resources and take away from the children who really need them. Oh, also forgot the wonderful - "sometimes you need to be in tune with your child and behavior can be addressed with hugs and kisses when they are needed and time alone when that is needed" By then, we were feeling so beat up, we just smiled and nodded. DH and I talked after and he said - so when she is hallucinating, a hug and kiss is going to make it go away? Or how about when her kidneys were swollen and hardly functioning? Hugs and kisses is the new cure? I am a mix of angry, hurt, and deflated. Time for some serious self-care to regroup and get back at it tomorrow... Sorry for the long post, and I so appreciate a place to vent this to help keep my sanity...

Some eczema conditions are viral. Meats typically are high in arginine - an essential amino acid. Some viruses thrive on arginine. So if your DDs eczema is induced by a virus, cutting out foods that are high in arginine could starve the virus into remission or complete eradication. Likewise, adding lysine could also help (if you didn't want to eliminate meats from the diet). Arginine and Lysine are ying-yang. Too much of one can cause too little of the other. So adding lysine would reduce arginine as well as act as an anti-viral. It may or may not be an immune issue. But there's at least one other possibility rather than an immune response. Thanks LLM! There is so much to learn on this sharp curve we've been on - I appreciate the info immensely...

dd started with canker sores after she started getting lots of excema after her first flare-up. For her, it is linked directly with her diet - once we cut out certain proteins, the canker sore and excema both disappeared. When she has meat in particular, excema comes back within 12 hours, canker sores in mouth next morning guaranteed. It was explained to us that her immune system cannot differentiate between her own body's protein and certain food proteins,so when she eats them, it is creating a response that is attacking her own proteins causing the symptoms - summing up her wonky immune response in general (lol) Good luck - canker sores are no fun...

dd starts kindergarten next year as well and we have talked a lot about this issue. We have decided to go with public school (at this time - if she has another bad winter it may change our minds...) as she is incredibly social. Her older brother attends the same school so he is bringing home the bugs that sneak through anyhow, and my husband and I both work full time, so she encounters bugs off of us (though we do change before entering house again). It is a small school (her class will probably be about 15 kids or so), and they are completely on board around her health at this point. She goes to the school's nursery program - both so she can meet the kids, but also so her system can get accustomed to their specific bugs. She has attended the same daycare outside of the nursery school for years and it has a regular group of kids - we have found that she doesn't react as much to people who are close to her and she has spent extended periods of time with. Don't get me wrong - There are still zingers that get through - but she is definitely the child that needs the social aspect. With home-schooling, she would still have to go out in public, and we have found the public places to be worse for her system than her "siblings" from daycare & hopefully school. The school was kind enough to post an allergy to strep warning along with the peanut/fish/egg allergy posters and asked parents to call them if their child was diagnosed. So far, I'm pleased with their interactions with us and hope this carries into when she is in Kindergarten as well.

dd4's blood work was wonky for months until we started immune modulating treatments with ND - her levels of everything would rollar coaster, causing the docs to think it was a variey of things (including leukemia, kidney disease, other cancers, etc). One month, one would be high, the next month, it would be low - it was crazy and hard to keep up with. The two pieces of blood work that are consistent is her hemoglobin (chronically low since last Nov.), and ESR is chronically high. Our ND was the only doc who looked at her blood work as a whole - it was all linked to her whacky immune response (side note - freaked myself right out on google as well when looking at individual, couple, or triple results - was frustrated when I could find no info on the whole picture of her blood panel). Once we started the treatments, things have been mostly back to normal - but her blood work always goes astray when she is sick. Scariest for us is when she is really physically sick, her white blood cell count drops almost to zero - those results taken in a one picture is very scary and instigated much more invasive investigations on her. Now that we have been at this for a year and have a clear pattern - when taken as a whole with rest of blood panel, it is a strong indication of how her immune system is just not yet functioning correctly. I am still trying to learn how our immune systems are central to our system, and how autoimmune conditions can set so many other things off in the body... That being said, super important to rule out the super scary things!!

For our family, dd was only three when symptoms first appeared, but in the worst of it she had started to head bang and could verbalize enough to me that it was a double edged sword - it helped her feel better and more in control, and her mind said she had to do it or something bad was going to happen. That being said, I'm a clinical social worker by trade and work alot with cutters, and was actually a prolific cutter myself for about 10 years during my late adolescence. Cutting can have a variety of roots, but the most critical thing is that it works really well! When the cut (or other self harm) happens, there is a rush of feel good hormones that are released into the brain immediately - that helps calm the brain when it is experiencing chaos - no matter what the root of the chaos is. Recent best practice indicate a harm reduction model (as in telling her to stop will be useless), but rather looking at introducing & supporting alternate choices that are not as self-harming while realizing stopping cold-turkey or using guilty logic will most likely not be affective at all. For dd, her brain chaos root was definitely PANDAS, but the self harming was a way for her to self-regulate, as well as feed the ocd.

