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Everything posted by Sheila99

  1. We saw Dr. Thomas Lin in Irvine. I found him through this forum. It was Dr. Lin who dx'd DD9 with Pandas and continued her on the ABX Zithromax, while DD9's Kaiser SoCa dr. at the time did not believe it was Pandas. Dr. Thomas Lin info:Irvine Kids` MD, 4634 Barranca Parkway, Irvine, CA 92604 Telephone: 949-681-0777 Fax: 949-654-7668 Email: autismmd@cox.net Website: www.irvinekidsmd.com
  2. So glad to hear your son is doing so much better. You all deserve this great turnaround! All the best, Sheila99
  3. Our DD9 pandas (ocd/high anxiety) began 5/2/11. Started 5-Day Liquid Zith 6/18 up to 8/22. OCD lessened and DD said by 8/11/11 no longer having thoughts. Came back temporarily upon return from vacation (8/22-24). Had to switch to penk (2 x 250 mg/day) due to clostridium, even though on 50 billion probiotics. Keeping fingers crossed, now w/ new school year.

    1. Sheila99


      DD9 has been off abx since 9/23/11. She is doing well. Thank you so much Nancy (momofocdson) for your help! And to all the great parents in this forum!!!

      Key is to get abx ASAP, especially azithromycin or augmentin. AND, lots of probiotics! DD9 is also on Omega 3 and 4000 iu Vitamin D. Also, lots and lots of faith, and prayers to God!

