TexasDad Posted January 25, 2011 Report Share Posted January 25, 2011 Never thought we'd end up here, but glad this forum exists. Let me say that my heart goes out to so many of you parents! As trying as our experience has been, I know there are others who fight a war almost daily. You are to be commended. I've found a new group of heroes. PANDAS practically leveled our lives like a bomb approx. 3 months ago. Literally overnight, our son developed pronounced motor and verbal tics, severe anxiety (including separation anxiety), OCD, ADHD...we were absolutely confounded. I know information is king in the battle against this disease, so I'll provide a brief medical and case history. The experiences of others have often provided the most up-to-date and reassuring information we were able to find precisely when it was needed most. My hope is that what I share might do the same for another. As far as any familial connection goes, we have a very few (maybe 1 or 2) instances of mild OCD and tics on my mother's side. Counting steps, high need for organization, repetitive clearing of one's throat...nothing to write home about. None of us ever gave it much thought. We thought it was just a little eccentric. Then, boom!...overnight. We couldn't have been more bewildered. We were fortunate to have one of my wife's friends mention something she saw on TV about sudden onset tics, OCD, etc. Something called PANDAS. The short story is that our pediatrician was somewhat familiar, willing to do a little research, and knew what to say to the head neuro at Children's Medical Center, Dallas to get our son admitted the day following our visit and only one week since the onset of his symptoms. Didn't mess around with abx, went straight to IVIG. A couple of severe terror/psychosis episodes immediately following IVIG and concern about a small lesion on the frontal lobe of his brain (MRI) produced another admission and 5-day course of IV steroids followed by a 5-week tapered oral dose. Had a spinal tap and tons of blood work to rule out every other possible condition (except Lyme, I think). Symptoms came on the day before Thanksgiving. First discharge was 12/3. Second discharge was 12/10. Gratefully, we were able to start school half-time 2 weeks ago and full-time doesn't seem to be far away. The tics and anxiety were the most pronounced and which kept him away from school. Fears, bad thoughts, and the kid would stand outside the door while you were doing your business. He's 15 years old, a late bloomer (prepubescent), but had little or no history of Strep. The causative infection, however, was a severe Strep infection that he acquired from a root canal procedure that didn't go too well and produced pronounced swelling at his lower jaw even though he was on prophylactic abx. No sore throat, no high fever. Was successfully treated with a 13-day course of Penicillin. He is 95%+ back to his normal baseline across all his symptoms. He can even be away from the family for extended periods of time, although he doesn't like to be completely alone. We just couldn't be more grateful. It was very trying for him. More than once we dealt with tears, saying this thing is controlling his life and he just wants to be normal again. Just about the worst days we ever experienced as parents. You all understand. Looking back, however, we can say that of our four children he has always been the most challenged health-wise. It was always him that ended up in the hospital (Rotavirus, croup, aggravated asthma). Interestingly enough, about 2 years ago he started coming to us, a few times in tears, with anxiety about some of the weirdest scenarios we'd ever heard. Just thought it was part of his unique experience with adolescence. Neither my wife nor I had had any experience with anything similar before and a little counseling and prayer over a few days seemed to do the trick. Guess that was the beginnings of our PANDAS experience. If the kid ever had Strep before, we couldn't remember and it wasn't bad enough to seek medical attention. Who can say for sure? Post-treatment, I can say we've had our share of ups and downs. A couple of pretty scary terrors/psychosis, tic exacerbations, and just general not doing so well. These have been temporary (half-day at most) as one of our saviors in all this, Diana P., said they would be. But we have seen steady, deliberate improvement. It is something should instill hope in every one of you out there. Healing is rocky; more for some than others, but it can and does happen! As we enter the "rest of our lives" period, we don't know exactly what we will encounter, of course. He's on daily Penicillin VK (500 mg), Ibuprofen, and vitamins. Not exactly on track with most of what I've read about others, but it's working for us right now. We remain vigilant and always will be. That's about all I can think of for now. Will probably add more here and there as appropriate. Questions don't bother me at all and I haven't come across any that were too personal. I cringe at every new case I hear about, but I'm committed to doing my part and helping in any way that I can. No one should have to go through this. I want to see this disease eradicated!!! Link to comment Share on other sites More sharing options...
