momaine

Hugs to you Peglem!

My dd's toes get really red...almost purplish grey. Sort of like they belong on a corpse. It has made me wonder if there was a connection. I'l lbe interested to read more. She said they do not hurt of itch when they are like that. I attributed it to poor circulation in my mind. Now I'm wondering. (edit) the same thing happens to her fingers too. Upon reading about Raynaud's Syndrome, I'm certainly wondering now. Angela

I know Beth talked about a saw toothed recovery...sort of two steps forward, one step back. I am pretty sure that they saw a positive response to antibiotics within a few weeks but then recovery was slow and sawtoothed. She did tell me personally that once they figured out he needed to stay at 2000mg of Augmentin XR, (trial and error when trying to lower the dose) that it took 9 months before he was symptom free. Angela

I wouldn't think it would hurt anything to give 10mg to see how he responds,(I'm no doctor, you could call and ask them) but it won't offer the reduction in inflamation that 40mg does either and it can take a while to kick in. Has he been diagnosed with Tourettes? Has he had PANDAS for long? Have you tried giving him Advil to see if it makes a difference? My dd gets a good amount of relief from Advil. (not tylenol) It reduces inflammation enough to offer some relief. Angela

It has taken any where from 7-13 days for a prednisone burst to kick in for my dd and they have lasted anywhere from 5 days (at the lower dose) to 3 weeeks (at a higher dose). She is 13 yo, 100lbs now and her higher dose was 40mg. It seemed to me that she improved slightly for a couple days then had a middle time of GREAT days then slowly deteriorated again, each time. (but by slowly, I mean over the course of two day it got progressively better..then great days in middle, then progressively worse over two days then back to horrible again.) Prednisone has been a life saver for my family. It makes me know that if we can get the inflammation under control that my dd will be herself again, as she is while the prednisone is working. It has also given her hope. It definitely is worth the risk to me to have those days of sanity interspersed with all the craziness. Angela

Very sorry to hear it. Hang in there, appeals sometimes work. Angela

Since you've caught it right off you should have a better chance of having the antibiotics work. I actually know of one little girl near me who had strep and came down with a ton of anxiety that same week (couldn't go to school and wouldn't even come down stairs for days because the dog had thrown up on the floor once) I knew her mom and pressed her to get antiboitics right off and stay on them for at least a month. The best she could get from her doctor was Ammoxicillian for a month in addition to the normal dose she was first on but she slowly got better and seems to be in a good place right now. She's back in school and behaving normally now. Best of luck to you! Keep reading here. Angela

Alex, I am so encouraged to read your update. Thanks for posting! Angela

My dd has an elevated C3d circulating immune complexes. From my research on-line, i have found that this is usually present in people with autoimmune disorders such as Lupus and Rheumatoid Arthritis. I'm hoping this will help get IVIG covered by insurance. Has anyone else's child been tested for this? What were the results? What do you know about it as far as PANDAS goes? Thanks, Angela

My dd is 13 and has never had a pneumococcal vaccination. Dr. Bouboulis said she has a sinus infection, which is where strep. pneum. usually resides. Would it then make sense that she has pneumococcal strep in her sinuses but cannot mount a response to it, esp. where her white blood count is elevated? Could the insurance companies argue that she doesn't have strep at all because of the low pneumococcal anitbody panel? I wish I had a medical background. This is so difficult to figure out. Angela

So does this mean she is immune deficient against strep. pneumococcal infection? That her body cannot mount a proper response to the infection and so it lingers? Angela

Hi, I'd like some help interpreting some lab results I just got back. We don't see the doctor again to discuss them for two weeks and I'd like to learn more about it before then. Thanks for any help you can offer. pneumococcal antibody panel - they tested 12 different types...and she was low on all of them. What does that mean for her? I can list them all out if it would help. (Edit) I read more online and I think this means that her body doesn't have the IgG levels to fight the strep. pneumococcal infection, which usually resides in the upper respitory tract, which would explain the chronic sinus infection. Does that ring true to anyone? (end edit) She had a high white blood count. (presume that indicates current infection) Hers was 16.6 (range is 4.8-10.8) She was also on prednisone at the time of the draw? A nurse friend of mine said that can affect white blood count. Can anyone elaborate on that and how much it might skew the test? Under white blood count, specifically, her MCH was a little high. (range 27-31) she was 33. Also, there was a test called C3d Circulationg Immune complexes that came out high. she was 39 and the range is 0-8 negative. Her ASO and Antidnase had fallen sine the last draw. They were never high but previously were <60 <80 and now are <20 <70. Thanks so much, Angela

