momaine

Melanie, Hugs to you. Sorry you guys are having such a difficult day. Today with my dd it has been like a regular day that includes Advil. Advil makes life bearable most days. Her tics have not worsened since starting the prednisone. Her vocal tics have been gone since a few days after starting Zith. She still has facial motor tics but they have not worsened. I'm not seeing a noticable difference with the Prednisone today though she's down to a very low dose. She had 4 mg before breakfast and 4mg with her lunch. No more till bedtime then only another 4 mg. My dd has company today and that always makes things easier. Though last night we had company for the night and a good thing came of that. Our company is my dd's friend and her mom. the girls usually sleep upstairs but last night the friend and her mom both fell asleep on our huge couch while they were all watching a movie. I had already gone to bed. When the friend didn't go upstairs for the night, my dd went to her own room and went to sleep alone. She has not slept in her own room without me laying with her while she goes to sleep (without a friend) since summer time. I was shocked to find that out this moring. Pleasantly surprised. Angela

Reassurance questions are my dd's biggest OCD hurtle and the biggest hardship on our family. They drive me INSANE becasue it drags me into her rituals. During an exacerbation however, she seems to have no control over it and though we went to therapy and learned ERP tactics they just do not work with her when she was really struggling. She is overwhelmed with those thoughts and cannot move forward even though she knows it is driving me crazy and even though she wants nothing more than to please me. That said, sometimes I just get so overwhelmed myself that I need to take a break. Sometimes I just have to remove myself from the situation and leave my husband to deal with it. She will melt down in a big way, but then she does better for a time because we did not reinforce it. It is not someting that I think is good for her though becasue she feels totally left to deal with the wolves on her own. She feels abandoned and neglected and left to struggle on her own. She's on antibiotics and things are improving slowly. The need to ask is less frequent and the intensity is down. Other OCD issues have faded away and others have become less intense. I keep trying to focus on the positive but its hard when overwhelmed with all the questions sometimes. I know it is not her fault and she does not want to ask them and she knows they don't even make sense, yet she cannot stop herself. It is so sad. I try to keep all those things in mind so I dont' take out my frustration on her. It is hard though.

Melanie, Can you remind me what dose he is on? My dd is on day 5 as well. She was on the tapering dose that is given spread throughout the day. Day one was fantastic. Best day in months. It was the only day that she had 8mg at once in the morning. Then I stopped giving Advil at the same time and the dose decreased so that she never got more than 4mg except at bedtime and the results were not quite so good. Definitely noticed things worsened without the Advil and I added it back in on day 3. After that it was not obvious that anything was different than with just the Advil. =( But that first day it was fantastic. She spent a quiet morning doing crosswords and Sudoku's while I painted the bathroom. She even told me she felt really good. This does not happen easily becasue even when she seems to have a good day to me, she still struggling in some way. So, when I ask her how she's doing, she almost always says, BAD. But that day, she said something like...really good. Dd's dose was 24mg the first day, spread out throughout the day. The pills were 4mg pills and each day it decreased by one. I'm thinking that a higher dose, or one given all at once in the morning would make a difference for her. I need to discuss it with her doctor and see where he wants to go from here. Angela

Hi, Pandas does not ALWAYS come on over night. Sometimes, in some cases, it begins like with your dd, it begins with either mild tics or ocd and it worsens over time, possibly due to re-exposure to strep. (which she does not neccesarily have to have been diagnosed with, strep can be in the throat, gentials, skin, gut, etc.) Often with PANDAS there is a problem with changes in the frequency of urination. (more frequent, a feeling like the bladder is not empty) If I were you, I would not dismiss PANDAS yet. Read on this forum, esp. the posts by Buster and Dr. Trifiletti. Before starting an SSRI, you could see if your doctor would be willing to read some information on PANDAS and try a month or two of antibiotics (specifically Augmentin XR or Azithromycin....tell us your dd's weight to compare the doses that other kids are on) to see if she responds to them. Good luck. Angela

My nephew has Crohn's Disease and over the years he was on prednisone for long periods of time. (between ages 12 and 20) They just could not get him off it and eventually he had to have a colostomy. His growth was behind but at times when he went off it, he would have growth spurts and though he is not as tall as his dad, he isn't over short either. I'd wager to say he was on it more than he was off it during those 8 years. Our update. We're on day 3 of prednisone with my dd. Wednesday was the first day. She's on a tapering dose. (first day 6 4mg pills over the course of the day then each day one less pill) Now my dd is one of those kids that Advil works wonders for. But I read the caution with the prednisone and decided to skip the Advil while she was taking Prednisone becasue I figured it would take its place. I was wrong. The first day, while she still had the good effects from Advil still in her, she had a FANTASTIC day. Best day in months. We were home alone, just she and I and I painted the bathroom while she filled her morning with Sudoku and crossword puzzles. Great mood. She even told me she felt good, which doesn't happen easily even when she seems improved to me. Second day, (still no Advil) not such a good day. Not terrible either, like before we started Advil and began antibiotics, but not great by any means. Last night, after that day, I decided to add the Advil back in and she fell asleep in front of the TV fairly easily. (that's a good thing for us) Today I still gave her Advil and she's having a pretty good day so far. (this is day three but the prednisone dose is not as high as the first day)--now down to 1 pill (4mg) 4 times per day and only had one dose so far) Not as good as the first day, but definitely better than yesterday without Advil. I wrote to Dr. T about it and he said the Advil and the steroids work in different ways and together it might just be the ticket for dd. We'll see where it gets us for now. Angela

