michele

I did give the antibiotic Omnicef again the past few days because I am worried he was exposed to something because my daughter had a sore throat over the weekend and has a cold now. He was better today cause I left him with my dad and he was 1 on 1. Tonight after the clonidine he got really good. The steroids make him much more active though. He has a new smelling tic though.

Did some of you see your kids seem more enraged in the beginning on the steroids? She is giving him 30 mg a day this week. I am trying to remain hopeful. Also he was anxious and irritated before we started the seroids since we were out of town. Today will be day three of 30 mg. I may have to keep him home. Michele

Another bad day out in public today. He was in a rage and throwing tables and chairs when I wouldn't give him what he wanted, kicking and hitting his sisters when they wouldn't move from the seat he wanted, pushed the baby down. Do the steroids cause any of this? I gave him 30 mg yesterday and today? I mean he was bad before this but I am so embarrased that I am avoiding people who know me. He was throwing rocks and screaming at me and says he will run away and live with my inlaws. He says he wants out of this house. I am so confused. Isn't there meds that can stop these rages? The ones we are on are no helping, or are they making him worse? At what point do the steroids kick in and show improvements? Did it take time or was it right away? I feel so sick right now. I can't control this kid anymore.

I am right here with you and for you. I feel I have taken all I can also. I am at an all time low point. I am frustrated with his behaviors and I am losing my patience with everyone in my family. I don't even care to speak to friends at this point. Nobody but those of us here get what desperation we are living with an unstable child. I was so embarrased over his behaviors in DC. The fits over everything, even throwing his shoe into the wishing pond at the Veterans memorial. Running through the lobby, kicking me and not listening. He was so mean and hitting us. I lost it and yanked him and hit him a few times hard and in front of people. I know my whole family is affected by his behaviors. All of us seem disfunctional now and on edge. I don't know how to get over these feelings either. Hopefully the steroids will work and we will see progress because we can't continue down this path. It is just too much stress and the fun of being together is gone. I have gained weight because I am depressed over my life and have no time to exercise and crave sweets. How do you get back to being happy and normal?

Did Latimer prescribe the azith? She seemed against using that strong of antibiotics. My son has had alot of bowel trouble and she said it could be related to the strong antibiotics Omnicef he has been on for a few years. She did not seem to be for using them as a treatment and said this is a misconception. What did she tell you about the antibiotics longterm? Michele

She said strong antibiotics can be harsh on them. There could be a connection between bowel issues and antibiotics. She doesn't see anibiotics curing their symptoms up since they are neuro. I did not get the idea she worries about kids becoming resistant to some infections from long term use. I makes me wonder about Saving Sammy and Beth Maloney saying antibiotics cured him? Kayanne, what did she tell you?

She did not say it must be the way she does it. 3 pills a day for one week, two pills a day for the second week and then one pill for the third week a day. 10 g and 120 pills. She said it is quite remarkable how the true PANDAS kids get better on the steroids and no worse like you would expect. If he did do worse I would stop them after talking to her after a week. She responds to email or phone calls. She is very down to earth and talks at your level. She took a lot of notes for her files also. She also asked questions and seemed to really care about her patients. She said she is getting alot of referals since others are shying away from these tough to treat cases. Word has spread that she will help these kids. She doesn't care what the naysayers say about her. She said after you treat a few cases and see how well they respond it is evident that it does exist and treatment helps! A really classy lady, smart, funny and personable. The whole package!

Thanks for asking. Back in OH tonight. It was a long weekend in DC. Tons of walking and visiting the sites. Lots of meltdowns and lack of listening during the trip though! He was out of his element. Dr. Latimer is great and very informative and knowledgable about neuro issues. We did not get IVIG yet. Possibly because she felt we should do the steroid burst first. She did give us the script for it for 3 weeks. The problem is that Andrew's case is very long and complicated. He has a history of tics, compulsive behaviors and adhd behaviors and anxiety dating back six and a half years. She went through everything date by date. However his symptoms do seem to get worse after virals and strep, but TS also waxes and wanes with stress and illness. She wants to rule out the PANDAS and TS and anxiety disorder. The Cunningham study showed he was PANDAS but in the low range. She clarified this could also show up with TS tics as being low PANDAS range or high normal range. She thought his chorea was minimal. The family history also shows lots of anxiety and compulsions plus his dad has a quick fuse. So, she thought we could make some adjustments to his meds such as a clonidine patch or trying prozac since it works for dad's temper. She'd like to see him get off the Abilify. She will send me her notes. She wants to review everything and then will let me know. I don't know if she could manage meds but she said she would send notes onto his ped. She also said it would be good to be referred to the study at NIMH for anxiety. She took about two hours with us. Lots of talking in an office/desk setting. However she did examine him and did a full neuro check-up. It was alot of waiting for him. He was really good for her. She said he was very outgoing and talkative and social. His eye rolls were better and have stayed better. However over the weekend he started a new tic where he licked or smelled his hands after everything he touched. She told me to get in touch in a week with her. My husband was a bit annoyed since he said what did you get another script? he thought we'd get the IVIG. However I felt good talking to a Dr who knows how to treat these rare cases. Overall, worth the trip and money to talk to someone who gets what these kids go through. I wish we were closer to her. I'd be happy to answer any questions. Michele

