ScaredMommy

Hello - my son had the flu-mist in Oct. 2013 and 5 days later started counting all the time and had anxiety. Lasted 4 weeks and went away before we got into see a specialist who confirmed Lyme IGG by CDC standards, and autoimmune encephalitis (clinical diagnosis). Started antibiotics and continue to be symptom free (OCD non-existent now) 2 months into ABX. Immunologist wants to try for IVIG (not sure we'll get insurance coverage) in hopes to improve long standing sensory processing dysfunction along with newly diagnosed learning disabilities (dyslexia, working memory below average, fine motor all uncovered with testing for IEP at school). I was told his PANS case is mild. Not sure what to think on why his Dr is pushing IVIG as I thought that was helpful in severe cases with debilitating constant flares.

Oh...my son never had Eczema and I don't know if they tested for Cocksakie unless it is written in code on the lab work! I just wish there was a clear positive or negative written next to each result. So have this some don't and others just list the titre.

I feel more confused after this long awaited appointment for results on the blood work. I left a message for the LLMD office to call me so I can ask more questions and get a copy of his visit notes. Looking up these tests on the internet, I don't think my son had/has Ehrilchia, anaplasma or Babesia Duncain as these results all say less than (<) the cutoff titre for positive. Are these what others refer to as Co-Infections? How is MycoP a co-infection for LYME - or is it just another PANS trigger separately? Or is it that the result doesn't say "negative" or "not detected" mean that he is showing some antibodies and he was exposed and fighting these infections? My son doesn't have symptoms of LYME!!! I'm afraid to start any type of treatment if we are expected to see symptoms worsen before they get better. Hopefully I'll quickly get the Drs. write-up of the appointment and have more understanding. Thank you all in advance. I appreciate your insight.

He was tested for many, many things. One thing he wrote down next to a WA1 IGG AB, IFA was Babesia Duncani and the result is <1:256. Not sure what that means and I can't recall what he said about that. I can't even tell what lab many of these test are from. The EHRLICHIA CHAFFEENIS & ANAPLASMA PHAGOCYTOPHILUM both SHOW <1:64 for IGG and IGM is <1:20 and the interpretation says "see note", yet I don't have a page with notes. The appointment was supposed to be 45 mins but he spent 2 hours with us. It was overwhelming and he talked a lot about things we know nothing about. He said we could try antibiotics but in his opinion, they could do more harm then good and if it was his daughter he would go the herbal route 1st. I keep circling back to what caused the OCD. Was it PANS and he said possibly that the existing Lyme in his body is at a level that he was able to fight and the flu mist sent him over the edge. With the flu out of his system, this explains why he is not symptomatic. He was never on antibiotics during this type or any treatment. He also said he doesn't have Lyme disease since it isn't showing active in his system. After taking the herbs he wants to further test the Lyme to see if a bug can be grown in the lab. We don't go back for 2 months. Powpow, I would be interested in hearing your opinion on this.

I posted a few months back regarding my 7 year old and the sudden OCD that started within 5 days of receiving the flu mist. All symptoms of OCD lasted 6 weeks and are now just a memory. My son finally had his follow-up with a LLMD to get the results of his blood work. He is negative on the IGeneX IGM yet showing positive bands 18+, 41++ and IND on 31, 34, 83-93. IGG shows Positive results with bands 18++, 30+, 39+, 41+++, 58+ and IND on 31, 34 & 83-93. He also has a High Mycoplasma Pneumoniae IGG of 3.47 (IGM is normal 197). Streptozyme positive (negative) A titer 1:200 High. He has never had strep that we are aware. The Dr. we saw was very thorough, yet we left his office even more confused. This could be PANS or it might not be. He recommended my son start detoxing with supplements after the holiday's as if it's PANS we might initially see a flare with symptoms returning and he warned they might be worse than they were in Oct. We have never used supplements in the place of antibiotics or for anything else. This feels a little like hocus pocus to us and likely our pediatrician would agree. I would have never have suspected my son had Lyme and was quite shocked to hear the results today. He doesn't have any symptoms of Lyme. We are on a very long wait list to see Dr. B with hopes to get an appointment sometime this spring. Since my son's blood work indicates Lyme, the LLMD doesn't think at this point we need to push for the appointment with him. I'm not sure what to do since he isn't symptomatic now. I'm also afraid to start detoxing if there is a chance he will get worse than before. Thanks in advance for any advice.