  4. Hi S&S Mom- I'm really hoping there's Kaiser doctors here in SoCA that are more open...the Neurologist we saw last week most definitely NOT on board this is PANDAs right now, since puberty is involved, so he needs more clinical evidence. But he says he has seen/treated kids w/ PANDAs, but he does not like to call it PANDAs. I will continue to consult with other neurologists. Never easy...always have to fight for everything...
  5. We're just starting the PANDAs route. Had to go outside of Kaiser (to Dr Thomas Lin) to get more PANDAs expertise. He put DD9 on Zithromax for 30-days vs. Kaiser Dr who put DD9 on 5-day Zith, then 250mg 2x day Pen. Dr. Lin thought it was too soon to start using Pen when her ASO titers were so high. So grateful for his intervention, but out of pocket will become very expensive for ongoing consults, so had to look at my insurance, Kaiser network resources. I was not happy with her Ped Dr (same one since birth); had to review all directory of network pediatricians in Kaiser system (see ww
  6. Oh, what else gave DD9 confidence were the Vitamin D pills that are clearcoated. We're giving her the 2000 IU per pill, slightly bigger than the 1000 IU pill. She's cutting up the Zithromax to same size as the 2000 IU, making her comfortable to swallow. Re: the probiotics, the PANDAs dr recommended the higher CFU probiotic, (its the Therbiotic Complete 25 billion CFUs), but hoping to switch to powder form or better flavored kind once the two bottles I ordered are done. Thanks for the suggestion...
  7. RE: Taking Pills and Fish Oil (Omega) DD9 had the hardest time with the liquid form Azith; was then given the 500Mg pill. We tried cutting up pills and was given with apple-sauce, jello, and after a while not working. Pill would dissolve in apple sauce and the jello gave her the runs. She was afraid of choking so needed the help to get the pills down. Fireman friend told us to put the cut-up pills in the middle of banana slices....it worked! Now she's still cutting up pills (from 8 pieces down to 4), and no longer needs the banana slices to take them. Slowly built up her confidenc
  8. The probiotic he recommended us to use is Klaire Labs Ther-biotic Complete with 25+ billion CFUs 2x/day. I asked him if I can use another probiotic, since I was concerned it had the strep therm in it and I know some Pandas kids should not have the ones with strep therm, based on Forum info. He said this one is the only one he recommends for his patients as it is one he is most comfortable with and the strep therm in it is totally different / unrelated to the strep we are concerned about. I googled strep therm and it's in cheese/dairy...so we are trying it. So far ok for DD9. Using the caps
  9. By the way, we will be skipping the Moxxor and will be trying the Coromega Omega 3 we bought from Vitamin World.
  10. Yes; we met with Dr Thomas Lin for first time, based on recommendations by parents in this forum. We like him; very helpful. Right away thought the 250mg PenVK was too low; switched it up as he recognized that basal ganglia most likely still under attack due to high ASO. We are just starting our journey with him and are optimistic we have someone who understands PANDAs. Best to you, Sheila
  11. Hi - we decided to see a DAN! Dr who also treats Pandas kids. He diagnosed her as PANDAs, while her regular ped still skeptical strep caused her OCD. DAN! Dr recommended to put DD-9 on 500mg Zithromax for 2-months (vs. her regular ped who wanted her on the prophylactic 250 mg PENK) to reduce her OCD symptoms by 80%. Also recommended DD to take Moxxor (which contains polyunsaturated fatty acceds extracted from New Zealand Greenlip Mussel. OMEGA 3 potency at 79.00 is higher than Fish Oil (0.50), Salmon Oil (0.32), and Flax Oil (0.20). Moxxor Mussel Oil has anti inflammatory value that is hi
  12. Just was wondering why DD-9 is always so hungry. Ay-yay-yay...maybe she's now developed yeast infection, as she is ravenously hungry. She started her Zithromax 6/18 and we are now on Penicillin. I know, I know, I should have been giving her probiotics but was so confused on brand and potency. I started last night, with Nature's Way Primadophilus orange flavor chewables, with 3 billion cfu. HOpefully it's not too late to reverse the hunger binge...other than giving the probiotics and continuing her ABX, is there anything else I need to do to address the yeast infection? Thanks, Shei
  13. Just was curious if those who went the IVIG or PEX route no longer has to take ABX on a long-term basis?
  14. Hi there - I was thinking of getting the Pearls probiotic (as recommended by Vickie). What others are there that you moms are using...someone mentioned to make sure it didnt have strep strain on it otherwise the efforts from the ABX is nil. Thanks -
  15. Thank you all so much for the advise. I will digest all of it and get it going...Sheila ~
  16. DD-9 that has high ASO, but asymptomatic finished her 1st 5-day Zithromax this past Wed (6/22), and Friday we finally got her Penicillin in liquid form (cherry flavor) as prophylactic. Dr wants her to take 2x/day (each 1 tsp = 250 mg, so 500 mg total). Ped Dr wants to do this for remainder of the summer and come back for reval, plus to give chance for therapy to work. Good news-her bad thoughts OCD got better under zithromax, not 100%, but much better than we've had in the last 7-weeks. But unless I can solve the sensitive taste issue, this will be 3rd day without the propylactic ABX. I'm
  17. By the way, I just want to correct the heading "DD just got diagnosed with PANDAS" to I diagnosed the PANDAS. Her Pediatrician has not come out and confirmed it. Today is last dosage of Zith liquid form. It's 200 mg. Took it for 5-days. DD9 still having intrusive thoughts..anxiety before bedtime. ABX in the form of Sulfadiazine is being recommended as prophylactic. Dunno dosage yet as ABX wasnt ready yet this pm. Will be trying it for the summer and re-take the ASO test at end of summer and check on side effects. Has anyone done this type of ABX prophylaxis? Tnx, Sheila
  18. Hi All- thanks to all of you (and NANCY-MomofOCDSon) I have better understanding of what's behind my daughter's OCD. Nancy recommended I ask for strep test even though DD never showed symptoms. DD's been saying she's been having this "guilt" feeling since she was 3 yrs old. Kinda hard to believe but it's possible since she kept getting sick with high fevers and ear infections. Bad thought OCD peaked now and still in the middle of it. Dr informed me today that my DD's strep test was off the charts, and will be giving her zithro...and antibiotics everyday to treat this type of strep.
  19. Dear Moms - THANK YOU NANCY, for suggesting to get DD checked for PANDAS. Results just came back and her strept test(ASO) is very high at 588(nl is < 151). Dr starting her on Zithromax. Keeping my fingers crossed.... Sheila
  20. Hi - thank you for bring up the topic of twitching while sleeping. DD-9 just started with the bad thought OCD in early May 2011. Was giving her Kids Calm MultiVitamin w/ 250 mg magnesium, and after 2 weeks of being on it I noticed the twitching that happens ONLY while she's sleeping. Took her off of it, considerably less twitching, but still some. Nancy (Pandas Mom) recommended I get my girl checked for PANDAS; awaiting results. In the meantime, the bad thoughts are really ramped up; 1st therapy session in 1-1/2 weeks. Until then, just agony waiting to see if DD indeed has pandas. She ha
  21. Dear Nancy, thank you so much for your insight. I've seen several of your entries and they have all been so helpful and supportive. They've all gone a long way in guiding me through this difficult time. I will most definitely ask her Dr to order the tests you suggested. In 1st grade, one of her classmates had strep, and the only reason I know that is that classmate all of a sudden had episodes of separation anxiety. Her mom mentioned she was recovering from strep at the time. I've also cut out the Kids Calm for now as she was complaining of having no energy. It has 250 mg of magnes
  22. Since 5/1/11, my 9-yr old has been having the unwanted sexual thoughts that include the boys she dislikes, her teachers, and those she loves. She also has scrupulosity, where she has to bring up minor stuff she thinks she's done wrong all the way back from kindergarten or preschool. She "relieves" or "cleans" by telling me first, then I have to tell her Dad. I've been reading these forums (THANK YOU), which has been so helpful in assisting with what to do until we see an actual therapist, which will be on 6/28/11. The thoughts become so overwhelming at times, getting her so depressed. I'
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