Vicki Posted August 23, 2014 Report Share Posted August 23, 2014 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! Link to comment Share on other sites More sharing options...
Missmom Posted August 23, 2014 Report Share Posted August 23, 2014 You have to find another doctor if you want to get to the bottom of all of this. You may be surprised at how many open minded doctors there are out there who will at least listen to your stories and maybe do a trial of antibiotics to see if your son has any hidden infections. I would think you could find someone locally that would accept your insurance. That strep infection that he had in kindergarten may not have been completely cured and even though the fever broke it is, his body is still reacting to it. The only way to know for sure is to run some bloodwork. Also, even though my son is being treated with antibiotics he still reacts to viruses in his system.. It is just system overload for him. I have noticed lately that when he has a wart on him his tics start to increase, then after I treat the wart and it starts to go away the tics subside. He has had this stubborn wart on his hand and it just keeps coming back. This definitely sounds like your son is dealing with pans/pandas to me. With te sudden overnight onset of tics and all of the anxiety/intrusive thoughts. That is exactly how I first became aware of pandas with my son. He had overnight onset of tics. It is scary and you will have to fight for him. Our pedi did not believe me at first either, but I begged and pleaded with him to please run the bloodwork. I guess my pleading worked because he did agree to run the labs( I think he just wanted to get me out of there). When my sons numbers came back positive for strep the pedi was shocked, he said he now believed I was right and that he did think it was pandas. He said he had never treated it before but he was willing to help. Well Duhhh.... The reason he probably had never treated it before was because he never tested for it before. The augmentin he prescribed made an immediate difference. Within 48 hours my sons tics were about 90% better. He then referred us to a neurologist who is about 90 miles away who takes our insurance and has helped us and who is wonderful. Look on this site and others to try find information on doctors in your area who may be able to help. Call them and ask if they take your insurance. I would not give up. Link to comment Share on other sites More sharing options...
Vicki Posted August 23, 2014 Author Report Share Posted August 23, 2014 You have to find another doctor if you want to get to the bottom of all of this. You may be surprised at how many open minded doctors there are out there who will at least listen to your stories and maybe do a trial of antibiotics to see if your son has any hidden infections. I would think you could find someone locally that would accept your insurance. That strep infection that he had in kindergarten may not have been completely cured and even though the fever broke it is, his body is still reacting to it. The only way to know for sure is to run some bloodwork. Also, even though my son is being treated with antibiotics he still reacts to viruses in his system.. It is just system overload for him. I have noticed lately that when he has a wart on him his tics start to increase, then after I treat the wart and it starts to go away the tics subside. He has had this stubborn wart on his hand and it just keeps coming back. This definitely sounds like your son is dealing with pans/pandas to me. With te sudden overnight onset of tics and all of the anxiety/intrusive thoughts. That is exactly how I first became aware of pandas with my son. He had overnight onset of tics. It is scary and you will have to fight for him. Our pedi did not believe me at first either, but I begged and pleaded with him to please run the bloodwork. I guess my pleading worked because he did agree to run the labs( I think he just wanted to get me out of there). When my sons numbers came back positive for strep the pedi was shocked, he said he now believed I was right and that he did think it was pandas. He said he had never treated it before but he was willing to help. Well Duhhh.... The reason he probably had never treated it before was because he never tested for it before. The augmentin he prescribed made an immediate difference. Within 48 hours my sons tics were about 90% better. He then referred us to a neurologist who is about 90 miles away who takes our insurance and has helped us and who is wonderful. Look on this site and others to try find information on doctors in your area who may be able to help. Call them and ask if they take your insurance. I would not give up. 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! Link to comment Share on other sites More sharing options...
bigmighty Posted August 23, 2014 Report Share Posted August 23, 2014 Just because a doc claims not to believe, does not mean he/she cannot be convinced. I would ask the same neuro to run labs and also see if that doc is willing to give your DS 14 days of antibiotics if anything seems amiss. At least call and ask. The worst that can happen is that the doc says "no." Ask on this board with respect to what labs to request. Link to comment Share on other sites More sharing options...
