keeptrying

Just got cam k back for dd9 and it was 164. Have not been able to talk with Dr. Cunningham yet but understand this puts us in the higher than average category. Our next step is steroid burst in addition to more testing. What should I expect? I have read of some experiences but could use a little more help. I a nervous beyond words but feel we need to. The tics are so high right now that I feel we MUST do something and move forward. So, good experience, bad experience? How long did it take to see anything? Anyone have bad explosion in symptoms during or after? How soon did symptoms return? Thanks everyone.

Has anyone had experience with in home IVIG? This is where a qualified, RN is sent out to your home to administer IVIG for you and stays during the entire treatment and can provide emergency care if needed? I have recently found out that our doc uses this option. I would really appreciate hearing from anyone that has had this experience - good or bad. Thanks.

oops I spelled it wrong.. Mecamylamine.. here is small sample of what I read: The medication that made such a difference is called Mecamylamine.. popular in 1950's for hypertension, but considered obsolete by the mid-70's. USF's Dr.Archie Silver already knew nicotine patches, which help people stop smoking, also relieved the symptoms of Tourette's. So, USF researchers began looking for an existing drug that would do the same thing. That's when they stumbled on Mecamylamine. ---Dr.Archie Silver, USF Psychiatry: "It seems to work by inhibiting certain receptors in the brain it stopped them."----

I am wondering if anyone knows about using meamylamine (nicotine patch) for the use in controlling tics and mood in TS? I have read several studies that show it is very effective and safe long term. I am in the process of contacting the docs out in Univ. South Florida that conducted some research into this. Just wondering if anyone knows anything about this? If I am lucky enough to talk to the docs, I will post what they tell me. In the mean time, any thoughts?

Oops, pushed add reply before actually replying. I do not have anything brilliant to post after reading this. I just wanted you to know that someone read this, feels for you, and is listening. You continuously amaze me with your posts. You are inspiring. I had a meltdown today, feeling sorry for our situation and myself. I read this, and thought, if this young woman can continue on and fight then so can I. Thank you.

HI - can you tell us how long your child had symptoms before you treated with omnicef and what the low dose was? How long were you on omnicef too before you switched? Glad to hear that ivig has helped you.

I am so glad for you Texascatholic and hope the improvement is continuing. We do not have good news to report unfortunately. Day 9 on omnicef and still nothing. I emailed Dr. K just to get an opinion and he told me no need for abx and to just schedule ivig. This confused me because everyone here says to give it time. could it be that she has had symptoms for so long (4 1/2 yrs) that abx would not be effective anymore..? this is what I am fearing.

I too was told by Kathy Alvarez that being on abx will not effect the test results.

We recently switched to omnicef after 10 of zithromax. We were not seeing any improvement on it and I felt like it was making my dd's tics worse. Our doc said it was ok to switch to omnicef, we have been on it for 7 days now. He has her on 300mg twice a day and the bottle is for 30 days. I plan to give it one more week then stop if we do not see anything. We do not have an official pandas diagnosis..yet..we are waiting on Cunningham test results and hope to have them next week. If they tell us something, we will continue the abx. Did your doc agree to the steroid after zithro because there was no improvement or were there any tests showing there is no active infection? I will tell you that I got a lot of comments on omnicef working wonders after trying zithro with no results. Some say with in 5 days and others report 10-12 days before improvement. Maybe you need to switch and give it time. Sorry I can not offer too much help, I think we are in the same boat of waiting for something to happen. It is very frustrating! I wish you luck.

NVAmom, I pray we are in your shoes this time next year! I am so glad to hear that your ds is making progress. This reply struck me because of the way you said, your entire family was held hostage. I am living that right now. As a matter of fact, I have an opportunity to go out with friends this evening with all the kids and i just want to hide all of us. I am ashamed to say that. We have not gone out at all, outside of school in over a month. I have another child that is older that i know is suffering by this too. I feel so guilty to say the least. I just said to my dh today that I wish we were normal and could just go out and have pizza with friends and not have a care in the world. I feel awful that I do not handle these times well. I think I might bite the bullet and go out this evening and just let my kids have fun like they deserve. thanks for your reply. It makes me feel better knowing that there are others out there coming into this late in the game and still seeing success. I am happy for you.

I read through many posts and it seems that most kids on abx and/or steroids were diagnosed and treated fairly quickly after pandas symptoms started. Am I wrong? My dd's tics started almost 5 yrs ago (had strep and impetigo 4-7 months prior to symptoms coming out)and the idea of pandas was dismissed by pediatrician since aso was normal. Here were are 5 yrs later and finally trying to treat what I THINK is pandas through a great doc that is willing to help. We are doing omnicef now (gave up on zith after short time since no improvement and possible worsening of symptoms)and still nothing. Can it even help now after this long? Is it even possible to still have an active infection after this long? Sorry if it sounds silly but I am new to this and trying to figure it out. I get that if it has gone into autoimmune mode then steroids would be the better choice. Has anyone else jumped in late in the game like me after your child has had symptoms for years and then tried treating with this protocol and had success? I am just not sure I should be going down this road anymore. Any advice?