"""Also wondering what he's basing that opinion on? Is he suggesting that some form of vasculitis might cause the same symptoms and/or behaviors that have up til now been attributed to PANDAS?""" Yes, he indicated that vasculitis would cause the same neuro-psychiatric symptoms if the blood vessels in the brain were being affected. I have been able to do some further reading and it sounds very similar to the roots of PANDAS (autoimmune crossing barrier, causing symptoms). When I read the clinical pieces though, her blood markers that should have red flagged vasculitis in the beginning came back normal - which is why I think they didn't investigate further on this in the beginning. The dr. I spoke to did not have her labs, and was mostly looking for genetic markers/characteristics to see if they should be doing further specific pre-natal testing on baby. THanks for the info on MTHFR - I will get going on this right away and see what rolls out...

DD4 is thankfully doing well at the moment - we got through the last cold and she has seemed to really settle down (even getting hugs & kisses unprompted! - It's nice to have her back...) That being said, when she was sick in the spring, the referral process started to gets things figured out for her here in Canada. I got a phone call over summer with apology from a department head saying they were sorry the original ped. spent so much time focusing on my psychiatric background and giving parenting tips when there was no questions/assessments around whether that was an issue. Great! Then we get the call saying they want to funnel her through some assessments to "rule out" things - okay. She is booked for a neuro-psychological & developmental assessment this week. I'm trying to stay positive - with her in a good spot, I'm hoping they can rule out some of their psychiatric diagnosis (ODD and PDD being the common ones that keep popping up - at her baseline, so obvious that we are not dealing with those thankfully). But I'm also getting increasingly nervous. I'm pregnant, and during a consult I had with the genetics dr (we have had many pregnancy losses), he indicated that he felt she might have a form of vasculitis. Further, strep is not proven to cause this type of behavior change and that the hospital where she is going to be assessed dismisses this "pandas theory". I feel like I'm preparing for war - after we've been at this for a year and have well-defined patterns and she is very much still coming down to baseline in between flare-ups (which I credit our ND treatments for), there is no doubt in my mind that this is an immune issue. Thankfully, her blood work over the past year backs up the point that when her behavior goes wonky, so does her blood... I'm torn - the assessments will be good to finally "rule out" some of their thoughts that are ridiculous to me - but I know that each medical dr views her from the lens they are most comfortable with, which means that we could potentially have many more theories being thrown at us over the next while. After what happened in Boston, I am scared... Sorry about the length, I just needed a place to dump this fear. I was watching a show today and it caused reflection - we couldn't leave the house with her 6 months ago. She would run into traffic, eat dangerous things, scream at sensory issues, etc. We have started going out again and enjoying activities with her (writing this with tears in my eyes....) I missed her, and am sooooo thankful for where we are in this moment. I'm worried these assessments are going cause further compartmentalization of her care - we need her medical people to be more holistic, and I don't have a lot of experience with this hospital to know what we are going to encounter and it is bringing up huge vulnerabilities inside of me... Thanks for listening...

I'm really struggling right now with a couple of things. First, DD4 got her first cold in the beginning of September after stopping abx in July (due to her growth stopping while on pen & she is allergic to anything amoxil). Of course, before the physical symptoms started, she got a facial tic for two days that increased in severity that gave us the head's up of something on the horizon. The next day she woke up with stuffiness, coughing, bit of fever, etc., and surprisingly, the tic had stopped. Three weeks later, she was still trying to fight off cold - tested neg for strep both rapid and lab (but no PANDAS symptoms). We took her in and she was prescribed 7 days of biaxin for sinus and chest infection. 24 hours later, physical symptoms started to get better and she could breathe better, but her behavior went off the charts. She started whining, fighting, getting physically aggressive, lack of impulse control,lining things up, repeating, unable to focus - it was like her "old pandas" self we had in the spring. I know her immune system is whacky and given that she had a tic in the beginning of getting sick is a clear sign that we are not in the clear. But I'm confused over why that would disappear, then behaviors start with abx starting? Is this related to the pandas cycle, or are we dealing with something different. She is gathering quite a history of negative reactions to abx (serum sickness, no growth, abdominal pain, allergic reactions), I'm scared we are going to be out of options soon... Any insights would be greatly appreciated