rockytop Posted January 25, 2011 Report Share Posted January 25, 2011 (edited) Thank you so much for sharing, especially as the parent of an older child who was (is) affected. I have two children devastated by PANDAS (11 &12) and I am so glad to see you were able to get this nightmare treated FAST. I pray that the flares remain temporary and it completely remits. One of my daughters just had plasmapheresis and I hope I can write an email like yours very soon. Diana P. has also been my savior/ cheerleader through this. Thank you so much for posting this. I really needed to read it today. Keep it up! Edited May 26, 2011 by rockytop Link to comment Share on other sites More sharing options...
kimballot Posted January 25, 2011 Report Share Posted January 25, 2011 Texas Dad - Welcome to the forum... I feel like I always say the same thing when someone new comes on - I am so sorry that you have to be here, but I am glad that you found us. After reading your post I am glad for both you and for us that you found us. it sounds like you and your family have managed to get to the root of the problem (no pun intended with the root canal) very quickly and you did not mess around finding treatment for your son. He is very fortunate. I have a feeling that we all are very fortunate, also, as you see to have quite a bit of fight in you and you seem wiling to use it to help your child and others. I hope you will continue to post with us and let us know how your son is doing and I hope you can find a way to use your skills and talents to help further the cause. I am the parent of a 13 year old who has had PANDAS since infancy - mainly with sinusitis. It is SO refreshing for me to read about kids who are treated promptly. Someday this will be the norm. I hope you and your family are able to reestablish a new level of "normal" in the near future. Best wishes and please keep us posted! Link to comment Share on other sites More sharing options...
browneyesmom Posted January 25, 2011 Report Share Posted January 25, 2011 Welcome TexasDad... glad you found us, but sorry it's under these conditions. I'm off to get some rest... leaving in the am to see Dr. B, but wanted to welcome you.... looking forward to getting to know you and I hope your son continues to improve! Link to comment Share on other sites More sharing options...
DebC Posted January 25, 2011 Report Share Posted January 25, 2011 Please feel free to join us at our next Dallas PANDAS Support Group Meeting. We just met tonight and meet the 4th Monday of each month, except for December. Message me for additional information! Link to comment Share on other sites More sharing options...
Fixit Posted January 25, 2011 Report Share Posted January 25, 2011 I also want to thank you for deciding to come and join the forum. Thank you for posting such a hopeful story. Continued healing for your son!! Link to comment Share on other sites More sharing options...
TexasDad Posted January 25, 2011 Author Report Share Posted January 25, 2011 Thank you so much for sharing, especially as the parent of an older child who was (is) affected. I have two children devastated by PANDAS (11 &12) and I am so glad to see you were able to get this nightmare treated FAST. I pray that the flares remain temporary and it completely remits. One of my daughters just had plasmapheresis and I hope I can write an email like yours very soon. Diana P. has also been my savior/ cheerleader through this, the worst time in my life. Thank you so much for posting this. I really needed to read it today. Keep it up! Thanks for the quick note. I'm sorry to hear about your two. Plasmapheresis has always intrigued me and it seems to produce very good results quickly. I too hope that's the case with your daughter and I'm glad my post provided some benefit to you, however small. Link to comment Share on other sites More sharing options...
TexasDad Posted January 25, 2011 Author Report Share Posted January 25, 2011 Texas Dad - Welcome to the forum... I feel like I always say the same thing when someone new comes on - I am so sorry that you have to be here, but I am glad that you found us. After reading your post I am glad for both you and for us that you found us. it sounds like you and your family have managed to get to the root of the problem (no pun intended with the root canal) very quickly and you did not mess around finding treatment for your son. He is very fortunate. I have a feeling that we all are very fortunate, also, as you see to have quite a bit of fight in you and you seem wiling to use it to help your child and others. I hope you will continue to post with us and let us know how your son is doing and I hope you can find a way to use your skills and talents to help further the cause. I am the parent of a 13 year old who has had PANDAS since infancy - mainly with sinusitis. It is SO refreshing for me to read about kids who are treated promptly. Someday this will be the norm. I hope you and your family are able to reestablish a new level of "normal" in the near future. Best wishes and please keep us posted! Thank you for the welcome and, yes, I have been known to have a little fight in me and I feel compelled to do what I can. I have a lot to learn, but I believe there will be those here and there that I will be able to help. As awareness and support grows and with everyone doing their part, I agree that fast, effective treatment will someday be the norm and this won't be such a nightmare. Hope your 13 yo is doing well. Link to comment Share on other sites More sharing options...
