Topaz1968

Thanks for all the responses. I have taken it for a couple of years with no adverse reaction. I think this is part of the reason the doctor prescribed it. I know everyone can react differently, so hopefully, my son will be OK with it. I gave him 1/2 pill last night and he did sleep well. I plan on increasing it slowly to one whole pill each night. The doctor wants him to take 2 each day, but I am not sure I will do that. I want to see if it does help his tics and anxiety. I have to say, it has been a lifesaver for me when I need it. I think every medication has its downsides and I feel more comfortable now than I did before in my decision.

Sorry - it was supposed to be Klonopin. Was getting confused with all my research. He has tried Tenex and it was not helpful at all and made him very irritable. I spoke to my Pediatrician and he feels that the Clonazepem is safe and should only make him tired. I may introduce it slowly at night to see if it helps. I don't think I will ever go up to twice a day, I still feel nervous about that until I know how he will react to it. I am also on the same medication and it does make me tired, but works amazingly for my anxiety. I think a lot of my son's tics are anxiety related. I don't know - I hope I am not grasping at straws. He is also seeing a social worker for some therapy sessions and they really seem to be helping with some of his OCD. He is such a great kid, and I hate seeing him suffer like this, I just want him to have some relief.

Thanks so much - that makes me feel better. I have a call into my Pediatrician just to see what he says about it - I trust him immensely - so I hope he gives the thumbs up and that it helps my son.

I am at a loss as to what to do next for my son. He is 10 and his tics are muscle contractions mostly, and they hurt after a while. We have tried Tenex without any success. I suggested to the Nuero that maybe something for anxiety might be better. It runs in our family, and my son is very anxious. So he gave us a prescription for Clonazepem, which is actually what I take, when needed. I don't take it often, but when I do, it helps me a lot. But, I am so nervous to give it to my son, because I am very concerned about side effects, etc. I am going to call my Pediatrician today for a 2nd opinion on the meds. I just wanted to see if anyone else has had experience with this medication for a child. Thanks

Wow, thanks everyone for your wonderful replies. I am just finding it so hard trying to find the right balance of everything. It just seems like things keep changing, and I can't pinpoint why - the meds, the environment, I just don't know. Right now, his vocal tics are really bad. Luckily, they are barely noticeable unless you are close to him, but they have never been this bad or lasted this long. I am worried that it is the Tenex, but I still feel like I should give it a chance to work. I have an appointment with Dr. B next month and will ask him about a different ABX. He has been on a steroid a couple of times to clear up his sinuses, but that seems to be under control right now. He is on Zyrtek for his allergies which are working great, but is that interfering with his tics? I wish I knew. I think his anxiety stems from being overwhelmed. And yes, I do rush him a lot, because he has a big problem with his shoes in the morning, they have to be perfect. So, we have tried to get them on earlier so he has time to feel if they are OK. But, sometimes we just run out of time. His teacher is amazing, and I cannot stress that enough. I think that has helped immensely this year. The social worker is also great - another bonus. Also, my husband has been more involved, which in the past, he wasn't - he has a lot of his own problems. So, I was doing Everything myself. I still do most of it, but he is there more emotionally for my son, which I do think is good. His OCD is mostly fears - thunderstorms, bees, werewolves, being alone -you name it. He also has some problems with material things - if they break or get ruined or something happens - he has a connection with material things that is definitely something OCD. He also gets stuck on things that bother him and can't let them go. Or gets stuck on a favorite thing - such as Star Wars, or Harry Potter - now it is Super Mario. He does everything related to it. They are not really bad, and sometimes they are not very noticeable, he can be fine. But, when they are bad - they are bad. He sleeps with me every night because of his fears, and I know that is not a good thing. I am trying to find a good psychiatrist to help out. But, don't really know any in the area. Anyway, I hope the tics get better. Right now, his sadness seems to be at bay - not too bad. Thanks again

Thanks Leslie - I will see what happens, but I have a feeling it is not going to work out well. I will ask the doctor about Topamax as well. He can sometimes go for weeks without any real tics, and this is the longest they have lasted that I can remember.

