momaine

This is how it has worked for my dd. Primary symptom OCD. SEcondary is tics that show up most often during ocd difficulties. It lessened the OCD a LOT, therefore the tics were also fewer. However, during an exacerbation of ALL symptoms during the yeast infection, it did not bring the level of relief it had before. I did not stop it however to see how bad it could get. Angela

Excellent! Who do you have for insurance? Angela

Hi Heidi, Welcome to the group but sorry you have to be here. I think you'll find a visit with Dr. Trifiletti well worth it. Where are you driving from? It was 6 hours for us and we got in a visit to NYC which was fun. (took my niece becuz that makes it easier for dd) Any way you can get your pediatrician to give you a script for Azithromycin or Augmentin XR (high dose) while your waiting to see Dr. Trifiletti? Advil helps my dd a lot. Too soon to say really, but dd has seemed to improve some since starting the Zith friday evening. We're giving 2000mg Augmentin XR and 500mg Azith each day right now. Let us know how it goes. Angela

Thank you for sharing your story. It's something I'm keeping in the back of my mind in case we ever need to go that route. (sigh) I'll share my little ray of hope that I saw yesterday too. Dd is 5 doses into the Azith. Augmentin combo. (just added the Azith Friday night) Last night we had company and though with company she usually sleeps in her sister's room with the friend, the friend went to bed early and she did not want to go in and wake her. She normally sleeps on the couch but friend's mom was there. She could have shared it with friend's mom who is very understanding (big couch) but she did not want to bother her either. She chose to sleep in her own room. That hasn't happened since she was first doing better on the Augmentin but then things got worse again. She was asleep in half an hour. She did get in and out of bed several times but not with the urgency and anger and frustration that normally accompanies this. She couldn't keep her feet in bed (puts them on the floor with her body in bed) but she did not say, "I hate my stupid self" when she could not do it. She did not cry or rage. She did not call herself names. Her morning was better yesterday too. she did ask reassurance questions but not endlessly like previous few days. Then our company arrived at 11 a.m. and the rest of the day went well. (to be expected with company). So, it's not HUGE but it is huge, if you have lived with this. I realize today could change. Maybe holding it in yesterday with company will come back to bite us today. Still, it was improvement and I'll take whatever I can get. Angela

edit...messed up sorry, can't figure out how to delete this

This made me cry. Some day it would be nice to have come out the other side of this and feel like sharing about this journey in order to help someone else. We're barely functioning as a family right now and I can't even imagine it at this point. Not sure if my dd would feel good about doing that or if it would be too much information for her to share about her private struggles. I'm thankful to those who do it though. Angela

Angela, do you mean that you're going to give the 2000 mg. Augmentin AND the 500 azithromycin at the same time? or do you mean this is a switch? both at the same time.

Lots of probiotics and yogurt (too bad I didn't buy stock in Yoplait) + antifungals. I've just got her on the zith now. 2 days off the augmentin and the yeast has drastically improved. I don't know if it does the same to others- the yeast flared earlier, when she was still on the rifampin+augmentin, then we treated with diflucan after finishing the rifampin. Stayed on the augmentin, could not get the yeast to clear. When we added the zith on Monday, we were supposed to wait until Sunday to stop augmentin. So I guess I quit a few days early. Are the antifungals you are using just topical that you buy at the grocery store? I've had dd put Monistat one day treatment that comes in an applicator tube (we just squeezed it out and applied it by hand) on the rash on her bottom. Is your child's rash vaginal or just on the external skin? I've read somewhere that on the skin you can also use althete's foot antifungal. Angela

Are you giving probiotics daily in between doses of Antibiotics?

my dd who has pandas ocd/tics does better with people around. It is exhausting to hold it all in though and after company leaves things are much worse for a time. It's weird that they have some control over it but not when it is just mom, but it is like that. I wish I knew why. Angela

The second time, after a terrible ordeal the first time, I got her a mild sedataive from the doctor. It took the edge off and helped. The next time she was able to do it without the sedative. I also use the numbing cream (lydocain, I think) and bribe with chinese food. =) It all helps.

