Parental Healing

[thereishope]

For those that don’t know my back story, I have a 7 year old with PANDAS. Sudden onset on his 5th birthday. Overall, 3 strep triggered exacerbations and use to also be affected by viruses and allergies. He’s currently in remission (knock on wood) and has been so for over a year.

 

Like many of you, our family, and being a stay at home mom…specifically me, dealt with a lot while my son was sick. I feel I had/have Post Traumatic Stress Syndrome, but I do find it’s getting better. I find that my mind is separating me more from those memories. This is even with me going on here daily, doing the fb page, and talking about PANDAS daily. I still have them, but they seem out of body now. Don’t get me wrong, I still cry, but my mind has also found a way to cope with it and I still worry about him all the time. Now, I actually find myself having to look up timelines and journal entries because I cannot remember all the details. For my son, he doesn’t remember any of it. He knows strep can make him act odd because I told him that. I’ve told him to tell me if he feels like he needs to do things and can’t control it or doesn't know why, but he doesn’t remember (and this boy has an awesome memory otherwise). His mind has protected him. I know this is not for every child, but I am thankful for it.

 

So, I’m not quite sure why I am writing this, but just to share how things can get better, even from the parental point of view.

[fuelforall]

VICKI

YOU NEED THAT SUPPLEMENT I MENTIONED! PM ME if YOU AREN'T SURE WHAT IT IS!

 

MICHAEL

[Tamistwins]

Thank you for sharing Vickie. My twins are 7 too and have also been diagnosed at 5 even though I realize now that the struggles I had at their younger age was pandas. I am so happy your son is in remission. I pray for that day to come for my children as well as everyone elses.

[kimballot]

Vickie- Thanks - I needed this!

[Priscilla]

I am glad you are healing. We are still riding the roller coaster but the hills are not as dramatic (as long as we are on abx at least) I have found that I have entered another phase though. One of acceptance that we have had to change. Our lives will never be the same. There are no quick answers. Taking everyday one at a time, and testing/treatments one step at a time has really helped our whole family- including dd. While she is still sick, she lives a pretty normal life, with special differences- and a few more dr visits than most kids her age. I have found that letting her be a kid, while I do all the PANDAS stuff, and only involving her when necessary (to take abx or have labs drawn),she has really decreased her stress level and it helps her improve- she will even open up about her issues here and there (she explained last night that she is really going to start focusing on overcoming her fears- makes me so proud). So my point is, for us, a level of acceptance along with pure faith, has allowed us to actually turn a corner and still live a happy life. Best to you and your family.

[MomWithOCDSon]

Vickie --

 

Ever since I came to this forum . . . more than a year ago now . . . you have been a bastion of information, support and common sense for me and countless other members. I am so appreciative of how selfless you've been with your time and energy, not only here but also when it came to the Pepsi Project and probably a half-dozen other endeavors you're up to your eyeballs in but I know nothing about!

 

I'm so sorry you've been suffering PTSD, but very happy that the cloud seems to be lifting and you're even experiencing that "maternal amnesia" that helps us forget the tough times enough so that we'll brave jumping into the fray again (why else would any of us go through childbirth over and over and over again?!?! ).

 

Honestly, I can't imagine having been in your shoes. I, and seemingly some other parents here, was given the dubious gift of having my child's illness creep in over time, rather than slam me between the eyeballs overnight. At least I could sort of see it coming, even though I had no idea how bad it could really become until it hit its zenith last fall. But I did have the advantage of having some "breaking in" time, some early therapy and research in terms of some of the behaviors that PANDAS brings to the table, etc., rather than waking up one morning with a raging, sick child having put a calm, healthy one to bed the night before.

 

Your PANDAS experience seems like a war in which you're enlisted without having known it. Somebody drops a bomb on your house one night, and there's no turning back. And when that bomb hits, and for the period after the primary destruction, it's a horrible mess. There's no rest, no solace, no normalcy. That would give anybody a case of PTSD.

 

Cheers to you for sharing yourself with all of us so selflessly, and for coming out into the light at the end of the tunnel! And many thanks, once again.

[PhillyPA]

I had a bomb dropped on my house. April 30, 2007. I still live in the rubble. I had no idea what happened to my sweet 5 year old. It just happened - overnight.

