abbe

I was so scared to try fish oil with Nick but he has done very well on it and been completely tic free on fish oil. but thanks for the heads up for sure !! abbe

the title of this post is scary!

Jill, I have never tried the ibuprofen. Nick was on a baby aspirin per day from Chop to prevent another stroke but I have taken him off and switched him over to fish oil. I could try it what does it do???? I want to try the detox product you suggested. I won't ever be able to do IVIG with Nick since he has a weakened artery in his neck...too dangerous. At this point I don't know what we are doing besides abx. The pandas is all new to me. I am a bit overwhelmed at times with worry but Nick isn't a severe case I don't think Abbe

Jill, I have never tried the ibuprofen. Nick was on a baby aspirin per day from Chop to prevent another stroke but I have taken him off and switched him over to fish oil. I could try it what does it do???? I want to try the detox product you suggested. I won't ever be able to do IVIG with Nick since he has a weakened artery in his neck...too dangerous. At this point I don't know what we are doing besides abx. The pandas is all new to me. I am a bit overwhelmed at times with worry but Nick isn't a severe case I don't think Abbe

Hey, So my son , 10 is on his 8th day of azithromycin. His demeanor is like night and day. Is sleeping better than I can ever remember. All night long (he used to literally ask for benedryl to sleep, because he was so desperate to sleep. He not only is sleeping all night but the whole bed time ritual getting up and down 3 times to say goodnight, getting retucked in, anxiety is gone. He is pleasant, cooperative, nice, gentle it's wonderful. He went to see Dr. T. two Friday's ago and we did the bloodwork last Wednesday.He already tested positive for Mycoplasma. I only went looking for Myco and strep prior to Dr. T. So over the weekend and today his back/stomach tic is in full force. He said to me at breakfast "Mom my back tic is back and I haven't had this one in a long time.." He also is almost "newly" coughing so it really seems to me to be die off. I am not familiar with antibiotic die off only die off from herbs or things like coconut oil. I have been pretty non medicine big on supplements and herbs with my son as well as our whole family. I actually am so scared at the thought of antibiotics because of the yeast and yes I am giving probiotics. I saw some suggestions such as the milk thistle for his liver, not sure why reservatrol was suggested. We started epson salt.. My son's tics have always been my major concern so it is hard for me to watch his tics getting maybe worse before better. I need some support during the die off... thanks abbe http://www.abbelang.com 0

Hey, So my son , 10 is on his 8th day of azithromycin. His demeanor is like night and day. Is sleeping better than I can ever remember. All night long (he used to literally ask for benedryl to sleep, because he was so desperate to sleep. He not only is sleeping all night but the whole bed time ritual getting up and down 3 times to say goodnight, getting retucked in, anxiety is gone. He is pleasant, cooperative, nice, gentle it's wonderful. He went to see Dr. T. two Friday's ago and we did the bloodwork last Wednesday.He already tested positive for Mycoplasma. I only went looking for Myco and strep prior to Dr. T. So over the weekend and today his back/stomach tic is in full force. He said to me at breakfast "Mom my back tic is back and I haven't had this one in a long time.." He also is almost "newly" coughing so it really seems to me to be die off. I am not familiar with antibiotic die off only die off from herbs or things like coconut oil. I have been pretty non medicine big on supplements and herbs with my son as well as our whole family. I actually am so scared at the thought of antibiotics because of the yeast and yes I am giving probiotics. I saw some suggestions such as the milk thistle for his liver, not sure why reservatrol was suggested. We started epson salt.. My son's tics have always been my major concern so it is hard for me to watch his tics getting maybe worse before better. I need some support during the die off... thanks abbe http://www.abbelang.com

Stop all dairy and look into Acetyl l carnitine for throat clearing

My son has just started Zithromycin and he is on day 7. I feel like his one tic is getting stronger and need to start helping him with the detox.

Can you give me product numbers on these products? I found the site but can't find the products. Ideally I want to heal my son as naturally as possible. Thanks abbe

What is noni/amyco noni juice?

