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Everything posted by July-Fireflies

  1. Hmm, Our policy as prescribed by our naturopath is that anything that seems to cause a flare is discontinued, with symptoms noted. If this is a supplement you feel is necessary it can be reintroduced later using the start low and slow method. Can you get probiotics another way? Fermented foods, miso, kombucha, etc? Sometimes it's better to get it in a food as that particular supplement may be tolerated better as the food contains other nutrients that work in an entourage effect. Good luck, we've had horrible OCD flares here too and it's no fun. You sound like a strong, intelligent, proactive person!
  2. You made SURE that brand of probiotic didn't have a strain containing strep? Many do, that has commonly triggered flares in many many kids. You can search it on the forums on FB. You can take the kids probiotic Culturelle found in most drugstores.
  3. Hi Misty, they do offer outpatient, we did inpatient for my son's OCD, anxiety, and managing verbal and motor tics. I feel they worked a miracle, he was refusing to go to school for over a year, anxiety was so bad. Now he's in a great supportive boarding school. The facilities there are beautiful, the staff at the inpatient clinic was VERY experienced and supportive, but again...our only experience was the in patient clinic...I think best thing to do is call any facility and see if they think their program is right for your kiddo! Let me know if you have any other questions..we've been at this for a few years!
  4. Our child was recently discharged from Rogers Anxiety and OCD inpatient clinic, is this the part of Rogers you are looking at?
  5. Thank you, I think you are probably right as others have mentioned the same...thank you!
  6. Hi, my 16 yr. old son has pans symptoms of verbal and motor tics, OCD, and some regression. We recently tried high dose abx for 1 month and low dose Naltrexone but saw no improvement. Now trying a steroid burst of prednisone 40 mg.tapering down for a month. He has been taking it for a week with no visible improvement, in fact motor tics have escalated tho this may be due to weaning from risperidone a few weeks ago. I feel we should be seeing some effect from the steroid by now if it's going to work. This also worries me as Dr. says response will indicate efficacy of ivig for him in the future. If there is no improvement with steroids does that rule out ivig? Then what is left treatment wise? I'm getting scared that we're at the end of helpful treatments and going to be forced back to psych meds to control tics, etc. Help Help! Worried mom!
  7. It has been really hard for him, it did cut his social life off at the knees. We are putting our trust in a Naturopath here in Portland who provides integrative medicine, she seems very confident and knowledgeable about PANS. I don't know, this is month 7, he has had a pretty major relapse but seems to be slowly getting better again...thanks for the reply!
  8. Thanks for the replies! I guess we will try a modified anti-inflammation diet. My DS is tapering off of Risperidone so maybe it will also be helpful in losing some of the weight gained while on it.
  9. Hi, In my daily and nightly search on the Internet for more info on the treatment of PANS I keep reading recommendations to try to keep my child on an autoimmune or anti-inflammatory diet. Has anyone found this helpful? I'm interested because it seems like something proactive I could actually do while waiting for tests and other treatments that are in the hands of our doctors. My 16 yr old DS loves sweets, also he is still on Risperidone for tics, although weaning off..this makes him hungry all the time. Any thoughts?
  10. Thank you for your reply and encouragement. My son has had OCD symptoms since this all started in September. He's never had it before and we didn't realize how tied in it is to anxiety..he goes to a private school, they are very understanding, but not required to provide homebound instruction. I will take a look at Khan Academy, thanks for the idea!
  11. Hi, I'm a mom with a 16 yr. old son diagnosed with PANS in September. We have been on the familiar roller coaster and are now waiting for results of the Cunningham Panel. In the meantime my son is out of school with severe anxiety, OCD, and intermittant verbal and motor tics. I'm wondering if there is anyone else in Portland who would be interested in forming a support group. We are basically shut ins right now and feel very isolated and discouraged. Thank you!
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