Suzan

Wonderful news! Congrats and here's to continuing improvement! Susan

Oh DUH... How many times do I have to look at the website before I see the "buy now" link? Apparently abouyt 5 Susan

Hi there, I was reading up on this and am very interested. I was wondering, do you need a prescription for it and how much does it cost? I need to decide whether to try this or some other product that has Tumeric and Curcumin. Please update us on your progress with it. Thanks, susan

I am sorry things have felt so bleak but I am very glad you see some light. It is interesting since I was just reading up on Curcumin and Tumeric tonight looking for some answers myself since I have been so down lately goo. I consider it a sign and I will give it a try. Thank you for sharing what you have learned and good luck! Susan

Tonight I'll try to write some of the things that she wrote because I do have questions about them. I think I am the worlds worst student about understanding OCD! Susan

Thanks Smarty, I was hoping you would weigh in. What you have said is helpful. I think I am not to the emergency techniques section yet but I will be able to finish the book this weekend. This morning, when she started to get upset about her clothes and other things, I was able to say "I see you are getting frustrated, please use words so I will know what might be frustrating you". She was able to then tell me something (although still mean and nasty but at least it was words) and that seemed to difuse things a little. Also, I saw her getting upset when her sister told her to move over off of her side of the couch. I distracted her sister for a few minutes and told dd8 that when I was done with dd7, I was going to ask her to move. This really helped a lot to give her a moment to get over her inital reaction and slide over. Separation anxiety must be affecting us too because she does get upset if she gets left upstairs alone in the morning and I get impatient with her because I can't always just stand up there while she does whatever she needs to do. I'm going to try the repeat back technique tonight and see how that goes. She wrote a lot in her OCD workbook last night and I was surprised by some of them, that she even was aware that they might be issues for her. We are enjoying that time together so for that alone it was worth it. Susan

Thank's Susan.... That sounds just like what I think she is feeling, that we don't understand what she is going through......we did get the kids OCD handbook and started that last night. She really is enjoying it. This morning she asked why were were doing it since she didn't have OCD. So at least we are opening a dialog about it. I have not called any of those therapists you sent me yet. Babysteps I guess. I'll check out the link to the other books too. Susan

Thanks. At times like this I wish I was not single. She can't go in late and I can't keep her home since I have to be at work and there is no one to help me. I will try to think of more accomodations though that may help. Like maybe they will let her wear regular clothes instead of her uniform. But she already has a modified uniform (no collars and stretchy soft pants). I don't know why she's trying to wear other stuff this week. Probably the strep again, making her nutty. Susan

I totally agree with clothes not being one of my battles but it is one of HERS and then she wants me to fix the unfixable. I am hoping the book will give us some format to try to stay alive until we get her cured. Maybe it won't work. If so, I may just have to run away. Susan

I totally agree. I am hoping to gain skills so we can cope but we are still in the midst of trying to get her healthy. Until that happens, I don't believe we will be able to make any of it go away. Maybe just handle it better. She had a rough one this morning. Had to change her clothes 4 times but she finally got something that worked for her. But she was bossy and emotional and difficult. Not as bad as yesterday though, thank goodness. There IS strep in her school right now. Susan

LOL, something similar happened to us once but I let my dd go without a coat and hardly any clothes on (we weren't going to church though thank goodness). She got outside and froze and after that she learned to always wear her coat! That was dd7 though, she learns faster. dd8 knows she doesn't want to go out in the cold but everything has to be just right and I think she thinks it's usually my fault if it's not.

Oh I wish we could be late! This is a good reminder for me though to look at what my issues are, things that I think are important to me when really they aren't. I like to suggest to my dd that she gets dressed in the evening so she's already dressed and used to her clothes in the am. This works well but recently if she agrees to this, she ends up changing her mind and changing her clothes again anyway. I do recommend the book. If anything, it helps to get a new perspective and maybe new tolerance on your child's behavior. Susan

