Vicki

Thanks so much! I would like our whole family to be checked to see if we are strep carriers. Thanks for the advice!

Streptoccocinum and Lycopodium? The doc wants to start my son on 3 months of the Streptoccocinum and 1 month on the Lycopodium. Any advice would be much appreciated! Thanks!

He had another culture Friday and came back negative so I am guessing the amoxicillin kicked it out. But, he is still having vocal and motor tics and the fears have all come back. The doctor actually wrote down a plan. Fish oil, probiotic, vitamin D, and 2 homeopathic meds... one called streptoccocinum and the other is lycopodium. Have you ever heard of these before? She also is putting him on an anti-inflammatory diet.

He has had multiple positive herpes zoster tests. His strep came back negative after round of amoxicillin. He is starting on two homeopathic meds. .. streptoccocium and lycopodium. Fish oil, vitamin D, and a probiotic as well. Plus they are running more blood work. And putting him on an anti inflammatory diet. Vicky, I think your son would have gotten a varicella vaccine at one year if you were followimg the schedule at that time. If he had a herpes zoster outbreak (sound like it's mild) that would have made sense. There have been other reports of children getting shingles after getting the vaccine. The virus stays dormant in your body and can reactivate as shingles. The part I don't understand is having a case of chicken pox 2 years ago. From what I understand the virus always reactives as shingles. Has anyone ever confirmed that it's herpes zoster with a lab test?

Also, you might want to read here Pinned (at the very top of the 1st page of the forum) These are some commonly asked questions Helpful Threads & Links for PANDAS http://latitudes.org/forums/index.php?showtopic=6266 Q: My doctor has said that my daughter is a strep carrier and that the positive strep culture is meaningless. Is this true? I stopped all vaccines when my son was entering K. I heard too many stories and also my sister-in-law stated a good case of why she doesn't vaccinate. I also watched my friend's healthy daughter become autistic and they are saying its because of vaccines. He may have had the varicella vaccine before K. He has had the herpes zoster that started when he was a year old. He gets it right near his left eye. Comes out once a month til I cut gluten out two years ago and only comes out about every 9 months now. He had chicken pox 2 years ago. It was around Christmas time when he was 7. He was always extremely cranky and quickly frustrated every time the herpes zoster came out. That was a true sign it was coming out. Allergies trigger it, like a wood stove, cats, and pollen. And gluten. Thanks for the information on amoxicillin. I will check the link out now...

He has had over 2 dozen impetigo and herpe zolster infections in his nose and near his eye since he's been a toddler. The ped is just now looking back over all his history and things are adding up now to the pandas. Impetigo is either strep or staph and every time he gets it his tics and fears come out overnight. She is just now recognizing how things are making sense. Praise God!

I just started this year homeschooling him and my daughter. With the clinginess and anxiety he has he would have never set foot in a classroom all day without me. We can't even get him in Sunday School for church anymore.

Yes, the doctor is a homeopath. The amoxicillin seemed to work for a little, but now he is back with tics and fears. I gave him ib profen the other night and it worked a little. He goes back Friday after the amoxicillin is done to get another strep culture done. She was saying if the strep is still there he might be a strep carried. Does that change anything?

Had the appt today. His aso test was in normal range, but tested positive for his strep culture. She believes this is pandas and he may be a strep carrier. She is going to do another culture Sept. 12th when he is done the antibiotics. His tics have almost completely gone away. Still has a little bit of fear and clinginess. She is suggesting going the homeopathic way instead of a prophylactic antibiotic. Any suggestions?

His strep culture came back positive. We meet with the doctor tomorrow morning to set up an action plan. They are still waiting for more blood work to come back. They are leaning towards PANDAS with him.

Amoxicillon. I will keep you posted. Thanks!!

Amoxicillon. Yeah, this is going to be a long journey. I am blessed to have this site so I can speak to others for encouragement when I have tough days. Pandas is really interesting to me. I can't find a book on it. Do you know of a good one?

My son's strep culture came back positive. He starts antibiotics today. The doc ran other blood work and have an appt Thursday. Very new to this. ...

I am going to search very hard to find another doctor. My friend suggested getting allergy tests ran. Is that something that would be good to do? My son also has warts on his toes right now we are treating since June. Interesting! Thanks so much for replying back. It's very helpful information for me since this is all new to me. I thought it was all neuro until I started just recently talking to a friend and reading about Pandas. Thanks again!