We did discuss steriods. He wanted to try the Azith and wait and see how that went first. He let us know that there are options out there to try if things don't improve soon. As far as school goes.....and germs...my girls are both homeschooled. They always have been. And even if dd was not homeschooled, I doubt she'd be going to school right now as she is pretty incapacitated by this. Angela ~ glad to be ready for Christmas

yes still doing advil. still helps, I think. Don't dare stop it right now. This is a terrible night. Got to run. Angela

He said they both work in different ways. Don't quote me on this..it was a lot to take in....but one kills the strep and one stops it from multiplying?? Plus Azith is a broader spectrum antibiotic. But since there are pockets of strep on the east coast that are resistant to Azith it isn't a bad thing to keep up with the Augmentin and dd is tolerating it well. That is what I got out of what he said. Like I said, don't quote me on it. He was fantastic, knowledgeable, and friendly. It wasn't about filling out a million sheets of paperwork. He just sat and talked to us and took notes and really wants to help dd. He said she is now his patient and he will work with us to help her. We can do some stuff over the phone and not have to travel to NJ all the time..just on occasion. Angela

After a horrible week we decided we really needed an expert on board and decided to take a trip to see Dr. Trifiletti. We talked with him Monday morning and he agreed to see us Wednesday morning. This is the quick version of events of the last 5 weeks. Nov 6th -figured out Advil helped a ton by accident. began giving it daily on Nov 8th. Nov 11th began 1000mg Augmentin. Nov19 upped it to 2000mg Augmentin XR Nov 30 - Dec 8th No tics at all after tics for weeks on end...none, for ten days straight. (this was ten days into the augmentin xr 2000mg dose) Dec 8th I forgot to give her a probiotic Dec 9th rash on bottom, likely yeast infection Tics and OCD out of control Dec 10th horrible day with tics and ocd Dec 11th Tics slow a lot, ocd still pretty bad...from this day till today tics are fairly quiet...still there though to some extent. Dec14th left for NJ/NY and took cousin with us, which helps dd a lot. 3 decent days while on the road and in the city. some ocd, very few tics, if any. Dec 15th saw Dr. Trifiletti. Very knowledgable and feel very good to have him on board. Just filled script for Zith today. (Dec 18th) Just gave Dd first dose. Dec 17th--first night home. Horrible ocd, some tics. Dd just wanted to die but got to sleep in less time than I imagined it would take. Sleep by 11 pm on couch. (We don't even try to go up stairs anymore, too many things are difficult, stairs, doorways, getting in and staying in bed...) Dec 18th VERY hard ocd day but my mom came to help and we got her to her Blood draw recommended by Dr. Trifiletti. (checking lyme, strep, and immune system) Got first dose of Azith into her. Poor kid. Shitty day! AFter 3 days in the city holding it all inside. Lab said the tests will take up to two weeks to get results. Will let you know how they all come out. Dr. T also recommended the Cam Kinase test after the lab reopens. Will keep you all updated. Thanks for all your help. Angela

I was one of the people who said that Dr. T prescribed two antibiotics. Dd was already on Augmentin XR 2000mg and he added 500mg Azithromycen. He said they worked in different ways (one killed the strep and one stopped it from multiplying??? seems like it was something like that but don't quote me) and that the Zith was a broader spectrum antibiotic. I had questioned whether or not some strains of strep on the east coast don't respond to Azith and he said that was true in certain pockets of population. Perhaps that is one reason why he kept her on the Augmentin? I'm not posiive of that though. Just got the first dose of Zith into her. I'll write a separate update on her for anyone interested in how she's doing. Angela

