How to Live Life with PANDAS- Last Post on ACN

[Guest alyssa]

Are you obsessed with ACN?

 

For a while, I took a break from the ACN forum and now I realize why, Quite frankly, I have PANDAS and all this forum does is depress me and make me live my life in fear. After posting a question about Prevnar and various other questions the past couple of weeks, what I've realized is the following: 1. The only answer you should listen to is from a licensed medical professional who is a specialist in PANDAS 2. Parents are misinformed 3. In the end the choice is mine.

 

 

I had one of the worst cases of PANDAS that doctors saw in 1998. I've lived twelve years from PANDAS and just wanted to share how I got through some difficult things before deleting my account permanently.

 

Here's some advice:

 

For all of you who are teenagers- with PANDAS, really STOP reading and go live. It is tempting to spend a ton of time researching and looking for possible treatments, but don't waste your life away online waiting for medicine that simply isn't there yet. It'll come with time, and when it's here, seek MEDICAL advice. Parent stories success stories are great, but parents ARE NOT doctors. Their child has a completely different genetic makeup than you do. Be careful, take antibiotics, stay away from strep and most importantly LIVE. What I've realized is that I have WASTED so much time on this stupid forum and google reading depressing heart breaking stories which scare me to death. Just remember that PANDAS is a curable disease with the correct immunosuppressive treatment and antibiotics. You can and will live a normal life. Remember there are people in a ###### of a lot worse situation than you. Don't sulk and feel bad for yourself. Accept what is and move on. It may sound cold but the sooner you'll do that, the happier you'll be. Find a specialist that understands the disease, have something in place if god forbid something were to happen and go really, go LIVE.

 

 

Problems I've run into living with PANDAS- perhaps you've had the same/perhaps not. Here's how I dealt with it:.

 

HIGH SCHOOL: Now keep in mind I'm a high school teacher now however, in high school all my parents wanted was to "help me" Sounds great right? NOT That meant IEP's being embarrassed, having to meet with teachers, and feeling different. All I can say is that it ends. It wasn't fun, but it does end. Now being on the other end of things as a teacher, all that parents want for you is the best. Therefore, in the back of your OCD, tic filled, trying to sort out PANDAS head, keep that in mind.

 

COLLEGE: The only advice I can tell you is don't screw up like I did. I took horrible care of myself, didn't want to deal with the fact that I had PANDAS and got sick several times. Naturally, it takes time to find yourself, but don't be an idiot in the process. Take care of yourself because there will be consequences. TELL ROOMMATES about PANDAS: All I said in the beginning was if you get strep throat please let me know so I could stay away. As the year passed and we got closer, I explained PANDAS, but be careful who you explain things to because people can be inconsiderate assholes. Not everyone is understanding, don't be naive. You'll know when you meet people who is trust worthy and who's not.

 

SUICIDE: At one point in adolescence did I think about it? Sure. I seriously thought about it. Living life with PANDAS is daunting and sucks. What stopped me? My religion. My mom raised me religious ( Catholic) and she always said that committing suicide was a mortel sin and therefore "I would go to ######." When putting things into perspective: living another 70 years with PANDAS (with increasing medical knowledge and help) or having my soul burn in ###### for all eternity, I chose PANDAS. Suicide isn't the right answer regardless, things will get better with treatment.

 

FAMILY- Truth sucks, PANDAS destroyed my family. Things are better now that I'm done with adolescence, but it's broken. I hope it's not the case for you but I spent years wondering what my parents relationship would have been like if I didn't get sick. I spent years feelings guilty, hiding my tics and OCD, and feeling indebted to them. I'm moving to Europe next year, it is not my intention to come back. I love my parents and my sister. I am very grateful for their support and would do anything for them but PANDAS changed my childhood and traumatized me. My main memory of my childhood is being in and out of hospitals and doctors offices. I plan on starting over and not looking back. Plus medicine in Europe is socialized, it's a ###### of a lot easier than the health care system here.

 

 

DATING: So hey, you're having a normal month, day even year and you've met someone. Things are looking up. So when do you break it that if you get strep throat you'll become a complete obsessive compulsive psychopath? Indeed it is a problem and does complicate dating. It's hard to deal with in high school and college when everyone wants to be normal and fit in, but it'll end. If someone truly loves you for who you are, they'll be able to handle a PANDAS episode and get you the proper treatment. If you can get through that, it will make your relationship stronger. Just make sure the person is 1) smart 2) understanding and 3) serious. Looks fade with time.

 

DATING- which eventually leads to questions about birth control and pregnancy.

 

As a girl- ESTROGEN MAKES THINGS WORSE FOR ME. I'm not a doctor, but I wouldn't recommend any form of estrogen birth control. I've taken progestin only pills, and had an IUD, that works fine. Natural progesterone worked well for me when I felt more anxious in the middle of my cycle.