I have a question for those who have read The Explosive Child. I am not done yet so maybe I will still get this figured out. I do have to say I love the book. It was so nice to see in writing my child on the page and to read about other parents getting as upset as I get and hearing confirmation that the "regular" parenting skills don't work. I've known that for a long time about dd8. It has helped validate that the things that I have been doing just to cope are actually better for my dd (trying to reduce what makes her melt down and trying to anticipate it to avoid it) and I am learning the correct skills to hopefully make this more successful so we can all improve. I see the need for me to work on my own frustration skills so I can deal with her. But this leads me to my question. This morning she was doing well but I could see her starting to get upset about her clothes. She decided she would be cold so we looked for a long sleeved shirt to put under her shirt. She got that on, looked great, acted like she was good with it all so we kept getting ready to go. Then right before we were to get in the car, she looked at herself in the mirror and flipped out on the spot because the neckline of her shirt went up higher than she wanted (cry, whine, huffing, puffing, stiff body, stomping....). This higher collar is not something that would normally bother her so I don't know how I could have anticipated it. I immediately jumped from calm to about to freak myself because of her reaction and because it was a problem I was not going to be able to "fix" in 1 minute.. I suggested she take the shirt off and she went nuts. She wanted me to find another shirt that was not up as high on her neck. I know we don't have one in the right school uniform color (maybe not in any color) and we have to be in the car right then to get to the school bus on time. This set the stage for her OCD to really set in that the car was too small, her book bag too unorganized, it was sprinkling rain and all causing her so much distress. I spent my time trying to stay calm, which makes her think I'm mad because I'm not talking and breathing slow when inside I'm about to blow. So this starts her in on her "are you mad?" scenario which makes things worse. So, in trying to figure out The Explosive Child and the baskets and stuff, where does this fit in? What do I do if I can't anticipate it? Or if it's something that I put in Basket C but she still think's it's important. Is this something they would hope will get better after we practice everything else? I know I need to finish the book, there may be more answers in there for me. I do feel like we are already reducing a lot of frustrations but need to get better at it, but it's these out of the blue type situations that I feel like I can't anticipate or can't control because they are important to her and she won't let go of them and I feel so beaten on and can't fix it that there's no way out. Thanks for any thoughts you may have. Susan

Hi, sorry you are going through all this! My girls had strep that I believe gave them pandas so young that they never had sudden onset. Could he have had strep early enough to contribute to his overall symptoms? We did see sudden later with new strep infections, but since they had sensory issues, separation anxiety, adhd behavior, etc. it was hard to always recognize sudden. Their titers have never been significantly high even with documented strep. Susan

I am so sorry, we have a look too that speaks volumes. With the improvement you've seen, I have to hold on to the hope for you that this is just a bump in the road, part of the healing process. I remember when my dd had her first improvement where we actually had weeks of really great stuff. It was harder to go back than before we ever saw any improvement. I hope that you will see something better tomorrow. Susan

My dd7 has a PVC (Premature Ventricular Complex) and so far they are saying it is unrelated but I continue to think it is. Why, with all her other issues would this suddenly appear?! Susan

We saw improvement within 1 day but really good improvement around day 5. Sounds promising! Susan

Claire, I am sorry you are experiencing a regression. I hope the saw tooth recovery and/or exposure to strep is the only culprit. We are struggling very much right now. I don't know if it's the allergy shots or exposure to strep or something else. We see Dr. C on the 22nd and Dr. O in April. I'll be begging for IVIG, new abx and if neither help or if we don't get help, I will stop the allergy shots. If things get any worse, I'll stop them. Susan

Both my pandas girls had it and had a heck of a time getting rid of it. DD8 had it so bad in combination with other kinds of skin issues and undiagnosed strep. It lasted 7 months and it was really damaging to her since they were on her inner thigh They cleared up completely when she went on antibiotics and also went gluten free. I've always wondered if something else was going on. My dd7 has it now and it's not a bad case but they just keep coming one at a time. Susan

Glad you had seizures ruled out as my dd7 did that and she was having 100's of little seizures a day (found out caused probably by gluten intolerance). She has also mentioned that sometimes she will get "stuck" looking at something and she can't turn away. She has not complained of this since we started abx so I think it was related to her pandas symptoms. Susan

Nothing helpful for you but wanted to give you some hugs and support. I hope everything improves soon. Susan

It is my understanding that you can use probiotics while on abx and it will help keep the yeast back. If he takes the abx in the am, give the proboitic in the pm (or vice versa). I doubt you can keep candida away while on abx for many people but it will help with the symptoms and keep it from growing out of control. Susan

Thanks Michael, no what you have written is good, I am just trying to get to the bottom of her spasms, she's worried they are tics but they really seem just like a regular old spasm to me. She does get them in her upper thigh too.... Maybe we need some heavy metal testing. So much to test for! susan

Hi, ours is covered by insurance. Their office is regular practice and Dan!. Susan

Hi Michael, I am wondering, can you talk about your muscle spasm's? When do they happen and do you suspect why they happen? My 8 yr old has been getting muscle spasm's in her fingers, toes, hands, eye lids and under her nose the past few days and they are really bothering her. I'm wondering if it's PANDAS or a deficency of some sort. We don't see the doc until the end of this month. I don't know if they would be considered a tic or something else. So far, I have worried about tics but never saw anything develop more than a day here or a day there until these spams. Thanks, Susan