momaine

Though this is all over my head, I am ever thankful for your work in this field, for treating our children, and I hope that your findings will continue to bring our children relief from this dreadful disease and healing. Angela

A month ago my dd did a 6 day tapering course (24mg then 4mg less per day) of Methylprednisone (sp) and it took another week to really begin see the benefits. The benfits lasted about ten days. It certainly did not fully eradicate her sypmtoms but they improved a lot. (Very obviously) For a good 5 of those days all her symptoms were in the 0-3 range out of a total of 0-9 on a scale. Typically she has a handful of behaviors in the 4-6 range and one in the 7-9 range here and there. She is on day 3 now of a new course of Prednisone. (40mg for 5 days no taper) She already seems to be doing a little better but I'm hoping for a greater response as time goes on. Dr. T said we can do this next month as well, as long as it seems to be helpful. Dr. T did mention that it makes her a good candidate for IVIG if it is needed some day. She seems to be slowly improving on the antibiotics however and is not at a crisis level at all anymore. Angela

When I read stuff like that knowing that doctors are likely familiar with it, it makes me even angrier for all the people out there who have come up against a brick wall with doctors wrt PANDAS. How is it possible that they can't see that strep or other infectious agents could cause they symptoms our children are dealing with? I just don't get it.

I was tellinga friend of our family about PANDAS and I listed some of the symptoms of it. She told me that when she was a young teen, she had urinary frequency (friend teased her that seh had a small bladder), a facial tic, and extremely high anxiety. She said shen she turned about 19 years old all those symptoms just went away. She also prefaced all that with the fact that she had strep as a kid a LOT. Sounds to me like a PANDAS case that resolved on its own. I still really wonder how many cases of OCD and tic disorders are related to an infection. I'd wager its a high percentage. Angela

Someone from The Cunningham study did write back and said, "The steroids will decrease the immune response but you will need to decide if you want the testing." Does anyone know if that affects all aspects of the study (they check more than one level, right?)or if it would likely take a child who was positive and put them in the negative range or likely just take them from a possible high level to a lower level? I'm just trying to decide if we spend money on this if it might come out negative anyway due to steroids. Has anyone done it after having steroids in the past month? Angela

We use Culturelle successfully and as far as Omega' 3's, I've used from GNC, Jarrow's formula , and Carlson's. No problems with any of those. Angela

My daughter has loose stools some of the time from the antibiotics she is on. I mentioned it to Dr. T along with the fact that it doesn't seem to bother her and her stomach doesn't hurt and he didn't seem concerned. I would think a diet rich in rice, bananas, and other foods that tend to bind would help. Lots of fluids is also good to replace lost fluids. Maybe Gatoraide? (not sure)

I emailed at the following email 'Madeleine-Cunningham@ouhsc.edu' Is this the correct email? I only emailed yesterday morning so maybe I haven't allowed enough time for a response. Just wanted to make sure I used the correct email. I just dug it up on-line and wasn't sure if it was an old address or not. Also, is there a web site about the testing? Thanks. Angela

Sorry to hear you had such a tough day yesterday. Good luck with the IVIG and please keep us posted. Angela

Angela, so happy to hear your dd is doing quite well right now. you mentioned vitamin D2, or it is vitamin D3 you takes? Should I test my son's blood to see if his vitamin D deficiency or just take it without any problem? thanks, I mixed them up....I have them here in front of me now and they are B2 and D3. I am very sorry I mixed that up. ~ Angela

Hi,He most certainly can have a negative strep test and still have PANDAS. See if your doctor will prescribe Augmentin or Zithromax as those seem to work best against strep. Sometimes strep can be in places on the body other than the throat. It can be on the skin, in the gut, vaginally for girls, in the adnoids or tonsils, etc. It certainly sounds like PANDAS to me, a mom who has a dd with PANDAS and who has spent hours reading these boards. Hang in there. You've caught it early and he will get better. Sometimes the kids need to be on antibiotics prophylactically. (as a preventative) Angela

My daughter is on 2000mg Augmentin XR as well as 500mg Azithromycin. She takes those with breakfast around 10 a.m. and before bed around 9 p.m. along with 200mg of Ibuprofen. She also takes a Culturelle mid-day. In the a.m. along with her antibiotics, she takes vitamin D3, multivitamin, and Omega 3's daily. Every other day she takes a B2. She has been on 40mg of Celexa as well, but as of today I'm shaving it down a little at a time to try to wean her off it. We'll see what happens. The more I read about pANDAS kids taking SSRIs the more I worry that it might be making things worse. Initially I did see improvement at the 20mg dose. Then we raised it to 40mg and I saw no further obvious improvement. Then we figured out the whole PANDAS thing and I never quite dared change anything. Right now she's doing quite well overall and I'm willing to try tapering it. Oh, and I meant to add that my daughter's diet is less than desirable but I'm just happy when she eats as she doesn't have much of an appetite. If she will eat a poptart, she gets one. Angela

