socalmom Posted December 31, 2011 Report Share Posted December 31, 2011 Hello, my 5 year old son has been diagnosed with PANDAS and i am not handling the news well to say the least. I am scared and overwhelmed. I think my son has had this since he was 4 or possibly younger. To make matters worse I am in Los angeles CA and there seem to be NO ONE HERE COMPETENT ENOUGH TO TREAT IT! Please forgive my spelling errors or ranting as i haven't slept well in 9 days. Where do i go for support and what Dr. is close by that we can see? why is the west coast, specifically LOS ANGELES such a wasteland when it comes to help for this disease? Will my son ever be normal again? Thank you to any and all who reply to my ranting, I am truly losing my mind. Link to comment Share on other sites More sharing options...
Chemar Posted January 1, 2012 Report Share Posted January 1, 2012 Hi, Welcome! just bumping up your post so others on this forum can see and reply Link to comment Share on other sites More sharing options...
kimballot Posted January 1, 2012 Report Share Posted January 1, 2012 Hello SoCalMom and welcome to the forum. I found this forum about 2 years ago when my son, who was 12 at the time, was in an exacerbation. He'd had PANDAS exacerbations for most of his life, but I was repeatedly told it was not PANDAS because he did not have strep throat when he flared up - usually sinus infections. Having a child with PANDAS can be overwhelming and frightening. However, I've found the best way to deal with those feelings is to educate myself, and this forum is a great place to start. There are other families on the forum from southern CA and I am sure they will have specific suggestions for you regarding doctors and such. They may send you a personal message, and the PM notification shows up in the upper right hand corner of your screen - near your user name. If you are comfortable posting information about your son's case as questions arise, families with similar experiences may chime in. I wish you well and hope that 2012 brings you a treatment plan for health for your child and your family. Link to comment Share on other sites More sharing options...
peglem Posted January 1, 2012 Report Share Posted January 1, 2012 (edited) Hello, my 5 year old son has been diagnosed with PANDAS and i am not handling the news well to say the least. I am scared and overwhelmed. I think my son has had this since he was 4 or possibly younger. To make matters worse I am in Los angeles CA and there seem to be NO ONE HERE COMPETENT ENOUGH TO TREAT IT! Please forgive my spelling errors or ranting as i haven't slept well in 9 days. Where do i go for support and what Dr. is close by that we can see? why is the west coast, specifically LOS ANGELES such a wasteland when it comes to help for this disease? Will my son ever be normal again? Thank you to any and all who reply to my ranting, I am truly losing my mind. The doc who dx'd isn't able to treat it? I think most areas of the country have a shortage of physicians who treat PANDAS. While the East coast seems to have a wealth of them-there are really only a handful, so I guess its all relative. This forum is a bit slow over the holidays, but somebody should be along in the next few days who can help with doctors in your area. In the meantime, you might want to take a look at the "helpful threads" thread pinned at the top of the forum. It has a lot of info that may help you feel less stressed about it, and I think there is also a helpful docs list in that thread. Many of us on this forum had great difficulty even getting a dx, so you're blessed to at least know what it is you're dealing with. Edited January 1, 2012 by peglem Link to comment Share on other sites More sharing options...
lila_zadar Posted January 1, 2012 Report Share Posted January 1, 2012 Hi! i live in Italy...i was so scared when i found out about Pandas six months ago. we did abx for one month after IVIG and i decided to take my son off abx..he has allready problems and i dont want to make him more sick. we take only natural supplements and homeopathy and its working better than IVIG and abx. My son is 5..so what are we doing is good diet,sport,fresh air,sun,natural supplements and homeopathy! and i see only great results. Link to comment Share on other sites More sharing options...
Mayzoo Posted January 1, 2012 Report Share Posted January 1, 2012 Hi, I am new to this as well. I am calling all kiddos docs tomorrow for more information, confirmation. Good luck. Link to comment Share on other sites More sharing options...
3boysmom Posted January 1, 2012 Report Share Posted January 1, 2012 You may also find some great help on the two main websites: www.pandasnetwork.org www.pandasresourcenetwork.org depending on how sever and how long your son has been ill, will probably an indication of how hard it will be to get him healthy again. Also will depend of what treatment route you will need. Many, many kids get well with antibiotics alone so do not get discouraged by some our posts. Many of us have kids that went years without the correct diagnosis and treatment and so now many are dealing with comlpications and coinfections. So...many of the members that have become well, are no longer posting and so some of us still here are the more complicated cases. We have all been active in getting the word about this illness out to the media so other kids won't go years and years with the wrong diagnosis, so the fact that a doctor was willing to diagnos "PANDAS" for you (even though it is still not a "recognized" illness YET) is a good early start and hopeful for your little guy! It is very scarry to "loose" you child and many of us parents go through P.T.S.D. But, you can get your child back and then later yourself too, but I won't lie.... it takes time. We are here for you, there are some really smart and helpful people on this forum. Prayers and blessings to you, Linda PS. Can't help with doctors, we live in Texas and fly to Dr. B in CT. So do 3 other Texas families in our support group, so Calif. is not the only state that is clueless with this. While you are trying to find answers, IMHO... Don't vaccinate or give any shots. Learn more first. Link to comment Share on other sites More sharing options...
