michele

Also it is important to note not all kids recover completely with antibiotics. I have always seen antibiotics as a protection against strep not as a treatment for the symptoms. I know not everyone agrees with me on this. However alot of the newbies on here are going with one or two episodes improved on anibiotics not the ten plus episodes we have gone through. The symptoms wax and wane and improve with time. I am trying to say maybe the antibiotics are helping but not curing the episode and it is more about the symptoms are saw toothed. We have definately traced this saw toothed pattern over and over again. I have never seen my son recover as Sammy did but maybe that is due to the fact he was never on more then 300 mg daily of an antibiotic after treatment for the strep. I don't want to be negative but it is the reality we have faced. He is never gotten completely better just periods of improvement unil the next exacerbation. I don't want the public to get the idea that kids will be 100% if you get them on daily antibiotics. If that was the case then someone would have published that study by now.

Sorry for the confusion. Yes he was worse after Latimer maybe because of the steroids, then the transition to school. He was having rages, tics and compulsions and lots of anxiety. The rages continued through the summer and until we added risperdal and the tenex and now prozac to his meds. We started with a new psychiatrist in late Aug. His attention has always been short at school, he loses focus and needs alot of checking on for directions. Now he is doing better in all areas. Moods, attention, school work and rages. Now he still has anxiety and goes on his toes, or cracks his fingers, and has a little sniffing tic but he is behaving. I mean not perfect, he still argues some at home and gets mad and overreacts but not to the degree he did before. Our house is much more calm. I just talked to the school today and they see no issues with him at all. He gets along well, is well liked, nothing to indicate an issue. She said the other spectrum kids they work with have behavior issues at school, he has none. Of course he always has held it together there and lost it at home. He is no longer having temper tantrums at home. We did behavior therapy and rewards for months and nothing really worked. It has to be the meds. Or if he was having an episode this summer after he was sick in June and it took till now for the residual to go away. michele, you must forgive me, I want to get your story right in my head. I was under the impression things were not too good even after your visit with Dr. Latimer? or is that about issues other than attention? could you clarify that? these meds help his attention and you say he is doing very well in that area, are the ragey behaviors better too, or is that a separate issue? was it that he just did poorly on the pred? sorry, I just like to understand. great that he's doing well then on these meds, I know you've tried many. Faith

Kids with tics are usually given non traditional meds like clonidine or tenex (BP meds) for attention/hyperactivity) issues. Also the neurologist said that the abilify or risperdal can improve their attention. My son is so focused now to do his homework it is amazing. His grades are great and he is following directions and doing much more independently. He no longer fights to do homework or go to tutoring. I am telling you I have a changed boy! Now if we can only keep it this way!

My son got worse before he settled down onthe steroids. We did a 3 week taper 30, 20 10, mg. He was throwing tables and so mean and agressive and having encopresis on top of it. As for he OCD he did get stuck on ideas. He was just a pain for about a month. The he started to settle down towards he end Day 20 maybe. He never got better that we saw a dramatic change. Dr. Latimer's take on his is because his anxiety/OCD is so high that he just has to have that addressed with medication like prozac or clonidine. Sorry for your experience. I know my son was terrible for some time during and after he steroids. I would say he had trouble from July-Nov. I don't know if this was from a PANDAS episode from an illness he had in June, meds we were on tha reacted opposite on him (Abilify, celexa and clonidine), stress from school starting or summer transitioning. He is finally calming down bu we have added prozac and I am giving him 500 mg of amoxcillin now since my daughters and he had a virus.

Every stimulant we have used has increased the behaviors we were trying to eliminate. We tried Adderall XR and Concerta and Strattera. None of them helped. Even celexa and zoloft made him worse and it is supposed to help with anxiety. Yes his tics did increase on some like the concerta I think. Yes his anxiety was worse on some like the celexa and klonipin. He was more hyper on the zoloft and adderall xr. He got diarrhea and encopresis on the strattera. The only meds that have helped are prozac and abilify and risperdal and clonidine. We had to stop abilify because it stopped working a 15 mg. though. Dr. T Murphy (PANDAS researcher and child psychiatrist suggested Ritalin, and clonidine and tenex for PANDAS/tourettes kids. However she never prescribed them since we were out of state. We go to a child psychiatrist in our area. Dr. Latimer suggested Clonidine patch and prozac. The prozac 5 mg and tenex 2 mg and risperdal 2 mg combination are helping with his concentration and moods for now. He is finally not arguing and yelling all the time. The clonidine .1 mg in half at night helps at bedtime. He is like a different kid and it is about time we can enjoy him again. He even notices the difference. He still needs work on his communication and social skills but we are able to help him now since he is not so angry and impulsive. Email me PM if you have any questions. I have been working on these meds for several years now and combining them for the past year. It is a full time job! Michele

