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  1. 1 point
    cmac

    Need to vent

    Maybe a PANS/PANDAS specialist could do a Skype/phone consult and at least give you a script for all the blood work? Also this thread has info on doctors people here have seen and I think various states are mentioned.
  2. 1 point
    maryangela

    Need to vent

    I know that “inexpensive” supplements can add up, but we also used 5-HTP for our DS. It was recommended by an otherwise unhelpful psychiatrist. This was when DS was at crisis level. Need to use on empty stomach. I was able to get DS to and from bloodwork appointment on public transportation because of the 5-HTP. I don’t recall why we stopped using it. This was in 2016. I believed we stopped a couple months later when we finally found a doctor to prescribe high dose of Augmentin. What form is your Oil of Oregano? Again, we saw improvement, but used a high dose. 15 drops of undiluted 5x a day (mixed with orange juice). Something else we use as antibacterial and anti inflammatory is tea made from ginger root. I grate a hunk of ginger root and steep it in boiling water, then strain. It’s pretty spicy, but we like it. We’ve been chilling it and using as an alternative to unsweetened iced tea. At the risk of bombarding you with information, those were a few things I thought of.
  3. 1 point
    cmac

    Need to vent

    My son had strep and myco P. Try testing for myco P. I had never heard of it before they tested for it (I had never heard of PANDAS until pediatrician told me). The first dr we saw after pediatrician was an infectious disease specialist—he tried a whirlwind of antibiotics over a course of two or three weeks and nothing really helped. It was only after 6 weeks of Biaxcin plus 2 weeks of Augmentin on top of that that we saw a difference (that was with Dr T—specialist in NJ). My point is that you aren’t doing anything wrong —just that most times this is a long haul. I think there are a few kids who recover quickly with one two week course of antibiotics, but I think they’re the exception not the norm. From what I’ve gathered it can take 4-6 months (in our case it was 6-7 months) to return to baseline after the initial exacerbation and the exacerbation can last for weeks, too. I think time is a big part of the healing process. The inflammation needs to come down and even if there are no strep titers, there could be ones from myco p. Have you also checked for Lyme? Oh, and even with a solid PANS diagnosis from multiple drs, I did also wonder if my son was mentally ill and that I was deluding myself. So, I know how you feel. And we were offered psychiatric drugs almost immediately as well (from the infectious disease dr).
  4. 1 point
    Robinhubb

    Need to vent

    Yes we just used a doctor thst didnt use my insurance...he just ran strep teiter thats it. Called my kid crazy and left. Im not totally against phych drugs but thats what drs immediately put her on because they dont know whats wrong. Frustrating!!!!! Ty so much. I know we will get thru but being in the storm is always rough
  5. 1 point
    maryangela

    Need to vent

    My heart breaks for you and your family. Since your DD’s onset is recent, there should be so much hope...if only the doctor’s weren’t working against you. What bloodwork did they run? Did they check for Mycoplasma Pneumonia? We spent years trying to find someone to evaluate our DS for PANDAS/PANS. Ultimately we used doctors that don’t accept our coverage or any coverage.
  6. 1 point
    kakrpa

    Need to vent

    I'm so sorry to hear of what your daughter and you all are going through - it sounds tough and incredibly frustrating. I won't say you're doing anything wrong as I think we are all doing the best we can given the circumstances. I truly feel for your daughter as I have dealt with those horrible OCD thoughts myself - I was dx PANS almost 5 yrs ago (young adult onset w severe anxiety that immediately took hold as the pureOCD subtype). It wasn't strep that triggered it for me either (my guess is it was brought on by the pneumonia I battled immediately before this illness). While I would typically second anyone refusing psych medications, I will tell you that I would not have made it to today without their help along w the help of a great psychiatrist. I guess I'm saying please don't shut the door on the potential for her to find some relief in even just one medicine, if it gets to that point. I know there are potential risks and benefits to each approach, just please keep an open mind. Have you heard of TRS by Coseva, before? I just placed an order this morning and would like hear from anyone who has tried this. If you haven't heard of it nor tried it give it a search. It's premise is interesting and I'm curious to see if it will help me. Btw, I am in no way advocating nor endorsing. Wishing you and your daughter the best. Please give her extra hugs as what she needs most right now is love and acceptance, and to know those thoughts are not HER THOUGHTS, but rather manifestations of the illness itself. They do not define her. She's likely very scared inside - it's hard to understand what's going on (even for an adult, let alone a child). (((Hugs)))
  7. 1 point
    prestopony