Should I ask for specific blood work or should I expect that all of this will be covered with titer and a lyme check? I’m not at all familiar with the terminology. My assumption is that neither this doctor nor my pediatrician will initially look that extensively considering their admission of lack of knowledge on the subject, but I could be wrong. This at least will open up further conversation with his dr. I do agree on the meds, and right now I wouldn't even consider it. Thank you.

Hi all, To those I haven't replied to directly, thank you for taling the time to talk to me. I'm still soaking all this information in. We just returned from the appointment with a Psychiatrist. Although she didn't really talk to my son, she did listen to his full history and took many notes along with taking my own written recap of his medical history. She didn't dismiss PANS or PANDAS but admits she doesn't see it in her practice. She did offer to contact my pediatrician to recommend blood work!! I do feel like we accomplished more than what I initially thought we would! So I am very happy to have the ball rolling. She said that OCD does NOT come on suddenly and she possibly didn't believe me when I told her it did. She feels like OCD isn't a terrible thing to have and most relates to superstitions one might have and it often leads to perfection and success. That is...given some CBT therapy to help guide the thought process in a young child. She said that this type of therapy is more successful in an adolescent though, but she doesn't feel it would hurt and might really help if it is true OCD not PANS. She said the majority of true OCD is genetic and can present in this form in a young child even if there is no family history - but there is anxiety and depression in the family. She mentioned medication as a future option for true OCD and wasn't at all pushing that for now. Our next appointment will be just my son and her and we'll go from there with further recommendations after that and test results.

Thanks everyone for your input and sharing your stories and advice. I have a lot to learn. I did also complete the 51+ pages for Dr. Leckman and I'm waiting to hear back. I would welcome a 2 hour eval with him vs. a 30 min appointment with a Psychiatrist that happens to be available to see my son this week. So I took what I could get for now. I'll keep following up with Dr. B's office to push for an appointment too. My son is functioning fine right now despite these new OCD symptoms. It has not (yet) affected his daily life even if he stops to count 15 different times during the day. It is mostly done when he is not interacting with us or others. We've adapted to his SPD. He DOES still have REALLY bad days, but there are REALLY great days too. I'm not certain at this point there is a connection but I did get very emotional last night reading your stories, seeing how much more your children are suffering or have suffered. In my heart I want to believe this new development is just a phase that will pass. You have all made me see that I am doing the right thing by researching and seeking answers. I still feel like that crazy Googler but thank you for supporting me and giving me advice.

I am overwhelmed by your responses! You are all very lucky to have the support of this group as I am I. I will continue to research all you've provided me and present to our pediatrician in hopes she will help me navigate the system as it relates to obtaining appointments and possibly I can convince her to draw blood tests now. Thank you!

Nancy - Thank you for your reply. My Ped has made me feel like that crazy internet mom and I feel like one too. I didn't get the impression by her tone that she was looking to help me explore this as a possibility since she admitted not having knowledge with PANDAS. I know he could simply have OCD since the onset in a child is around 7 years old. I just didn't see this coming. I will review all the documentation you mentioned, thank you. I'm not hopeful anything will come out of our appointment tomorrow which I was told was just 30 minutes. I just want to have more information or one who might point me on the right path. One major medical occurrence i missed in my story above. At the age of 5 he had a swollen neck lymph node 3CM. He had no other symptoms. A few days earlier he had fallen at bouncy house and did hurt his neck. We were sent by our ped for an ultrasound which noted the size and many other small nodes enlarged as found them suspicious. We had an appointment the next day at a children’s cancer hospital. His SED rate was elevated, some blood work out of range but after a chest xray (normal) and multiple blood draws over a month, everything returned to normal. There was never a known cause.

Thank you so much for replying to my post. It is amazing that our sons do have so much in common. It's wonderful that your son has responded to the treatment. How did you connect the dots to PANS? Was this through testing for Lyme and other infections? How soon did it take him to recover? I would never have thought of Lyme, although I did find a tick on him this summer (1st one ever). It was tiny and easy to remove so his pediatrician didn't even want to see him and no symptoms followed. I never gave it much thought after that. I will certainly look into that as well. Most of our constipation issues are over (no more meds) but he needs reminding to go or I sometimes can tell by his actions he might be holding. Thankfully he doesn't fight me anymore on this issue. The SPD is part of his everyday life as it relates to clothing/shoes, but over the years and help of a good OT we've learned how to deal with it rather than fight it (introduce new items). It is still quite a challenge on the bad days which we are finding lately more often. More than 80% of the findings on his SPD OT eval we found hard to believe as we didn't see anything obvious going on. In Kindergarten however, he was lucky to have a teacher with a son who as a SPD and she saw the signs we missed. He does have a lot of trouble with fine motor, focus and staying seated mainly. The OCD came out of the blue and really has me scared. He tells me his brain just does it and he doesn't know why. He also doesn't seemed to be at all bothered by it.

