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Everything posted by T_Mom

  1. Hi Hayley-- Give it some more time. Our youngest d had IVIG about 12 weeks ago now and we also went crazy for the first 9 weeks--really bad raging, destruction, etc. She also had anorexia as a result of the PANS episode. We were really despairing and then about week 10 post IVIG she turned a corner. She started eating - for no apparent "new" reason, and her behaviors started to improve. We had a reasonably good Christmas, still some PANS but to a PANDAS parent it was much -- much -- beter then she was pre IVIG! Hang in there, and look towards weeks 10-12 would be my encouragement.
  2. Hi KK-- In my opinion delaying trying a steroid burst, for 7 to 8 weeks as you wait for the Cuningham test -- is not worth doing -- when any child (and YOU!) are suffering this way-- The steriod burst is no big deal for 99% of the kids, and IF it shows an obvious improvement in symptoms, then you have both some relief as well as a confirmation that brain inflammation was a contributing culprit. I would not wait, things can (and often do) get worse! I am sure you have seen Buster's step by step flowchart for "what to do" pinned under the "helpful threads" at the top of the PANDAS thread??? It is closest thing around (and timeless) as far as a guidebook-- I really would not wait for the late-February opening of the lab, what if the lab opening is delayed? This is your child's month of January 2013, and it only comes once! Having two kids treated over 4 years, I have become much more proactive as WE wasted a tremendous amount of time waiting to treat our girls, as they suffered,and so did we.
  3. This is really hard -- if in a public school I would recommend an IEP or 504 on the basis of "other health impaired" -- 504 will give you more "time" for tests and assignments, the IEP can get more, but it may be a pull out program in the resource room and the other kids in there may be a consideration. Can you meet with the school counselor to discuss the concerns. Maybe go in with a list of your concerns and what you believe would help. They may be able to help without the paperwork and labeling. We had older high school kids to help with HW after school, and/or tutors if necessary to keep the work "OK", I also had almost daily contact via email with the teachers and the special ed. teacher at the school collected assignments/test materials, etc. for us -- Bottom line though: If your child is in a bad exacerbation nothing you do will help--it is only a band-aid until they get proper treatment and get better.
  4. Thanks for posting T. Mom. This was the most alarming post so far. Your daughter is the same height and 7 pounds heavier than my son and the doctor is recommending admitting her for inpatient treatment? What exactly is refeeding? Alex ate more today. The recommendation of leaving a tray of food out and not asking him what he wants to eat was helpful, and we had his favorite take-out for dinner. Our pediatrician, who works with lots of autistic, pans and other special needs kids, is recommending a smoothie with whey protein powder once a day for the additional calories, protein and glutamine. We also talked about the fact that some of the weight loss is probably muscle loss from laying around at home for 6 weeks. She is also rechecking his WBC, which was low 6 weeks ago, and iron and zinc levels. She said she doesn't want him to lose any more weight, and wants to work on putting on the weight as he recovers from epstein barr. We'll see how it goes. I don't think I'm seeing signs of anorexia, but I'm aware I'm no expert, so I am going to monitor this closely. Hi -- I am sorry to alarm you, but yes, my daughter is 5 feet tall, 77 lbs and just turned 13. Because her BMI is considered dangerously low the anorexia doctor is recommending inpatient care with a supplemental feeding regime, to ensure she is renourished as soon as possible (since fighting us at home.) We are doing all we can to keep her home and do FBT (family based therapy) with specialists in an effort to restore her weight and avoid hospitalization. Here are two links to the CDC BMI chart info. by age -- plug in the numbers -- age/height/weight and it will give you the body mass index. http://apps.nccd.cdc.gov/dnpabmi/ (the chart for calculating BMI by age) http://www.cdc.gov/healthyweight/assessing/bmi/childrens_bmi/about_childrens_bmi.html (general info on BMI) You might also want to google "re-feeding syndrome" -- our doctor was very concerned about this with our daughter when she was down to 73 lbs and we were starting to monitor her eating. We had to have blood checks for various levels every 3 days while her weight was reestablished (once they start to eat again it can get dangerous, as the body may have a seriously bad reaction.) Re-feeding syndrome needs to be monitored once a person starts getting nourishment after being so malnourished. Did your doctor give you a meal plan or guidance on renourishing him? We are using Ensure Plus, on top of a regular meal plan. Hopefully this weight loss for your son is a temporary result of the other illness and he will quickly return to health. I would encourage you to read about re-feeding syndrome and seek help if needed as soon as possible. My best, pm me if you have any more questions, glad to talk.
  5. I am so glad your son is seeing Dr K. I will be very interested in the results for the eating issues after IVIG. Please keep us posted! All the best to you--
  6. I can share that I was most likely the most scared mom you might meet, re: steroid bursts. Having battled PANS episodes in two daughters now -- over the past four years, I only wish I had listened to Dr. K earlier! I believe his words were, 'It is a no-brainer' and something like, "if your child is like this in 20 years will she be OK??...(rough quotes, but you get the picture!) You will not know until you try. The road post-steroids can be ROUGH for a relatively short amount of time at first, and then, then if PANS is the issue, you will see results that can make your child normal again. --at least for a time. Dr. K uses it as a "test" to see if a child might then be responsive to IVIG, other doctors use it as a treatment. Good luck, and again, you won't know if it can free your child until you try. For us it was a relatively benign treatment with great potential to restore normal childhood. During one terrible episode with my older d, a neurologist said to me, (as my d crawled around the floor of the office lobby), "you cannot leave her like this!" Thank God we did it.
