Missmom

We use vistaril which is an antihistamine like benedril this time of year because of seasonal allergies. It also relieves anxiety and helps my son fall asleep. When seasonal allergies are over, we switch to melatonin at .5 mg. lowest dose. Both of these have helped greatly.

Ok T Anna, thanks for clarifying. I just would not have wanted anyone to suffer any legal ramifications.

I am so happy for you and your family to finally get some relief. If my son were in such a bad place I would try almost anything as well. I just have to chime in to others who are considering this. I would be very careful about trying this type of thing unless your child is home bound, or homeschooled, etc.... The school my son attends does drug screenings I believe they are testing the entire high school this year. They are testing by hair folicle once then random tests throughout the year. Drugs can stay in hair for a long time I believe. My son would be expelled if he tested positive, not to mention embarrassed. If this is legal in your state or by prescription I would make sure to cover all of my bases just in case something like this would arise, or if your children are old enough for a summer job that may do drug testing as well. Please keep us updated though. Sounds very promising I just worry about other such consequences.

Thank you, I am in the middle of reading "talking back to OCD" right now. I got the e book on my I pad but wish I had ordered the paper book so I could write notes, highlight, turn down pages, etc... I will order dr. Chanskys book as well and will definitely get the paper copy this time. Maybe by the time I finish this book the other will arrive. I am open to all suggestions. The more I read, the more I can see that my son has been suffering with this for a while. Thanks again.

My son has also had the red ring appear from time to time, although not consistent. He says it is sore not itchy. I always assumed it was just from not wiping or drying correctly (moisture). I usually just put desitin diaper rash ointment and it got better. It has not bothered him in a while so I really have never given it another thought. I guess it could have been yeast as well but never treated for yeast and have not had any complaints.

I think general anesthesia is tolerated by most pandas kids, I am not sure about Lyme.. Others can chime in. I have read to be careful with laughing gas that you get at the dentist though, I am having trouble thinking of the name of it right now though.

Thanks, I knew I probably was not helping at all by doing some of the checks for him but I got so frustrated by watching him I did not know what else to do. I will get that book and I like your idea of having him spread it out throughout the evening. Hopefully the book along with some of these ideas will help. You are right some of these are normal, I check things throughout the day, but it seems like some are starting to turn into rituals and that is why I am concerned. I have not checked, but I am pretty sure we would have to travel to find a therapist who knows ERP. We live in a small southern town without those kinds of resources usually available. We travel to see our pandas doc about once every 6 months. I can't imagine traveling for therapy as well.

The lump on your arm, have they x-ray'd it? Have they ultrasounded it? I would think that would be the easiest thing to do. Just like women have a lump in the breast, they usually want a mammogram first. I would want to see it first before surgery would be discussed or considered.

If anyone can reccomend any books on helping treat OCD I would appreciate hearing from you. My ds will be 14 in a few weeks so not exactly dealing with a child. Here is a brief background. My son presented sudden onset tics with a strep infection several years ago. He had always presented with mild OCD but it was mild and did not interrupt any normal life. Looking back he probably had had a couple of pandas flairs when he was younger with strep infections but I did not recognize it until the tics started. I was fortunate enough to find great doctors who diagnosed pandas and started continuous antibiotic treatment. He greatly improved after that. Now that everything else is almost under control we are left with the anxiety, irrational thoughts, and OCD. He can function as normal during the day but at night before bed the real anxiety sets in. He has to check on the (important) things in his life such as phone, golf clubs, computer, etc.... He has to make sure everything is where it should be before he can sleep. Make sure he has not lost anything, This takes about 20 extra minutes. He also worries that he thinks out loud during the day and people are going to think he is weird. I have to reassure him he does not think out loud. Finally, then he can relax and fall asleep. His doctor has said if I feel this disruppts his life then to call her and she will prescribe a low dose Zoloft. I have not wanted to try this yet as I am afraid it could trigger even worse thoughts. We have also never consulted a therapist as I don't need all the extra expense that would incur. Even with insurance the co-pays and deductables can add up. I would like to try to help him myself before any of this escalates and becomes worse. If there are some books out there any of you can reccomend on how to help him I would appreciate your advice. I have asked him to let me "check" his things for him so he can get some sleep and he has agreed to let me do some of his "checks" for him. I am sure this is probably not the right way to go about helping him get past this but in the short term it helps him get to bed earlier. Before I try giving him meds or expensive therapy I would like some guidance on how to appropriately handle this. Thanks, I am headed to the bookstore this weekend.

