momaine

my 100lb dd was on both for 7 months (minus 6 weeks that she was on Biaxin). The dosage was the same as yours. She is now only on the Zith since having ivig a little over two weeks ago.

My dd did ivig 16 days ago with Dr. B. The nurse said that they had had a lot of kids with headaches and my dd was the first one, I believe, that they decided to give prednisone prophylactially. she had 40 mg each day of the ivig then 30 the day after, then 20 the following day, then no more. She had NO symptoms during the ivig or they day after. She did have headaches two days following (while on 20 mg pred) and each day thereafter till day 6. On those days Advil took care of the headaches for the most part. They also gaver her fluids intravenously at the same time as the ivig. Angela

My dd had ivig with Dr. B 10 days ago. they gave her Motrin, Benedryl, and prednisone prophylactically. She had NO symptoms for the first 3 days but days 4-6 had headaches which were mostly relieved with Advil. Angela

Buster , This was timely for me to read as we are ten days post ivig and I was in need of reading something positive. thanks for posting it. Things are definitely worse right now but we've also stopped Advil, Prednisone, and augmentin, and considering those changes, not so bad really. Dd is still on Zith, and celexa, as well as singulair and fluconizole for the yeast. Some things are harder that were easier and some things a little less sever, but overall, despite the fact that some things are worse, her emotions are more stable than I would expect with this level of repeating going on. Looking forward to posting more as things progress. Angela

That is awesome!!! Thanks for sharing. Angela

This morning dd woke with a very bad headache and said she woke ten times in the night with a headache but went back to sleep. I gave her something to eat and 2 200mg advil and she is now quietly lying on the couch in the dark, hopefully sleeping. This is day four post IVIG.

Dd has had slight head aches, controllable with Advil, for the most part, the last few days since having IVIG. OCD symptoms sligtly worse at night but she has stopped prednisone, augmentin, and is only taking advil when she has a headache and not prophylactically.

She was on both and he stopped the augmentin. I don't know why he chose that one but I do like the fact that Zith can be taken once per day.

Debbie, So good to hear your good news! I will look forward to hearing more. Louise also gave Dd intravenous fluids which may also have helped. The combination of meds and fluids really helped, I think. Glad they are learning and making positive changes as they learn more. I cannot say enough about how Dr. B's office is run. The staff was truly wonderful and caring and efficient and open minded and interested in learning more. I LOVED Louise! I almost want to go back just to visit her! She was fantastic! The hotel was great too and they got it for us at quite a discounted rate through the doctors office for patients. My dd was totally relaxed and comfortable all day both days. we brought a friend of hers and we played cards and games and went on laptops, etc. we sort of felt like we owned the office....like it was a second home. We even got a boy that was also being treated for PANDAS and his mom to join in our games with us. It was nice for my dd and the young man to meet each other. The whole trip was enjoyable. Swam in the hotel pool, shopped a lot, laughed and had fun. Bringing a friend was the key for my dd. I had a preminition that it was all going to go smoothly and i'm so glad it did. Angela

Thanks for posting.... can i ask...were you on pred going before you went into ivig...or just the days of treatment ie ....as opposed to waiting for symptoms...she was given these ahead of time....or a couple of days before.... Dd had been on 10mg prednisone every other day for the 20 days before IVIG. Previous to that she had done a 20 day taper. I pretty much begged for them to continue some amount of prednisone in the twenty days before out apt. because it brings her so much relief and couldn't bear for her to backslide again. Then, on the day of the IVIG (both days) she got 40mg. Then the two days following ivig she got/will get 30mg and 20mg. Then she is done with the prednisone. On the drive home today she got a slight headache and I gave her some Advil which quickly relieved it. Up until today I had given her Advil every day since last November because that also brought her relief. we are also done with that and will only give it if we find it neccesary. Half an hour after the Advil she complained of a slight tummy upset. she had only had a doughnut for breakfast and I think it wasn't enough for the Advil. We stopped for lunch shortly after that and she was fine. she has had a very good day but she's been around people all day so its hard to say if it is helping yet or not. I asked her if she felt any different and she said no. She and i were alone for 20 minutes today and she seemed to have fewer symptoms in those 20 minutes than she normally does, but it was not a symptom free 20 minutes. Much better than I would have expected though. Too short a time to say if it means anything though. She has company overnight tonight so I won't know more till she is home with me alone, maybe tomorrow but maybe not till a few days. not sure what her plans are at this point.

Dd 13 (suffering with pandas 4 years now, undiagnosed till last Nov.) had IVIG with Dr. B yesterday and the day before. (1.5g/kg dose over two days) The staff was wonderful! They made us feel right at home and took care of our every need. They prepped dd with benedryl, Motrin, and Prednisone to prevent symptoms. Dd had no symptoms the first day or the second day. This is the morning of day 3 and she is still sleeping but she slept through the night. We even did sight seeing while here in CT. Dr. B (whom I am SO GRATEFUL for) kept her on Zith but stopped the Augmentin. We're also stopping prednisone and Advil for now. We'll sit back and hope for the best. I'll try to let you know how things are going now and then. Probably not daily as I'm sure this will be an emotional time. Angela

pandas symptoms decreased a TON while on taper. improved between 7-13 days depending on time. began to lose improvement when taper ended. effects lated a week or two longer than the taper. dd struggled with yeast until she was on an oral medication to prevent yeast. no noticalble change in that with the prednisnone though. the yeast problem comes from the antibiotics she is on.

