taytay

Started dd12 on ts-Plus Control last week and are still working up to max. dose. No noticable improvements yet. I am reading an anti-inflammatory diet book right now written by an ND. I'm going to try to implement gradual changes in our diet to possibly help dd. My quetion is about different herbs. The book recommends all kinds of different herbs for mixing to make different teas. Does anyone know if it is safe to mix herbs with Inositol and the other ingredients in in ts-plus. I also am wondering if it's safe to try Sam-e and 5htp together with ts-plus. I'm just now trying to educate myself on all these different supplements. We are trying to avoid taking prozac with has been recommended for our dd's severe OCD. The other PANDAS symptoms are much improved through abx. Thanks.

Our 12 yo dd has been doing better since being on abx but her OCD is still severe. The psychologist that we contacted about CBT said that she may need help with her anxiety before she can benefit from the therapy. We have been pressing and making a positive headway with breaking through her denial but the doctors do think she needs to be on at least a short term SSRI, prozac. I am trying to avoid this by looking into supplements that may work as well and be safer. Can anyone give me any feedback on Bonnie Grimaldi's products. I saw on the website they offer the ts-plus control, but it looks like all four of the different products would be beneficial. Has anyone used these. If you prefer you can PM me. Thanks! Ellen

My dh and I are both very relunctant to give 12yo dd prozac for anxiety associated with her severe ocd. We are as a family really trying to gently break through the barrier of denial she has maintained. She was diagnosed last April but was sick for a year and a half before we knew what was wrong. Her OCD has become very entrenched and even though she is better after almost 3 months of abx she is still very OCD. She is not making any progress in CBT in fact her behavior gets even worse when she is in the presence of any doctor or therapist. I am wondering if anyone has had any success with any supplements. We are very nervous about trying even a very gradual increased regiment of prozac. I think it is the fear and anxiety that needs to be lessened so she will be ready to work in therapy. I've heard of different supplements but don't know which ones are effective for mental anxiety and fear. We are considering traveling to Florida to the Rothman Center too but want to get dd in a better place first. Thanks.

Hi, My dd has been on antibiotics for PITANDS since the end of April. She has improved greatly but she still has severe OCD. She has not been able to benefit from CBT because her fearfulness of facing it has kept her anxiety very high. She does many normal things now but won't acknowledge her illness (except a few times to her sister) and barely speaks in therapy sessions. The psychologist asked that we allow for a psychiatric evaluation an the psychiatrists want her to take prozac to get her anxiety and what they described as depression down so she can work in cognitive-behavior therapy. Are there alternatives to prozac, I'm very nervous about starting her on it. But I am not sure what else to do. I am talking to her everyday about her illness and reassuring her that she is going to get better and how exciting it is that we know what is wrong now and can work toward getting better. Any counsel by those who may have experienced something like this would be appreciated. Thanks,Ellen

My 12 year old dd was dx with PANDAS in March of this year and is continuing on abx under the care of Dr. T. Her second round of lab work shows that she is improving but he is continuing for the next few weeks anyway on abx. He recommended CBT for her OCD but we are really struggling with her total denial of her symptoms. She is better in so many ways but still locked into O-C behaviors that interfere with her daily life. She has never really been herself in the last almost 2 years and it is frustrating to not see more progress after finally getting a dx and treatment. We consulted a cbt therapist and she could not breakthrough Taylor's denial. Her symptoms have actually worsened after my attempts to talk directly about OCD. Although, Taylor has admitted she "used" to have O-C "really bad." I have heard on the forum of the intensive outpt. OCD programs in Maine and FlA. and wonder if they would be better able to help Tayor confront her O-C head-on. We are all suffering and I don't know how to help Taylor with this. Any suggestions would be greatly appreciated.

Thank you for sharing your experience so far. Our 12 year old daughter is doing better on abx but is still struggling with OCD issues and is in denial. I have contacted Dr. Storch and am considering traveling from Texas to Florida for treatment. I want the very best for my dd. We were seeing a CBT therapist here but she could not get through Taylor's denial and I could tell after three sessions she didn't know what to do to help her. I am trying to get in to see another psychologist here but don't know if once a week will be a good start for Taylor. Hope your experience continues to be a positive one.