Can you print out the information that is on this site that states that titers are not always high in these kids and give it to her? Can you pay to have her consult with one of the specialists? When I let my dr. know that I was willing to pay for her to consult, it seemed like she really knew I was serious. I asked her point blank how far she was willing to go to help my dd based on what she knew so that I could line up someone else if needed. She was willing to help but then I still got scared and went to Dr. Trifiletti and I am SO glad to have him on board. Angela

My dd didn't have tics until 3 years after developing ocd. Just figured out it was Pandas a couple months ago.

I discovered Advil helped my dd's symptoms quite by accident. I had given it to her for a headache. She had her best day in weeks. skipped a day. horrible day. added it the next day...great day. it would last about 22-23 hours for her then things would fall apart. Initially I gave only one a day until my doctor told us she could have up to 12. Then I realized that two wouldn't hurt her, likely, and she's miss that portion of time where she fell apart so badly if I gave her one in the morning and evening. This is the first day in many weeks I did not give her one this morning and that is because we started a steroid burst this morning. Two steroid pills into her and she's had her best morning in a long time. I definitely think inflamation is her problem. Angela

My dd started antibiotics in Nov and though we are not out of the woods yet we have many small things to celebrate. Her ocd touches every part of her life. Sometimes I don't realize a behavior is gone until she has a bit of a setback and the behavior returns. (most recently a cold caused a setback) she is able to get into and out of the car without much difficulty. There used to be days she sat in it and cried or couldn't stop openeding and closing the door. She is able to walk more easily without retracing steps and she gets up the steps to the house in just moments now....used to take 20 minutes at times with raging and crying. She uses the bathroom independently and doesn't leave the floor soaked anymore from washing and drying repeatedly. She is able to sleep at night, albeit on the couch, but she goes to sleep in half an hour without rages and getting onto and off the couch over and over. (most nights) That's a big one, sleep is so important. She's begun to talk about sleeping in her own bed but is not quite ready. She can have sleep ovesr and sleep at other kids houses without melting down at any time during the visit. She dresses in just a few minutes rather than putting it off all day long and raging and crying while she dresses. She chooses to shower every few days and though she still needs help with the shampoo and conditioner, she gets it done and does it of her own accord. She's brushing her teeth of her own accord once a day. (used to go days without brushing and when she did it caused GREAT anxiety) Now she's done in a minute or two. It still causes some discomfort with the need to repeat, but not bad. She chose to sign up for skating lessons and has gone twice. She has gotten out of the house on time and enjoyed the class. She seems to think more clearly. Less fog. Fewer "what?" with a look of complete confusion on her face. Is playing card games without losing her attention span so easily. She is less angry and rages only once in a while. The rages are MUCH shorter lived and followed by an appology for her behavior. She still struggles each day with reassurance questions and some other difficulties...I need to watch her eat and swallow to make sure she does it "normally." Still has facial tic, though vocal tic seems to be gone. She begins a 5 day steroid burst tomorrow. I'm nervous and hopeful. Angela

Michael, Just got around the reading your post. Your family is in my thoughts and prayers. There have been days when I felt we might end up in yours shoes. To just say it out loud once was painful, I cannot imagine your pain. Glad to read Dr. T is on board and I hope you get the help your son needs. Angela

Where are you located and maybe someone will know a doctor in your area that can help. Angela

Alex, so does that mean that your son was vaccinated against pneumonia and still had low antibodies present? I've never heard of a pneumonia vaccine. Is that a normal childhood vaccine? Also, was wondering if you ever saw Dr. T. I thought you had planned to go at the end of Nov. Did you see a different doctor instead? Or more than one? Angela

Alex, Thanks for the update. I hope this is the key for your son. Can you explain what pneumococcal titers are? Angela

My dd (92 lbs and 13 years old) is on 500mg of Azihtromycin as well as 2000mg of Augmentin XR. I got our family doctor to try the "Saving Sammy" dose of Augmentin and when we visited Dr. trifiletti in NJ in mid December, he added the Zith. It is a broader spectrum antibiotic than Augmentin and it works in a different way. I'm not sure how long she will be on it. Good luck figuring things out for your dd. Angela

