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T_Mom

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T_Mom last won the day on January 14 2014

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About T_Mom

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  1. Would you (both) mind sharing what meds or supplements your child is on? We are considering the Roger's program, but timing is tough--thanks
  2. Hi--First, I am sorry you are going through this--and second, I have not been on this forum for some time now, but just revisiting tonight and saw your post. Bottom line: Read everything on the www.pandasnetwork.org website. Second, if you have a doc who thinks Ps may be the issue...TRY a month of full strength Augmentin to just see if there is any change...benign enough, I think, and worth a try....make sure it is a 30 day trial though, and forget about the titres, just about everyone agrees it is tough to "catch" them at the right time to see an increase or rise, so forget those as ind
  3. Good to hear the positive update LLM !! and to see you are doing well MomWithOCDSon ! Yes, having an older teen -- senior in HS and heading to college makes me hopeful. I am sorry your youngest is still wrestling with issues though LLM, and I understand the age related fatigue!!! Home schooling in middle and high school is more than admirable -- good for you !!!! Thanks again for sharing the article-- our youngest was switched to it today.
  4. llm--Our eldest, is great, headed to college next year, and academically strong. (We are so thankful.) I think it was having pheresis followed by IVIG a few months later.) She has been clear for 3 years, and weaned herself off of abx. (she told me last week.) For the younger, struggling continues. Less volatility, but OCD is crippling, and academic failure. Able to only do 4 of 8 classes this year and last. Still struggling. IVIG 8 weeks ago, saw good improvement, and then she started declining at 4 weeks post-IVIG, tried IV steroids at 6 weeks post-IVIG, helped a bit, and now tw
  5. THANK YOU for posting this LLM!!! Great article...and makes me want to run there tomorrow to see what they think. wow!
  6. Hi Susieq22, We see Dr L and she indicated no need to stay out of school post IVIG. May I ask who you see and did your doctor indicate when a second IVIG would be done if needed ? Thanks//
  7. Hey Surfmom, so great to read your post tonight--you have captured my own feelings in numerous points. Isn't it amazing how similar our experiences are, this never ceases to amaze me...as it is all too bizaare to make up! Thanks for your reflections--well said!
  8. Slightly off topic, but thought maybe someone here might have an insight on this??? I just watched a clip on new discovery re: synapse connections and autism, and the VP of A-Speaks discussed a research study using one of these two antibiotics which appeared to rid the mice of "symptoms of autism"...and they used an ANTIBIOTIC!!! (I can't hear the video clearly enough to hear if it is Rifampcin or Rapamycin... Has anyone used either of these with PANS? Results? Just wondering...thanks. http://blog.theautismsite.com/SynapsePruning/?utm_source=social&utm_medium=autaware&
  9. Check iron level -- both of our daughters have low levels, also might try B-12
  10. A very pro-active site!!! Way to go to "whomever" is the "muscle-guy" heavy-lifter behind this effort!!! THANK YOU! (again no doubt !)
  11. Excellent responses in the comments above--Our experience has been over 6 years with two kids, and both have been treated with strong steroid bursts, at times for a month at a time. No big deal. One d diagnosed with lyme, both with PANS. Both benefited from the treatment -- it diminished inflammation--worked well. I was afraid to try it at first, but our PANS doctor recommended, in fact, it was recommended the first time with my first-flairing daughter by a non-PANS doc! He was a savvy neurologist. When he said he would do it if it was HIS child...we knew it was worth a try, an
  12. I don't know if this will be encouraging or not, as I sadly know that IVIG and pheresis are not always readily available to everyone, but I want to share our experience, and encourage you to have hope that WITH TREATMENT he will be back. Yes, this can happen, and it can happen more than once. Our d's symptoms literally morphed from severe OCD to ODD with seemingly little we could do to recover her--she was in 5th grade the first episode this happened, it was unbelieveable--She became someone else and was uncontrollable. I have an advanced degree in special ed...every behavioral intervent
  13. Hi _anna, how is your sone doing? Do you think the cellcept is helping? hope things are better--
  14. The effects may take awhile to be evident -- and it may be a week to week progression...two steps forward, one step back....Ask him in 3 to 4 weeks if there is an improvement, and have some way to quantify the symptoms, a checklist, a tally--something that is objective. His own "feeling" may be affected, but slowly...six months from now, that is when you will have a better picture of the outcome/results from IVIG...just our experience, hope that helps.
  15. Hi, we went to the Rothman Clinic last summer for the 3 week (once a day for an hour only) intensive CBT program for OCD. My daughter's have both had severe anorexia issues in the past, and fairly straight forward PANS issues, (ie. textbook). The time at Rothman was amazing. Therapist was very, very skilled. However, my daughter DID NOT have eating issues at that time..and she had just had plasma pheresis a few weeks earlier..she was doing better post-pheresis (she had severe OCD and raging issues) and was "available" to the intensive CBT thanks to the pheresis...it was still a very ro
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