Falling apart, Did you try the steroid burst and how did it go if you did? I have to say we have just added Prozac to his Risperdal and my son is finally settling down for the first time in awhile. The steroids never did improve him much. We were definately PANDAS in the beginning with the waxing and waning of tics and behaviors wih strep and fevers, but now I wonder if his PANDAS has progressed into a mood disorder or aspergers. My son also has opposite reactions to medications. Last month we tried klonipin which is like vallium and he was more hyper and mean. All stimulants made him worse. He has been angry and having meltdowns for sometime. Also he is hyper and has trouble focusing. The prozac and risperdal are really helping with both! I am thinking it is going to be awfully hard to get rid of this for good after 7 yrs on and off and things have only stayed worse with time. Antibiotics we have been on never really improved anything either longterm. The PANDAS adults I have spoken with on web blogs never outgrew it completely. Tha is why Sammy's recovery is such a mystery to me. I do wonder about the schizophrenia or mood disorder connection and if research has been done longterm on the likelihood of them with PANDAS. Good topic for discussion. Michele

Beth is so kind. She has emailed me many times just out of curiosity of how we are doing. I am glad you have found your way here. There are so many smart, compassionate people here who are helping support one another. When I saw you on Inside Edition for the first time I have to admit I was screaming into the TV that looks like a tic/compulsion. This whole forum can be of help to you, even the TS forum, if you find it is PANDAS or Tourettes or just tics. I pray your beautiful and composed daughter can find some relief soon. It has been a very busy time for you all. Ours came on overnight like your daughter's but with blinking and finger chorea moevements and strep throat. His fingers did move in his sleep also. It has taken us 7 yrs to find information. You have made your way quickly. It seems you have been set up with some of the best researchers/Dr's. Please keep us posted of your progress with them. My son's tics have waxed and waned over time and do change and are viral related too. We have found medications seem to help reduce the tics and behaviors. His is also mood related and I didn't hear you mention behaviors. However the compulsions can really set them off when they can't be met. Just wanted to say hi, and welcome. Sorry you are having to go down this path. You are not alone. Michele

This is heart wrenching. How many of us feel like Dr's and schools and people think we are making this up? Also I read about conversion disorder last night in the Girl who can't stop sneezing comments on ABC. Do people really think we are making our kids sick? I feel sick over this possibility. http://www.minddisorders.com/Br-Del/Conversion-disorder.html http://www.myfoxla.com/dpp/health/medical_...ctives_20091112

Is there a link to the follow up where she talks possible PANDAS? Dr. Snyderman did have a serious change of heart here. Before she laughed about PANDAS and casted a doubt that it existed now she is suggesting a connection? I know I sent quite a few letters to her and the show about Sammy's interview and how she threw parents under the bus with her casting a doubt when we already are having trouble getting Dr's to help. Maybe everyone's comments caused her to look it up and learn a little about it. Sometimes she seems so detached to these stories. Great they are putting the word about PANDAS out there! Michele Well said!!

Gilbert is the one tainting OH Dr's on the PANDAS. He is the naysayer. I have tried to email him and talk to him over the phone and get a perspective on how he would treat my son. He would never say. Ask Vickie. She saw him. He has a research lab in Cinnci that is used for tic studies. Now every neuro in OH takes his opinion on PANDAS. It makes me ill. In the beginning I thought he helped Sweedo's and Murphy's studies. Now it seems he has switched to Kurlan's side on the PANDAS. Michele HI Buster My md saw this study too. This is why he haulted danny 2nd IVIG!!!But one good thing is he saw a difference from the1st so he knows it works Melanie

Use your gut instinct. They told me my son couldn't have strep at 1 yr old and he did. They didn't want to swab him but I insisted cause his sister had strep and he was having high fevers, and it was positive. He was crying and irritable, fussy eating, eyes blinking, fingers twitching like a piano playing chorea, hard to comfort, and did it in his sleep too. It was awful. We did EEG and CAT scan and all were fine. Ran his strep titers and they were 500's. So after a repeat reaction wih fevers and symptoms he then went into ear infections and had the same pattern. This waxing and waning was the start of PANDAS. Oh how I wish I would have kept him on antibiotics. They said wait and see. 7 yrs later they are still waiting...and my son is changed. Now he has problems that maybe could have been prevented. Tics, moods and compulsions that stay all the time. Get to urgent care and research to find a PANDAS Dr. in your area. This stuff does not improve on its own with time. I was wanting to believe when he was better in between it was gone, however it now is here to stay and I don't know how to reverse it. The damage is per We just have to use meds now to try and mask the symptoms and even they don't really work. You still have time. I'm thinking of you. Please keep us informed on what you find out. Michele