PowPow Posted January 1, 2012 Report Share Posted January 1, 2012 how about Dr Jory Goodman? Maybe he can point you in a direction that is helpful - give him an email. I enjoy watching his youtube videos. Check out: Beverly hills shrink (i think that is his website) Is Beverly hills near LA? excuse this east coaster's lack of geography skills Link to comment Share on other sites More sharing options...
socalmom Posted January 2, 2012 Author Report Share Posted January 2, 2012 Thank you to all that gave me words of encouragement and a little info. my son was discharged from CHLA with tics!! The neurologist wouldn't even really LOOK at him. too busy scribbling in her notebook and scrutinizing me! I finally took matters into my own hands and forked out big bucks for a Dr in New Jersey who's well known here and elsewhere : Dr Trifiletti. What is so frustrating is the LACK OF GOOD HELP/CARE IN LOS ANGELES! PowPow, yes BH is in los angeles. lila@zadar, My husband is French , I looked at treatment options in France and they look bleak, unlike Italy which is a bit more "informed" A Dr. who refuses to see you w/o good insurance? Imagine that? I am currently looking at these dr's: DR Deborah Lehman @ Cedars Sinai pediatric immunologist and Dr. Pamela Varady clinical Psychologist. Anyone have feed back on a Dr. Schweig in Petaluma? 3boys mom thank you for reminding me that every kid is different, I do get worried and overwhelmed! Link to comment Share on other sites More sharing options...
EAMom Posted January 2, 2012 Report Share Posted January 2, 2012 Here's the consolidated list by state: http://www.latitudes.org/forums/index.php?showtopic=6428 Sean McGhee (immunologist) is good too, he used to be in S. Cal but is now at LPCH (Stanford) in N. Cal. Here's the non-consolidated list. http://www.latitudes.org/forums/index.php?showtopic=5023 Link to comment Share on other sites More sharing options...
lfran Posted January 3, 2012 Report Share Posted January 3, 2012 Dr Thomas Lin in Irvine is a PANDAS doctor that people in Southern California go to. We are not his patients, but he is on our short list, if needed. I also live in LA -- it is a bit of a wasteland. We discovered Lyme, and there are a few more lyme docs in So Cal than PANDAS docs, and that's our current focus. But I'd sure appreciate any PANDAS info for local docs if you come across them. Some of the DAN docs (Defeat Autism Now! docs) might be helpful. I wish you the best. It's hard out here. There is a psychiatrist in Burbank, Dr. Nancy Mullan, but she doesn't want to use antibiotics, which is what most other PANDAS docs do want to use. Did he go into CHLA without tics and was discharged with them? How did that happen? -- lfran Thank you to all that gave me words of encouragement and a little info. my son was discharged from CHLA with tics!! The neurologist wouldn't even really LOOK at him. too busy scribbling in her notebook and scrutinizing me! I finally took matters into my own hands and forked out big bucks for a Dr in New Jersey who's well known here and elsewhere : Dr Trifiletti. What is so frustrating is the LACK OF GOOD HELP/CARE IN LOS ANGELES! PowPow, yes BH is in los angeles. lila@zadar, My husband is French , I looked at treatment options in France and they look bleak, unlike Italy which is a bit more "informed" A Dr. who refuses to see you w/o good insurance? Imagine that? I am currently looking at these dr's: DR Deborah Lehman @ Cedars Sinai pediatric immunologist and Dr. Pamela Varady clinical Psychologist. Anyone have feed back on a Dr. Schweig in Petaluma? 3boys mom thank you for reminding me that every kid is different, I do get worried and overwhelmed! Link to comment Share on other sites More sharing options...
bulldog24 Posted January 4, 2012 Report Share Posted January 4, 2012 Have you looked into.seeing if your child qualifies for the nih study? Link to comment Share on other sites More sharing options...
socalmom Posted January 4, 2012 Author Report Share Posted January 4, 2012 HI Ifran, I went on the 25 Dec to CHLA and my son had several symptoms one of them being tics, and when he was discharged all they told me was that my son had tics, and was " too pleasant to have PANDAS" I didn't need to stay overnight in a hospital with a freaked out kid to learn my son has tics, i can clearly see this! They talked to me about psychiatric drugs and told me to seek help on an out patient basis with my pediatrician! BUT now it seems the Neurologist has had a change of heart because yesterday i received a hand written letter from her asking to speak with Dr. T and explaining she " could always learn more and is very interested in what he's doing" Link to comment Share on other sites More sharing options...
socalmom Posted January 4, 2012 Author Report Share Posted January 4, 2012 (edited) hi bulldog24, I did look into it, but if I'm not mistaken your child must have OCD, and at this time he does not. or..........at least not that I'm aware of. Edited January 4, 2012 by socalmom Link to comment Share on other sites More sharing options...
peglem Posted January 4, 2012 Report Share Posted January 4, 2012 hi bulldog24, I did look into it, but if I'm not mistaken your child must have OCD, and at this time he does not. or..........at least not that I'm aware of. In young children, OCD can be difficult to recognize as the behaviors are rationalized as a phase or quirky behavior. Here is a link to a list OCD in young children http://www.latitudes.org/forums/index.php?showtopic=6153 Link to comment Share on other sites More sharing options...
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