 

Pregnancy- Don't know, but I have spoken with one women who told me that things got very bad for her during the first trimester and then stopped abruptly around 9 weeks. I personally am considering adoption considering my experience with PANDAS and the severity of it. Why bring a kid here only to suffer when there are plenty that suffer already?

 

 

Supplements: Well my parents had me on all sorts of things, at least ten- I narrowed it down to 6.

 

 

Pro-active things:

Steroid Bursts, Pulse Corticoid Steroids, Plasmapheresis (if things get bad)

Prophylactic Antibiotics

Quercetin

Tumeric

Fish Oil

Scerlo-Eze

Zyrtec

 

I DO NOT WILL NOT AND REFUSE TO TAKE SSRI'S because PANDAS is an IMMUNE DISORDER. The underlying problem is the IMMUNE SYSTEM.

 

Things I avoid:

STREP

VACCINES

Drugs with psuedofedrine (sp)

Allergy Shots (I just stay indoors during allergy season.)

 

FOLLOWING THIS I HAVE SUCCESSFULLY GRADUATED COLLEGE, HAVE FRIENDS AND LIVE A HAPPY LIFE. You can do what you want.

 

 

 

Now this is my last post. Next October I'm moving to Europe to teach and I hope to make PANDAS more well known over there. I wish everyone who suffers from PANDAS the best of luck. I cannot understand a parents suffering because I am not a parent, however for those who have PANDAS, Don't dwell too much on what you can't change. If you want to talk to someone who "made it" okay with PANDAS, send me a message. I'll keep my account open for a couple more days and I'll be more than happy to give you my email.

 

 

GOODBYE ACN

[Priscilla]

Are you obsessed with ACN?

 

For a while, I took a break from the ACN forum and now I realize why, Quite frankly, I have PANDAS and all this forum does is depress me and make me live my life in fear. After posting a question about Prevnar and various other questions the past couple of weeks, what I've realized is the following: 1. The only answer you should listen to is from a licensed medical professional who is a specialist in PANDAS 2. Parents are misinformed 3. In the end the choice is mine.

 

 

I had one of the worst cases of PANDAS that doctors saw in 1998. I've lived twelve years from PANDAS and just wanted to share how I got through some difficult things before deleting my account permanently.

 

Here's some advice:

 

For all of you who are teenagers- with PANDAS, really STOP reading and go live. It is tempting to spend a ton of time researching and looking for possible treatments, but don't waste your life away online waiting for medicine that simply isn't there yet. It'll come with time, and when it's here, seek MEDICAL advice. Parent stories success stories are great, but parents ARE NOT doctors. Their child has a completely different genetic makeup than you do. Be careful, take antibiotics, stay away from strep and most importantly LIVE. What I've realized is that I have WASTED so much time on this stupid forum and google reading depressing heart breaking stories which scare me to death. Just remember that PANDAS is a curable disease with the correct immunosuppressive treatment and antibiotics. You can and will live a normal life. Remember there are people in a ###### of a lot worse situation than you. Don't sulk and feel bad for yourself. Accept what is and move on. It may sound cold but the sooner you'll do that, the happier you'll be. Find a specialist that understands the disease, have something in place if god forbid something were to happen and go really, go LIVE.

 

 

Problems I've run into living with PANDAS- perhaps you've had the same/perhaps not. Here's how I dealt with it:.

 

HIGH SCHOOL: Now keep in mind I'm a high school teacher now however, in high school all my parents wanted was to "help me" Sounds great right? NOT That meant IEP's being embarrassed, having to meet with teachers, and feeling different. All I can say is that it ends. It wasn't fun, but it does end. Now being on the other end of things as a teacher, all that parents want for you is the best. Therefore, in the back of your OCD, tic filled, trying to sort out PANDAS head, keep that in mind.

 

COLLEGE: The only advice I can tell you is don't screw up like I did. I took horrible care of myself, didn't want to deal with the fact that I had PANDAS and got sick several times. Naturally, it takes time to find yourself, but don't be an idiot in the process. Take care of yourself because there will be consequences. TELL ROOMMATES about PANDAS: All I said in the beginning was if you get strep throat please let me know so I could stay away. As the year passed and we got closer, I explained PANDAS, but be careful who you explain things to because people can be inconsiderate assholes. Not everyone is understanding, don't be naive. You'll know when you meet people who is trust worthy and who's not.

