Suzan

I'm still learning about OCD and how it affects us here. But your examples sound VERY familiar to me. 1. My dd8 hates to wear a coat but she will since she is cold (this is a more recent learned thing, when she was younger it was much more difficult). If she can get away without wearing a coat, she will and I stopped a long time ago forcing a coat. She's responsible for her own temperature comfort now. However.... (see #2) 2. The main reason she does not want to wear a coat is because it messes up her hair. She can be thrown into an ocd episode very quickly if she thinks her coat is messing up her hair! If she does not have time to fix her hair or thinks her hair may not be OK, she is very upset and all reason goes out the window. 3. "He can be in a good mood, but if something triggers him he will have an episode of total irrationality." This is us 100%. It can be easy or hard to know what will set her off. Some is predictable and others not. The other day, her sister wrote on her hand on purpose with a ball point pen when she did it to her sister on accident. It was a long episode after that. 4. She does always think she is right and there is no convincing her otherwise. But when I realize this is going on and just say "OK" or "yes" or "fine" or anything to appease her, she knows right away and won't let me get away with it and we start the push-me-pull you thing where neither one of us can win and it tries my patience more than anything else. As far as being able to see the OCD more after being on abx, I agree with you there. I think having her improve has helped me to be able to see her more clearly since she is not a complete mess all the time and so her OCD became more apparent to me. Also, learning more about OCD here on the board has helped me a lot. I've been a slow OCD learner. Susan

Now that we have a doc here locally who believes my dd8 needs IVIG, what I have been wanting for her for a year, I am worried. She is doing so well right now. Her recent round of cefzil in addition to her zith has really helped her and she's doing so well. But she's still reliant on abx. She can't get off the zith without back sliding. This is what is prompting our ped. neurologist to get her IVIG, even if at a low dose. I want it for her but I am afraid of what might happen. I know that I can't rely on the abx forever so I need to go to the next step. It's still scary though. I don't believe I was a parent before pandas for long so I don't even know what that would be like. I remember when my dd7 was born and she had a hemangioma birthmark on her forehead. The year before, I had just had a premature twin birth and one of my children died. So I thought can't I just have one child who doesn't have anything wrong with them? At the time, if I had known about PANDAS, I would have been happy with "just" the hemangioma birthmark, even though all her baby pictures have a huge red, puffy mark above her eye. dcmom, you got me all melancholy! Susan

That made me think of leach therapy so I googled it.... http://www.leeches.biz/hirudotherapy.htm Interesting, although the idea of leach therapy is not very pleasant! susan

Pandasquestions post about fear really got me going about what happened to me today but I thought it was not helpful to post as a direct response to the question about IVIG fear but I just feel I have to post it here. I feel like it is a life changing event and maybe it will help someone but really I'm posting it because I just can't help myself. I had an experience today that really has helped me understand my children's fear. I had to get a tooth pulled. They hooked me up to the nitrous and gave me the gum numbing stuff. Everything was fine. I was OK. I don't get that scared of stuff, just stressed maybe and a little nervous but no big deal. I can stuff enough emotions to handle lots of stuff. The doc comes in and gives me two huge shots in my jaw and it was the most unexpected and painful thing EVER. Then there was some kind of nerve explosion in my face that was even worse. I started crying and could not stop. I was so scared now that if the shot was that bad, what was going to happen during the surgery? I know it was not reasonable, the shot was going to numb the pain. The worst was over. But my brain could not convince me of that. I could not calm down and could not stop crying. I wanted out of there. I really got, for the first time ever, what the kids must go through when they don't understand what is going on or what to expect or all the fears in their minds that are just so scary and overwhelming. It was a physical response that I could not control. And then the actual tooth pulling was not good, made even worse by the fact that I had worked myself up into a panic. But he could not get the tooth out. There was so much pressure and pain on my jaw over and over. I thought maybe he would not be able to get it out. Then what? Was I going to have to go to the hospital? Maybe my jaw would be permanently damaged. Maybe since he had to drill so much I was getting some horrible bacteria loose in my blood and I'd get Adult onset PANDAS. The nurse asked if he needed to put some antibiotic directly on the tooth, he said no, I tried to say YES, PUT IT IN THERE! Now I am terrified of any type of dental work I think. I'm ready to have my teeth just rot out of my head if I can avoid ever going back to the dentist (not really but you know...). The nurse held my hand and rubbed my arm. That was really good. I just wanted my Mom. I wanted my kids. I wanted to run away. I wanted someone to say "it's going to be OK. It's going to be over soon, I love you, I'm sorry" What have I learned from all this though? Maybe I'll be more understanding when my kids are scared or acting unreasonable about something that may be out of fear. Maybe I'll realize that the words I say really do help even if they aren't acting like it. Thanks for reading. I feel like I'll never be the same. But then again, I'm on a lot of hydrocodone. Susan