Andrew did not react well to klonipin. We stopped it after a few days of angry hyperness. The Dr. now started him on prozac 5 mg with the tenex and risperdal. It takes longer to work then klonipin but maybe it will help the anxiety and ADD. Let's hope. I did give him amoxicillin 550 mg. Possibly that may help with the recent exposure to strep in the classroom. I will have to talk to Dr. about augmentin. Michele M' post='44041'] Michele...are your kids with sinus infections on abs? Will your doc give you augmentin (if you can't get Azith)?

Yesterday he took the klonipin with risperdal. He was so bad. I mean crazy bad! The Dr. didn't say to taper the tenex so I wonder if that had anything to do with moodiness. He was angry, argumentitive and doing bad things like trying to hit all of us. I took everyone to the ped to have heir throats swabbed. She said it was not strep just sinus infections in the girls. All I can guess is he came into contact with strep or being around all this illness has brought on another episode. I hate this not knowing what to do. He never has a typical reaction to medicines either. Klonipin should make him tired but he was wired and hyper all afternoon. I need a med to slow him down so he can relax. He is anxious and ADHD. Any suggestions? She put the girls on amoxcillin. I guess I could give it to Andrew. He is not on an antibioic now. I wish I could get some Azith. Anyone know where to get it? No, we finished a 14 day course a week or so ago and are now back on zith prophylaxis.

Last week around Thurs. he started having ants in his pants movements and he kept picking at his bottom and was very hyper and agitated. All weekend he was difficult even soiling himself again. My mom and I said we wondered if he was exposed to strep or it was just from sickness in our house. Yesterday Andrew told me his seat partner has strep and was out since last week on Thurs. Bingo! I am going to give him Omnicef today again. He has never complained of feeling ill. He is the only one in our house who has stayed well. Go figure? Peg, Are you using Augmentin now? But, I think the problem is that with PANDAS, its not so much "chemical imbalance" as it is instability...by that I mean, you can try to get the balance right, then along come the activating antibodies and the whole thing is thrown into chaos...even the imbalance isn't a stable one, so you'd need something that monitors the balance of all the neurotransmitters and adjusts all of them as needed- that's a pretty tall order! I've been, out of sheer desperation and pressure from school officials, looking for that magic pill. Tried lots of things...nothing seems to work better than a good dose of abx! Even with the diazepam...sometimes it doesn't help. Sunday and Monday of this week were very bad, and the diazepam really didn't help.

Klonopin is in a group of drugs called benzodiazepines (ben-zoe-dye-AZE-eh-peens). Clonazepam affects chemicals in the brain that may become unbalanced and cause anxiety. We also take clonidine. Iy is a blood pressure med used for sleep and tic reduction. The Dr. compared klonipin to valium. I am so frustrated because there has to be meds out there that help these kids when antibiotics aren't enough. More needs researched and pubished on which meds work best for anxiety and ADD and anger with PANDAS kids.

Anyone here ever use klonipin for PANDAS OCD? Went to the Dr. yesterday and Andrew is still having alot of anxiety. She wants to take him off Tenex and try Klonipin. He would also continue Risperdal for the anger and moods and clonidine at bedtime for the sleep. Any ideas on it? It seems the psychiatrist have not a clue and it is just trial and error. Has anyone found anything that helps the anxiety and compulsions? His has already kicked up because of the holidays and he perseverates on Christmas.

We were on Abilify and celexa and clonidine when we took ours. I already sent the numbers.

My son won't comb his hair or brush his teeth without my forcing the issue. He has lots of sensory issues.