  7. I agree with the others who have posted -- this is a problem. We are battling a PANS related morphing of OCD into anorexia episode. My 13 year old d is 5 feet tall and is down to 77 lbs, and the doctor of the anorexia clinic recommends inpatient refeeding. Yes, this is a problem. I would recommend you get to a clinician who works with family based Maudsley methods to combat anorexia in children. Refeeding is essential for PANS to recover. My best--I know it is hard.
  8. hi--Can you please tell me the weight and dosage of Augmentin and of Azithro that your son was/is on??? We are considering changing up our d's abx, thank you very much.
  9. very funny! ...though seeing that big giant panda makes me want to buy a gun.
  10. Hey Thenmama, I am curious about the timing and "ups and downs" issue, w/ abx, interesting. I really just wanted to write to encourage you to keep the "6-12" week vision for post-IVIG effects, time...it takes time. all the best to you -
  11. Just seeing this thread...and four years since the first PANS outbreak in our home, I want to add that I am -- and will ALWAYS BE THANKFUL for this forum --
  12. I am thinking of you and praying your daughter is making a good recovery.
  13. Hi--I am wondering what you mean that: "Her bloodwork/immune panels don't show that she would be a good candidate for plasmapheresis or continued ABX. So we are off the abx " What bloodwork indicates whether or not a PANS child is a good candidate for pheresis? As far as I know, there are only one or two doctors doing pheresis for kids, have those doctors told you she is not a good candidate? Your d is still entrenched in intrusive thought OCD, I can tell you that pheresis was what completely put a stop to our d's intrusive thoughts within two weeks. Thoughts which had persisted for 9 long, horrible months. She had difficulty focusing due to the thoughts, they were very bad. I guess I also wonder if the fact that your d is not on abx could be contributing? Obviously I do not know the entire story behind your d's situation, but if she is no longer on abx, if you can, would that be a prudent step to see if these would help?
  14. Need you "experienced parents" to share your advice. If your child had a PANS/PANDAS related eating disorder (as in went from 85 to 75 lbs.) restricting, etc. AND you did IVIG, was your child "weight restored" or under weight still when you did IVIG -- and most importantly: Did it make a difference? Thanks.
  15. I am in the DC area, would be more than willing to attend this mtg/discuss etc...we are ready to march downtown and see our Senators, still fighting for a past IVIG, with a federal insurance! pm me.
  16. just agreeing with the possible effects of Omega...after a year my daughter started saying that the Omega brought on tics and OCD again(?) we dropped it. I think you need to get to a PANS treating neurologist and settle in. If your son had remission with past tx -- can you pull any clues as to "what works/ed for him?" My best--
  17. I agree with the others--I have not heard of PEX as an outpatient. The PEX done at Georgetown could only be done as inpatient as it requires constant blood level monitoring, etc. Best to clarify the procedure coding with the doctors at Georgetown and be certain that your insurance understands the coding is inpatient(?) just a thought-- You may want to ask the doctor's office to contact your insurance re: this issue directly for the most direct clarification.
  18. Hi--Two daughters, both had IVIG and I know the 5 week mark seems like a "long" time right now, and that you are feeling that you should be seeing "more" healing, but it takes time, and more time-- For us, the comment re: a full year after IVIG was true for my younger daughter (and she was very severe.) Give it more time--You have seen improvements, be GLAD (I know you are:) and take heart that this does mean your child's illness was affected, now the healing and re-setting takes time-- I would look towards the 12 week mark, and see where you are then, and so on...Important to continue to treat with the abx of course, and get that next doctor appt. just in case at 3 months you see a backslide that may need help. If you have not seen a counselor who treats OCD I think that may be helpful for lingering "habitual" issues if they persist, just my opinion--I wish you the best.
  19. --We saw Dr P. for a few months, a few years ago. She would not try changing abx when we asked about azithro., only Amoxicillan/Pencillan at the time. She was not supportive of IVIG nor pex. for Ps. I don't know if she is still in touch with the Pandas/PANS NIH work-- You may want to ask if she is in contact with the NIH team, it has been many years since she was there. We ended up changing and saw a CBT specialist for support with the symptoms of Ps. DeterminedMom, pm me if you want the names of CBT specialist in McLean, VA, and the behavioral support group that helped us--DCMom also has someone she liked in DC.
  20. I am guessing that due to your daughter's age and symptoms Dr K is advising another one -- since she is 70% right now. Our daughter (at 12) had IVIG last year, it has been a year of healing...however, she was about 90% within a few weeks initially. I am only speculating, but the age is of greater concern, I think. I think you will know--and honestly, if it was me, I would probably go ahead and schedule it, so it is possible if/when you decide.
  21. thanks Philmom--I will pm you -- Hopeny, I agree a call to our treating doctor is a good idea, thanks. Sad, but true, despite the fact that both kids are on abx. this seems to me to be a potential problem -- but I am unsure still.
  22. We have a family member visiting right now who may have an active shingles episode. Does anyone know if this can be a problem for Ps kids???
  23. ...YYYYYYYYYYYYYYYYYYYEEEEEEEEEEEEEEEYYYYYYYYYYYYYYYY! So good to hear--and how perceptive that she recognizes your tenacity, strength, and perseverance -- Great to read this post, thank you for sharing it.
  24. We knew it was time to "find a treating/knowledgeable Doctor" when our pediatrician of 12 years essentially said that Ps was controversial, yet she could no longer help us--and we were losing our daughter. I really liked this doctor, but thankfully there was another (younger) doctor in the practice who was interested in PANDAS and willing to work with our Ps treating doctor. I guess it comes down to just what you expect out of the doctor--treatment for a common cold, etc. then OK, maybe that ped. will suffice...BUT if they are not going to treat the illness your child has, well then...
  25. Pandasmex, are you the family that attended Dr L's talk at the OCD conference two summers ago??? Great to hear of your son's recovery!!! Thanks be to God.
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