Yes, I am not sure this is the right medication for him. I am really nervous that it is making things worse. He also has a few other side effects, that I think are from the Tenex. They are minor and I am not quite sure if it is the Tenex, but this is our 2nd try at this and I think I was right the first time to take him off of it. The fist time, I took him off because he started to get hives. I thought it was from the Tenex, but it ended up being something else. I am going to give it a month total and then if it is not working, I will call the doctor to take him off. I hate playing around with meds like this, but it is so hard to find the right fit for him.

I am not sure why my son's tics are worse now than they have been recently. The tics started again about 2 weeks ago. His usual cycle is that they start off slowly and then they come on full force for about 1-2 weeks. It is a very minor vocal tic and sometimes a shoulder shrug. He also squeezes his buttocks. Then, usually they come in "clusters", which is the only way I can really describe them. He will tic 4-5 times in succession and then won't tic for a while. He started Tenex about 1 1/2 weeks ago. He takes 1/2 in the am and 1 at night. I thought the tics were going away, but today they are horrible again. I know that Tenex is not a miracle and may take time to work, but I did not expect the tics to get worse. There may be other factors - but I want to find out if it is the Tenex - has anyone else had a similar problem?

My DS is 10 and was diagnosed with TS about 2 years ago, and then with PANDAS last summer. His tics were off and on, and were not a major problem, then he started to have intrusive thoughts last summer that really scared me. Come to find out his strep counts were off the charts. Before I found a PANDAS doctor, the Neurologist started him on Tenex. Once he started the antibiotic, things got better. I took him off the Tenex for a couple of reasons, but mostly, I was concerned about an allergy. Things were going really well up until about a month ago. He just had this major meltdown, nothing I have seen before. He was really down on himself, very depressed and full of anxiety. I thought the PANDAS was the cause so he went back on the antibiotic and worked with the social worker at school. He has been working with her and she is great. However, he is really feeling the pressures of being in 4th grade - between his peers and the work load. He has a 504 plan, which helps, but he is still frustrated. We are planning to meet with the school this month to talk about more strategies to help him. He is now back on Tenex - just started last week, for his tics. His tics were pretty bad this past week over vacation. He is still on the antibiotic as well. I knew that going back to school today after vacation would be a struggle, but he had the same kind of meltdown last night and a little bit this morning. He is extremely sensitive. I am not sure what to do next - he talks about running away, he says that nobody understands him, little things really set him off. I know it is a combo of anxiety and OCD. The Neuro told me that the Tenex is good for anxiety, but it seems to be having the opposite effect. However, I can't tell if the medication is causing this, or if it is just the Anxiety. I thought about starting him on anxiety meds, but not sure. He is the sweetest kid and it is killing me to see him so angry and sad. Please help with some suggestions, I don't know where to turn now. Thanks

I will try to make a long story short, but my son has TS and Pandas. He started getting hives and allergy attacks last summer which I believe ended up being exercise induced. Anyway, he started Tenex last summer for OCD and then I found out he had a very high strep count and he started being treated for Pandas with an antibiotic. Then, the hives started so I took him off both meds to see if that was the cause (as per doctor's suggestion) He did not start back on Tenex as his symptoms of OCD were under control, his tics were not that bad either. I recently started him on Zyrtek for the allergies and it was a miracle - no more hives or allergy symptoms. I was thrilled. However, when we went back to the Neuro last week, we decided to start him back on Tenex for his tics and anxiety - even though they were not very severe. It was my son's choice - he is 10 now and I feel like he should be involved in making choices for himself also. He does not want the tics anymore as they hurt sometimes. He squeezes his muscles and it can be painful. So, now he has been on Zyrtek for 2 weeks and started a small dosage of tenex a few days ago. His tics have gotten worse and I am not sure why. I know that he does go through periods of bad tics - usually during a growth spurt and times of excitement. We are home for school vacation this week so I can monitor him closely. My biggest question is - Has anyone experienced an increase in tics while taking Zyrtek? I am not sure if I should just wait it out and give the Tenex a chance to work. I know his tics usually go away after a couple of weeks, but I am so impatient!!! Any thoughts would be greatly appreciated Thanks

I saw Dr. B last night and he is starting my son on a steroid for the 2nd time to clear up a sinus infection which could be causing some of his recent symptoms - tics, OCD, etc. He did want to send him for blood work, but it was a nightmare last time I had to take my son, so he said we did not have to. We will treat is with the steroid and ABX and see what happens. Last time, my son's tics did get worse as well as some of his other symptoms, before they got better. I am hoping that does not happen this time, but we will see. I am picking the medicine up tomorrow. I hate this roller coaster ride!!! I am so frustrated with everything and my son is even more so - I feel horrible for him and hope that this helps him. I will let you know how he makes out with the steroid.

