Blessedwifeandmom

My son just started his first round of Antibiotics and it has made him have diarrhea. I gave him probiotics last night but he has had diarreah 2 times today. I'm curious if I should try Activated Charcoal to help ease his stomach discomfort. Also, should I discontinue his magnesium while he is having the diareah? Thanks. Timing info of Charcoal would be great to. Thanks. Cindi

I just love you all already. You are so quick to respond and it's so good to have the support right now. Thank you all so much. I pray I can help someone someday like you all are helping me. Thanks, Cindi

I'm so excited. My son was prescribed 875mg of Augmentin 2 times a day for 21 days to start and then have a follow -up. If he is doing well she will probably continue it, but she isn't 100 percent on board with doing it forever. How long before most see a change? Should I start probiotics immediately? Would adding OLE be too much on top of Augmentin? What would those with experience recommend as far as probiotics goes? Timing on Antibiotic, Probiotic, Supplements. Has anyone gone Gluten Free and seen good results? Sorry for all the questions. I have read some of the old threads but just wanted some to chime in now as to what worked best for them. Thanks. Cindi

Maribel, I will definitely keep you and Chris in my prayers. We are just now starting this journey into treatment for Pandas and I have found this site so helpful as well. Cindi

Similar thing happened to me today except I went to my GP thinking I had STREP. I took the book Saving Sammy in with me and talked to her about it and she said she would be glad to help me. I'm taking my son in the morning to see her and she said she would give him an ABX and see what happens. Now I'm trying to figure out what dose to recommend for him. He is 12 years old and 71 pounds. I'm so happy for you and me! Maybe the word is getting out! quote name='marylandmom' timestamp='1288055303' post='89621'] Awesome! Good for you AND your son!

Thanks so much for the info. It sounds like our sons are about the same size. My son is 12 and 73 pounds. The thing that bothers him the most is his intrusive fearful thoughts, separation anxiety and tics that cause consequences. I know that sounds crazy but he has tics that can be destructive to his things. An example is he might be playing a video game and his tic will be playing with the power button and then it will power off and he will lose the progress he made on the game. I'm wondering if I should wait on getting an appointment with Dr. L if my pediatrician will prescribe him the abx in the morning. It's amazing to me that it will take a year to heal. Are you doing any supplements as well. I wouls love to know how well your child responds. Thanks! Cindi

I am so excited to find out that my GP in Mt Juliet Tn, Dr. Katherine Jones, is willing to correspond with DR. L if we so choose to get an appointment with her. I went to see my GP today because I was suspicious that I had STREP. I have had the symptoms for 2 days and my ds(12) tics were definitely worse. After she did the throat swab. I showed her a copy of Saving Sammy and began to ask her if she was familiar with PANDAS. She said she had definitely heard of it and asked me to tell her what I know. She actually sit and listened to me go over my son's timeline of events as I explained his Strep infections in the past and how he has sudden onset of, Tics, OCD, Seperation anxiety. She was really interested in everything I was saying. I told her that last week he tested negative for strep but his pediatrician did order a blood test for ASO titers and they were high. She then said well he did have STREP recently then. I said yes and he has had 2 negative throat cultures in the last 8 weeks but definite Strep symptoms and very bad Tics, OCD and Anxiety, and a rash but the Pediatrician didn't think it necessary to put him on Antibiotics. I did began to explain that there was a doctor in MD who treats this but I really need someone here who will correspond with her and order bloodwork..etc.. She said she would do at titer work up on me and then turned to my husband and asked if he thought he should get a strep test while there to rule out him being a carrier. Then she said if I could get her a copy of the blood work results from last week of my ds high ASO that she would give him antibiotics. She said wouldn't it be great if that's all he needs and then you will not have to go to MD. For a minute I thought I was in a dream:) It was a lot easier than I thought it would be. She said I could bring him in the morning, she would check him over and give him the script. She said if it doesn't work then I will be glad to correspond with Dr. L on anything we need. So with all that said. What should I ask for? She said Augmentin was her favorite antibiotic, so if that's what I need, How long should he take it and how much. He weights around 75 ppounds. Also how do I get the Cunningham test. Do I call or should the pediatrician call. Thanks so much. What kind of results to expect from the antibiotic if it works. Will it be after a month usually or really quick. Thanks so much, Cindi

Say we test the whole family and the dog and everyone gets antibiotics and we rid the STREP, then a week later we run into someone who has STREP and our family is reinfected, does this then become a continuous cycle? I believe our son has PANDAS and I'm also trying to figure out the next step in treating him, but as I read the forums I get discouraged because it seems like most kids are good until they are exposed again and then they have to start all over again from square 1. If I'm understanding this wrong and someone has had this disease and totally recovered due to some type of treatment, please let me know and give me encouragement that this is even worth trying to treat. Also...are there any adults with PANDAS?

