cynditk Posted July 12, 2011 Report Share Posted July 12, 2011 Melanie: Who is your doctor and are these treatments covered? How did you get covereage for such a high dosage of IVIG? Link to comment Share on other sites More sharing options...
Minnesota Mom Posted July 12, 2011 Author Report Share Posted July 12, 2011 T.mom My son was started on Prozac by the first child psychologist we saw that diagnosed him with PANDAS. The study doesn't want you to change anything before you are excepted and until 6 weeks after the first treatment. Link to comment Share on other sites More sharing options...
kimballot Posted July 12, 2011 Report Share Posted July 12, 2011 T.mom My son was started on Prozac by the first child psychologist we saw that diagnosed him with PANDAS. The study doesn't want you to change anything before you are excepted and until 6 weeks after the first treatment. Minnesota Mom - I just wanted to thank you for being in the study! My son had long-term PANDAS prior to IVIG and we saw some improvement immediately (tics, OCD) and then a huge exacerbation around 2 weeks with continuous, gradual recovery since. cyndilynntk- Welcome! I wanted to let you know that you can send a Personal Message to members if you have questions about doctors. The members may not come back to this link to check the post, so you may not get your questions answered. To send a PM, click on the member's name and then click "send me a message". When someone sends you a message, you will see a number next to your name in the upper right corner when you sign in! I am also sending this as a PM to you so you can check. Good luck! Link to comment Share on other sites More sharing options...
butterflymom Posted July 13, 2011 Report Share Posted July 13, 2011 (edited) = Edited October 5, 2015 by tampicc Link to comment Share on other sites More sharing options...
momaine Posted July 13, 2011 Report Share Posted July 13, 2011 Momaine: Who is your immunologist and where is he/she? What are you doing to treat the Lyme? Is your daughter stable/recovering yet? I sent you PM, but short answer is Dr. B in CT is her immunologist. Dr. J in CT is her Lyme doctor. She is taking Azith, Augmentin, Minocin, and tindamax for lyme/bart infections. I would say yes, she is stable, and FINALLY, slowly improving. It's been a long journey to get the right diagnosis and on the right meds. Not an easy path nor a quick fix, I'm afraid. Link to comment Share on other sites More sharing options...
mamapanda Posted July 14, 2011 Report Share Posted July 14, 2011 Hi Minnesota Mom, sorry to hijack your thread, but can you give more information about the study? Are they still looking for participants? My son meets all of the requirements and I'm hoping I can get him into it. How long will you be away from home for? Do you have to travel to CT? It says they cover travel but do they cover a place to stay as well?? Thanks so much and best of luck to you. Link to comment Share on other sites More sharing options...
3boysmom Posted July 16, 2011 Report Share Posted July 16, 2011 I too am surprised that they would allow SSRIs in the study. You would think that they would need to use the Scientific Process of controlled variables. BTW-Prozac made our PANDAS son much worse and the 2 PANDAS specialists that we fly to see each said No SSRIs. This is a bit surprising. I do hope that your child is doing better whatever it takes!!!! Prayers to you and welcome to the family. Link to comment Share on other sites More sharing options...
Minnesota Mom Posted July 17, 2011 Author Report Share Posted July 17, 2011 As far as the research and SSRI's, to be eligible for the study you can't change anything prior to being excepted. We were already on the SSRI and my son was still in an extreme exacerbation so I guess the SSRI's weren't a factor for us. What did you see with your child that made you think the SSRI's made the symptoms worse? I have read this from other parents and I just am curious. Why does the specialist say no to SSRI's? What is the reasoning? I'm just trying to gather up as much info as I can. Any input would be great. I too am surprised that they would allow SSRIs in the study. You would think that they would need to use the Scientific Process of controlled variables. BTW-Prozac made our PANDAS son much worse and the 2 PANDAS specialists that we fly to see each said No SSRIs. This is a bit surprising. I do hope that your child is doing better whatever it takes!!!! Prayers to you and welcome to the family. Link to comment Share on other sites More sharing options...
Iowadawn Posted July 18, 2011 Report Share Posted July 18, 2011 We have tried 2 different SSRI's about 2 1/2 yrs apart and they were a total failure--a disaster. After a short while they started doing just the opposite of what we were trying to help. Disinhibition, out of control behavior. Nasty. Doc says he can not be on these now. Dawn Link to comment Share on other sites More sharing options...
3boysmom Posted July 18, 2011 Report Share Posted July 18, 2011 (edited) As far as the research and SSRI's, to be eligible for the study you can't change anything prior to being excepted. We were already on the SSRI and my son was still in an extreme exacerbation so I guess the SSRI's weren't a factor for us. What did you see with your child that made you think the SSRI's made the symptoms worse? I have read this from other parents and I just am curious. Why does the specialist say no to SSRI's? What is the reasoning? I'm just trying to gather up as much info as I can. Any input would be great. I too am surprised that they would allow SSRIs in the study. You would think that they would need to use the Scientific Process of controlled variables. BTW-Prozac made our PANDAS son much worse and the 2 PANDAS specialists that we fly to see each said No SSRIs. This is a bit surprising. I do hope that your child is doing better whatever it takes!!!! Prayers to you and welcome to the family. Our DS11 (then 10) was put on Prozac when this first began and we never heard of PANDAS. He went from OCD thoughts to sadness and "better to be dead" thoughts. Also, no inabition (spelling?-did risky scary behavior with out reguard to getting hurt) I believe the doctors said no SSRI because we were putting the chemicals on the wrong problem---totally NOT what they said, but that is how I took it---I was so overwhelmed at that appointment, that most things sounded like Charlie Brown's teacher---blah, blah, blah! I guess it might be like taking an antibiotic for a viral infection hoping it will fix the problem like it did for a bacterial infection just because they both gave you a fever---POOR ANALOGY...sorry. I will say that once we added the antibiotics and slowly removed the Prozac, that was when things began to finally take a more positive turn. Best wishes Edited July 18, 2011 by 3boysmom Link to comment Share on other sites More sharing options...
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