tapiash

I am going to PM you as soon as I get a chance. Thanks, please do

I don't live there but my mom lives in Santa Fe. We were just there for vacation! I know that's not what you are looking for but I wanted to say hello. Susan Hello. Santa Fe is beautiful. I think my son is the only little guy in the state of NM diagnosed with PANDAS.

I think we'll only use it if we really have to and nothing else is working.

I have no idea why IVIG is the last resort. I am so mentally exhausted. I want to pursue IVIG but I need a doctor who will give the go ahead. I do not want steroids but Im not sure what else to do. Cam K was 162 Anti-Lysoganglioside 640 Tublin 2000 Anti-Dopamine 1 400

Does anyone know where I can go in Texas for IVIg. We are fixing to start the approval proces but I am not sure where to go. I would love to go somewhere there is a pediarician on call not just a center.

I am looking for parents in New Mexico who have a Pandas child

Dr. thomas Lin in irvine Ca. He was great. What is spironolactone? IVIG is our last resort. He said we can try to get the approval while he is taking steroids. I am really afraid of the steroids but Im assuming he knows what he is doing.

Sounds like you may have found a knowledgeable doc! If he is not listed on the parent recommended list on this forum can you please add him? What did he prescribe for Pandas treatment? How long? I think Buster's links at the top of the PANDAS forum page under "helpful threads" will explain better then I can the answers to your questions-- read there. There is also excellent information on the following website--which is a wealth of information and includes the rationale behind antiinflammatories and immunomodulation-- Right now he is on Zithromax for a month, yeast medication and probiotic. I thought in a month we were going to do steroids but after reading his email today we may start a more intense treatment. He did not mention antiinflammatories or immune modulation during our last visit but he also did not have Cunninghams results either. Thank you for sending me in the right direction. Shirley www.pandasnetwork.org Please keep us posted on how it goes--All the best to you--

I drove 19 hours to see a Pandas doctor in California. He was wonderful. We have a treatment plan in place, well at least I thought we did. I sent him all the results from Cunningham and this how he replied. "Many children on the spectrum displays autoimmunity, which means they produce auto antibodies against their own tissues. We need to discuss anti ininflammatories and modulation of the immune system." Can someone please elaborate. Why does my son need antiinflamatories and what is modulation of the immune system? I guess I am just ignorant. I should probably know this terminology by now.

Yes. My DS CAm K was 161

Anti-Lysoganglioside 2 hours patient 640 positive control >1280 negative control 80 normal range 80-320 normal mean 147 Anti-Tubulin 2 hours patient 2000 positive control 16000 negative control 250 normal range 250-1000 normal mean 609 Anti-Dopamine 1 2 hours patien 4000 positive control 8000 negative control 1000 normal range 500-2000 normal mean 1056 Anti-Dopamine 2 2 hours patient 4000 positive control 16000 negative control 2000 normal range 2000-16000 normal mean 6000

I hope my words of encouragement will help but hang in there. I believe eventually your husband will come around. There were times I was ready for him to get his things and leave.He did not support me, he hated the fact I was spending so much money to learn nothing. I went behind his back and told him the Cunningham labs were free if you participated in the research. When the results came in he was a little convinced but still did not participated in any of the research or never asked, "are you okay" I was exhausted. I am exhausted. I scheduled an appointment in California with Dr. Lin this past Monday. We live in NM and it takes 19 hours to get there. He refused to go and finally when I said with you without I am driving to this appointment he agreed to come with. After the visit with Dr. Lin my husband changed his attitude and was so thankful for the many hours I have spent researching. The doctor looked at me and told me you do not need to justify your sons symptoms/behaviors. I know what you are going through. I see mother's like you daily. Never doubt a mother's instinct. This brought tears not only to my eyes but my husbands as well.Today was our first day back and people have asked about our son and now my husband is able to give in an answer. I am so proud of him. It takes them a while to get on board but when they do climb on,it is such a BLESSING. Hang in there!! This forum has saved me.

\Kathy is AMAZING and very patient. It is so reqassuring to know there are individuals out there who understand the frustration and are so willing to bend over backwards to help us out. On a different note my sons score was 161. We are still trying to figure out treatment. I am still waiting for the other results the Cunningham lab provides. It has been almost a month. Im not sure what they are suppose to reveal. Do you? what it will show several different types of antibodies and in what range they are. for instance, my son had very high out of range (1200) anti-lysogangliosides antibodies present. what does it mean? who really knows? no one at present. it just suggests that he does have an abundance of these particular antibodies. when all the data is compiled, perhaps they will see a correlation into the type of symptoms that each child has and if there seems to be some common thread. maybe all those with high anti-lysogangliosides are those with tics, and maybe the other antibodies suggest more ocd, or other behavioral. ... I will add here that our score was 179, so pretty high, altho try as I might, I cannot definitevely prove strep is our culprit. my son's main symtoms are tics and some ocd..... I have asked Dr. Latimer what it all means and she has said that at present, they really do not know yet. I'm just putting this out there to make sure the right info is put out here and some do not get false hope. This is a study, and you are helping by participating in the study. If it helps with your overall diagnoses and treatment, all the better, but I do think everyone needs to be realistic....This may prove to be something very important in the future, just not yet. Okay. That helps. Thank You. My son has tics, ocd and some weird ups and downs with behavior. HIs toes have been giving him alot of problems lately. I do think it is related to strep but who know. They are white, turn red and hurt to walk. I massage them and it seems to help. I thought maybe it was shoes but soemdays they hurt when his shoes have been off for hours.