my dd is absolutely terrified of needles. If we go to any doctor appointment, she will cry asking me if they are going to give her a shot. She was checked for an ear infection and she cried the entire way there and I was unable to convince her that there would be no shot. This Tuesday we took her for the cam k test. It was awful. She screamed and said I can not make her do it and cried uncontrollably. It took my husband and I to do it but we did. I was terrified and had a lump in my throat and held back tears but looked her in the eye the entire time and she got through it. It was truly awful. We get home, she is drawing on her bandaids and we get a call from the lab saying they think they messed up the test and can I please bring her back for another one..................................................................... I immediately called Madeleine Cunningham and SHE WAS THERE. She called the lab and worked it out for us. All the while my dd is on the floor in her room crying and screaming. I started to cry and thought this will truly send her tics through the roof. Anyway, that is over. We got through it. A good friend reminded me how resilient our children are. I am sure my dd got over it better than I. I could not eat dinner - she did and had a treat after.

GREAT idea about the veg caps. I will do that. Thanks, I would not have thought of that. My doc does know of the pen. allergy but I am going to call anyway. Thanks.

Did your rx have dye in it? I have called around and was told that it does not come in dye free. Is that a concern for you?

the hop/jumping was the first tic my dd had. I remember thinking, "wow she is so happy". What a ding dong I was, I had no idea. As the hopping continued, I figured it out. She would walk but when she stopped is when she jumped. It is like every where she went it ended with a hop. This only lasted for a month or so then all the other motors started showing up one by one. She has had tics for almost 5 yrs now, and we have only seen it that time. I have always felt that it was connected to ocd. If her bangs are too long - usually the head shake would start, if she had a cold, the sniffing would come on and stay long after the cold. I am sorry for what you are going through. I get it.

My dd was on zithromax for 2 weeks and we saw nothing good come of it. I have already posted about that and know I probably should have waited it out but I felt it was actually increasing her tics as the days went on. Our doc has given us the option of omnicef if we would like to try it. I have read some about it and know that it is a new drug and that worries me. My dd has a penicillin allergy so some of my options are limited. As I have said before - she has not been diagnosed with panda's yet.. this is a trial. We just did the cam k test yesterday so we have a wait ahead of us to get results and I am not sure I can go that long with out trying something since her tics are at an all time high and have been for a month. I was hoping to hear how omnicef worked for some of you. Any bad side effects? Did omnicef help with tics and not just behaviors? Thanks everybody, I need some help...again

hi - we tried hypnosis with our dd9 and it did not work for us. We went to a very reputable doc that claimed to have helped a boy with TS and even has video to show you the proof. It did seem amazing and we were sold. We were told up front very honestly that self hypnosis will only work if the person is motivated to change. There is "homework" to do at home on your own - meaning the child goes home and practices the hypnosis techniques up to 5 times a day. The parent is not supposed to have anything to do with it only the child is in control of this. I would say if your child is bothered by his tics then it might be for you. My dd still does not care much and it has not impacted her life much (it kills me however)which is why it did not work for us I think. Be careful though it is very expensive. Send me a pm if you want more info. good luck.

The only thing you can do now, Emerson, is move forward. We all can get caught up and angry - and you have every right for sure - but it will not help you. You have proven to be a strong person, now take what you know and get well. WHEN you are well, you will be an advocate for others and help people like you needed help years ago. You already are helping people. You helped me with all your responses and then some. This is unbelievable that medical professionals made such errors in judgement. I am sorry for the pain you are feeling now but I hope you feel will stronger tomorrow and the next day and the next.

thanks for this. how soon after the switch to omnicef did you notice a slow down in tics?

I am so sorry to hear about your son's struggles. My heart breaks daily too. I too feel bad for my dd. I fear that as she gets older she will become increasingly aware of her looks - we have all been there- and start to feel bad about herself. Right now, she does not care and is happy and plays without worrying about a thing. Her friends have not said anything but they are still young. Soon, that could change. We are just starting down the road of treatments and it is really scary. Her tics have been VERY HIGH since May. She has never had such a long stretch like this before. I understand you have been at this for 3.5 yrs, if you do go to meds, feel great about how hard you have fought for your son. Just because, you/we go to meds for help does not mean we are giving up. We are only doing what we feel is best for our child. I never thought I would really consider medication but I am. It makes me sad that we might have to but what is the alternative? Not good either. I will keep you in my thoughts and hope your son thrives med free or not.

We too are using activated charcoal. My doc said I could give 2 tabs at a time but to make sure they were 2 hours from abx or probiotics. It has not caused any constipation or upset for my dd. give it a try!

Hi - I tried to PM you but it was full. I would love to hear more when it is convenient. Thanks

Calling out to anyone that has had experience taking their child to be evaluated by Dr. Margo Thienemann. I understand that she has treated many patients for Pandas and does a lot of diagnostic testing. David B. Lewis requires that his patients be screened by Dr.Thienemann before coming to see him. I hear he is leading doc in Immunology and Infectious Disease. Any input?

Thank you so much for your honesty. I know everyone has their own experience. I would not have asked the question if I was not willing to hear the good and the bad. I am sorry your son had such an experience. I am on the fence still