Thanks Kim - you were right about the sinuses. The doctor said my son has a sinus infection and wants to put him back on a steroid and antibiotic. I am hoping that works, but last time he was on the steroid, things got worse before they got better. I am going to have to prepare for that. He said that the other allergy symptoms are not related, but I am not so sure. My son has been really irritable the last few days, so I really hope we can get this under control. I will keep you posted Thanks again all.

Thanks for the replies. Kim - luckily, the allergies have not caused any type of respiratory problems. It does not seem to be any kind of asthma. The hives just appear sometimes out of the blue and he starts scratching, which makes it worse. The doctor did put him on the steroid to try and clear up his sinuses, however that was a while ago, he may decide to put him back on the steroid. Vicki - I thought about changing his allergy meds - someone told me that Zyrtek was really good, so I will mention that to the doctor also. LLM - I have not gone back for bloodwork yet, but I think I may have to. It was a nightmare when we took him last time. It was so traumatic for him, that I am not sure if I can ever get him back there. I also have a feeling that he will need to be tested for more allergy related problems anyway, so it may need to happen. He was on the ABX a couple of times since the first round. The last time was a few weeks ago when I thought he may have strep, but it wasn't. I wanted to play it safe. I will try that with his scalp, I thought it might be a tic as well, but not sure. Thanks for the info about the therapy. He does also have a lot of anxiety, so maybe he might need both. Luckily, he has a wonderful teacher and an amazing school social worker that have been a blessing this year. He is now on a 504 plan at school, which really helps if he is anxious or has a lot of tics. Thanks again all, I will keep you posted if we make it to the Dr. on Monday

My 9 year old son was diagnosed with TS about 2 years ago and then with Pandas about 8 months ago. He started a round of ABX and seemed to be doing well. But, his neurologist also started him on Tenex because of the sudden onset of OCD type symptoms. This is before I took him to the Pandas doctor. Anyway, it has been a roller coaster ride and lately, I just feel like there is more to his condition, and I am not sure where to turn next. I will try to break it down a bit. His symptoms before ABX (not including tics from TS) Severe fears of Thunderstorms Bad thoughts about knives Bad thoughts about hurting someone Scared of being alone Fits of rage and anger Most of these went away after being on the ABX for about 30 days. He had bloodwork done before starting and his Strep titers were very high and it was apparent that he had some sort of strep infection. He also has low antibodies (?) I think that is what the doctor said. His body has a hard time fighting strep if he gets it. I ended up taking him off the Tenex for a couple of reasons. The Pandas doctor did not think he had TS and probably did not need the Tenex and he started to get hives and other allergic reactions, so we were not sure if it was from the Tenex. I stopped the ABX and Tenex to see if his allergies got better and started him on Singulair and a Steroid for 10 days. His hives and allergies are still around. He seems to have exercise induced eurticaria (Sp) that causes him to get severe hives and his eyes swell. The school nurse almost gave him an epi-pen one time. But, Benadryl seems to help with these symptoms. Now, he has some new symptoms that I still think are OCD/TS related. But, some could also be allergy related. He may have had these all along, but they seem to have gotten worse lately. He has been clearing his throat a lot - but tells me it is mucus and he has been scratching his head because he says he has dandruff (which he does) but the itching is constant. One of his old tics has come back also - he squeezes his tush muscles. The other thing I noticed is that he has been more emotional. He has been crying a lot and thinks bad things are going to happen to inanimate objects like his stuffed animals. So, overall it has been a mess and nothing seems to be helping. Unfortunately because of our horrible weather lately I have had to cancel his last 2 appointments and we are supposed to go Monday night - but it is supposed to snow again. The doctor is about 40 minutes away. I did get the name of a therapist that specializes in CBT and I hope to get him in to see her soon. Sorry for the long post, but I just really need some advice as to what to do next. The Pandas doctor does not thing the allergies are related, but if has this Autoimmune disease, I just feel like somehow it is related. Deep down, I just know there is more to this and I want to figure it out so he can just feel better. He is so frustrated. Thanks

