Albymom

Thanks, Beerae22. Your story mirrors mine almost exactly -- OCD, anxiety, the skin picking(!), the irrational irritability, the severe anxiety -- today she hid herself in a towel when walking into swimming lessons, then refused to go into the pool because "other people might be looking". She has always LOVED swimming! She has always loved the pool. Then tonight she cried because dropped her ice cream sandwich on the table then cried because "now it has germs". This is the first I've heard of the germ phobia and my stomach dropped, because I know it's another symptom. Later she told me she hated me. Then she told me she wanted to die. This is a kid who was generally NORMAL all her life until around February when BAM - four diagnoses within three months! ADHD, Anxiety, "piano playing" hands, OCD, rage, Tourette's. Yes, she was on the shy side but the word "anxiety" had NEVER entered my mind before. She never refused to do things. Last night she told me "Mommy, I don't feel well. I feel emotionally and physically not good. I feel wonky." I had to catch my breath and remain calm in front of her but I felt so helpless. Every time I sat with a separate specialist giving me yet another diagnosis I felt like they were not HEARING me in terms of how devastating and confusing this is. I felt like they thought I was a crazy, over involved mother. I even questioned my own sanity at one point. The night I read about PANS I got chills. I feel like I just "know" it is PANS/PANDAS. But then of course I wonder whether all other parents of "garden variety" kids with these diagnoses feel the same way. Tonight it feels like you and maybe the other parents on this forum are the only people on this planet tonight who truly understand what is happening to my child and me. I feel like I am going insane! I had to start seeing a therapist 4 weeks ago because I simply could not process all of these diagnoses, each one so completely out of the blue. I can't believe I am sometimes afraid of my own child. She is and has always been the sweetest, sweetest child. I feel like tears are always just beneath the surface of my veneer every day, and I am otherwise a pretty happy and normal person! It HAS to be PANS. None of it makes sense otherwise. I'm so sorry to vent. I am holding on by a thread at this point. I'm trying so hard to stay calm and loving when my daughter has her "episodes", I'm working hard to shield my husband and family from the details of what I am witnessing but lately I feel like I'm "leaking" all over the place. I've been tracking her behaviors for the last month to identify patterns or triggers and it's clearly getting worse. The germ thing tonight felt like the last straw. I am literally counting the hours until Thursday's appointment, even though I know it will still take a long time for more tests, etc. I don't know how much longer I can hold on knowing that my child is clearly suffering. I need some help, but I don't want to leave anyone else with my daughter because I am probably the only one who understands her at this point. Thank you for listening. It helps so much to post. It really does.

Hi there. A PANS clinic doctor they use the following website as the main and updated source of PANDAS/PANS information: pansppn.org. Here is what it says (below) about the location of strep infections. Good luck to you; keep researching for answers. Location of Strep Infection – strep infections typically occur in the oropharynx, tonsils and anus and each area should be examined and swabbed for culture. Although “strep throat” infections are the most common trigger, PANDAS has been reported to occur in association with perianal strep infections. Additional sites may be involved; for example, animal research suggests that strep in the nasal cavity may enter or influence neuroimmune cells along the olfactory nerve, providing access to the brain through the third ventricle.

Hi We have our first appointment with PANS experts on Thursday. In the meantime, we are taking life moment by moment and doing a lot of deep breathing. I am wondering exactly how doctors and researchers can tell the difference between "normal onset" OCD/Tourette's/ADHD/Anxiety kids and PANS/PANDAS kids. The only difference I have found seems to be related to the speed and severity of symptom onset, but according to the pansppn.org site, even the symptom severity seems to be subjective, ranging from acute to mild/functional (see Treatment Options>General Overview). If PANS can be "mild", and if it can be a clinical diagnosis, and if it does not necessarily require infection-positive test results, wouldn't it follow that PANS treatments could work for most/all kids with this cluster of issues? I guess what I'm asking is this: if non-PANS kids can (and do) present with the same symptoms, wouldn't it also be true that their bodies are "malfunctioning" in the same ways as PANS kids? If so, what are the clear biological markers differentiating these two sets of children? I remember reading somewhere that an MRI can illuminate the difference but as you can imagine, the last three months have been a total blur. I feel like a boxer who keeps trying to get up but who keeps getting punched with another diagnosis. Another way of asking the question is this: how are non-PANS kids usually diagnosed with this cluster of diagnoses? Does it normally take years between each diagnosis? Thanks in advance for your thoughts. I have already learned so much by combing through this forum!

Thank you both very much for your responses. I will not give up hope. I will continue to push! I am in contact with the Stanford PANS clinic, as well. The other bit of evidence I have is that our daughter reacted extremely poorly to SSRI treatment, which, I'm told, is rare unless the child has either PANS/PANDAS or a mood disorder. I'm concerned about being perceived as "pushy" or at worst - crazy! I wish doctors would partner with parents on this exploration as if this were their child.

Hello Our 9 yr old was diagnosed with ADHD in January, and then Tourette's, Generalized Anxiety Disorder, and OCD in March. The ADHD was not a big surprise, but the others were a complete shock. We have no family history of these conditions (other than "mild" anxiety); they all came out of nowhere. In addition to the behavioral changes that come with GAD and OCD and the tics, she also became uncharacteristically moody, which everyone chalked up to hormones but it still didn't seem right to me. Other than a couple of days, she was able to hold it together to attend school, but usually at night she was exhausted and highly emotional. I would not call the symptoms as severe as some of what I've been seeing on this board, though they are at times frightening. I discovered the existence of PANS/PANDAS last week after randomly searching on "piano playing hands in children". Our daughter developed this movement as one of two omnipresent movements (the other is a slight but constant jaw movement). I thought it was strange that a tic could be omnipresent, even sometimes when she sleeps. When I read the symptoms of PANS, especially the chorea movements, the hairs on my arms stood up. I could hardly sleep. We had her tested the next day. The pediatrician ran a strep test (swab and blood), a full CBC with Differential, an AntiStrep 0 Titer, and a complete metabolic panel. Per the Dr, all results were normal (and I reviewed them myself). We're still waiting for some sort of antibody test result, but I don't have confidence it will be abnormal since it's been several months since the symptom onset. She last had strep in 2011 but no known infections since. I really doubt she could have Lyme disease; she's never had a tick bite. There was no marked illness before she was diagnosed, however she had countless ear infections each winter from age 0 - age 6. She also had a UTI when she was 4. I have a history of auto-immune illness. I'm thinking of requesting a Cunningham Panel, but in the meantime was wondering what you think, and what other suggestions you might have. I am confident we have solid doctors and a solid Child Psychiatrist on the case (both of whom are open to exploring PANS), but I'm worried these results will discourage them from investigating any further. I want to be sure I advocate for every possible test before we abandon this idea. Thank you