TexasDad Posted January 25, 2011 Author Report Share Posted January 25, 2011 Welcome TexasDad... glad you found us, but sorry it's under these conditions. I'm off to get some rest... leaving in the am to see Dr. B, but wanted to welcome you.... looking forward to getting to know you and I hope your son continues to improve! Thanks, Denise. I've read a number of your posts and was aware of your upcoming meeting. Kind of exciting. I hope it's whatever you need it to be right now. And thanks for sharing so much of your experience. Wishing you and your loved-ones well. Link to comment Share on other sites More sharing options...
advocatemom Posted January 25, 2011 Report Share Posted January 25, 2011 Texas Dad, Your story is nearly verbatim to the story of our 11 year old daughter. Symptoms started coming on hard and fast last August. However, looking back, I see a PANDAS pattern of wax & wane symptoms. Thankfully, we have another PANDAS family in our community who put us on track to proper treatment. Our daughter had been on a smorgasboard of SSRI's and she reacted terribly to them. She's having her first IVIg in 10 days! We can't wait to get it overwith! Thank you for sharing!! Link to comment Share on other sites More sharing options...
TexasDad Posted January 25, 2011 Author Report Share Posted January 25, 2011 I also want to thank you for deciding to come and join the forum. Thank you for posting such a hopeful story. Continued healing for your son!! So glad I found you guys and I really appreciate the warm reception. Thanks for the well-wishes. Courage to fight and courage to hope! That's what we need and I think it can be found here. Link to comment Share on other sites More sharing options...
Kayanne Posted January 25, 2011 Report Share Posted January 25, 2011 Welcome to the forum. I'm sorry you're here, but it is a great resource, so I am glad you found us. Thank you for taking the time to share your story, and I am praying for all of our childrens' continued healing. Link to comment Share on other sites More sharing options...
TexasDad Posted January 25, 2011 Author Report Share Posted January 25, 2011 Texas Dad, Your story is nearly verbatim to the story of our 11 year old daughter. Symptoms started coming on hard and fast last August. However, looking back, I see a PANDAS pattern of wax & wane symptoms. Thankfully, we have another PANDAS family in our community who put us on track to proper treatment. Our daughter had been on a smorgasboard of SSRI's and she reacted terribly to them. She's having her first IVIg in 10 days! We can't wait to get it overwith! Thank you for sharing!! Glad to hear your story and I know very well the excitement of even the prospect of getting the right treatment. How wonderful for you guys. We had the misconception (or blind hope) that our son would be "all better" after two days or so post-IVIG like we experienced with all the rest of his infections. It wasn't until later that we found all these wonderful parents who helped us set realistic expectations. Some do respond that quickly, but I think those cases are the exception. I can be patient as long as the healing occurs. Praying your daughter is one of those lucky ones that responds so quickly. Link to comment Share on other sites More sharing options...
TexasDad Posted January 25, 2011 Author Report Share Posted January 25, 2011 Welcome to the forum. I'm sorry you're here, but it is a great resource, so I am glad you found us. Thank you for taking the time to share your story, and I am praying for all of our childrens' continued healing. Thank you, Karen. Glad to be found. Link to comment Share on other sites More sharing options...
TexasDad Posted January 25, 2011 Author Report Share Posted January 25, 2011 Welcome to the forum. I'm sorry you're here, but it is a great resource, so I am glad you found us. Thank you for taking the time to share your story, and I am praying for all of our childrens' continued healing. Thank you, Karen. Glad to be found. Thank you, too, Kayanne. : ) Link to comment Share on other sites More sharing options...
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