Diana, Your message box is full. Michele

Your dd condiion sounds similar to my son. He also looks like OCD, tourettes, ADHD, PANDAS, and Aspergers. He is on meds also for the symptoms that don't seem to really go completely away anymore. Abilify for the moods and tics, clonidine for the moods and attention and tics, celexa for the ocd. I did talk to Latimer because we would like to try IVIG when we go to her this week. She said to stay on meds. Although Dr. K may feel diffferently. In fact he told me via the phone that meds can cloud the judgement of the steroid burst effectiveness. At thus point he is so awful even on the meds I can't imagine him off them until he is farther ahead with the treatment such as IVIG. He used to get fevers with virals and infections that spiked and worsened his symptoms. That heating up the basal ganglia can really make their behaviors worsen. Good luck with Dr. K. Dr. Cunningham is a good one to go through for he PANDAS bloodwork. Look for the post on here for her labs.

I found this great interview with Dr. Storch who is working with Dr. Murphy. He mentions her and PANDAS in the interview and how to get a hold of them. http://www.ocfoundation.org/UserFiles/File...August_2008.pdf

Dr. T Murphy now in Tampa Florida. I know I have seen her new number but not sure at the moment where. She is very good at diagnosing and sitting down and telling you what to expect. She is a ped psychiatrist and sees many PANDAS and TS cases and was on the Sweedo studies and does research in these areas.

I know the DAN! told us this about Tylenol also. Are there specific amouns of Benedryl and Tylenol/Motrin to give before the IVIG? Also how far in advance do you give them, the morning of? I just want to be ready since I am hoping to be able to get the IVIG the next day after our appointment on Thurs. If I am traveling to MD I hope we can get everything done on one trip. Shaes Mom how is she doing today? I am praying her neck is better.

How do you treat the symptoms? What is the recommended dose and meds to use before treatment? We go Thurs. to Latimer and I want to be prepared. Do you have any suggestions? Michele

We are traveling six hours from OH to see Latimer next week. Also flew to see T Murphy in Florida a few years ago. PANDAS is that unknown and misunderstood that there are few Dr.'s in the world who treat it regularly. Vicki makes an excellent point! Prednisone is an immuno-suppressant. Your child should be examined before being given the steroid...prednisone can casuse serious complications with many other common health issues. I wish you the best of luck...if the DC area is accessible to you...seek out Dr. Latimer...she will help you. Thanks, I'm not in the DC area. As for complications, I don't think that there is a high risk with a short-term burst for otherwise-healthy children--I remember getting a steroid burst at least once every summer as a kid to treat my annual poison ivy rash.

Thanks D. I was trying to send you a pm but your box is full. Can you delete some? Michele

Hi. I have been waiting to hear from you. I was wondering how you had made out. I am glad things worked out then. I was a bit frightened by the PEX process but am glad he held up fine. What do you think now looking back, is this the best way to go for PANDAS or SC? We have never done seroids, IVIG or PEX but are desperate at this point for something. This has been the summer from ###### since he was sick June 5th. Andrew's symptoms have never remitted yet. The tics and eye rolling is worse, can't sit still, vocal squeals and shouting out bad words, oppositional, angry, and defiant. The bowel issues have gone from soiling to diareah, to constipation and bleeding with his now helping the BM out. His compulsions are through the roof. The anxiety and eyes rolling sideways and bottom pants pulling every second. I just pray Dr. Latimer can guide us since the meds we are using have not helped him yet. We added clonidine and are on Abilify and Celexa too. Tomorrow is another psychiatrist appointment. We can't seem to nail this yet. He is always ahead of us and we are tryin to play catch up. I can't even imagine startin school in his state. What exactly are you giving Carter now? How is he currently doing? I am so happy for you. Thanks for the info. Michele

That is why our ped wouldn't give the burst because she had no intention of doing any IVIG and we had no other Dr. to do it so why try it?