So much has happened since the last time I posted here - but wanted to catch up and have some serious questions. We saw Dr. B in CT and my DS (9 yrs old) was diagnosed with Pandas - very high strep count from blood work etc. He was diagnosed with TS about 2 years ago and was put on Tenex over the summer due to some OCD symptoms - this was before we went to Dr. B. After being on ABX and Tenex for about 1 month - he seemed to be doing better. Then, all of a sudden he started getting Hives and really bad allergies. Dr. B put him on Prednisolone (sp) which I know is a steroid of some kind to get rid of what was going on in his sinuses. I also took him of the Tenex to see if that was causing the hives. Have not told the Neurologist this yet, I weened him off slowly. Anyway, the hives have gotten much much better and the allergies are almost gone - not completely. He is going for some allergy testing next month. I had also taken him off the ABX to make sure that was not the cause. He is now back on the ABX - but not the Tenex. Now, over the last few days - his tics have gotten really bad. He is shrugging his shoulders and making a noise -this is a tic he had a long time ago. I just read that steroids can make the tics worse. I wish I knew this, as I don't think I would have put him on it. I am freaking out because I am not used to all these medications and now I don't know what is working, what is not working, what is making things worse or better. He has been off the steroid for about a week now and I am hoping the tics eventually lessen over time. This used to happen with the TS where his tics would come on full force and then suddenly disappear for a while. But Dr. B does not think it is TS - he is sticking to the Pandas Diagnosis. I am so confused, I don't know what to do next. I do not have the support of my husband as he is clueless to this whole thing and thinks nothing is seriously wrong. That is a whole other story. Anyway - I am lost and would love some advice. Thanks

Thanks for all your replies. I don't think it is the sun because it happens mostly when he is inside. It has happened at school and home, so I don't think it is environmental. I am not using a new detergent or soap, and he has not tried any new foods. It just appears randomly. The Benedryl helps, but now I am really curious as to what it is. I will update once we see the doctor tomorrow

I am so sorry you are going through this. I hope this is just a bump in the road and things get better for you. I know how hard it is to see your child think he is a freak. You always want them to be able to enjoy life. My heart goes out to you and your family.

I am not sure what is going on with my son lately, but he has been getting rashes and signs of allergies - watery eyes, runny nose, etc. It all started with a cold sore a couple weeks ago and then turned into what I thought was a cold. Then he has been getting these strange rashes and when he runs at school - he has been getting a sore throat and the runny eyes again. He is 9 and has been on Abx for almost 30 days. He has never had allergies before and now I am wondering if this is some how associated with the medication or Pandas or something like that. Luckily we are going to the doctor on Thursday and we will get some blood test results and I can talk to him about these latest symptoms. Has anyone experienced this at all? Thanks Rachel

I actually ended up changing my appointment since my son is sick. But I think it is better that I wait until after I see Dr. B anyway. This was just a follow up and I think it is better to wait. Thanks so much for the advice

My 9 year old son was diagnosed with TS over a year ago and we have been seeing a Neurologist. Recently, I brought him to Dr. B her in CT to look into Pandas and he does think he fits the criteria. We had blood work done and are awaiting the results when we go to see him again later this month. Here is my dilemma. We have an appt. with the Neurologist today. He started him on Tenex before I started looking into Pandas because my son started to show signs of OCD. Anyway, I don't think the Tenex is helping, but may want to keep him on it a bit longer. Do I tell the Neurologist that we are seeing Dr. B and are looking into Pandas, or should I wait until I know for sure what is going on? I had every intention of telling him, but now I am doubting myself. My son has been doing better, but not sure if it is from the Tenex or the ABX or if it is just a "down" cycle. Any thoughts? Thanks

I am sorry you are feeling this way - I know how you feel in a way. I do have friends and my son has friends, but not one really good friend (that lives close to me anyway). It is a lonely feeling when you see all the other kids playing and your child is playing alone or is not part of a group. I think sometimes we over think things and I try to step back now and then and let him be himself around his friends so they can learn his personality and decide on their own how to deal with it. I have told all the parents that he has TS and now may have OCD and/or Pandas. Only one of the parents I spoke with knows what Pandas is and thinks her son may also have it. That is my son's closest friend's mom. So, I am happy about that because she understands. I never would have know if I did not open up to her. I know it must be hard, but be as honest as possible with them and let them know what is going on. Step back for a minute and see what happens. Having this support group here helps and maybe you can find one locally. That is what I am also trying to do. Good luck and I hope things get better for you.