How's that working out for her? Since adding the Zith, she continued to improve until she got a cold (which was also during her period which is usually more difficult anyway) Things never got as bad as they were before the antibiotics though. Things are improving again now that the cold is almost gone and I'm hopful that they will continue to improve. The vocal tics are VERY seldom now. The facial motor tic is still around some. The ocd is improving with the need to ask reassurance questions spacing back out more. Yesterday we had several two hour periods with no questions. Other things are still visible, like some difficulty walking/dressing without repeating, but not that intense...used to cause rages now causes frustration for a minute or so. During the first few days of the cold it was very difficult. I hope she stays healthy the rest of the winter. Angela

My 92 lb dd is on 500mg of Zith per day as well as 2000mg of Augmentin XR per day. Angela

Our insurance covers it but at the higher non-prefered rate of $60 per month. Normally we pay $15 for generic and $30 for brand. Angela

My daughter has complained of stomach aches far less since beginning the antibiotics. Angela

Yes. Right now my dd has a cold (and her period) and things have deteriorated for a few days. The first day of the cold was also the first day of her period and that was the worst. Yesterday and today are slightly better, but still not good. Anything that stresses the immune system, can affect them, I'm told by our doctor. Angela

Hi Faith, Yes, its sort of complicated, but after adding Zith dd's symptoms began to improve dramatically within two days. However, you might want to know what lead up to that in order to see the big picture. 10 days into 2000mg augmentin xr, tics dissapeared for ten days till dd got a yeast infection. Then back worse than ever. after two days from ###### (really bad ocd and tics), the tics bega to lessen but were still quite prevalent. During those two days we also were treating the yeast infection. This setback prompted our trip to Dr. Trifiletti in NY and becasue we took a friend, issues were not bad at all while we were there. (typical for my dd, she can hold it together in front of friends for the most part) Came home, two more days of total ######. (reassurance questions all day long only a couple seconds apart and moderate tics as well as other repeating issues- a big one is walking) filled the script for Zith, began on Friday. saturday was a better day...and each day has improved since then, for the most part. Reassurance questions that had been only seconds apart all day are half an hour apart and sometimes more. I haven't heard the vocal tic for several days now. The facial tic has lessened a lot. She, however, is still frustrated at not being able to everything she wants to do without difficulty. She still battles yeast every two or three days she begins to get a rash on her bottom and she treats it and it goes away only to come back again in a couple days. But when it comes back there is no set back in her behaviors now, like the first time, which was before the Zith. So, I do think the Zith is playing a big part in how she is doing. Wish it were overnigth and miraculous like I've read about some kids but its not. Angela

T Mom, Thank you for writing that all out. It is things like this that I need to read to keep the faith. There are many similarities to my dd's case and I do believe right now she is slowly healing. It just isn't as quickly as I would like. Angela

Augmentin is a combination of Ammoxicilin and Clavulonic Acid. the Clavulonic acid somehow makes the ammox more effective. Angela

Though she knows little about PANDAS, our family Doctor in Richmond, Maine, Dr. Catherine Lockwood was willing to listen to me and try the saving Sammy dose of Augmentin XR. Though we've added Dr. Trifiletti to the mix in order to have an expert on board, I will continue to update Dr. Lockwood as to dd's treatment and recovery and she may be able to help someone else in the future. Angela

She is currently on a 30 day course of Zith. She regressed with the same OCD tendencies that she had before. When she peaked on the current course she had stopped some of the OCD tendencies and felt empowered to conquer more. Now that she is regressing she has returned to touching everything in sight, skipping steps, etc. I would not say it is more severe, just basically the same as it was before. She is continuing to take the Zith, we are on Day 17. What is her weight and what dose is she on of Zith? That seems like a low dose compared to what many doctors prescribe for PANDAS. My dd is on both 2000mg of Augmentin XR AND 500mg of Zithromax. She weighs about 92 lbs. The idea, I believe is, if it has gone intracellular, you need to really have some strong antibiotics to wipe it out. So far, she has improved again since adding the Zith. She is hardly ticing at all these last few days and her reassurance questions have gone from every few seconds to about 30 minutes apart. What I am wondering is, are these cases where people are giving up on a particular antibiotic done before a high enough dose is maintained for some time, (including waiting out the saw tooth recovery pattern) or are they seeing a back slide (which could be due to anything that stresses the immune system) and giving up too quickly. Angela

She is currently on a 30 day course of Zith. She regressed with the same OCD tendencies that she had before. When she peaked on the current course she had stopped some of the OCD tendencies and felt empowered to conquer more. Now that she is regressing she has returned to touching everything in sight, skipping steps, etc. I would not say it is more severe, just basically the same as it was before. She is continuing to take the Zith, we are on Day 17. What is her weight and what dose is she on of Zith?