I know it is heartbreaking to see her go through all of this. I have been fortunate to find great doctors. Our pediatrician thought I was crazy at first, but I begged and pleaded with him to run the lab work. He was certain that strep was not a factor when not one but two rapid tests were negative for strep and the throat was not red and no fever. Anyway a few days later he called and said wow! You were right, it was strep. Anyway, what I am trying to say is that your mom instincts are way more important than some doctors opinion. Do whatever you have to do to fight for your daughter. The help you will receive on this forum will be invaluable. Search for doctors in your area. If there is any way to get her a trial of abx that would help you to see if you notice any improvements. Take care and keep us posted.

Our kids are also in a smaller private catholic school. I feel that it is so worth the money. My daughter went from crying every day going to school to crying on the days she couldn't go to school. I will do whatever it takes to keep my kids there. Thank you for sharing an update.

Is she taking any meds or supplements? What labwork has been run. Many on this forum are running 23 and me to look for deficiencies. Glad she is improving but I know how hard it is not knowing if she will relapse. My son takes abx daily, but every time I try to stop giving them I am on edge wondering what will come next.

Jnjv0717, I think you should post your question under a separate topic. You can also check out the pinned threads and find lists of pandas friendly docs. Also pandasnetwork.org has resources available as well. Our treating doctor was listed on their site and I found her there. She is wonderful. You may have to travel a little bit but to find the right doctor it is well worth it.

Looking back now in retrospect the very first tic my son had was a throat clearing tic. It lasted a couple of weeks I thought it was sinus drainage or something. He was about 8 years old at the time as well. About a year later had a eye blinking tic, I remember he was sick at that time and took abx. I think that resolved it and I never really gave it a second thought. He was always a little OCD about hand washing and also went through a period of wearing only long sleeves. Even during a hot humid summer (we live in south Mississippi), I referred to it as the summer of long sleeves. It was just a little quwarky but never interfered with his life so we just let him be. He was always very intelligent and never had problems in school as a matter of fact, he always tried to be perfect and good as to not disappoint. He has also had sleep issues and worries about everything. He has trouble falling asleep. He had a lot of strep and sinus infections during this time but I was always very diligent about getting him to a doctor and always treated him right away with abx. His big episode hit when he was 11 years old in 6th grade. He woke up one day and could not stop nodding his head. He had not been feeling well and I took him in immediately. The pediatrician did not think it looked like strep but I had read an article about pandas I knew all of his symptoms fit. I begged the pedi to test him. He thought I was crazy but agreed. I had him do two rapid tests and both turned up negative. I then begged him to run the bloodwork. He really thought I was crazy but ran the labs just to shut me up. What do you know, he called me a few days later to say strep was positive. HA..... I was right. He agreed with pandas diagnosis but had never treated it before. He started my son on a month of abx and got him a referral to a neurologist that has been treating my son ever since. When talking to the doctors you really have to be persistant. I mean what does it hurt to run some labwork, or try some antibiotics. My son is now almost 14 and we are not out of the woods yet. He takes augmentin daily as a preventative. He also takes a vistaril at night to relieve anxiety and help him sleep. It is just a basic antihistamine about like Benadryl. We have not tried any SSRI yet and I am hesitant to do so. My son is a lot better, but still has flairs and had a lot of anxiety/worry/OCD... But all in all he is a good kid. He has A and B's. In school and has a group of friends and plays sports. His tics are mild unless he gets sick or exposed. He also gets very mad when his sister sings or hums as well. He does not like music and says songs get stuck in his head at night and it keeps him from sleeping. We dont get to listen to much music. Sleepig is a big issue for him, he won't spend the night with friends and I am sure they wonder why. He also gets mad when he is not in bed by ten o clock so he can't do things like school dances or church functions like lock-ins or late movies. I am hoping this will get better as he gets older. Our pediatric neurologist says that many of the children she treats with this outgrow pandas after puberty. She explained the strengthening of the blood brain barrier and gives us hope that at least some of the issues will get better soon. My son is almost 14 and although he has started to show signs of puberty, he is not there yet. I am probably one of the few parents saying "bring it on". Anyway, I noticed a lot of similarities in your story so I wanted to share ours with you. Please try to find a doctor who will go easy on the SSRI meds and rely more on a trial of antibiotics. Sometimes steroids can help as well, but again we have not tried them because they sometimes can exasperbate tics. Ugh.... Keep us posted and stay positive. You are on the right track.

