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Everything posted by moosiebell

  1. The xylitol in the xclear is a biofilm buster, per our mold doctor. She says it can cause a herx reaction, and to go slowly with it. Perhaps try waiting a day or two, and proceed with xclear only, then add the other things as tolerated.
  2. Thank you so much, LLM. He is on Welchol for the mold. He has been on multiple antiinflammatories and current on motrin prn, fish oil, and was on quercetin prior to this week. He had a better day yesterday -- no klonopin at all. Lots of OCD but never got to the point of desperate despair. We'll see what today brings...I will keep you posted. And LLM, are you in Maine as well? Thanks so much.
  3. Update: so very thankful for you suggestions and support. This week we have gone to my son's doctor locally, a psychiatrist, called Dr. M and things are still extremely bad. My son says he is physically feeling better since moving from our moldy environment 3 months ago. The first month after the move (August) was pretty good and he reported feeling better and better. He was tested postitive for MARCONS (no fungal infection) and prescribed BEGI spray by Dr. M. He started about 1 week after school began in September. He had already had one course of BEGi in May. He became very stuffy and we started noticing a slow but steady increase in symptoms. We backed off to one dose a day with little improvement. We then saw a Shoemaker doc at the end of September. She suggested stopping the BEG spray and initiating Xlear spray with a few drops of Coptis herb, worried that he would develop antibiotic resistance and that the Beg was too much for him. In October we continued a very slow and steady decline. We attributed it to the stress of Senior year. He was on a part-time schedule. There were stressors-- he tried driver's ed but the 3 hour classes at night were way too much and thus quit-- and there is a virtual high school class that seems to affect that limbic part of his brain and he kept falling further and further behind. My dates were a little off in my last post. Dr. M prescribed the minocycline 10/24-- it didn't seem to alter the slow downward spiral in any way. I spoke with his mold doctor Fri Nov 4. She felt he may be in a long slow herx due to the xlear spray and said to hold it for now. Things got worse over the weekend, which brings us to this week. My DS became extremely ill as noted in the initial post. In hindsight, we realized he had a stomach bug (was unable to keep anything down for 2 1/2 days -from Mon to Wed- that we contributed to anxiety initially). We have been very close to hospitalization as he is in such despair. We saw the psychiatrist on Wednesday afternoon and he prescribed low dose zoloft (12.5 mg to start), klonopin as needed, and gabapentin to slowly titrate up (100 mg at a time). The klonopin is a dual edged sword. It seems to calm his agitated state, but does nothing to the profound obsessions around fear, catastrophe and guilt. Such tremendous guilt if he doesn't seek reassurance (about nearly anything-- a stick on the ground representing possible danger, etc) literally well over 100 times. He may 'get over it' and an hour later an unexpected sound brings it all up again and we are back to square one. The klonopin may disinhibit this process further. It is hard to tell. I was disappointed with Dr. M. Overall he has been somewhat helpful when things are going okay. When I called in crisis Wed early am, and again at noon, I didn't get a call back until 5 pm (left voice mail as we were with psychiatrist) suggesting that DS may have gotten something from the school (probably true) and suggested amantadine to shorten the duration of the illness but NOTHING to help with the urgent crisis situation we were in. It was like suggesting aspirin when your leg is broken. So I don't know what to do. And I'm sorry for this long post. Many of you have been there before. My doctor feels that his immune system is getting more robust now that he is getting out of the mold, but that he is fighting some underlying ailment (such as Bartonella--for which he has been treated for years, or Epstein Barr virus which is possible too I guess). I don't remember how to live a normal life anymore. Thank you all.
  4. My 17 yo ds has had pandas for over 5 bloody long years, complete with diagnoses of Lyme, bartonella and an inflammatory condition secondary to mold. He sometimes does well, other times limps along, but over the past couple months he has slowly gotten worse again. When we were in a house with mold (moved 3 months ago) his anxiety was more generalized with a moderate degree of OCD-- reassurance seeking, feeling he was responsible and guilt-- but with the help of a 504 plan and Dr. M in CT, we have managed where wasn't great, but we had good and bad days. Over the past week, his symptoms took a nose dive. One worry is literally cascading onto the next, and his brain is literally torturing him. I don't know if there is an accompanying virus or if what, but he also vomits after he tries to eat anything, and thus didn't eat at all yesterday. I took him to the urgent care on Monday, where his psychiatrist (who has only seen him once-- my fault... I have been so afraid of psych meds-- called in klonopin 1-2 mg every 6 hours prn with an appt on Thursday. The klonopin takes the edge off, but he still cannot escape his thoughts. He has been off antibiotics since February until Dr. M called in minocycline about a week ago. I thought his symptoms 5 years ago was our bottom but it is even worse now. I am so scared he will need to be hospitalized. I am so scared they won't understand PANDAS. I don't know what to do. We are in southern Maine. I will call Dr. M again this morning, but at this point there is no way I can get him in a car to travel 4 hours. Thank you.