I was about to ask the same question? I hope someone replies with an answer. Thanks, Cindi

He isn't on an antibiotic right now. The doctor wouldn't prescribe anything because his throat culture was negative 2 times in the last 8 weeks but his titers were high so I'm assuming that he has had strep and that is why things got worse while on vacation. Is that a wrong assumption?

I am so thankful for all this information. I'm reading Saving Sammy now and praying about what to do. For now he is own quite a few supplements and it has helped some. Especially the OCD symptoms. The Inositol has helped him a lot in that area. Unless it's just a coincidence that he is better. Our biggest issue is with him being scared of being alone in any room especially bathrooms and he will not sleep alone because of the scary intrusive thoughts. Any help in how to help him with this would be great.

Thank you for the information. Do you use her and what has been your experience?

My son definitely has the OCD and Tics and they never totally go away, but definitely get worse when he is sick so does this mean I need to wait until he is sick to the bloodwork. Right now he has been sick, his ASO were high but I don't think he has Strep at the moment. He did call from his homeschool tutorial yesterday and said he was nauseous and headachy which happens a lot because he has a fear of throwing up. So when he gets nauseous he will have unbelievable anxiety attacks, shaking all over and crying. so I guess what I'm asking is do I need to wait until he has a really bad exacerbation to get blood work done. Thanks again for you reply.

Thank you all so much for replying. I have a few more questions. Does Doctor L in MD. order the bloodwork through your ped. in the state you are in and then get the results before seeing you. Do you have to travel back and forth a lot. That could get really expensive! I would refinance my house to help my son to get better but I'm just wanting to find out the best way to do this. Thanksagain so much. This forum is a God send!

On October the 14, 2006 my son the then 8 years old woke up one morning with a tic in his neck. He would shake it back in forth. His personality changed as well. I immediately thought he had a brain tumor or something neurological and took him to the doctor. They sent him for a CAT scan (which was normal) Then to a neurologist who said maybe Tourettes but more than likely it was just an anxiety disorder and sent us out of the office with a prescription to Zoloft (that we never filled) His symptoms got worst at different times, but we homeschool so we were able to avoid putting him on medicine. Long story short, after 4 years of dealing with OCD, Sleep problems, Unreasonable, Fears, Tics, Compulsions, Intrusive thoughts, sensitivity to loud noises which seemed to get worse every time he got sick, especially every time he tested positive for STREP. In fact in 2008 the doctor said if he has another Strep infection that year we might want to consider a tonsillectomy due to the recurrent infections that year. That is when I began my research in P.A.N.D.A.S. and the symptoms matched him perfectly. Fast Forward to this year In August we went to Disney World and the day before we left he complained with a sore throat so I took him in for a Strep test just to make sure. It came back negative but I asked the doctor at the appointment if he had heard of PANDAS and he had, but definitely considered it controversial. He said he would culture just to be sure it wasn't strep and would call if anything grew but it was negative as well. That was August 20th or so. We went on our trip and lets just say his tics and compulsions were the worst they had ever been the entire trip. Maybe it was the excitement of vacation but he wasn't feeling well the whole time either. On Friday, October 15th, I took Christian to see the doctor again due to a rash on his neck. I thought..GREAT he has Scarlet Fever..I missed the STREP again, like I did when he was about 7 years old. Anyway I told the doctor I think he has PANDAS and she agreed to test his ASO Titers. She also did a throat culture but really didn't think the rash was Scarlet fever. The results came back today- Throat Culture negative but his titers she said were high 323. She said the high side of normal was 150 so he has had Strep in the last few months. That's it..NOW WHAT! Does anyone know of a doctor in Tennessee or close to TN. I don't know what to do next. I'm desperate. I have read a lot of the threads on here and I'm so overwhelmed with all the information.It's a lot of great info but what should I do next. I guess I need to find a doctor close by who recognizes PANDAS and treats it. IS it normal to have high ASO with 2 negative throat cultures within 8 weeks? I know this post is really scattered. I just have so many questions. Any help would be appreciated. My son is now 12 years old and I'm scared I have waited too late.