My 13 yo dd had high iGg and normal IGm. She tried Biaxin but it did not work for her. Angela

My dd, who has had undiagnosed PANDAS since aged 10, (diagnosed last December) also worsened when she started her period. She also had a horrible several days when she was vaccinated against h1n1 this winter. At the time she was on Augmentin and she came back to normal for her in a few days. Until she started prednisone, each time she had her period, her symptoms worsened for a few days then went back to where she was before it started. Since starting prednisone bursts, she has been the same during her period. It certainly sounds like pandas to me. I recommend finding someone experienced with it to help your dd. Angela

My dd doesn't see the benefits of steroids until between days 7 and 13, then the difference is dramatic. We go from being in complete crisis to being able to function at a level that at least makes it possible for us to go on as if life were normal, though we all know its not. But we can go places and she can shower and brush her teeth and make headway. A side effect of prednisone is anger. The benefits you saw from antibiotics sure make it sound like your child has PANDAS. If he/she only had OCD or TS, they would not benefit from antibiotics. Keep up the hope. Angela

Mike, Glad you found this group. It in invaluable. My best advice would be to hook up with one of the doctors who is already knowledgable in PANDAS. There is a list of them at the top of the forum posts under information for new people. Angela

Something to look into might be MSM. I take it for its anti inflammatory properites to help me with arthritis and back issues. I've thought about using it with my dd for inflammation but didn't want to add one more thing that I wasn't sure of. might be worth asking your pandas doc about. Angela

Even without a positive test it could still be strep. Maybe it's hiding out in the nasal passages or tonsils. Or maybe it is the mycoplasma. Either way, I think treatment is the same. PITAND/PANDAS...same treatment I believe. Targeting the right infectious agent would be key though, would it not? (as well as IVIG)

Hugs go out to you and your dd. I pray she finds some relief soon. So glad you have Dr. T on your side. Angela

If I understood our doctor correctly, I believe he was saying: PANDAS kids' dopamine is unregulated. It goes up, it goes down. Those changes cause things like the shuffle my dd does when she walks. (And I'm assuming all the repeating she does in other areas) People with Parkinson's disease have too low dopamine. That causes their shaking. The SSRI's increase seratonin which can make the dopamine issues seem less severe(OCD less severe) but it doesn't treat the real problem of unregulated dopamine. Hope that helps. Angela

My 13 yo 95 lb dd takes 250mg of Azith twice per day as well as 875mg of Augmentin twice per day. She does fine on it as long as she takes her Culturelle and takes them with food. Angela

Hi Angela,... well, I don't know, you say no symptoms and she's never had one before, so I'm just kind of wondering how there would be no symptoms of pressure or headache or even mucous, if it was so obvious just by looking up there? no endoscope? just with a light? You already have her on abx, right? So is there strep there or is it just speculation? Is the inflammation due to allergies or strep? both can cause inflammation, but is it inflammed because of allergies, or is it inflammed because of strep? I'm not understanding how decreasing inflammation that one is not bothred by, will help PANDAS or neuro symtpoms. If there is definitely something there, I think you should see an ear, nose and throat doctor to follow up. Well, he didn't test her for strep but said her sinuses were definitely infected when he looked with one of those things you look into noses with that has a light on it. about the symptoms, well she has had head aches off and on for 3+ years but not the typical green snotty nose that I think of when I think of sinus infections. Decreaseing inflammation will help to make the sinuses less of a likely place for bacteria to grow, was my understanding. It isn't going to stop the autoimmune aspect. That is what IVIG is for. It may make her less likely to get another infection if we keep the allergies from causing inflammation. Thanks for the comments. I appreciate them. Angela

Angela, You say the doc thinks your son has a sinus infection, or that he definitely does? he could tell just by looking in there? And he has no symptoms tho, sinsus pressure, mucious, nasal talk, whatever? If your son has this, I would go to an ENT to check it out. I would also like to warn against the Singular, last year there was an article that came out about kids having psychotic symptoms while on it, .. if I find it, I'll post it, but you could do a search on the TS side, pretty sure its there. Faith faith, dr. b looked up her nose and said she definitely had a sinus infection. Why and ENT when he is treating her for it? Just wondering if you know something I don't. Never had a sinus infectino before.

can you be more specifi as to what i should be on the lookout for? ty angela

fixit,if you read the title and first post in this thread, you will see the anwers to your questions. Hoping for ivig, depends on test results whether insurance will pay for it. it'll take about a month to find out with a couple of blood tests done two weeks apart. will have it done either way since he is confident it will help her. we will see Dr. B again in the middle of may.