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JsMom2014

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About JsMom2014

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    GTA, Ontario
  1. Our is definitely not the typically bartonella rash. Our is not purple streaks, it is red scaling bumps that start as clear raised bumps and eventually get a small scaly surface before as they start to go away. The skin underneath is often left with a light scar (no pigment) for a few weeks and then gone. They come in crops.
  2. Hello, I haven't been on this forum for quite some time as we were in a pretty good place for quite some time, but we are back in the trenches and I am still actually trying to figure out if my daughter's anxiety (and mild to moderate OCD) is connected with PANS. We have been experiencing a flare since August, with no end in sight. The anxiety and rages are high, emotional regulation is at an all time low and while I don't see many OCD symptoms, at 8 she is wise and tends to hide any behaviour that she knows aren't "normal" (her words, not mine). It's been 3 years since things were this bad but I recently made a connection that is putting me back on the PANS/PANDAS track. A few years ago while we went through a similar tough 6 months, in addition to several rounds of strep throat, she developed a skin rash that was diagnosed as pityriasis lichenoides. It was on her trunk and arms and basically looked like she had the chicken pox for several months. It eventually went away on it's own. Here we are back with a major anxiety flare and once again, she has a rash - this time the doctor has suggested it is pityriasis PLEVA (just another version). Due to my daughter's phobia of any medical doctors, a biopsy to confirm the diagnosis is out of the question. Now, finally onto my question.... the doctor has prescribed a 3 month oral antibiotic to deal with the rash. While I would normally decline such a treatment (as I know the rash does eventually go away on it's own), I am tempted to go down this path - more to see if there is any improvement in her anxiety as a result of being on antibiotics. I did have her tested for strep about a month ago just out of curiosity and it came back negative but we have been in a flare since August so it's possible we just missed it. After much reading, I do see that Pityriasis is an auto-immune disease and it can be triggered by stress so it is possible the rash comes out when her anxiety is high and it is still not Pans/Pandas related but thought I would jump on here to see if anyone else has thoughts on this. The antibiotic the derm prescribed (unaware of our pans/pandas thought process or anxiety patterns) is Erythromycin... if she is in fact dealing with a pans/pandas flare, do you know if this med would be one that is sometimes used to treat the inflammation/infection/virus? Thanks in advance. Totally at a loss. It's been a long 5 months and with each day passing my empathy decreases and my frustration level increases. All of the parents on here dealing with little ones who struggle on a daily basis, my heart goes out to you. It's not for the faint at heart.. Thanks again and happy Friday everyone.
  3. HI Everyone, It's been a while since I have been on here. I originally joined when my psychologist suggested we consider Pandas/Pans regarding our daughter who has had anxiety and OCD symptoms come and go for a few years. We were seen by Sick Kids Hopsital in Toronto and the dr suggested he didn't think it was Pandas as our daughter had never really returned to baseline (the anxiety has remained) but the OCD and a few minor tics come and go. I guess I just accepted the OCD diagnosis but I keep coming back to Pans as a result of my daughter's history. She is almost 6 now...but I wanted to share her story and see if I can get your take. We have an appointment on Wednesday at Sick Kids again and I am wondering if this is worth bringing up again. The story: dd has always had a pretty rigid personality from birth. Inflexible and very sensitive. first ocd type behaviour (although we didn't see it as this) started around 4 when we went through a period where she would pretend to be a girl name sara eveytime we came in the front door. The game lasted about a month or so and she would not let up. Aside from that a period where we went through of constant 10 perfect cartwheels in a row and lots of sorting/organizing...we didn't really see OCD behaviours. ***This is the important part I keep going back to*** Summer 2013. We went to a friends farm..on a hay ride. Few days later she had a few "bug bites" that slowly spread over the course of several weeks. After being referred to a dermatologist, he said she had pityriasis lichenoides. An autoimmune disease that made it look like she had a mild case of the chicken pox...spots would appear, scab over and from onset to disappearance, each spot lasted about 3 to 4 weeks. Research showed to get this "virus" she had to be a carrier, come across with strep and or hand foot mouth (and she had both this summer from the daycare). Stress and anxiety made the spots worse..but it basically cleared on its own after 4 months. To this day we still get one or two spots that come up out of nowhere (most recently one on the back of her shoulder) but since the summer of 2013 we have never had a case again where her torso was covered). The rash disappeared for the most part by November 2013. January 