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Sheila99

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Posts 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. 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...

  3. 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 www.kp.org)and checked background (i.e. geographical, a plus in my eyes, if from back East-seems like more PANDAs there than West Coast), etc.

     

    Found a new pediatrician (she just joined Kaiser SO Ca 2010), but went to school in Chicago and did internship/ residency at CHOC (Childrens Hospital of OC). Figured newer doctor, more progressive...being in Chicago maybe she's heard of Dr. K and PANDAs, etc. Plus experience at CHOC perhaps encountered PANDAs....I figured what's there to lose? The experienced current PED wasn't of much help as he's so skeptical strep caused DD's intrusive thoughts.

     

    So far so good. Her name is Dr. Connie Lin (Harbor McArthur, Santa Ana), no relation to Dr. Thomas Lin. For now she is accepting patients...probably until she reaches certain patient load. She's checked with Infectious Disease Dr, and referred us other Kaiser doctors (Neurology, Psychiatry) to aid her and us in search of answers. At least I feel better in her hands than previous Ped, who was good since birth, but now, at this juncture, kinda need female perspective and proactive approach she's been taking...She's not a PANDAs expert (YET) so I can't say that she's got all the answers and if the more aggressive IVIG and PEX will be a route she will advocate.

     

    I asked Kaiser Dr Lin to run tests for coinfections (i.e. mycoplasma and lyme); she checked w/ Infectious Disease Dr who said she's run across PANDAs with mycoplasma coinfection, but no lyme. So Kaiser Dr Lin testing for coinfection (mycoplasma) to determine how much longer to keep DD on Zith. If titers are lower, negative on mycoplasma and symptoms have abated, she will be switching DD9 back to Pen for long term so that DD doesnt develop resistance to Zith.

     

    Thanks to the forum for giving me a lot of direction on everything we've done for DD so far.

     

    Hope that helps, and hope this doesn't jinx us (YIKES!)

  4. 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...

  5. 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 confidence.

     

    Now if she can only take the probiotic capsules...that is next.

     

    Oh, the fish oil and omega thing...we're using Coromega Omega 3 and it's really helped her. So, it's different response for every kiddo.

     

    Sheila B

  6. 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 capsules and breaking it to mix w/ apple juice but she hates it. I'm thinking of trying other probiotics once these capsules are done.

  7. 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

  8. 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 higher than fish oil, salmon oil, flax oil. (google "moxxor")

     

    Sounds great, right? I tried it on myself first before giving to DD and I got kinda loopy (melatonin did that to me) and my finger tips got tingly...but then it might be different for DD's PANDAs condition. So, I was wondering if anyone out there with PANDAs kiddo tried this yet? DAN Dr! recommends it for kids with Autism and ADHD but since it's like brain food, it's good for PANDAs kids too...

  9. 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, Sheila

  10. 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 trying to make sure we continue the recovery.

     

    Instructions mention it is best to take on empty stomach (like 1 hr before eating, or 2 hrs after eating) to better absorbed. Tried it last night and DD spit out most due to yucky taste. Great! And this 60-day bottle has to be refrigerated; with upcoming travel plans without access to refrigeration, I think I will have RX chg to pill form and just crush the pill. SINCE DD VERY SENSITIVE TO TASTE, WHAT HAVE YOU FOUND IS BEST TO GIVE WITH HER CRUSHED PILL? APPLE SAUCE? She's always just had meds in liquid form so dont know how she will take to actually taking pills.

     

    Now I am planning what hours of the day I should give this to her, since I had it all planned to give her some probiotics 2 to 3 hrs later per suggestions from forum. During summer break, I can be flexible to a degree when I can give probiotics. Pharmacist last night said I can give probiotics even right after I give the penicillin. Ha? if point of waiting during window (1 hr before/2 hrs after meal) is to ensure best absorption HOW IS IT OK TO GIVE PROBIOTICS RIGHT AFTER TAKING THE MEDS?

     

    Lastly, I took her off Kids Calm Multivitamin since June 4th, to see if that was causing the twitching while sleeping. She hasnt been on it since then, and I noticed she's twitching again only while sleeping. I saw a thread somewhere that the twitching ONLY while sleeping seems to be a PANDAs characteristic. Just mentioning it here just in case you got turned off on Kids Calm due to my comment from before.

     

    Sorry for being long winded, but this kept me up all night...

  11. 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 B

  12. 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.

     

    I'm glad he decided to run the strep test, but I can tell from his communication w/ me that he is skeptical the strep has anything to do with my DD's OCD. His words, "her strept test(ASO) is very high at 588(nl is < 151), this may speak for a previous or present strept infection, and whether this is a causal factor for her OCB is unclear, as there is still some talk of whether strept infections can cause things like tics or OCB. Psychiatry told me they have seen a couple of patients improve their OCB after finishing course of antibiotics for presumed strept infections"

     

    ....AAAAARGGGGHHHH...so frustrating that main stream pediatricians do not believe PANDAS is a fact!!! Will it take someone to get in front of Congress or some major movement in the medical world to acknowledge PANDAS exists?

     

    I've read the threads about continuous antibiotic and how it's hard to take our kids off of it....wow, something else to worry about.

     

    Anyways, I will keep you all posted. Thank you all for sharing. It's so painful to see our kids go through this, but you are all warrior moms, and I'm trying to be like you all. Sometimes it's so hard, but reading what you have all done is inspiring. All the best, Sheila B

  13. 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 had several ear infections until 2-yrs old, and never showed signs of strep. Before OCD came out, she was complaining alot about hurting around her nose, so it'll be interesting to see outcome. Thanks again for sharing.

  14. 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 magnesium and one of the side effects I read of "overdosing" on too much magnesium is muscle weakness and fatigue. Last night was 1st night w/o Kids Calm, so less twitching while she slept last night. But she did say it helped her to reduce the anxiety, so once I've figured out 1 capful of Kids Calm might be the culprit of the twitching, I may just reduce it to 1/2 capful or less. I'm thinking of giving her Inisitol but minimum I see at the vitamin stores is 500 mg. I am back to giving her the gummy bear vitamins for now.

     

    Thanks again Nancy. You are a god-send.

     

    Best regards, Sheila

  15. 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'm hoping the therapy will really give her some help in how to overcome this bad thoughts OCD. Thanks to some moms' recommendations, I've been giving her Kids Calm, which I think takes a couple of weeks to take effect.

     

    I noticed that lately, since 6/4/11, she now twitches while she's sleeping. But I don't notice a twitch when she's up and about. Now I'm thinking, do I need to get her checked for possible early TIC or Tourettes? She's never had strep throat, or LYME, so I don't think PANDAS is involved. We took her to pediatrician and he referred us to the Behavior Medicine dept.

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