  5. My son (age 17) has had this illness for 5 bloody long years and like most others, we have gone up and down. We found he was very sensitive to mold and even moved from our old house 2 months. We stopped antibiotics 7 months ago under Dr. M in CT. His symptoms didn't change after d/c the antibiotics. Initially after we moved he felt much better, and many of his symptoms have improved. For instance, when he is feeling well, he is truly himself-- loving, funny, energetic and creative. But those periods of time seem to be decreasing, and now prominent pandas symptoms are present-- excessive rumination, severe anxiety, his brain 'grabs' something to worry about (like something falling to floor and may have germs, or having something hanging over his head --like homework-- that will incapacitate him for hours). His brain tortures him. We have been through lyme treatment, pandas treatment, and now mold treatment. It seems like severe anxiety and OCD-like ruminations are what's left. We tried anti-psychotics and SSRI's back when he was 12 and highly inflamed, with disastrous results. Now I don't know. I wonder if we should explore returning to antibiotics (sigh--4 years worth) or re-look at an SSRI, SNRI or lamictal. I appreciate all your thoughts-- this discussion post is really helping. Thank you.
  6. Thank you, LLM. I have been giving zinc and manganese in the am only now (was giving twice a day) and have noticed OCD/ excessive worry waning. I tried the Core supplement with B6 and B12 and each time I tried it, his mind was racing and he couldn't sleep. He is having great days at school now, so am leery to change anything at the moment, but we still see a waxing and waning element of severe anxiety lasting from 15 min to 5 hours usually 2-3 x per week. BUT it is soooooooo much better than the past and I am thankful I see my son is emerging slowly but surely.
  7. LLM, Thank you. My DS14 also has PANDAS, Lyme and pyroluria. He is doing much much better over the past year with antibiotics, gluten/casein free diet and supplements including zinc and manganese. He revs up the Thorne #6 B6 supplement, so I have not been adding any B's (except what he gets in veggies/juice). I too have notice increased waxing and waning OCD and he is NOT on any copper. What copper supplement and B6 brand do you use? Any other suggestions? Again, thank you so much for all your help, Sharon
  8. I discovered a angry red doughnut size swelling with a center nodule on the inner aspect of my 13 yo son's leg a couple days ago. We brought him to urgent care, and he was diagnosed (by external exam only-- no culture) with MRSA infection (methicillin resistant staph infection) and put on doxycycline. He is on rifampin, zithromax, probenecid, augmentin xr and a bunch of anti-inflammatory supplements already. Does anyone have experience with this? My son's PANDAS symptoms have increased dramatically. Thanks, Sharon
  9. I discovered a angry red doughnut size swelling with a center nodule on the inner aspect of my 13 yo son's leg a couple days ago. We brought him to urgent care, and he was diagnosed (by external exam only-- no culture) with MRSA infection (methicillin resistant staph infection) and put on doxycycline. He is on rifampin, zithromax, probenecid, augmentin xr and a bunch of anti-inflammatory supplements already. Does anyone have experience with this? My son's PANDAS symptoms have increased dramatically. Thanks, Sharon
  10. Hi S & S, Why is your child on risperdal? I ask because we found our 13 yo DS got worse on it and eventually we took it away. He is now on rifampin/nystatin/zithromax and augmentin with much better results. The rifampin made the biggest difference.
