britneymag

I have been wanting to make an appt with Dr Doctor for my kids. Could you give me some info on him?

Thank you so much for all the info. My son has a very hard time concentrating and I would love to be able to get help for him. My daughter doesn't really have an issue with that but she has so many tics and her OCD is getting worse. I want to get something started before school starts even though we homeschool. I think I will call and make an appt tomorrow. They told me today it is a three week wait. I am so glad to hear that your dd is doing better. I will be so happy when my two are feeling better. My daughter has been dealing with for 8 years now and she is just tired. Melanie

Thanks. I will try to get in touch with her.

I am trying to find a Dr in Texas who is knowledgable in Pandas. Does anyone have any experience with Dr Rao in Plano? What kind of lab testing does he perform? What kinds of treatments? I am trying to find someone who will at least try long term antibiotics just to see if it will help my kiddos. One of my kiddos has tics (which seem more like OCD) and OCD. My other one has a couple of little tics but has very bad ADD. Melanie

What dosage of minocycline is your dd on? Melanie

Thanks. I forgot about allowable charges. That would help a lot. We have united insurance and I know that labcorp is who they use. Looks like I need to work on getting an appt set up:) Melanie

I had rheumatic fever when I was 18 and the backs of my knees and my collar bones were the joints that hurt. It was off and on for years. I only remember them actually swelling one time. That and a rash were the only symptoms I had when I was diagnosed. Melanie

Does anyone have a approximate cost for lab work that someone like Dr T would order? I have put off having labs done because we have a 6,000 deductible, but I think I am going to have to break down and get a phone consult and labs. I just wanted to know a round about figure that I am going to have to save first. Also, do different labs charge more than others? Melanie

The first thing I thought of was HPV. Imagine that, the department of health won't tell these people what their children have. I'm surprised that it was even mentioned in the news. I hope tese parents do some digging on their own and don't just count on the CDC to tell them what it is.

Thanks Stephanie. I will check back with you. I actually went to my first homeschool meeting last night and they had a homeopath there talking about natural approaches to keeping our kids healthy. Talk about being in the right place at the right time. God certainly puts people in your life when you are really looking. I hope that things just continue to get better for your boys:) Melanie

Stephanie, How severe were your son't tics and how long did it take for them to go away with this treatment. It is the only thing that my dd really has issues with now. They were gone for about 6 months after having her tonsils out but this spring I think allergies have caused inflammation and her tics are getting out of control again. Where would you get ignatia? Do you have to find a Dr. or can you find it online? Melanie

Did you get this covered by insurance? If you did, what diagnosis or reason did they give for it? I have a great neuro for my kids but he doesn't treat very aggressively. I am moving to Houston but would be more than willing to go to Dallas for someone who knows about Pandas.

That is awesome. So glad that you found someone close to us. What is the dosage Dr. K recommended? Melanie

She is not having night terrors but just nightmares right now. She is inconsolable though. So not like a normal nightmare. She is literally shaking it is so bad. She did have night terrors years ago before we ever tried any treatments but those went away with antivirals. I do have a call in to her neuro and I just pray that they will extend her abx. I hope things get better with your son soon. Melanie

Do you think just being on the antibiotics for the rest of the week is okay? My dd just her tonsils out last Thursday and they just gave her antibiotics for 7 days. I am scared that when she get off her tics will pick up. I thought you were supposed to be on them for at least a couple of months after surgery. Her ENT said that if I think she is having PANDAS issues I need to call her neuro. She won't prescribe anymore for her. Thanks for posting this about the nightmares. I have been fretting all this week because I thought it was maybe strep wreaking havoc again. Melanie

Wow, I have always wondered if my dd's RSV when she was 4 months old might have the been the start of it all. I wonder now if she had strep? They of course didn't check. Her first tics started just a little after that but I didn't realize that they were tics till later. That is great about TX Children's. I love my Dr's i have here in Austin, but they don't believe in long term ABX so I would love someone who would prescribe that for my children. Melanie

Thanks ladies, I think I am going to wait till a couple of days before the surgery and just see how she is doing. Her Tics do seem to be better. Her headaches and stomachaches have gone away and she has had these for about two weeks before her throat started hurting. I thought I had her stomachaches narrowed down to lactose intolerance thinking that we had killed all of her good bacteria with ABX but when we started giving her the amox they went away. I guess it was just the strep. I am so thankful for my Dr. putting her on the MB12 cream. It is changing Brit's life for the better but the process of taking everything out of her body that has been flooding in there for the past few years is hard on her. I am actually seeing her body fight things normally instead of just making her tic. She even got tired and slept this past week when she was sick. That is unheard of in our house. She is usually still up running around even with a temp of 104. The three times before this one that she had strep since starting treating her for PANDAS with ABX her tics haven't picked up. This last time must have been a nasty bug because they were overnight. The only thing that I don't like is that he doesn't believe in long term ABX. Maybe I need to bring him more info. He has been treating viral stuff for years but just started treating the bacterial side of things.