Thanks Vickie - I will start charting his ups and downs, that is a good idea. I definitely think there is some improvement, I am just so impatient and want changes over night Of course, I know that won't happen, but I am hoping that there are not any major set backs. I think as far as things go, I was worried about when school started and so far so good - so we will see what happens I guess.

OK - so it has been about 3 weeks that my son has been on Augmentin. He is also taking Tenex once a day, but the doctor had wanted to him to take it 2X a day, but I was worried about him being drowsy at school, so I stuck to the one a day. Anyway, he seems to be improving slightly. Not as many OCD bad thoughts. He used to have them a lot more, now he only gets them when he is angry at someone or something. For example, our neighbor's cat scratched him a while ago. He was so mad. He did not hurt the cat, but had bad thoughts of hurting him. He knows that he does not want to hurt him, and gets mad that he has the thoughts. I tell him that he knows he would never hurt anyone and he is just having the thoughts because the cat hurt him. This seems to be the trend of the bad thoughts. The outbursts are still there, again, when he gets frustrated. He came home from school the other day in a rage because he had a bad day. Not really school related, just physically not feeling well. Once he got it out - he was fine. So, they are more short-lived, but still there once in a while. The tics are still there. That is what the Tenex was supposed to help. I am not sure if it is because of the dose or if it is not working at all. We go to the neurologist in a couple of weeks and I will tell him that he is being treated for Pandas. I am not sure if he will be on board with this or not. I will talk to him about taking my son off the Tenex. We won't talk to the Pandas doctor until the end of Sept. So, I have no idea about his blood test results as of yet. I don't want to think about IVIG unless things get worse. I know I need to give the ABX more time, but how much time do you think I should give it? If things are improving slightly, do you think I am on the right track? I am going to set up a meeting with the school next week to discuss the help he will need there, so another hurdle I need to over come. Trying to get him a 504 plan and also some support as he is in 4th grade and will need it. Socially, he is also having problems. We merged with another school this year so none of his friends are in his class and he has not made any new friends yet. I am worried about this and will also discuss this with the school. Anyway, just wanted to give an update and see if anyone has any thoughts on his slow progress. thanks

Thanks to everyone for the great advice. I found out yesterday that he is going to have 25 kids in the class due to restructuring of our schools - so it is a mess. I am not happy and will hopefully be able to schedule a meeting right away. I will make sure to be prepared with all the info I need. Thanks again Rachel

OK, so my DS is starting 4th grade in a few days. I have been his advocate since pre-school, getting him services for speech, etc. I am also a teacher, so I know a little bit about 504 plans, but not much. Long story short, his diagnosis last year was for Tourette's which our Panda's doctor thinks may not be the case anymore, as we are looking into the fact it could be Pandas - my son just recently had blood work done, so we are still awaiting results. However, my son has most of the symptoms and has now been on Augmentin for about 3 weeks now. I fought last year to get him help, but the teacher said he showed no signs of tics, etc. in class and even though he has trouble with certain things, an IEP was not warranted, let alone a 504 plan. At the end of the year he rec'd a D in writing and a C in reading - I was not pleased and a little upset that this could have been avoided if he had gotten the help he needed. I now have a note from the neurologist stating he has Tourette's and should get a 504 plan. I do not have an official Pandas diagnosis yet, so I am not sure how to approach the school now. I know his incoming teacher is very nice, and I know the Principal very well. We are getting a new school Psychologist and Social worker due to restructuring in the school system, so I am kind of starting from scratch again. I want to schedule a meeting with the school as soon as possible, and have gotten some advice from other professionals, but I would love some feedback from others who have had to deal with the school and what I should tell them. Thanks