2014, rages started. Very aggressive behaviours toward me - literally out of nowhere. March - we had germ issues and full on anxiety (not wanting people to come to our house, constantly needing reassurance, couldn't be alone in the house, no longer able to sleep alone, etc. Cartwheels became critical again. Tics (nose scrunch and throat clearing) appeared in May 2014 and they come and go...and are pretty mild. Noticeable to us as it mainly occurs at night when watching tv. The rages tappered off that summer and didn't start back up again until last month. During this period she was diagnosed with several anxiety disorders and OCD in October of 2014. The last month was pretty bad...rages, obsessing about a kid at school, chewing on her hair constantly, etc. Then within the last week...things seem to be good again - much more in control and anxiety is at an all time low. We have never done bloodwork due to her fear of having blood taken and I worry we will never get her to a dr again if she goes through bloodwork. It will be traumatic to say the least. We are not on meds at this point. She is on a waitlist for OCD therapy at Sick Kids and she just started seeing a new art therapist. I feel like I am going crazy - back and forth between being in crisis and then having her do really well...until the next time?! My questions. based on this....I did some research today on pityriasis lichenoides and found out it is common in lyme patients. Does anyone on her have experience with pityriasis lichenoides and should I continue to research a connection to lyme? We are at a point where we are considering medication when the next episode hits (if it happens to be a long cycle) and I am so nervous to do this if I might be treating the wrong thing. What if OCD is the wrong diagnosis? Anyone.... T
  4. Hi all, Thanks for your input. I did call the dr and they said it is okay, but not to exceed 48 hours. No blood today and dia seems to have come to an end. Scary but I think just a virus. Thanks for your concern. T
  5. Hi everyone May not be anything PANS/PANDAS related, but I'm new here and thought I would ask you for your input... Sounds like many of you have been thru just about everything. We are on day 3 of diahrea (never spell that right) but last night was alarming. The dia hasn't been too bad, more just frequent soft stool than watery but still not normal stool by any means. In the afternoon dd5 said she had an accident in her underwear but it was like a wet spot if mucous and blood and small traces of stool. Definitely came from her bum. It was also blood tinged to wipe her. The next bathroom break was more blood mixed with the stool. The last one yesterday was just mucous and blood (no stool). I was alarmed but it wasn't a lot. Based on her fear of doctors, unless she is in pain, we try not to bring her in. I kniw there was no way of taking her to a hospital at 10pm to have it checked without tests and bloodwork (huge needle phobia). She was not in pain or lethargic or dehydrated so we took a wait and see approach. Today we are back to dia 4 x but again just really soft stool and it doesn't seem to be bothering her. Nothing new in the diet. No fever. Tummy hurting a lot these days, but that is very common complaint from anxiety and we have a lot going on the past few days and a pending hotel stay coming up so maybe it is just nerves I guess after reading all the auto immune stuff I've been reading, should I be taking this a little more seriously. Any input what it could be? We are so new to all of this, all I know is dds immune system is pretty bad as she catches everything under the sun... T
  6. Airial95 - thanks so much for your advice. I think the number chart is a good idea. I have been journaling since February and you are right, my words don't always indicate severity. On top of that, the journal is at 22 pages already and is too cumbersome to expect doctors to read. Is it common for PANS/PANDAS kids to be asymptomatic? DD has never complained once of a sore throat - despite her multiple times having strep. It makes it so hard. Her tonsils were enlarged but the dr at the clinic said that can be normal for her age. So despite taking a wild guess, it is going to be hard for me to figure this out all the time. Maybe the anxiety is so high right now (and very fidgety) because of her sister having strep. There seems to be a lot of mention about exposure to strep can heighten symptoms too...but does that mean they may not test positive themselves but someone else in the house having strep could be causing the flare up? It feels like a big complicated web right now...and until we meet with the Hospital for Sick Kids I guess we won't know if it is PANS/PANDAS or just flares of her anxiety disorders, unrelated to illness or infections. Our biggest challenge is the psychologist and our family doctor are recommending an SSRI for her before she starts grade 1 in September. We aren't there yet, mentally and part of me thinks that while her days are hard, she is learning to cope... Art therapy seemed to be helping, but she has recently decided she doesn't like talking about her feelings anymore and won't go. Hopefully some answers come sooner than later and we make the right decisions. This forum is so helpful (and very overwhelming). PANS/PANDAS or not, these are the cards we were dealt and we need to get educated quickly to help her the best we can. Thank you to everyone who responded.