My daughter has been using MB12 cream for 4 months now to build up her immune system so that it can fight viral and bacterial infections. Since being on it, she has had strep 4 times even while on ABX. She hadn't shown (normal) signs of strep for about three years before this. This is actually a good thing because her Dr. told us that the strep was colonized in her body and she is now fighting it and getting it out. He recommended she get her tonsils out (finally) but I am worried about doing this while she is ticcing. She started ticcing pretty bad about 10 days ago with this latest strep. He put her on Amox 500mg x3 daily for 30 days and her surgery is set up for June 24th right before the 30 days is up. Should I postpone it for a couple of months and try to get her on a stronger antibiotic or should I go ahead with it and just request IV ABX during the surgery and a strong one for a few months afterward. I am glad that they are finally getting the pitted permanently swollen things out of her throat but I do not want to make things worse for her by kicking something up. Any advice??? Melanie

My daughter has always ticced after being in swimming pools. I know that there have been topics on chlorine causing this but has anyone had a Dr. tell them a medical reason for this happening? If so what is it and will it last forever or does it get better as they heal from PANDAS? I hate that my baby can't swim and I want to know if she will ever be able to go swimming with her friends when they ask. Melanie

saidie10, Did you ever call Dr. Stewart and Dr. Taylor's office? I know they have a wait but it is not a year form now. That is crazy!!! They treat the cause and not the symptoms. Dr. Stewart is even going to be speaking at the Autism one conference so they are well versed in Pandas and Autism both. Melanie

I can't stand the sound of open mouths chewing or loud chomping either. I have been this way as far back as I can remember. I get instantly ANGRY!!!! I never related it to my other pandas symptoms but it does make sense. My son can't stand the song of my dd singing but I thought it was just because he didn't like her. LOL He doesn't mind hearing songs on the radio. Melanie

Dr. Kendall Stewart in Austin treats children with Autism as well as Pandas. My dd has seen him for Sensory Integration Disorder issues which he treated with antivirals but we could never get rid of the Tics. I asked him about PANDAS two years ago when she was seeing him and he had never heard of it. So I pushed PANDAS to the back burner. When I recently started researching PANDAS again I realized why. She has bacterial issues as well. We currently have an appt to see him for the PANDAS issues. He just started treating this disorder within the past 12 months so I am not sure of his exact protocol, but at least he recognizes it and has researched it. He is with Neurosensory Center of Austin. Melanie

Is this the same as gamma globulin shots? My mother had these when I was a kid because she always seemed to catch everything. I don't know if they worked, but she got them for quite a while once a month. When you say they made you feel better, do you mean your symptoms went away? Did you stay healthier at that point? What kind of a Dr would have to give it to you? Melanie

Well, we did soooo good during Christmas holidays. I couldn't believe how much better she was feeling. Family noticed also. In the meantime, my MIL who has lived with me for the past 18 months informed me right before we went on vacation that she is a TB carrier. She is also highly suspect to be a strep carrier and gets cold sores so also a herpes carrier. ACK!!!! Over the holidays we were away from her for 2 weeks and they were the best two weeks for my child in years. The day that my MIL gets back in town she took DD to the movies and she came back ticcing and has various ocd symptoms. I am sooo upset that I am just finding out about the carrier status. I talked to my MIL and told her that I thought she was reacting to her. She said that she feels so bad but she has not talked about getting treated for anything. I'm not exactly sure how to approach her about this and I don't know if a Dr would treat her if she is asymptomatic. She is supposed to moving out in the next couple of months and I will be curious to see if DD gets better when she goes, but I don't know what to do until then. And what about when she wants to have her come over for a visit? Melanie

Sorry I haven't replied. We are away for vacation and don't have the best signal. My dd was on the tamiflu for 10 days. She has been off for a week now and she is still doing great. She does still have a couple of tics. Nothing vocal which is usually what she does most. She has had the strange head, hand, and leg movements that I now think are SC but nothing else. Overall she is 90% better than she was three weeks ago. I have never thought about an immunologist because the neuro that we have taken her to is also an allergist and treats with antivirals and antifungals. If he isn't as agressive when we go see him in February i might look into that. He has never treated her for PANDAS before because he just recently started treating for it. Melanie