We are planning to see Dr. latimer next Thurs and after six and a half years are ready to be done with this. Like Kelly said our sons baseline is always having the anxiety and OCD but gets worse after any fever and illness. However, from those I have talked to these symptoms seem to follow them into early adulthood. My poor son had to start this at age 1. I know of a girl who was better for many years because of steroids long term. Pulse cortico steroids. She did IVIG and it didn't last. However Mom MD researched and felt Plasma replacement was the only true longterm treatment. However after a recent sinus infection the girls symptoms did return after 9 years. So until more research is completed and published we are just guessing at what might work the best.

What you described is right where we are now. If you don't get the treatment the PANDAS OCD becomes a daily obsessive compulsive disorder. We are also working with a therapist and psychiatrist but it is really hard to reverse these compulsive urges in a young kid. We are even using meds and it is not really helping that much. Antibioics stopped making a difference for us also. We are at a point that bigger guns must be used like steroids or IVIG. My son is becoming psychologically ill and it is not an easy thing to see in your child. His bowel encopresis has turned into his putting his fingers in his bottom to help it out. He is bleeding alot from his anus and making such a mess. Also he meltsdown over his obsessions when we don't give in to them. He has weird compulsive tics such as grabbing his bottom and rolling his eyes sideways, rollin up onto his curled toes. I just hope some of these OCD ways can be reversed with IVIG or whatever treatment Latimer suggests. Michele

Good for you that you found a local Immunologist to help you. You have done a great job of finding help for your daughter. We were never that lucky. We have not gotten he burst yet either even with Dr. K's letter. I am frankly sick of trying out new Dr's locally so I am just going to the source Dr. Latimer July 23rd and hopefully she will know what to do. Best of luck to your family. I know it is scary. I will be praying for your daughter. I have a friend on Facebook Aspergers and PANDAS group who does the IVIG every six weeks also. You may want to join and give her a shout. Her name is Hester and she sees a DAN ! for her son. He is doing really well with the IVIG and he is autistic also wih the PANDAS. Michele

I just wanted to add, that I have spoken to Dr. K and did the hr phone consult. He was reassuring and did email me a steroid burst recommendation. However, if you don't have a local Dr. on board who will administer it then it may not be worth your money. That was six months ago and we are having to travel out of state to get treatment that is nontraditional. I could get medication from psychiatrists locally but no local Dr. would do the burst or the IVIG. If you don't have a specialist on board you may just want to travel to see Dr. K or Dr. Latimer in person. Private mail me and I can give you the info Dr. K gave me in the email abou the steroid bust. Michele Asaxon-- You might consider a phone consult with Dr K. www.webpediatrics.com It was WELL worth the money for us, he has been a great help and can advise you as to the prednisone burst. He was the one that advised us to try it in the first place. We had a local neurologist follow Dr K's protocol over a year ago, and Dr K is extremely helpful both on the phone and email. All the best to you-- I hope things calm down for your child --

Wow. Thanks for posting. I had heard about his death but did not know the circunstances only that it was sudden. It is very sad. I know MomMD went last week and was able to get the treatment but not see Dr. Latimer. We are scheduled for the 23rd of July. Did they mention how long she may be out? Did they reschedule your appointment? I have a funny feeling about this. I got reservations 3 nights non refundable, boy I hope they don't get canceled! I really am looking forward to the appointment and her expert advice. Michele

Well done Diana and Buster and friends. This was so well needed to help get the word out there that PANDAS exists and to educate people in general. Thank you for all your hard work and dedication to PANDAS cases. I wonder if a nonprofit organization could be formed that could except donations to the support research development for PANDAS? Other diseases have these donation sites and we could use the funds to help get more support out there. Maybe even organize a walk for research and treatments.

http://ificanhelp.com/share-your-stories/ Check out Correy Friedman's site, and forum you can post your story here also. His book is well written Against Medical Advice Another neat website has PANDAS listed on it at the american autoimmune association website. http://www.aarda.org/issue_display.php?ID=22 Please send letters to your state representatives to continue funding for autoimmune disorders. This affects all our PANDAS kids. Let's get the word out to friends and families. An example letter is shown here.