    Supplements

    I'm sorry you're having trouble getting a doc to help, it's so frustrating. This board was so helpful to me. Like many kids, my 15 year old daughter was diagnosed with PANS after many years of suffering. She is on a lot of supplements, so it's hard to know which ones are really successful! We use: Enhansa for inflammation - follow the guidelines for slow introduction, we noticed a big herx as is said might happen. For anxiety, we use CDB oil and Lithium oratate. Her 23 and me showed folate issues, so she takes Methyl Assist. Magnesium Citrate along with Buffered Vitamin C for constipation (as needed, which used to be all the time at the beginning of treatment!) - I can't stress enough the brain/gut connection to think about during treatment. She takes Thera-lac probiotic too And Super Lysine Plus for immunity support. To balance out the stress of so many years of anxiety and poor sleep we use Cortisol Manger, and Seriphos - I think these are at the bottom of the list of what I think has really been helpful though And, she is on the low-FODMAP diet Upon initial diagnoses, her PANS doc put her on Augmentin which was amazing. Came off of it, flared, tried Zithromicin, didn't work, went back on another month of Augementin, came off of it, and stayed well. During flares, unless her bloodwork shows something, we use a month of Naproxen (regular over-the-counter Aleve) - and it works beautifully. So, treating the inflammation seems to be key during flares. I would think also that a too-short supply of antibiotics is not going to help. Now, my son, who does not have PANS that I know of, but is suddenly dealing with extreme intrusive thoughts and OCD (my daughter's was just EXTREME separation anxiety and EXTREME generalized anxiety) I'm taking what I know about inflammation and scouring this board for help - and trying some things with him: NAC - an amino acid that has had some documented success helping OCD in larger doses L-Theanine - another amino acid that promotes relaxation and calms the brain and elevates GABA and serotonin I just started him on Enhansa last week. Reason being we just found out that he's allergic to EVERYTHING - grass, trees, weeds, mold, dust, cats, chickens (we have eight), dogs (we have three) guinea pigs (we have two). So he has started allergy shots, but in the meantime I can only think that there is inflammation in him from all of these undetected allergies. His probiotic is called Mood-Super strains - with strains that are geared specifically towards anxiety and depression I just learned about this product yesterday from my sister-in-law. My son's cousin, who has OCD, takes 5-htp (another amino acid) and he says it helps a great deal. She uses the Natrol brand. He does not take any pharma for his OCD/anxiety, and said when he stopped taking the 5-htp he noticed he felt a lot worse, so he now takes it again. As far as pharma for my daughter for her anxiety, we held out as long as we could, but she became unsafe and jumped out of a moving car. So we eventually we put her on an SSRI - it worked a bit, but never really well, so we switched to another, it also worked a bit but never really well, so we added in another, which, as expected, worked a bit, but never really well. Fast forward to a year after PANS diagnoses, and this truckload of supplement she takes!, she is off of all pharma, she took a class at the local high-school (and I didn't have to sit in the class with her, lol!), she now sleeps over at friends houses, and is enrolled in the Community College for the fall. So while the psych meds helped a bit, they were not the final answer for us. Sending you good thoughts for your daughter - and lots of good thoughts for you too! Hang in there mom!
  8. 1 point
    ejh

    Follow up blood work

    Bloodwork being normal is not unusual as far as I know. And does not mean that it is not an immune problem. Have you talked to a PANS/PANDAS specialist?
  9. 1 point
    maryangela

    Follow up blood work

    After suffering with OCD and intrusive thoughts for over 3 1/2 years, we finally were able to get a rheumatologist to prescribe a high dose of Augmentin for 30 days for our DS in 2016. During the 3 1/2 years we tried unsuccessfully to treat his symptoms with pharmaceutical meds. The doctor let us start the abx before his bloodwork came back, which ultimately showed normal Strep titers. She said we may continue the abx for the 30 days if we chose to. He had no response for the first ten days, but on day 11 or so his symptoms began to rapidly improve. Again, his bloodwork had come back normal. I think if the infection was too far in the past it doesn’t show up on the bloodwork, although the misfired antibodies continue to attack the brain. The Cunningham Panel is what got the PANS diagnosis for my DS. With PANS, there are 3 things to address: the infection, the inflammation and the immune response.
  10. 1 point
    cmac

    New diagnosis

    My son had a major flare this past February after a dental cleaning and two teeth falling out/then almost immediately the adult teeth came through. It lasted several weeks and was the worst episode we had seen since the initial onset. And my heart goes out to you regarding the intrusive thoughts--they were one of my son's hardest symptoms. He would sob in the middle of doing something or talking to us because they were tormenting him. Night time was the worst. He was so miserable and it took a long, long time for him to share some of the thoughts--basically he was afraid he was going to hurt us. I just kept reassuring him that there was nothing he could think that would make me or his father love him any less. And I kept reminding him that these thoughts were not him. I had him picture a stop sign in his head and then say to himself "I'm having an OCD thought about . . ." Also, grounding himself in the physical world helped. Tapping his feet slowly and calmly in a rhythm or focusing on three blue things he could see in the room and three things he could hear and three things he could feel with his hands--basically having him use his 5 senses to reground himself in the physical world instead of feeling trapped in his head. It is overwhelming--but you will start to find methods that help her.
  11. 1 point
    maryangela