My dd takes the pill version of prednisone. Bad after taste so she chases it with something yummy. No obvious side effects for her but between 7-13 days into a burst her OCD/tics improve dramatically. Hope it is as helpful for you as it is for my dd. Angela

My dd's C3d was extremely elevated. (0-8 is normal and hers was 39 the first time and 19 the second time) The only thing I found on-line was something that said it is normally elevated in Rhumatoid arthritis and Lupus, which are both autoimmune illnesses. My guess is that it can also be elevated in other autoimmune disorders, like PANDAS since my dd doesn't have symptoms of either of those but fits the classic PANDAS diagnosis. Wish I could be more help. Angela

I see I have a lot of questions to answer. I don't know why I didn't get an email update. I'll have to check my settings. Dr. B told us that juts because UHC has PANDAS listed as a reason to use IVIG doesn't mean that they will cover it. And honestly, I'm only guessing that it was covered for us because of a selective immune deficiency, based on my own interpretation of the test results. I'm haven't actually talked to the dr. himself. The office staff called and told me it was approved but did not tell me why. My dd has been on a tapering dose of prednisone twice now. It began with 40mg for 6 days, then 30mg for 5 days, and then 20, then ten....it was a total of 20 days. Today, day 13, was the best day so far. A selective immune deficiency, in our case, if I am reading the tests correctly, means that my dd cannot fight off a strep infection. Her immune system does not mount the proper response, therefore, the infection lingers even while on antibiotics. Thanks for all the well wishes. Angela

Dr. Bouboulis got IVIG covereage for us through United Healthcare. He found a selective immune deficiency (if I understand correctly) and she will get ivig within a months time if everything goes as planned. I just wanted to share our good news. Good news seems to be rare on this forum. We're hanging in there. The most recent prednisone taper is beginning to work again. I hope it lasts until we can get the ivig. Wishing everyone good health, Angela

Pam, One piece of advice I would offer is to get to Dr. Bouboulis in CT or Dr. K in Chicago. One of those two doctors will help you immediately without messing around trying to convince another doctor of the need for antibiotics or deal with someone who cannot offer IVIG if it becomes neccesary. In the meantime, if you can get a local doctor to prescribe antibiotics, great. And if you can get some of the tests done before you see Dr. B or Dr. K, then you'll be more prepared. Good luck. Sorry you are in these shoes. Angela

Are you sons selectively immune deficient to just strep? What test showed the immune deficiency? I am teary with happiness for you after reading your post. I hope I am in your shoes soon. Angela

Thanks for the support phasmid. My dd has horrible separation anxiety so leaving even for a walk isn't an option . Most days I cannot even run into a store and pick up something without leaving her with my mom or someone else. Hopefully, with IVIG in our near future, the worst of it will soon be a thing of the past. Today is day 7 of our latest prednisone burst/taper which usually kicks in around this time. That will make a big difference too. I'm trying to hang in there. This isn't a whole lot of fun though. I saw on a local news program last night that Mystery Diagnosis is here in Maine filming Sammy's story, to be aired later this year. It's hard to believe that this is so rarely diagnosed as to be on that show when you hang out on this forum. I hope that it makes other people's journey easier than ours has been. Angela

That is fantastic! Thanks for sharing. Angela

Augmentin and Azithromycin help a little. The advil and prednisone have been the life savers while we wait for IVIG approval. Hopefully soon. Angela

Please know you are not alone. Know that you are in my thoughts and that I understand what you are going through. I wish I were able to help you but I can barely help myself, at this point. This is a timely post for me as I'm feeling very lonely and frustrated dealing with this shitty disorder the last few days. I've alway prided myself on the relationships I've had with my children. We've always been open and honest with each other and I've taught them to communicate well. Until this disorder hit, we were a very peaceful, respectful, and loving family. Now there are days I scream at my dd and say mean things back to her when she just can't help herself. It's like I've fallen into a nightmare and cannot wake up. The worst of it is that my dd needs me to watch her rituals. Some days she asks me to watch her varying from every few seconds to every few minutes. I felt like I was born to be a mother until this last year and now I dream of running away. I wish I had more patience to deal with this. My husband works out of town and though my family and friends help me some, they really have no idea how bad things are here. I hope that writing this out helps me in some way. I've been very teary these last few days and my kids have grown used to seeing me cry and they don't even seem like they care. I feel so alone. The good news is we finally have all the test results in to submit to insurance to try to get coverage for IVIG. In a weeks time we should know. Whether or not they cover it, we will go ahead with it. I cannot live like this any longer, nor can my beautiful but tormented daughter. No one should have to live like this. Angela

The best article I've read about PANDAS so far. It comes the closest to helping other people understand what we've been going through other than living with it, that I've encountered. Great combination of emotion and fact. So glad the word is getting out there. Angela

In the past I've given it right before bed and dd will be asleep in 20 minutes or so. It helps her shut her mind off so she can sleep but if she's supre anxious, it doesn't help. She still has to allow herself to fall asleep. Angela

So glad to hear the word is getting out . You guys are very brave! Angela