This is exactly my 13 year old dd and it has been like this for qui3 years. I am the only one she asks all of her reassurance questions and I believe it is just becasue I am the one she is most comfortable with. She will occasionally ask my husband, but not very often and really only if I am not available. It is the most exhausting part of her ocd for me. I need to watch her eat to make sure she eats "righ.t" (as in not weirdly) I need to watcher her lie down in her bed to make sure she does it right. Watch her show me how her clothign or blankets touched her so I can reassure her it wasn't weird, etc. and she asks only me all the other reassurance questions. Sometimes My head feels like its going to explode from trying to pay attention to it all. She finds relief being places without me where she is busy, like her grandparents or friends houses. But sometimes (less now that she is getting better) the amount of questions she asks when she gets back are compounded after supressing them for so long. My daughter has been on antibiotcs for 2.5 months now and the amount of reassurance questions she asks is way down compared to waht it was. It is one of her worst symptoms. Angela

You realy do have to sit back and look at the big picture. My dd has only noticed and said something twice about how she has improved. (and those were precious moments!) Even when I see changes, she often doesn't notice as she is still living with some anxiety every day. I totally understand where you are coming from. The tears, the frustrationg, the joy found in sharing some small gain. We should all find some small ray of hope each day to be thankful for. Even if it is just that our friends or families are helping us through a really crappy day. Hang in there. Angela

Jan. 13th began a tapering dose of prednisone. 24mg first day, 4 mg less each day, spread throughout the day. Day 1 noticable change. (stopped advil which was a mistake) Days 2-3 worse, no advil Added Advil back in on the night of day 3 and was back to her norm for the rest of the burst. Not seeing the benefits that day one on the highest dose gave her. 12 or 13 days after BEginning the burst she has seen marked improvement her ocd. She asks FAR fewer reassurance questions, has begun sleeping in her own bed (with me in the room at first but its upstairs which she has avoided for MONTHS) She showers daily and brushes her teeth more often than previous. Her mood is better over all. I am VERY pleased. Day times have been mostly fantastic. (minus 1 24 hour period a day ago that was horrible and which resolved when I finally remembered to give her an extra Advil) However, sleeping in her own room has brought out some behaviors that she doesn't struggle with when she does not go upstiars. She struggles to go up the stairs, go through her bedroom doorway, and stay laying down. She repeats words more when she is up there as it is stressful. BUT, (and its a big BUT) she has felt able to cope with the difficulties that going upstairs brings and is happy to be sleeping in her own room again. so, the shortened version is. GREAT DAYTIMES, Difficult bedtimes brought on by her willingness to tackle things that she previously felt unable to even contemplate. She has also gone up to the barn where she used to takeriding lessons and ridden horses two days in a row. The first day she had such trouble leaving the barn that she vowed not to go back again. (which is why it has been avoided for some time now) but the next day she kept the lesson she had scheduled and even stayed longer to ride a second horse. Things were less difficult the second day. One thing that breaks my heart through all this is the places that she avoids because of the behaviors that are triggered. One is our own barn which she will only go in if we have company that will go with her. She has an old but much loved horse out there that she misses interacting with terribly. I can't WAIT until she feels empowered enough to go see her every day, and not just from afar. I'm hopeful and scared and I think the post tramatic stress thing is right on the money for us moms. I always feel like I'm waiting for the next bomb to drop. I can't wait till this nightmare is over. I read Against Medical Advice yesterday. What a sad story that sounds exactly like PANDAS. Too bad they never figured it out and included that in the book. I cired through the whole thing practically. Angela

What is ASD spectrum? It would help some of us if you would write the whole name the first time in a post. Thank you. NVM, you are probably taking about Autism Spectrum, right? Angela

Welcome to the group that no one wishes the had to be a part of. (you know what I mean, we just wish we had healthy kids) This goup has been my LIFE SAVER! I'm glad you found it. Good luck with your son. Angela

Interesting. Have you ever put her on abx? Allergies often cause dogs to lick their toes. Have you tried giving her benedryl to see if it helps? Angela

Hi,Angela, Good luck with this, keep us posted re Augmentin XR. I would put in for IVIG now as it will take 30 days for them to respond. I assume your child qualifies for this? Michael Actually, I don't think she does. Her tests on her immune system came back normal. I've not ruled it out and if I have to eventually will pay out of pocket, if I can't get them to pay for it. (think loan from 401k or something) But since we've seen so much progress without it, I'll wait and see where that gets us. I'd like to win the lottery! I get sick just thinking about a 10k loan for something the won't even know for sure if it will help. Angela HAving PANDAS may be enough. Is there actually a diagnosis (diagnostic code) for PANDAS? I know that on my dd's diagnosis, it is just listed as OCD and transient tic disorder. Do the doctors actually make a note that it is PANDAS?