    New diagnosis

    I know. It is so overwhelming. Let me know if you start the Oil of Oregano. If I recall we saw an improvement within a week with a high dose of Oil of Wild Oregano.
  12. 1 point
    maryangela

    New diagnosis

    My DS’s first major sudden onset of OCD at age 8, happened within 48 hours of dental work. The conventional psychiatrist he first saw said it was possibly triggered by the Nitrous Oxide. Apparently it can deplete vitamin B6 or B12 (can’t remember which). She threw that theory out the window after his labs showed no B Vitamin deficiencies. Years later, another PANDAS mom informed me that dental work is a common trigger for PANS/PANDAS. It can unleash hidden bacteria. Now my DS starts an antibiotic a few days before dental appointment (even cleaning), and continues for 2 weeks after appointment. I’ve been skipping the fluoride treatments for him. The dentist disagrees, but I don’t want to take any chances.
  13. 1 point
    bws1565

    New diagnosis

    I watched a documentary this winter called "Healing From Vaccines" . It was available online for free while running but you might be able to get it still. That gave me the final push to do homeopathy. I believe my DD's problems are vaccine related too although I cannot prove it. Her issues were executive function related, which are very painful for a bright kid like she is. And she did have intrusive thoughts at one point too.... I have stopped vaccinating about 7 years ago, although I was coerced into giving the MMR due to the outbreak in NYC. And YES I have seen reactions. And now we have lost the religious exemption here..... I will not put my younger kids at risk; looking at my options. I would advise you to stay away from ALL vaccines for your entire family. Perhaps have this reaction reported to VAERS, or at least put into her file. Risk of a flu or even measles is just not worth what we are going through. To quote, "It takes a of a lot of money to get rid of what a free vaccine did".
  14. 1 point
    bigmighty

    New diagnosis

    Are you doing anything anti-inflammatory? Try ibuprofen 3x a day for a week and see if it helps. Or try turmeric 2x a day. If she does even slightly better while inflammation is reduced, it's helpful to know, as it suggests something autoimmune is involved. Steroid tapers have helped my son several times. If you can convince a doc to prescribe them for a couple of weeks, that may be something worth pursuing. So sorry you are going through this. Sending virtual hugs.
  15. 1 point
    bws1565

    New diagnosis

    We are having good success with homeopathic remedies. I've been to a homeopath 4 months ago. She put DD onto a annual program, with the remedies being changed about monthly. We are currently moving onto month 4, and thankfully seeing good results. This is not a quick fix though.
  16. 1 point
    cmac

    Follow up with doctor

    I’m so sorry you’re dealing with this—it’s heartbreaking and overwhelming. My now 8 year old son was diagnosed last August—his triggers were strep and myco p. He was on daily antibiotics for months —several different ones and combo ones too—before we started to see improvement. He battled anxiety and OCD—rituals and intrusive thoughts. Has she been tested for myco p? I know you said you’re in TX—maybe a PANDAS doc could do a phone consult with you and order blood tests that your local pediatrician could do? And unfortunately most of the PANDAS specialists don’t take insurance and do cost a fortune! Oh, and not sure if this really helped or just coincided with him getting better, but cutting out gluten and dairy seemed to make a difference. They both can inflame the body and since PANS/PANDAS is an autoimmune disorder it makes sense. As it was explained to me the problem is two fold—getting rid of the infection and bringing down the inflammation. Also does she seem to get any relief from Motrin? That can help with inflammation too. Good luck. You will get through this.
  17. 1 point
    maryangela

    New diagnosis

    Let me know how the CBD oil works. There is also a supplement called NAC that we had some success with. There was a Yale clinical trial for OCD with NAC. You may want to ask her new doctor about it. The dose for the clinical trial was 900mg 3x a day. My son stopped taking it a few months ago, because he was tired of taking supplements, but recently said he wants to start it up again. It’s easy to find...Whole Foods, etc.
  18. 0 points
    maryangela

    New diagnosis

    I’m so sorry she is going through this. My DS was at crisis level OCD/intrusive thoughts from late 2015 to late 2017. We had never felt so desperate in our lives. He is about 85% better, but getting monthly high dose (HD) IVIG treatments.


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