Hello. We have just started my daughter with a therapist who specializes in cbt for her ocd. Dr. T is her neurologist. Does anyone know how I can get the name of a pediatrician who acknowledges Pandas? It would be great if we had someone local to see Taylor and can consult with the neurologist and therapist. We have fired her pediatrician because he never has checked on Taylor's progress after telling us that she had an emotional disorder over a year ago. We live in Ft. Worth,Tx. Thanks!Ellen

12 year old daughter is on second abx after being dx about 6 weeks ago with PITAND, the dr. saying she is PANDAS prone. She is presently on day 20 of CIPRO. She has improved but not remarkably. Much of her OCD is mental but besides having a softer expression and her eyes looking brighter her OCD has not improved that much yet. Is Augmentin ever used for treating PITAND? It's hard for me to know if the abx is working and she just needs more time or if she should switch abx.

Thank you for sharing. That is what I was imagining it to be like for Taylor. I guess her dad is as much denial as our daughter Taylor is. I may try to give my husband info. about cbt and tell him your experience. Thanks, Ellen

Our daughter has been ill for about a year and a half. She was just diagnosed recently and is now on day 12 of second abx, CIPRO. She has shown some improvement the last few days and we are hopeful that she is responding to the abx. We had an appointment for an eval. for tomorrow to address her OCD issues with a psy. who specializes in CBT with children. My husband has cold feet now saying that he is afraid we will lose the ground we've gained over the last few weeks if we take her to a psychologist now. He is concerned she will think that we think she's crazy (she does deny her symptoms) and may withdraw or her symptoms worsen. I agreed to wait a few more weeks to see if she does indeed respond to the abx. My question is has anyone else had any experience in this particular area. Taylor is 12 now and she has been ill for a year and a half. It is very hard to see her suffer and I'm just eager now that we know something that we proceed to get her help as quickly as possible. My husband was hesitant at first when I told him she may have PANDAS. Perhaps I could give him some information on OCD and how to help children who suffer with it. Any suggestions?

Thanks all of you. I knew it wasn't going to help to force her to acknowledge something was wrong but knowing other children with PANDAS act defensive helps me to understand that it's the illness and not just my daughter choosing to act this way which really helps. Thanks for all the suggestions too.

My now 12 year old daughter has just been diagnosed with pandas/pitands. We have just consulted with Dr. T and he has put her on a course of antibiotics. I tried to talk to her about why she is taking the medicine. She again denied that anything was wrong with her. It is so sad and frustrating. She once was a very articulate, vibrant 10 year old girl and now her appearance is odd and disturbing and all along even in the most bizarre of her actions she acts like nothing is wrong. Does anyone have any advice about how they communicate hope and reassurance to their child? I know my daughter is suffering but she won't acknowledge anything is amiss.

Wow! Well, Taylor has been ill for well over a year and I didn't realize the OCD behaviors as such at first but she became quieter with the cough and did not want me to leave the house without her. She finally admitted she was afraid something would happen to me. When she finally after several months improved and would allow me to leave without her she still would say goodbye repeatedly and would often follow me out to say "bye" one more time as if the other times weren't quite right or enough. As she worsened she became more withdrawn and started wearing the same clothes over and over, did not like to be embraced and couldn't stand to have her head touched. She has pretty long blond hair and suddenly she wouldn't brush it or take care of it. She is still doing this now. She made comments that she was not good enough to do a Bible study with us or read her bible any more but this has improved gradually. Just recently her sister told me that she stared off into space while they were playing and ignored her sister while she was talking to her and then moved several feet forward and touched the wall and then told her "I'm sorry, I just had to do that." She does seem better in that she wants to do things again and enjoys certain activities but she seems to have lost herself and doesn't know how to be Taylor any more. She used to tear up or remove pictures of herself from before she became ill. She didn't mind pictures from when she was a baby or small child but more recent pictures she couldn't stand to look at. Now she is more accepting of the change and I want to help her regain her personality back.