Jump to content
ACN Latitudes Forums


  • Posts

  • Joined

  • Last visited

  • Days Won


Everything posted by 3boysmom

  1. I haven't been on here in a long time either. So nice to hear things are moving in the right direction.😊 We are doing well also, I'll post an update soon.
  2. Had to call 3 different pharmacies as well here in Texas! Getting worried because the pharmacist told me that he heard that they may be discontinuing manufacturing Augmentin XR 1000!
  3. I believe the answer is yes. I know that at least 2 of those were tested, but I will ask that the doctor to retest. Thank you, I just know that there is something that we are missing. He is on Acyclovir and Augmentin. Already treated for EBV, Mycoplasma, Candida Glabrada, H. pylori, and a few other coinfections. Began with the strep and then coxsackie. He was also tested for foliate, methylation, MTHFR mutation, Lyme, the Cuningham's test and a few other things. (also, 6 IVIGs and we a glutton free and dairy free) I am going to ask for retesting of yeast as well. Any other thoughts...I'm open.
  4. Hello Friends, There is no time or energy to revisit our 4 year history on all the things we have done up to this point. We do know that we have moved from plain ol' PANDAS to PANS for the last year. Our DS14 is doing very well compared to the overnight dysfunction 4 years ago. I was thinking about ordering 23 and me as our next step. DS14 still has OCD, ADD, and also added vocal tics last year with the lovely Coxsackie Virus. His OCD and ADD used to be a 10 on a scale of 1-10, but seems to be manageable at a 2 or 3. So, life is manageable for him and no longer torturous. The tics seem to be getting worse. Here are a few things that stand out: He is never cold and sweats as if he has just climbed out of a pool (NOT exaggerating) Excessive sweat Excessive heat Excessive ear wax Excessive bowl movements (3-4 times a day, but not diarea) His vocal tics seem to be worse during a full moon. He has been tested 3 times for Lyme and yes, with Igenex. He was bitten by a tick 5 years ago and I still have that lingering suspicion. But when all the tests come back negative for Lyme.....could it be a false negative from being on antibiotics? I am suspicious of some type of parasite but he has been tested in the past. Not sure what I should be asking the doctor to test for next. I am going to ask about glutamate as well. Thanks in advance, Linda
  5. You could search the topic section of this forum. Adults with PANDAS have posted on this forum other times over the years. Also....DON'T forget to take probiotics and you may want to try diet changes to Glutten Free. Good luck on your journey for answers and keep us posted! Linda
  6. Please add us! Power of prayer in numbers! Linda and the 3 PANDAS boys. 2 doing great and 1 still healing....
  7. You can try and call Dr T in New Jersey .... He gave us a phone consult right away....cost $400. But found the answer and antibiotic we needed. We are all praying for you.... This is scary, we know!
  8. Don't leave or sign the 504 meeting until you see the written plan. If it isn't written out then ask to "table the meeting" and you will come back to sign when the agreed upon accommodations are written on the plan.
  9. My abusive ex-husband was a gift that I would not trade. I was very young and it was 30 years ago, but it has reminded me every day for the 27ish years thatI I have been with my current husband, how blessed I am to have him. So instead of choosing to feel bitter, I have chosen to feel blessed. I would have missed noticing and appreciating the wonderful qualities in my current husband. So he is lucky as well because he is not taken for granted. So, we always tell our boys that we are sure that PANDAS is shaping them into some incredible future adults.
  10. Our ds13 (14 in 2 weeks) is on Augmentin XR1000 twice a day as well. He weighs 135.
  11. Isn't it nice when our kids take away hopeful news after listening to the doctors during their visits? So glad he is smiling; means he heard something "hopeful".
  12. I would also test for viral infections. Coxsackies is a popular problem with our PANS kids. Also, yeast issues.
  13. T Anna, I know you are not new to all this, so you have most likely read or even tried NAC already. There was a very reputable research paper written on how NAC really helped people with trichotillomania. Doctor suggested us try it for our DS with his skin picking. Worked great for the skin picking until the Coxsackie virus and the new onset of vocal tics. We stopped everything while looking for the trigger. As he is slowly clearing the Coxsackie titers and improving, he began to " pick" again and Ds asked for us to give him NAC. It seems that NAC increases his vocal tics a bit but has been helping a great deal with the picking. He said that he would rather have tics than picking. The other 2 boys are on NAC as well. One swears it helps his anxiety and the third boy says he isn't biting all the skin off from around his fingers ( still bits his nail though, but MUCH better ). Our school nurse's son is a " picker" and so I told her about NAC and he is much improved! Blessings, Linda
  14. If real Valtrex is too costly (was $400. A month for us). Switch to Acyclovir, virtually the same but much more affordable. Given at a slightly higher dose than Valtrex.
  15. I can't remember, does she have mycoP as well? Our doctor believes that myco can skew the titers of other infections. Can't remember exactly how he explained it, but myco can effect coinfections.
  16. Hi Jag, been hanging around this forum with you for a while now. We have always seemed to be in similar circumstances with our kids... DS13 just got back from a week of camp and did great (probably the only kid that packed 20 pairs of underwear and smuggled in a few rolls of toilet paper ... In case the camp ran out). BUT went and WANTED to go. I was a nervous wreck that whole week so you are braver than me doing 3!! It's been a long road....so happy for you both! Linda
  17. Dr. L is a. PANDAS neuro and so is Dr. T. Post where you live and others should chime in with doctors they see.
  • Create New...