Sheila99

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

So glad to hear your son is doing so much better. You all deserve this great turnaround! All the best, Sheila99

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...

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!)

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...

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

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.

By the way, we will be skipping the Moxxor and will be trying the Coromega Omega 3 we bought from Vitamin World.

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

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...

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

Just was curious if those who went the IVIG or PEX route no longer has to take ABX on a long-term basis?

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 -

Thank you all so much for the advise. I will digest all of it and get it going...Sheila ~