It's amazing how much can change in a day. She is not well this afternoon and evening. She is angry and mocking and worried about whether I am mad at her all the time again, whining, upset. I think it is from the prednisone but it feels like PANDAS. She is still very congested but no more fever and the noises in her chest are much better and she can breathe much better. My Uncle (family practitioner) said I could try to cut her prednisone dose in half tomorrow and see how she does and maybe keep it at that for a few days before getting her off. She should be doing 4 more days at the current dose. I don't know whether the prednisone would help her in the long run by sticking through it but it's not pleasant if that is what is causing her behavior. Susan

Thank you and she is doing much better today, yahoo! Regarding her toes, she will flex her big toe back and forth and back and forth. Her thumbs are like she's clicking a ball point pen over and over. She's always felt the need to crack her shoulder and ankel but the thumb/toe thing is new. We have done immune workups for her and so far she is a low responder but still in the normal range of everything. Susan

Thanks again my friends. DD8 is finally perking up and I feel that by tomorrow she will be much improved. She is already improving just very tired still. Susan

Thanks! I just ordered one for my dd. She will love it and it will help her a lot. Susan

I would think you need to stay on the biaxin longer and monitor the myco numbers but of course I really don't know. I am sorry you are going through this! Can you request more biaxin? susan

I am so sorry! It sure sounds like strep. When will you hear? I have not heard of that abx before. I know here in NC, there is a resistant strain of strep going around, so my doc said it's possible to get it even while on abx. HUGS!

Yahoo!!!

Shoot, I don't know! I did mention to the doc that I was giving her benadryl (along with zyrtec and her nasal sprays too) and he did not mention anything. I just looked up the side effects of augmentin and diffiucultiy breathing and confusion were two of the symptoms. Maybe her breathing got worse as a reaction (maybe) but the confusion I'm sure is what the doc was worried about. That describes her strange staring responses. It was like she did not hear or understand me. Susan

HUGS! I am sorry that he had to be hospitalized for his asthma! I am glad to hear that he did well with the flare after IVIG, especially since we will be there soon enough. DD does not have asthma, although when she was younger the docs were watching her for this. I hope she is not developing it now. I hope he is doing OK now. Susan

Thank you everyone! Your support means a lot to me. With her ongoing pandas issues, something like this seems all the more scary to me. Mama2Alex - Although I hope the steroids she's on will help her, it's good to know what to look for so I appreciate it. I remember now after you said it from years ago, counting her breathing. She used to get a chest infection with every virus. I will pay attention to that tonight. I have her sleeping with me so I can watch her. They did check her oxygen level which was very good this morning and I was surprised by that. Right now, her breath seems slow and even for someone asleep so I am feeling hopeful. I am so sorry for all the times Alex has had pneumonia!! Vickie, her last allergy shot was 3/22 so it's been a little bit. I know our immunologist will not be concerned by the shots or what has been going on but I plan on giving her an earful when we see her in May. I've been giving her benadryl but the doc did not mention mucinex although I was wondering about that. Thank you for your ongoing support and concern!! fcefxer, the doc said that pnemonia makes different sounds than bronchitis (first I've heard of that) but luckily my Uncle who is a family doc seems to agree. Thank you for the cyber hug, I need it today! I have been giving her benadryl a few times a day too and I do see this helping her. I am sorry for all the times YOU have had pneumonia too! Kimballot, she has had allergy shots now since January 18th. But it seems like she has been sick so much more since then and when she does get sick, it seems to last at least a week know which is not the norm for her. She is showing signs of yeast overgrowth already from being so jam packed with antibiotics. I have increased the probiotics way up and we are doing a topical cream for the itch. Susan