  11. The IVIG's were 8 weeks apart. Thanks for the reassurance re the labs. They drew them on the second day of IVIG-- you would think they would make it standard practice to draw pre-ivig if the labs get skewed; otherwise why draw them? So if the ASO isn't skewed by IVIG, it shows persistent infection, doesn't it? Thanks again, S
  12. Hello, I am very frustrated right now. My 13 yo son had his 2nd IVIG with Dr. B last week. Routine labs were drawn which showed the following: WBC normal, Granulocyte 69.3 % (high) and Lymphocytes 1.11 (Low) ASO now 400 High (was 226 on 8/15/11 when this recent nightmare started) DNAase-B 255 (read as nl) -- was 168 on 8/15 Mycoplasma IgG >5 (very high) -- was 0.58 on 8/15 Mycoplasma IgM 26 (nl) -- was .35 on 8/15 I will talk with Dr. B soon, but wondered if anyone had suggestions. My son's PANDAS was EXTREMELY activated both times with the IVIG (he continues to do poorly today). Is he still infected with Strep despite being on zithromax 500 daily and augmentin xr 1000 twice a day? Does he have mycoplasma? I know the IgM is supposedly high when there is a recent infection, but also read some kids with autoimmune issue don't mount a response... All this, and our insurance company continues to deny IVIG (harvard pilgrim)... Thanks so much, Sharon
  13. Their email is: nurses@advanced-allergy.com Hope that helps, Sharon
  14. Thank you so much...every difficult journey is so full of lessons...as pandas parents we should all be freaking geniuses by now!
  15. I do not have specific recommendations, but there is a book by Kenneth bock m.d. Callied healing the new epidemic...he is a pediatrician who advocates vaccinations at a much slower rate than the typical schedule...His office may have doc recommendations. Sharon
  16. thank you, Nancy!!! I bought the clay at Whole Foods this evening. How much did you use? Sharon
  17. Hello, My 13 yo son will have his second IVIG on Mon and Tues with Dr. B. On his last treatment, his PANDAS sx went through the roof for a couple weeks before he began to improve. Luckily we had few direct physical side-effects from the IVIG (no headache or vomiting) but his OCD, hallucinations, and fear were at at all time high. Has anyone had success with bentonite clay or activated charcoal. I bought some charcoal today, but there is no way my son will take that size pill. Thanks for all you help, Sharon
  18. Our son has had one IVIG with Dr. B and will have his second next week. Dr. B. never mentioned whether he should or shouldn't go to school, but because our son's symptoms were exacerbated by the IVIG (apparently many kids get worse initially and then better), we kept him out for a few days, before returning to a curtailed school day (secondary to his PANDAS symptoms, not the IVIG). I hope that helps, Sharon
  19. Hi, I would love to her what Dr. K said-- my son is 12 and is really struggling with OCD and hallucinations-- very terrorizing. We see Dr. B. and are starting the process of IVIG but overall we feel so helpless. What are his thoughts around the adolescent pandas kid? supplements? type of antibiotics most effective post-IVIG, etc. Thank you so much, Sharon
  20. Can you share the neurologist's name? Thanks!
  21. Dr. Price recently 'cut us loose." When antibiotics didn't work, or IVIG, she basically didn't want much to do with us. When I offered ideas from research I'd read, it was often met with not much excitement. She finally told us when denied for PEX that she wasn't going to do much of anything and we should go somewhere else. Yes she gave anti biotics, IVIG and tried to get us PEX (to shut me up from bothering her with ideas) but she gave up on us. Dr. Wu, on the other hand had lots of "outside the box ideas" and was open to any ideas when we were at a stand still. He recently prescribed the Respin A patch for us (see other post) and is determined to fix this. I think we received needed things from both. You and I discussed insurance off line and I know he does not take yours. The first visit is about $200, but he will call and help a lot after without additional charges. he treats both PANDAS and Autism and knows a lot about neurotransmitters which I think if antibiotics don't work, are a vital part of this. But if your child can't take them, she won't be much help as she knows nothing about natural supplements to fight infection. Dr. Wu takes about 6 weeks to get in. His follow up appts are $115, but again will call you himself and guide you along the way in between. He's about 20 closer to you too. Nancy
  22. We are trying clomipramine 25 mg per day right now-- no noticeable difference yet. PowPow, what dose are you using?
  23. I was happy to see it in the Post as well. NIMH continues to talk about CBT and SSRI's, which is such a small part of the treatment for most kids. Nonetheless, the publicity is great. I wrote a blog about my son's and our family's journey at www.drsharonkelley.com I sometimes still can't believe how devastating this illness is...
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