My name is Vicki and I have a nine year old son who was diagnosed with ts the beginning of 1st grade. This has been an up and down battle, but we believe God's hand is in this all and that everything is for a purpose. Let me explain a little about Vincent. He's always been a happy, smiling little boy until August of 2011. He started with this fear of going back to school, 1st grade, after accidentally giving his friend a nosebleed in K. He wouldn't stop talking about possibly that happening again. He dwelled on it. Then it started with someone breaking in the house and killing his family, thoughts of stabbing, checking everything and OCD tendencies. I have OCD, so I knew exactly what this was. One night we put him to bed and the next morning he woke up with so many motor tics, didn't know what they were then. His hands were flapping, eye rolling, neck snapping, etc. I thought something was medically wrong. Made an appt. with ped, who then referred us to neuro, who then diagnosed him with ts after full exam and lots of questions. Didn't even suggest possibility of this being illness-related, all neuro. I read articles online of pandas and the strep infection. He had strep in K, started with ts beginning of 1st grade. He has impetigo and herpes zolster that comes out near his eye and in his nose ever since he was a toddler. He has allergies and asthma. He was 5 1/2 weeks premature so docs say he is sick because of that. He has a gluten sensitivity that we started to notice about 2 years ago. I cut him off gluten and the herpes zolster went from coming out once a month to once every six months. Then I noticed his tics decreased dramatically! The last time we went to see the neuro he was shocked Vincent was doing so much better. I explained the gluten and he didn't want to believe that at all. He said gluten has nothing to do with ts. I still keep him off because I have seen the difference it makes. The neuro doesn't want to believe this is triggered by allergies or illness and the ped believes that this is all neuro as well and won't run another strep test on him. Don't know what the next step is.... We don't have much money to travel to top docs who don't take his insurance. Thanks for any feedback! It will be appreciated very much!

I will post on the Pandas page. Thanks! I don't know where to turn right now. He had strep when he was in K and in 1st grade started with ts. His neuro believes its all neuro related and just threw out the idea of food allergies being a trigger, even after he said "wow, Vincent seems to be improving this time, what's different?" I responded, "I cut gluten out." He says, "gluten has nothing to do with ts, so he can eat that again." WHAT?? Even after making a comment of him improving he still replies back with that. I'm not taking his advice because I know my son gets so much worse after eating gluten, even throwing it all up as well. The "fill in" ped I took him to yesterday, who has never seen my son before, acted like she knew his whole history just by skimming down his chart. I made him an appt to rule out any sicknesses he may have because its hard discerning his fears of everything hurting to him really hurting. He has a lot of fears right now. He thinks everything on his body is dying. He is constantly checking himself. She did a full exam and told him he's healthy and he relief yesterday til this morning its all back again. She told me to give him melatonin because its probably sleep related because he is checking on the whole family several times before bed to make sure we are ok. Then I talked to her about strep and she says, "looking back on the chart I see he only had it one time." Isn't that all it takes? So, right now, I'm exhausted.... what is my next step? He is on medical assistance and we can't afford to travel to top docs.

Thank you for replying back! I am going to order her book. It really stuck out to me when I first clicked on this website. I was reading forums on the Pandas site and thought it was very interesting to hear all that. It crossed my mind several times thinking this may be illness related. My son got strep throat in K and before 1st grade started with ts. His immune system is not good. He gets impetigo and herpes zolster near his eye and in his nose a lot. He has allergies and asthma as well. The neuro swears that gluten has nothing to do with ts, but I experimented with this. I took him off gluten 2 years ago and his tics decreased. I put him back on after 6 months and he started right back up again. So, I took him off and he's staying off regardless of what the neuro says. His ped just wants to drug him and that's not going to happen. They try to tell me it's sleep related so give him melatonin. It's so confusing to hear all this stuff when deep down inside I know something is wrong. Adult fears and anxiety should not be common of a nine year old. Thank you so much for your feedback! I need a support group. Around here it's uncommon and I feel lost.

Hi, my name is Vicki and my nine year old son was diagnosed with ts the beginning of 1st grade. He started overnight with this. One day he was a smily, happy little boy to the next day full of fear that I was going to die or someone was going to break in the house and kill the whole family. He continued on with these fears and then one night he went to sleep and woke up the next morning with uncontrollable movements of the head, arms and neck. Anywhere from flapping his arms to snapping his neck. I had no clue what was going on and it scared me a lot. Made an appt with ped and then from there to neuro. The neuro diagnosed him with ts after a full exam of questions, etc. I have cut gluten out of his diet after meeting with a nutrionist. His tics decreased dramatically for a while. I am at a loss of what to think...some docs say its neuro and some say its immune. So believe its dental even. We are true believers that God is in this all, but my heart breaks for my little boy who has sooo much fear and embarassed by his tics. If anyone has any feedback for me on what I should do. I just feel like there is something more to this then just medicating him, which we are not right now. Thanks!!