Dr. T does not respond to my emails phone calls. He had my son on Biaxin and we finished the dose, now we are just left hanging. I have asked him what next? Do we take the second refill. He mentioned Raynaunds disease but never followed up. We live in NM so there is noone around. Very frustrated. Im not being negative but Im hoping he is alright.

\Kathy is AMAZING and very patient. It is so reqassuring to know there are individuals out there who understand the frustration and are so willing to bend over backwards to help us out. On a different note my sons score was 161. We are still trying to figure out treatment. I am still waiting for the other results the Cunningham lab provides. It has been almost a month. Im not sure what they are suppose to reveal. Do you?

What it be crazy of me to bypass everything and just get IVIG. I am so tired and and ready to see improvement. My son is tired and wants to be back to "normal" He hates the antibiotic. It gives him belly aches and horrible taste. we also think this is causing his feet to hurt. I sent the information to Dr. T. I hope he agrees.

Does anyone know of any doctors who treat Lyme Disease

I agree. I have been so focused on Pandas that I missed Lyme disease. My son could have been exposed in late August on a fishing trip. HIs behaviors started in October.His blood was checked last month. I think it was borderline to the neg. We are still going to California on Monday. When we get back I will eliminate more chemical smells from the house. This is my son to the tee. severe fatigue # impaired concentration # poor short-term memory # inability to sustain attention # difficulty thinking and expressing thoughts # difficulty reading and writing # being overwhelmed by schoolwork # difficulty making decisions # confusion # uncharacteristic behavior # outbursts and mood swings # joint pain (usually feet) # anxiety

tapiash - i read your post earlier today and then was reading cure unknown about lyme. i just thought i'd pass on this passage to you. . . "by the fall, having just started seventh grade, Amy's health plummeted dramatically. Like Seth, she developed dysautonomia (a disfunction of the autonomic nervous system), but also a temor, balance and gait problems, and what appeared to be Raynaud's syndrome, in which the tiny blood vessels in the fingers and toes constrict in response to cold and the lips turn blue." it's just in the beginning of the book, but i assume the child they're talking about has lyme. not sure what it's about but i thought it was interesting i don't know about raynauds and then saw it twice in about 6 hours. good luck. My sons test were borderline for lyme. The more I look into it the more I think this is what is going on. Everything I find describes him to the tee. The inability to find words to express himself,concentration, short term memory, making choices,irritability,falling asleep in class,feet hurting, we went to the lake August and were severely attacked by mosquitoes despite our efforts to keep them away. I wonder if he could have been bit by a tic. In October is when all of his symptoms started.

I am familiar with Raynaud's. I don't think Reynaud’s has any association with PANDAS, because it is blood vessel spasms. If it is Reynaud’s cold would be a factor also tight shoes that prevent the toes from moving or cut off circulation. The toes would probably be numb and purplish-red. And yes, a little painful and kinda a little itchy at times when they are red. If that is what it seems to be, warmth is the answer. Thick cotton socks are not the answer because they can restrict movement. You don't want the feet to sweat either. A warm foot soak can work when it is really bad. Management is the key. Get good breathable shoes when out and nice silk/wool socks without shoes or with sandals when inside. Shoes can restrict flow and sweat. The toes must have lots of room to move around. And they must stay dry in the shoes/ socks. Reynaud’s is not serious, but observance and caution must be used in the snow. My son refuses to wear thin socks. Part of his ocd is his sock and shoe and preference. He only wears black socks. Besides odor what does the sweat cause? This ought to be a fun task to tackle.

Stinks...in the meantime you could try a good brand of "gripe water" (we use baby's bliss, expensive but really makes the tummy ache go away everytime for my son and also for me). Best of luck! Stephanie Where do you find baby bliss? What is it? My son has been having a lot of belly aches since he has been on biaxin

It is right on top of the toes. The article I read said it could be autoimmune related which is PANDAS, right? Thanks for the link. I appreciate it!

My sons feet and toes are changing colors. They go from white to red. When they are the color red it is painful for him. I wonder if it could be Raynaud’s Disease. Anyone experience this with PANDAS or know something about it. It is serious?

I am looking for a pediotrician doctor close to NM. I talked to one in Colorado but he has been no help.