 

SUICIDE: At one point in adolescence did I think about it? Sure. I seriously thought about it. Living life with PANDAS is daunting and sucks. What stopped me? My religion. My mom raised me religious ( Catholic) and she always said that committing suicide was a mortel sin and therefore "I would go to ######." When putting things into perspective: living another 70 years with PANDAS (with increasing medical knowledge and help) or having my soul burn in ###### for all eternity, I chose PANDAS. Suicide isn't the right answer regardless, things will get better with treatment.

 

FAMILY- Truth sucks, PANDAS destroyed my family. Things are better now that I'm done with adolescence, but it's broken. I hope it's not the case for you but I spent years wondering what my parents relationship would have been like if I didn't get sick. I spent years feelings guilty, hiding my tics and OCD, and feeling indebted to them. I'm moving to Europe next year, it is not my intention to come back. I love my parents and my sister. I am very grateful for their support and would do anything for them but PANDAS changed my childhood and traumatized me. My main memory of my childhood is being in and out of hospitals and doctors offices. I plan on starting over and not looking back. Plus medicine in Europe is socialized, it's a ###### of a lot easier than the health care system here.

 

 

DATING: So hey, you're having a normal month, day even year and you've met someone. Things are looking up. So when do you break it that if you get strep throat you'll become a complete obsessive compulsive psychopath? Indeed it is a problem and does complicate dating. It's hard to deal with in high school and college when everyone wants to be normal and fit in, but it'll end. If someone truly loves you for who you are, they'll be able to handle a PANDAS episode and get you the proper treatment. If you can get through that, it will make your relationship stronger. Just make sure the person is 1) smart 2) understanding and 3) serious. Looks fade with time.

 

DATING- which eventually leads to questions about birth control and pregnancy.

 

As a girl- ESTROGEN MAKES THINGS WORSE FOR ME. I'm not a doctor, but I wouldn't recommend any form of estrogen birth control. I've taken progestin only pills, and had an IUD, that works fine. Natural progesterone worked well for me when I felt more anxious in the middle of my cycle.

 

Pregnancy- Don't know, but I have spoken with one women who told me that things got very bad for her during the first trimester and then stopped abruptly around 9 weeks. I personally am considering adoption considering my experience with PANDAS and the severity of it. Why bring a kid here only to suffer when there are plenty that suffer already?

 

 

Supplements: Well my parents had me on all sorts of things, at least ten- I narrowed it down to 6.

 

 

Pro-active things:

Steroid Bursts, Pulse Corticoid Steroids, Plasmapheresis (if things get bad)

Prophylactic Antibiotics

Quercetin

Tumeric

Fish Oil

Scerlo-Eze

Zyrtec

 

I DO NOT WILL NOT AND REFUSE TO TAKE SSRI'S because PANDAS is an IMMUNE DISORDER. The underlying problem is the IMMUNE SYSTEM.

 

Things I avoid:

STREP

VACCINES

Drugs with psuedofedrine (sp)

Allergy Shots (I just stay indoors during allergy season.)

 

FOLLOWING THIS I HAVE SUCCESSFULLY GRADUATED COLLEGE, HAVE FRIENDS AND LIVE A HAPPY LIFE. You can do what you want.

 

 

 

Now this is my last post. Next October I'm moving to Europe to teach and I hope to make PANDAS more well known over there. I wish everyone who suffers from PANDAS the best of luck. I cannot understand a parents suffering because I am not a parent, however for those who have PANDAS, Don't dwell too much on what you can't change. If you want to talk to someone who "made it" okay with PANDAS, send me a message. I'll keep my account open for a couple more days and I'll be more than happy to give you my email.

 

 

GOODBYE ACN

 

 

 

I really appreciate this post, and I hope I didn't upset you about the vax post. My sarcasm wasn't directed at you, but our vaccination program and medical community that pushes it on us, which ironically I work for as a nurse. You have confirmed what I believe about having my dd live as normal a life as possible, that is why I tried to take her off all meds (had to restart abx this week though) I have kept her mainstream in school, and I try to help her find humor in her quirks (sometimes it works, sometimes it doesn't, maybe you could enlighten me there, is it is more harm than good) I think your advice to the teens is priceless, and it seems for my dd the more she is out from under the microscope, out playing with her friends, at school, the better she does- of course she lets it out at home, but that's ok, as long as she can find SOME happy time. Maybe she hears me talking on the phone to family about it (even though I try not to when she is around) and this makes home a sick place. Anyway, I am glad you have been so successful- gives us hope. I hope a time will come that you feel more comfortable with your family, I pray all the time that this won't completely tear apart my relationship with my dd as she grows. So I wish you well on your journey, and again, I am sorry if something I posted upset you, but you are right, get off here, go out there and LIVE!!!!!! Lord knows you deserve it

[Guest alyssa]

I'm glad that my post helped you. I personally am not capable of joking about PANDAS, it destroyed my childhood. However if that works in your family as a coping method, I certainly don't judge, I just would never be able to do it. In adolescence, I would have hated it because I was trying to figure so much out and there was much less known. ( this was before Cunninghams research) the doctors told my parents that PANDAS could cause permanent brain damage so I really spent A LOT of time thinking about that. Concerning the Prevnar, your response was the most helpful of all. I'm just scared and wouldn't want hurt my child if I were to have one.