This is how my son is. When he is not in tic mode he can do anything and while he is in tic mode things set him off. I do however always watch his diet. abbe

So I have said this before but I am new to this board after being on the tic forum for 4 years. My son's extensive blood work has been drawn and prior blood work points to mycoplasma already. My question today is do Pandas kids tics get exasperated by triggers such as food allergies, lights, video games, My son seems to have every single symptom of Pandas except OCD. He has been on Azithromycin for 7 days and I still see a stomach tic going on but no others. The main difference is my child. He is like an angel. Sooo pleasant, happy, cooperating, sleeping better. Wow ! I don't know if I even care about the tic. I realized he was "difficult" to say the least but it has been a joy lately to be around him. I feel like a different person also for the first time in a long while.... abbe

Hey all, So as I have stated and been posting lately I am new to this board but 4 years over on the tic board. I am just wrapping my head around the fact that my son may have Pandas due to the Myco. infection. We just took blood yesterday but Myco. has showed up on bloodwork from last week. My son has EVERY symptom except OCD. But when I say every symptom the white paper sounded like it was written for him. Here is my question . Do you (Pandas parents) find some things trigger your childs tics like allergies, chlorine, lights, video games??? I am asking because I know when Nick is in tic mode certain things really effect his tics and I was wondering does this NOT happen in Pandas kids????

Ok, thanks. My son is getting the blood drawn at out doctors office where he is comfortable. The nurse said it stated preferred in the book so I wanted to see what everyone else had done. abbe

Hello, Quick question. Did your child fast before their bloodwork? I believe the IGG subclasses say you have to. We are going this week. thanks abbe

Where do I read the white paper? abbe

Thank you, thank you thank you all Just got back from Dr. T's. Exhausting day but very worthwhile. He is running a slew of bloodwork on my son and on my two older sons also. I will find out the results and then proceed forward. In the meantime he prescribed Zithro. since the bloodwork I did showed Mycoplasma past infection. I am hoping the antibiotics show me a good picture as to what is going on with him coupled with the blood work. I am aware of the clay, epson salts and use probiotics for my son. I also have introduced olive leaf. Thanks again and I will post blood work results abbe

Thanks for your reply. I actually "chickened" out and took him off the next day. I feel its Mycoplasma with Nick but we will see... abbe

So since it would be impossible to tell my whole story again, well not impossible just difficult. My son who is 10 years old now came down with all his tic symptoms at his Halloween class party. For what ever reason and I can't go backwards . We ruled out Pandas because he never once had strep. However he did test for Mycoplasma but I didn't put him on antibiotics. We put him on Amoxicillan last week and it caused a super strange reaction on day 7. He had a weird anxiety attack, worrying, crying and then went to bed and woke up in a major state of confusion, big time. I was one step from taking him to the ER but spoke with Dr. Chung his Dr. and we decided to keep him in our room for the night and keep a close eye on him. He woke up like it never happened. So I don't know if it was an allergic reaction to the drug or it was the Herx. effect and he was detoxing. I guess I am just venting since we are taking him Friday to see Dr. Triffeleti and I am a little nervous about putting him on another antibiotic. Funny how worrying about tics is nothing like worrying about something that could be life threatening. Has anyone ever experienced a strange initial reaction on antibiotics??? thanks, have a nice day Abbe

Hey, I am a life coach in New Jersey. You sound a lot like me and I would love to be Facebook friends. abbe lang

I understand my story with Chop is a long one. If you find one doctor you like there maybe it is different. I just had the worst experience ever with my son there. And then when he broke out in "pandas" symptoms his neuro doctor was so matter a fact about telling me "Your son had TS" period end of story and here area the meds he would take but your son can't take them since he has a prior medical history so basically "oh well" I fought for 3 years and have been on the other tic board thinking it was allergies or this or that nay to come back to the realization that its pandas after 3 long years. I actually just blogged about this a bit at abbelang.com abbe

I absolutely hate CHOP. They misdiagnosed my son who suffered from a pediatric stroke. Their emergency room doctors were awful. They almost killed my son , and I am not exaggerating in the least. His neurologist Dr.Sabrina Smith said they do not recognize Pandas as an illness. Do not waste your time at this hospital. I wouldn't bring my dogs there for treatment.

Thank you all I am all over this... abbe

bump

Thanks all- Thank you for your responses. I have a very good relationship with my son's Dr. Dr Chung. He is not his pediatrician. So the Majority of the people on this board used Azithromycin not Amoxicillan? If I could present the reasoning or logic to Dr. Chung he would read and write the script. I want to have my son on the correct antibiotic and then take him off the topamax and see what I see. I really appreciate your help. And yes my oldest son who had OCD to have therapy and did work through it. But my middle son also had a slight tic, and can have anxiety. I never looked into any of this since we overcame all issues until my youngest son had the tic explosion, has separation anxiety, sleep issues. Etc. Thanks so much for your help abbe