Missmom Posted August 24, 2014 Report Share Posted August 24, 2014 Exactly, you may have to beg and plead with some doctors and give them your best (sad eyes) face you can muster and maybe they will start with some labwork. Allergy testing would be great if it is covered by insurance as many people here have dealt with mold, and gluten, and seasonal stuff, but don't be surprised if that is just a piece of the puzzle. I think your sons system may be just totally overloaded right now and it needs to get back to a manageable place. You can start with treating allergies and using supplements, but most of us here have found that it usually takes antibiotics or ivig and antiinflamatories to at least begin to get the body back to a normal starting point. After you get him to some sort of baseline then it is best to start some type of maintenance program to keep his system strong. I give my son prophylactic antibiotics at this point because his flairs are at a minimum right now and I don't want to mess with anything right now. He is basically taking antibiotics to prevent strep and other infections. Especially now that he is back in school and strep has already surfaced in some of his classmates. I think we caught everything early enough that we have not needed to have any ivig or any of the big gun treatments at this point. If you can get your sons system calmed down and get his symptoms manageable then you could possibly get through this without any of the major expense of ivig and such. Link to comment Share on other sites More sharing options...
Vicki Posted September 2, 2014 Author Report Share Posted September 2, 2014 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. ... Link to comment Share on other sites More sharing options...
Missmom Posted September 2, 2014 Report Share Posted September 2, 2014 Very good. Please keep us posted in a few days and let us know if you notice any improvement. What antibiotic did they prescribe? Link to comment Share on other sites More sharing options...
bigmighty Posted September 3, 2014 Report Share Posted September 3, 2014 Oh my goodness. Sorry you are on this journey, but glad you have some hard evidence as to the cause. What antibiotic were you given? Link to comment Share on other sites More sharing options...
Vicki Posted September 3, 2014 Author Report Share Posted September 3, 2014 Oh my goodness. Sorry you are on this journey, but glad you have some hard evidence as to the cause. What antibiotic were you given? 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? Link to comment Share on other sites More sharing options...
Vicki Posted September 3, 2014 Author Report Share Posted September 3, 2014 Oh my goodness. Sorry you are on this journey, but glad you have some hard evidence as to the cause. What antibiotic were you given? Very good. Please keep us posted in a few days and let us know if you notice any improvement. What antibiotic did they prescribe? Amoxicillon. I will keep you posted. Thanks!! Link to comment Share on other sites More sharing options...
Vicki Posted September 4, 2014 Author Report Share Posted September 4, 2014 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? Link to comment Share on other sites More sharing options...
Missmom Posted September 5, 2014 Report Share Posted September 5, 2014 Is your doctor a homeopath? I have not gone that route as my son takes prophylactic antibiotics so I can't give any specific advice on that, however from what I understand if you do decide to try it you need to work with a homeopath who is very well versed in how to treat pandas. I think there are only a few doctors I who really know what they are doing and there are pretty specific protocols that they follow. Do some research and I am sure others on this board will chime in. You may want to start a new topic so you get the attention of others who have been successful with this. I just hate to see you waste time and money as it seems you have caught this early. It is great you are seeing positive results so soon and especially with amoxicillin. Many of us have found that amoxicillin just does not work at all for our children. I am glad your doctor will follow up with another culture to see if the strep is gone. Link to comment Share on other sites More sharing options...
dasu Posted September 5, 2014 Report Share Posted September 5, 2014 Vicky, Thanks for sharing this story. Its great to hear that your son is doing better. As others have said though other antibiotics are often needed, I have seen that with my daughter. You also need may see symptoms gradually subside...as well as suffer through flares. For ourselves we have tried to minimize social contact with sick kids, homeschool etc. We just pulled the kids from a home school group as several of the families have been battling strep and we noticed immediate symptoms with the kids. Link to comment Share on other sites More sharing options...
WorriedDADNMOM Posted September 5, 2014 Report Share Posted September 5, 2014 Vicki, best of luck and God Bless your and your kiddo. Sounds like your on a good path of figuring it out. If strep is an issue, prophylactic PenVK is a very safe option. I cannot stress enough about checking for other bacterial or viral infections.......EBV(mono) and Mycoplasma and some others. Immune dysregulation and some chroic infections are a pain, but it is manageable with abx if needed and a whole host of other supplements. If you need some help or guidance and our experience of our journey, feel free to PM me. Link to comment Share on other sites More sharing options...
Vicki Posted September 9, 2014 Author Report Share Posted September 9, 2014 Is your doctor a homeopath? I have not gone that route as my son takes prophylactic antibiotics so I can't give any specific advice on that, however from what I understand if you do decide to try it you need to work with a homeopath who is very well versed in how to treat pandas. I think there are only a few doctors I who really know what they are doing and there are pretty specific protocols that they follow. Do some research and I am sure others on this board will chime in. You may want to start a new topic so you get the attention of others who have been successful with this. I just hate to see you waste time and money as it seems you have caught this early. It is great you are seeing positive results so soon and especially with amoxicillin. Many of us have found that amoxicillin just does not work at all for our children. I am glad your doctor will follow up with another culture to see if the strep is gone. 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? Link to comment Share on other sites More sharing options...
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