  7. Hi, Thanks so much for the detailed response LLM. I have been on a research kick all day and I cannot believe how many things are lining up. I went to the drugstore and got print outs for all the antibiotics she has had. She has either had a chest infection or strep 11 times since Nov 2011. That's a lot of antibiotics! I also find an interesting link. In early April she developed a minor facial tic. It only lasted about 2 weeks but it was pretty evident when it was happening. I have videos of it. Long story short..the video I took was April 3rd. I linked it back to her antibiotics list and she was put on antibiotics April 12th. The tic disappeared shortly after. Coincidence? I never tied the two together before. Her anxiety is super heightened right now....and as I mentioned I kept waiting for my dd to get strep or see an increase in symptoms as her sister had strep on July 11th. Went back in my journal and found an entry where I made a big deal that dd actually let her older sister take a sip from her water bottle...this is a huge deal because of the germ phobia. That was July 6th. I think rather than me waiting for dd to get strep from her big sister, I may have just figured out that dd gave it to her big sister in the first place. Shared the water bottle on Sunday, strep occurred on the Thursday.... dd's anxiety is so high right now..probably because she has a current strep infection. I took her to the clinic today to get swabbed. So curious if I am right now. OCD is very hard to figure out....but I am starting to see it. The rages may have been the ritual. It was daily at 4pm. Without fail. As long as we were at home. If we were out she would be very agitated and it just delayed the inevitable rage. The rages started happening about a week and a half after the Dec antibiotics were finished...that is the only date I cannot the trace back to the antibiotics - must have filled at an alternate pharmacy.
  8. Hi Everyone, New to this forum and so glad I found it. I was really hoping you give me your "in the trenches" opinion of whether we are dealing with PANDAS/PANS and what a reoccurrence might look like. DD5 has always been a bit of a challenge in terms of characteristics she displayed (inflexibility, ridged, OCD tendencies, sensory issues, etc) but we always assumed it was just her personality. Last May we hit our breaking point in terms of being able to cope with her behaviours and routines and we sought the help of a child psychologist. Within the first session she said it sounds like she has a lot of OCD tendencies to which my husband and I were shocked and didn't really buy it. We just figured all this time she was just a very particular kid. Her routines at the time were around always needing to perform 5 perfect cartwheels in a row, playing a game when we would walk through the door where all had to pretend she was a little girl named Sarah and she was visiting our family etc. We also had a lot of sensory issues around only wearing seamless socks and a couple of shirts she would accept. She got very bad nightmares and started sleeping in our bed every night as she was truly terrified to be alone. At the height of these behaviours, she had also just recently had Strep, Hand Foot Mouth Disease, and developed an autoimmune disease called Pityriasis Lichenoides which basically looked like she had chicken pox for 4 months. The behaviours weaned off, we dismissed the OCD and life from Oct to Dec were good. December she got strep again. First week of January we started with terrible rages that occurred every single day after school. She was very aggressive and abusive towards our family, but mainly me (mom). A few times, our little girl was so scary and out of control I almost called the police on her. Other OCD behaviours started up again as well (she had a circle drawer in her room where only circle things could go), had major separation anxiety. She did have a tic but it only lasted about 2 weeks and was very mild. She started rubbing and pulling at her fingers and tucking her hair whenever she was nervous. By the end of March, the rages weaned off (went from daily to 2 x a week) but the anxiety picked up big time. She was fearful of losing control of herself and hitting me again, she didn't want us to have people over at our home, didn't want to go out to familiar places, had a panic attack at the dentist (never a problem in the past) and has a lot of fears like dogs, needles, vomiting, germs, etc. To date, the anxiety remains and some days are worse than others...but the rages are gone, thankfully. We have been to countless doctors and everyone keeps saying there appears to be a PANDAS link. She is on the waitlist at the hospital for Sick Kids in Toronto to see Dr. Arnold. I think we are looking at November before we get in. She was recently assessed by a local psychologist who diagnosed her with Generalized Anxiety Disorder, Separation Anxiety, Social Anxiety, and has symptoms of Panic Disorder and OCD. Despite the residual anxiety, she seems to be coping okay and our days are much better than they were from January to April... but it is sad to see this anxious little girl we are left with. She even dropped out of her favorite sports because of the "people and performing". Here are my questions: 1. Does this sound like PANDAS to you from our most recent episode (Jan to current) and if so, is it likely that last May was also a PANDAS episode? She has not experienced many tics, nor was the OCD our major symptom - it was the very out of character rages and the depression that followed every aggressive rage where she would beg us to move to another home or tell us her life felt like it was dead. 2. My older daughter had strep throat 10 days again. I have been panicking that our dd would also get it and we would be back to the rages... so far, despite her saying her throat felt a little funny yesterday, we have no fever and no signs of infection. Her throat could have also been anxiety related as she gets a stomach ache and feeling like she wants to throw up every night at bedtime. If dd was going to get a strep infection from our oldest daughter I assume it would have happened by now..but let's just say she does...how long after the strep infection is diagnosed would the symptoms start back up again? If it is PANDAS is it a guarantee that a strep infection will bring us out of remission and symptoms start back up? Is there a chance she could get a strep infection and not react again *Note, dd has a history of testing positive for strep but never complains about a sore throat. Several times we have taken her to the doctor because she stopped eating or her voice changes and strep test always comes back positive. She also seems to get yeast infections quite frequently I'm so sorry this was so long. I think I needed the outlet...... Any help or advice is truly appreciated.
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