Sounds like you are in England. Maybe others on this forum from England can offer you some advice about doctors who may be able to help. I really hope you find help. Glad the medicine you are on has given you some relief, but hope you can find something similar with less side effects.

Ok, so it has been a long time, but anything is possible as far as treatment. Are your tics chronic, or do they come and go? Do you remember any period in your life when you were tic free, and for how long? Do your tics get worse when you are sick or immediately after an illness? Do you feel better when taking antibiotics or any type of steroids for illness or anything? I think a everybody has an inner voice telling them what goes on within each of us. If you have doubts about your diagnosis and you feel like there is more to the puzzle, then by all means you should find help. I don't understand why any doctors refuse to run simple lab tests. You may need to seek the help of more than one doctor because they may just content with labeling this touretts and then they are done. Although touretts is just another name for chronic tics. This gives you no help what so ever. I am sure you seek to find out why you have tics and what can be done about it. Several pandas experts have stated that they believe touretts is just undiagnosed and untreated pandas/pans. Do you have any OCD or anxiety? The symptoms of pandas and touretts overlap so much that I think they have to be connected although not all pandas children have tics a lot of children do. What type of medications or supplements have you tried? If I were you I would try to make a detailed timeline of what you can remember. What meds have worked, and which ones made things worse. Have you had any change in tics or symptoms, etc... I would consolidate all of this info and gain as much knowledge of pandas as you can and go to your doctors and request help. I just hope you find the answers you need and hopefully some help. Also, try to remember if you have ever had a tick bite. Consider Lyme.

I am trying to figure why only in california. Wonder if permanent damage has already been done or if they could reverse this with something like ivig or pex. Would love to hear from the parents about this. I bet we would get a much different story than what we are hearing about in the news.

I figured it had to be autoimmune. Now that this is receiving national press maybe they will catch someone's attention who can help.

Just saw the news about the children in California experiencing polio type symptoms following respiratory illness. It may not be related to pans/pandas but those poor parents just like us are searching for answers. Would love to hear the pandas doctors opinion on all of this. They are saying it is not polio and all the children were vaccinated against polio but it is neurological in nature. I pray for those families.

Because of the vomiting and diarreah I would bet this is a stomach virus. Try giving lots of fluids and waiting 24 hours.

Sinus infections are the main things that break through my sons augmentin. He had sinus infection just over a week ago. We got a z PAC from local clinic. All seems ok now. Back on the augmentin we start this weekend. Sorry you are going through all of this. Let s know if the fever gets better. If not then I would def. call your pedi back and beg for something else.

I would be on my way to your pedi. Is she taking any antibiotics at all either prophylactic or treatment dose? I always take my son to the clinic immediately with fever. Don't want to take any chances. I don't go running to our pandas doc unless it gets bad but an urgent care clinic will usually give me a ten day course of a different abx. My son takes augmentin so if he has a fever it is usually something that has broken through the augmentin.

Can you take Zithromax? I think if it were me I would ask for that or another antibiotic. At least your numbers are coming down, although still very high.

If it is ts you are worrying about then try to remember your child before this nightmare began. I think one of the major differences is sudden onset after illness. Was there a sudden onset of vocal and motor tics? Was your child ill or did she have vaccines prior to onset? Also the fact that she is at 85% after treating with antibiotics is also a sign that leans toward pandas not ts. I know it is not easy. I lost over fifteen pounds in a month when my son was at his worst. It is not healthy. I was also consumed with worry and if he gets bad again I may spiral down again as well. I definitely know the feeling. It is scary sending them to school not knowing what illness is going around. Our pandas doctor is wonderful, she always makes me feel better. She says that a lot of her pandas kids outgrow this at puberty as the bbb strenghtens. This gives me hope that this won't last forever. I just pray every night for healing. This also makes me feel better. I hope you can find some peace soon. A glass of wine before bed has also taken the edge off for me as well.

I just want to say, maybe tell the urgent care docs that because rapids are not that accurate and throat swabs can also not get enough bacteria, that you request them to run streptozymem ASO and anti DNase bloodwork. Our pedi did not believe what my son had was pandas until he ran the bloodwork. He had never treated pandas before, but after seeing my sons tics which started overnight, and running the bloodwork he admitted it was pandas. He then sought out advice from other doctors on how to treat this until we were able to get into a specialists office. The urgent care docs will sometimes be more willing to run the labs because they are just billing you for services at the time and don't really have to continue with treatment. This might get you a month or two of abx until you get into a specialists office. Just a thought.