[Mary M]

Alyssa,

 

Thank you for sharing your insights. I wish you well as you journey away from PANDAS and into a fulfilling life. My dd12 has already declared that she will not have children as she wouldn't want them to have PANDAS and will adopt as there are emough suffering kids in the world...I find it profound that you, as an adult, share the same feelings about having children. May your path be one of beauty and light,

Mary

from Michigan

[thenmama]

xxx

Edited March 26, 2013 by thenmama

[Worried_Dad]

Alyssa:

 

Thank you so much for your candor, for the invaluable insights you've given us parents, and for the hope you give us that our kids, too, can recover and reclaim their lives. You have contributed so much to the discussion here... but I totally get why you need to escape the daily PANDAS stories. I've been cutting back on my "forum obsession" too, lately.

 

Your posts have really, really helped many of us, parents and patients. Hope you have a wonderful experience in Europe and can start completely fresh there, with no "PANDAS baggage" to weigh you down.

 

You will be sorely missed!!!

[nevergiveup]

Alyssa, Thank you for that post, Go girl! U are so right about it all. My dd is 14 and has suffered through pandas for 7 years, we are on the same path, Living Life with Pandas. Thank you for your insite after reading your post I will now be a better parent to my teenager. You would be an awesome motivational speaker at the TS and OCD conferences in reference to living with Pandas. You could help so many families and teenagers by sharing your story and "philosphy on life".

[SarahJane]

I know you wrote this to the PANDAS "kids", but you knew all us PANDAS parents would read it too.

 

I'm excited for you! Sounds like you know what you want and are making great strides to get it. (Actually, it sounds a bit more like you KNEW what you wanted, MADE great strides to get it, and GOT IT!) I must've joined the forum during your "break", but I truly enjoyed this post from you. Thanks for giving us a few days on here to commend you for your insights and to wish you luck on your life's journey. Thank you very much for the reality check too! BEST WISHES!

[Johnsmom]

Good luck on your journey. I hope you find peace and happiness. Thanks for sharing.

[EmersonAilidh]

This post made me cry like a ####ing baby. I've only talked to you once before, but I really hope there's some other way to reach you besides ACN since you're getting off the forum. I hope you have tons of success in Europe. You're an inspiration & I only hope I end up half as well off as you do. I know this forum is depressing & I shouldn't spend so much time on it, but I don't have anything else. I don't take the parent's advice over that of doctors (I say that like I have a doctor), but as pathetic as it is the people I've "met" on here are the only ones that can even come close to understanding. I don't have friends. When I need to talk I come online to vent to a bunch of Moms I've never met before. The more I think about it the more pathetic I feel cos I'm pretty sure even they're getting tired of me. I can't stand myself. Good luck, but I really hope I get to talk to you again.

[T_Mom]

Emerson-- There will always be people on here that are happy to hear from you (and never tire of getting your insightful updates) and we are here to support what you are going through--For you too Alyssa.

 

We are all seemingly affected by Ps in different ways--but the common thread is that we have been, or are affected. The support of the forum has been incredible to our family --

 

Alyssa, update us now and then and let us know how the travels go--

Safe travels--and all the very best.

[NancyD]

Everyone draws upon inspiration and support in different ways. Whether it's from family members, friends, their community, church, or this forum. PANDAS is so misunderstood by the professional community, so it's no wonder that our friends, family, and community understand even less. So Emerson, whatever support and inspiration you can draw upon us in this forum, please lean on us, vent, cry, or just say whatever you need to say whenever you need to say it. By the same token, we too draw inspiration and support from you. You have brought so much insight, hope, sensitivity, and delight to so many of us. Living with PANDAS and Lyme is very difficult and it's important that you have others who understand what you are going through with whom you can connect and share. You can still participate in this forum and live your life to the best of your ability. Some weeks and months may be more, some less. Emerson, you are an amazing young woman who has more smarts and insight in your little pinky than most teenagers have in their entire body. Keep leaning and drawing inspiration for as long as you need. And day by day, week by week, month by month, you will begin to live the kind of life you always wanted. There are so many ways you can be fulfilled and so many ways you can live your life. Only you can define what works for you!

 

Alyssa, all the best to you in your new life! Please know you can always come home again to this forum...whether to check in and update us or to lean on us. Many of us (now friends with one another) will still be here drawing inspiration and support from one another.

 

Nancy