We just got back from seeing Dr. Trifiletti and when we went my dd was already on 2000mg of Augmentin XR per our family doctor. He added 500mg of Azithromycin per day. We'll start that tonight and see how it goes. Angela

Right how we're giving her 200mg twice per day. It was working for a while. She's having a hard time right now but I don't dare stop the Advil for fear things will get worse. 1 200mg dose brings her about 22 hours of relief. Two a day makes it so we don't have the lag before the next dose. Half an hour after dosing, things begin to calm back down again if I go longer than about 22 or 23 hours. Angela

thanks for your thoughts. I have no idea about this but will run it by the doctor when we go. We are seeing Dr. Trifiletti on Wednesday. Angela

I'll tell you what happened with my dd. OCD began with frequent urination and comulsive need to wipe repeatedly..always feeling wet along with reassurance question. With ERP we go the wiping under control but no help for the intrusive thoughts. Tried Zoloft. Within the month, things improved dramatically. Stayed good for 6 months or so. Things went downhill. UPped dose. Things evened out for another year and a half. Things tanked again....upped dose again...twice....no remittance from extreme OCD. Changed to Celexa and by day ten things were improving again, slowly. upped dose...not sure if there was anymore improvement, really. Found new psychologist who steered us in the pandas direction. Began reading more and more and realized she had ALL the symptoms of PANDAS. Started antibiotic but dr. did not want to make more than one change at a time so she is still on Celexa. I do beleive the zoloft helped for a time but when she had a really bad exacerbation this fall it did not help. The Celexa also seemed to help but that one I cannot be sure of. It's possible it correlated with her also just getting better. Also started Advil a few days before antibiotics and noticed a HUGE difference in symptoms from that. Really obvious. Because of her symptoms, I really beleive she has PANDAS though I have no official diagnosis. OUr doctor is accepting the possibility and prescribing antibiotcs but knows nothing about it. I hope to see Dr. Trifiletti soon. Hope that helps. Angela

Thanks for the update. We are hoping to make the trip soon. Angela

LIke someone else said, is he doing it because it makes him happy or because he feels drived to do it and would be miserable if he could not. If he is happy doing it, I'd say it could be normal for him. My kids are very bright and have always done things in phases. They get into something and do a LOT of whatever it is till they burn out and move on to something else. Angela

I've left a message at the doctor's office. Hoping she'll call. I'm leaning toward it being a yeast infection. She's on antibiotics and she had her period. Those pads don't make it very breathable in that area. Do you think a yeast infection could also cause an exacerbation? It would be anything that stresses the immune system, right? And any type of infection would do that. Also left a message with Dr. Trifiletti's office as we are going to see if we can get in with him in the next two weeks. I'm tired of not having an expert on board and having to figure out everything myself so I can tell my doctor about it. Thanks for all your help. I don't know what I would do without all of you to help me. Angela If it were impetigo, would it still show up while she is on antibiotics? Wouldn't it also be treated by antibiotics if it were that? Today is slighty better. Still lots of reassurance questions but less tics. Angela

If it were impetigo, would it still show up while she is on antibiotics? Wouldn't it also be treated by antibiotics if it were that? Today is slighty better. Still lots of reassurance questions but less tics. Angela

I've written about dd 13 and the fact that on Augmentin xr 2000mg she had no tics for 10 days and things were going pretty well. Then the tics returned with a vengence a couple days ago and the ocd was worse than ever. It was those two terrible days that she also complained a LOT about itching in her genital area. (In hind site I believe she had strep of the vaginal area before and we did not know it but since we're treating her with antibiotics I thought it should clear that up) However, yesterday she said it was more her butt itching and she was going crazy and finally let me look. She has a rash on her botton, that is tiny red dots very close together and they go in a line, shaped like a crescent moon. Very itchy. I gave her benedryl last nigth and put some salve for yeast infections on it and she went to sleep. Any idea what this could be? Could it be a form of strep or a form of yeast? Or other? Could it be related to her exacerbation? Angela