A simple Google search of ‘OCD 7 year old’ brought me to your group. I’ve never heard of PANDAS and I have to say that what I have read scares me. I feel for each of you and your children who are suffering. Here is my son’s story…my apologies it is so long. I’ve tried to document medically what might be relevant. On October 8th, 2013 my 7 ½ year old son received the flu mist at his annual check-up. Within 5 days or so, he suddenly started counting to 7. He seemed to count repeatedly for no reason. He counted while watching a movie on the iPad – changed the volume setting 7 times while counting to 7 on his fingers. He did this in sets of seven (held up his thumb – counted to seven, held up his index finger – counted to 7 and so on until he was holding up 7 fingers). He counted to 7 by kissing the basketball before taking a shot. He kissed and tapped his stuffed animals 7 times each at bed time. He brushed his teeth then wiped his face with a towel seven times. He holds his bedroom door shut – pulling on the handle tightly for the count of seven (only at night after getting PJs on). He at times hums (or makes some kind of noise) instead of verbally counting out loud. I watched him playing by himself outside – count to seven, and then run down the street…stopped and counted to seven again (he was moved his head 7 times back and forth left to right) then ran back to the driveway. He would go up and down the front stoop after counting to 7. I did question this behavior but he told me that he counts to 7 because he is 7 years old. He said he counted to 6 when he was six (never did I see this) and he will count to 8 when he is eight. Another time he said he was counting because his brain makes him. He also said he doesn’t count in school (I’m afraid to even ask!). So that is the NEW behavior. Here is some background up until now. My son was colicky and needed to be swaddled tightly until he was around 4 months. At 5 or 6 months he had cocksakies virus – a really bad bought of it in his throat. He had cold after cold – which later developed into asthma (only with a cold) although the wheezing was only heard by the doctor. We saw a specialist and he was put on daily meds as a preventative measure at one year old. He took rescue meds with a cold only. When he was about 9 months old, he had a 4 week bout of diarrhea (tested stool found no cause). He seemed to rebound with constipation after this. At two years old we saw a specialist who said he was withholding stool causing the constipation. He was otherwise healthy but needed to go on Miralx & Laxatives to soften and encourage the release of stools without pain and to get his gut moving again. We continued for years with stool withholding. At 3 he had sensitivities to socks/shoes and it would take an hour or more to get out of the house and we’d all be in tears. We saw a Psychologist who said this was his way of having control since we were forcing him to use the potty while he was fighting and withholding. He started kindergarten and his teacher immediately recommended we see an OT for a Sensory Processing Evaluation. Findings…”There are several scenarios that may explain the distractibility/inattention as it relates to sensory processing; difficulty filtering out non-pertinent auditory information, the symmetrical tonic neck reflex not being fully integrated, and the sensitivity to tactile input or a combination of all three. Along with this, he has also exhibited inefficient processing of proprioceptive input, low average muscle tone and joint laxity that may result in distractibility.” And I thought he only having trouble with sock seams! My boy is the best hitter on the baseball team and can play the drums by ear as well as write music. Are these things all related and can it be possible this is PANS since the onset of OCD is out of the blue? Is there a connection to his recent flu mist vaccine or any of the other vaccines triggering the constipation, SPD and now OCD?? I don’t recall that he ever had strep (I am 99.9% positive he didn’t have strep EVER). I do remember him being on an antibiotic once for an ear infection. My mother swears I am a strep carrier as this is what my pediatrician told her when I was 4 years old. I would always have a rash and my brother would get strep over and over. So many times that his tonsils were removed at the age of six. My pediatrician doesn’t see a connection with the sudden onset of OCD with the Flu Mist and admitted she doesn’t know much about PANDAS/PANS. She recommended we watch my son and if it worsened or impacted his daily life to contact a Psychiatrist /Psychologist/or got him in CBT. We have an apt with a Psychiatrist this week. I’m waiting to hear back from the OCD child study clinic at Yale (Dr. Leckman) to see if my son’s case fits their study. Dr. Bouboulis in Darien, CT doesn’t have any openings and the wait list is so long that they anticipate possibly there will be a cancellation in the spring of 2014. Anyway…am I nuts for thinking my son might be having a PANS reaction? Thank you for reading our story.