Hi,Angela, Good luck with this, keep us posted re Augmentin XR. I would put in for IVIG now as it will take 30 days for them to respond. I assume your child qualifies for this? Michael Actually, I don't think she does. Her tests on her immune system came back normal. I've not ruled it out and if I have to eventually will pay out of pocket, if I can't get them to pay for it. (think loan from 401k or something) But since we've seen so much progress without it, I'll wait and see where that gets us. I'd like to win the lottery! I get sick just thinking about a 10k loan for something the won't even know for sure if it will help. Angela

I thought I'd update you guys on the process I've been through to get the insurnace company (United Healthcare) to cover Dr. Trifiletti, who is outside our coverage area. I filed what is called a Gap Exception becasue there are no qualified Pediatric Neurologists near us. It was actually accepted and we can visit him up to 6 times this year. Now that I have been approved for that, I have sent an appeal for our apt. in Dec. that was not covered and hopefully they will pay that. I also have appealed the fact that they won't cover Augmenin XR and I included in that the fact that Moxatag is one option we are considering and it cost much more than the Augmentin XR. Hopefully they will see that it is in both of our best interests to allow covereage on that drug. It was a long process to say the least. I was on the phone for over 2 hours and then had to write letters to boot. They have 30 days to respond. Angela

Gat's Mom, I think I have that book upstairs. Send me a private message with your mailing address and I'll send it to you. Angela

My dd has been on antibiotics now for 2.5 months. It's hard to notice the changes on a daily basis because life is still stressful each day to some extent, but when I really take a step back and look at the big picture, that is when I see the progress. I have never once (except the first day she was on steroids and when we first added Advil) noticed that in one or two day that things improved. Yet, 3 months ago I was wondering what on earth we were going to do. Psychiatric hospitals were on my mind and I had help coming over daily to just get us through the day. I was crying daily and my dd couldn't even get to the horse show she so BADLY wanted to ride in, on time. She couldn't walk, couldn't dress, couldn't brush her teeth, couldn't get into bed. She cried and raged daily. I could go on and on. Frustration is still a daily problem for us, but its more along the lines of...I get frustrated watching her dress becasue she puts on the clothing 4 or 5 times. She's done in 5 minutes. I get frustrated prodding her to brush her teeth, but she does it once a day (most days) without crying or raging. We make it to places on time now and before I couldn't even tell people whether we'd make it or not, let alone on time. She still has problems walking (shuffling and repeating) and getting through doorways, but it isn't holding us up. Her mental state of mind is one of feeling frustrated almost all the time, yet she can deal with it now most days without lashing out. Hang in there. It will come. Angela

We are working with Dr. Trifiletti. Before we saw him dd was already on 2000mg Augmentin XR. He added 500mg Zith. Now my insurance will not cover Augmentin XR as of the new year so I'm looking into alternatives. I did write to Dr. T asking about substituting the Augmentin with Moxatag and he wrote back and said that Moxatg would not replace the Augmentin XR becasue the Clavulanic is critical to provide inhibition of beta-lactamase. (over my head) He added that Augmentin is an "extended spectrum" penicillin as well as extended release. (more extended spectrum than Moxatag, I presume, which is just amoxicillin made to release slowly) But then he also said that perhaps for the present time, Amoxicillin (in the form of Moxatag) may be enough for my dd. (along with the Zith, I presume) I've written back to ask which he'd prefer for her at this time, Moxatag or regular Augmentin. I'll let you know when I know. THis is so difficult to sort out. I am so in over my head. Angela

Alex, Thanks for that info. I'll be interested in Dr. T's take on the matter. One question....would IVIG be advisable if immune system tests came back normal? Obviously, something is wrong with these kids but my dd's immune system tests were normal and she doesn't get sick easily. She's never tested positive for strep becasue we didn't know to test for it. She had many symptoms of vaginal strep (in hindsight) over the last 3 years though. I'd say we don't know for certain what is causing her problems but she's having a positive reaction to antibiotics and anti-inflammitories. Angela