Took dd8 to the doc today, after a night of a lot of coughing she woke up this morning listless, almost non-responsive and was having trouble breathing. I was pretty close to taking her directly to emergency but she perked up enough to allow me to feel OK about waiting. The doc said that it had not turned to pneumonia but that she still had lots of noise in her chest. He was worried that she was reacting negatively to the augmentin becuase of her weird staring behavior. He switched her to cefprozil (Cefzil) and 8mg of prednisone 2x a day and an inhaler. So far, the inhaler is the only thing that gives her any relief. The doc said it might take 6-8 hrs for the sterioids to start to give her some relief in her chest. She looks horrible with dark circles under her eyes and now she's upstairs trying to go to sleep at 6:15pm and upstairs all by herself! So questions... She's never been on prednisone (or any steriod except nasal spray) before. I don't know what to expect. Dr. T. said no steriods for low immune responders for pandas treatment. I'll have to search for steroid posts to see what I might expect. Do I look for pandas improvement? Could this maybe be a blessing to try these steroids? Anyone using Cefzil for pandas treatment or have experience with it? Our mycoplasma and lyme tests came back negative. But I have not seen the actual results yet. Still waiting to hear from her neurologist about the strange thumb and toe movements (which I saw some of today but had not seen it since last Friday) and her upcoming IVIG. She's been sick for at least a week at a time every month this year so far. She's missed over 15 days of school since Jan. 1st. I wonder if her allergy shots could be involved. Susan

My girls wet the bed at night when they have strep too. It's one of my first signs that it's back. Susan

I gave her rice and a banana for dinner (luckily that actually sounded good to her!) and will send apple sauce and yogurt in her lunch tomorrow. So far tonight no more diarrhea. Luckily she's being patient with all my pill pushing I'm doing! Susan

I had my tonsils removed as a kid (5 yrs old, brother too at age 8) from too much strep and it did help me from getting it less. We didn't know about testing for carriers back then. My dad has been a carrier later in life so I wonder if he was back then too. I think testing the family is a good idea first but if the strep continues to come back many times a year, I"d have them removed. Susan

Good luck with it all. I'll be intererested in hearing how you feel about the Wellness Forumla. I've looked at that before. Allergies are hard on my kids too. I'm glad the biaxin has been helping. Susan

Dr. T recommended Biaxin for my dd too but I never heard back from him either I made sure to offer to schedule a quick consult to make it official since he has seen my dd's in his office but he never responded. Susan

I have to believe that twice monthly IVIG at a lower dose is better than no IVIG. It's got to be doing something, maybe just slower?? I hope the switch to the other brand helps. Hang in there. Things will move, he will start to improve or you will change your direction. I know you are tired and worn out. Keep coming here for support. You will get through this. Susan

Hello and welcome. I am glad you have found us, it sounds like you are in the right place. I found this forum a little over a year ago and it was the best thing that has happened to us, giving us focus and information on what is going on with my girls. I have 3 girls, 7 and 8 both with pandas. Your 8 yr old sounds like a combo of my two! Is he on antibiotics now for the strep? Did your doc give him a longer treatment than the usual 10 days? If possible, I'd keep him on antibiotics until your april 21st appt. I'm not familiar with that doc, does he treat pandas kids? GOOD LUCK to you!! Susan

dd8 has diarrhea now from the augmentin she's on for her bronchitis. Should an increase in probiotics take care of it? Can you use imodium to help? She's scared to go to school tomorrow since it's coming on rather fast. I got her a double dose of probiotics today and will continue that. On a side note, after 24 hours on the augmentin, although she is still sick and having trouble breathing at times, I am seeing a different girl. She is funny, light, talkative without whining, pleasant (mostly), reasonable (mostly, she is 8 after all ). I have seen some glimpses into upset and facial grimacing but it has been fleeting. She is still on the 500mg of zithromax that she needs to maintain. I am wondering if the augmentin will help kill whatever bacteria is hidden or lingering and help us further. I am grateful today no matter how long it lasts. Susan

Yes for sure! I think our neuro will treat if it comes back showing mycop. I hope to hear in another week. Susan

She was on 500mg of zith already when the cough started (has been at that dose for a few months) and we just added the augmentin yesterday. I am anxious for the test results! Susan