Here is the issue. 11 visits in 9 months. We are in OH. Only two can travel and I have 3 other kids, one is home with me daily because she is 2. We can't change his meds in 9 weeks which has not been the case recently. He needs them adjusted again and we can't start NIMH until Dec. now because of the last change. I guess I could just wait and not adjust them again (We see the psych again Mon. )but his anxiety is way up. Butt picking, moving constantly, toileting often, really hyper and loud, smelling and licking, up on his curled toes, wanting to shower often with all the light on, cussing and getting angry easily. I am so torn. Plus I have to get the local psych to agree to it in writing so she would be responsible in his distance care from NIMH. You don't know if you get the placebo for 12 weeks. So many factors. Plus how does it affect kids mentally long term to be a guinea pig? How many here would do it? I am guessing - but maybe because of the lack of response to the Prednisone? We saw (as an example) a dramatic decrease in OCD and anxiety on Pred. I really don't know if this test is definitive or not - but I usually hear about this as a part of the clinical picture. Maybe also due to the fact that Pred increased the anxiety for your son (which would be a more normal response). If a child has an increase of anxiety related behavior on Prednisone, then perhaps that starts to build a different picture. Maybe start a new thread that asks about "did your child's symptoms reduce on Prednisone" and see if anyone has a firm PANDAS diagnosis, and also a bad response to Pred instead of a positive one? Good luck with all this - it sounds like a real puzzle. I would also call NIMH & ask if you can speak to Dr. Grant - I have heard from others that he is pretty accessible. I agree--the NIH route would most likely give your child a thorough review of just about everything and Dr Grant is very familiar with PANDAS research, worked with Swedo, etc. You may have contact with Swedo as well once you were "in". If the study was suggested and you have a doctor willing to recommend to get you in it may be a real help. There would no doubt be a team available, etc. NIH is for extreme cases that need help--because of the expertise it offers--and free right?

No she never brought up IVIG after the steroids. My son got really agitated on the steroids. Did that happen to anyone else. But before the steroids he was already being very difficult mood wise. During that trip to DC he was so terrible. He hrew his shoes in the Memorial fountain and screamed and refused to walk and had to be carried aroung DC. He was having licking and smelling tics and tantrums. However during and after the steroids he got even more angry. Throwing things and kicking things. I could follow up with her and request she try the IVIG. She really wanted him in the study for Dr. Grant to really check him over and get to the bottom of the anxiety. However all our PANDAS kids have anxiety so I am not sure why Andrew's was different? Has anyone here done the OCD study with Dr. Grant?

OMG I forgot about that. A mom of two Aspergers girls who were having tantrums had their thyroids checked and they were both malfunctioning. Her Dr. treats PANDAS and spectrum issues. She doesn' take insurance and is cash only. Dr. Nevada Reed at Kidslink Twinsburg OH. She is a neurologist. If I ever get him a medical card, or off this ppo( they pay 0 out of network), I want to see her for Andrew. She is supposed to be the best. Some of her patients were in the Sweedo study. She is expensive and we are low on extra money after all these Dr's and meds. http://www.kidslinkohio.com/ http://www.kidslinkohio.com/family/reed.shtml

She felt anxiety was the main issue for him. I am getting worn out on Dr's. New psychiatrist this month, new psychologist this week. Too many opinions complicates things. Risperdal is improving rage. Tenex is not doing much yet. Still seeing vocal and motor tics and compulsions. Maybe the dose needs adjusted. We go back next week. He has started cussing which is wonderful! He even slips in the f word in. He does it in the right context (anger)so I don' know if that is a tic or trying to tick me off?

Worried Dad How did you get the Dr's to prescribe the large dose of antibiotics? Was it DR. K or the DAN! who wrote the script? Was it because the Sammy story that they did that high dose? Is yours the 2000 mg a day? I am so happy for your progress. Your son has had the extreme OCD like Sammmy's hasn't he? How are his tics? Keeping our fingers crossed for you guys. My son always has had a raspy voice. Dr. Murphy noticed it in Florida and suggested speech? He has never qualified for speech.

She did a phone call follow up and just suggested anxiety meds like prozac or a clonidine patch. then suggested we do an OCD study at NIMH for rizuole. Does his mean she thinks some kids just do better on meds? She seemed to think because of the family history of anxiety and depression he would do good because his dad does with prozac. We have no other follow up appointments with her. My husband was like why did we spend the money to come here I thought you said she was going to do something? I responded with the steroid burst was something we couldn't get elsewhere. But now what? We are back to meds and will this be forever?

I was curious did Dr. Latimer order the IVIG with a CaM score of 124? What else did she try before ordering it? Did she order the burst? My son scored 129 (low PANDAS range)and had OCD and tics and moods and anxiety and she ordered the steroids but that was all. How did she determine how to treat your child? Did you have to convince her to go for IVIG or was it her suggestion? How many times did you see her prior to IVIG? I was left hanging after our appointment and the burst. I wonder if my son would respond well to IVIG. He did get angry on the steroids and irritable. She never sent the report yet. I am left to rely on psychiatrists who will treat the symptoms with Risperdal and Tenex. I wonder if I should schedule a six month follow up? We are six hours from her. Michele