 

We lived with it for 2.5 years without a diagnosis. Imagine that - 2.5 years with zero support. No idea. The hospital(CHOP) said it looked like pandas. His titers were low. They said it can't be pandas. It was dismissed for 2.5 years.

 

When he first got sick I was so scared that when I went to the bathroom...my waste product was pure white.

 

I don't even think I am at the PTSD stage. I think you only get there after your battle is over. I still in fight mode. I suffer from Current Stress Disorder. I look forward to Post. At least it is over.

 

My son is now 8. I am grateful that it was only 2.5 years and not 10 years without a diagnosis. It is my hope that he is not messed up forever.

[thereishope]

PhillyPA,

I can realte to only part of what you went through. Like you, I had no support during his exacerbations. I never looked for a forum since I never needed anything of the sorts before for my kids. So, I honestly thought for that time that my son was rare, that there weren't many like him. Boy, was I wrong. I look back and realize if I knew then even half what I know now,his suffering could have been less, his recovery could have been faster and perhaps he would have only had one exacerbation. I hope you know there are people out there you don't even know about fighting to get your son the help he needs and help him to get better.

Edited January 14, 2011 by Vickie

[Megs_Mom]

Wow, I really want to post on this thread, and I find myself unsure what the heck it is I want to say. It made my mind race in so many decisions.

 

OCDMom, I am never sure what is better. We are one of the bombed families. But I see that as fortunate in some ways, because it was always clear that something happened. It took us far too long to figure out what to do about it, but it did give us some level of confidence in the treatment at the end. But it did leave me with the feeling that it could happen again at any time. I did not see the bomb coming the first time. I guess now, at least we are in a war. I think that may be where the challenges come in for parents, even in recovery. I'm not sure if I am truely PTSD - although I do joke about it. But I do have a short trigger on reacting - I can literally feel myself turning into a different mom, in a matter of seconds. Normally, I am not a helicopter mom. But when I see signs of OCD, it's like a switch flips in my brain, and I find it hard to explain the mode that I go into. I guess that is good, in part, as it is a mode that is very efficient, and doesn't leave much room for emotion. It's a mode of coping, supporting, empowering, finding solutions, that leaves very little room for anyone or anything else. I so admire those of you with more than one child, as I really cannot imagine dealing with this with a sibling, nevermind with 2 or more children that are suffering.

 

PhillyPA, you broke my heart tonight. I'm so sorry, and I hope you get to the "post" sometime soon.

 

With over a year of recovery under our belt, I agree with Vickie - the worst is fading a little. Sometimes I have to go back & read to really remember what happened. But then other times, I meet with a new pandas mom, and a flood of memories come back, and I am astonished all over again that we have made it to where we are today.

 

I find myself admiring my daughter all the time - things that she does now with great joy, that would have been impossible with PANDAS OCD. I wonder if I will ever stop being happy when she does something gross, or brave, or even something simple like eating an ice cream sundae or sitting on the floor in an airport terminal.

 

I am thankful for the friends I have made here, for those parents that reached out to us, for the researchers that really care for our kids and are fighting against the odds for funding. I am grateful for the band of little girls my daughter met at the OCD conference, who made her feel normal again. I so thankful everyday to those of you who are fighting for research, education or support of this disease, often without anyone knowing your name.

[momofgirls]

Vickie,

It sounds like you are beginning to heal. Thats a great start and nice to hear mom's can recovery too. I know you all can relate when I say that I am forever changed but I do hope that eventually time will fade some of the scary memories.

So great that your son is doing well and doesn't remember a thing!

kim

Edited January 15, 2011 by momofgirls

[nevergiveup]

Vicki, You have done so much for so many on this forum, always greeting newcomers, supporting mothers in need, and of course all ur effort with the pepsi project. Its always a very comforting part of my day, reading your supportive words to everyone. Thanks!

[KeithandElizabeth]

I want to ditto what nevergiveup just said about how much energy you give to new parents who are so scared and how balanced you always seem when the forum can become tense.

 

Thank you for sharing.

 

Elizabeth

[LNN]

Nancy said it best as far as summing up how grateful I am for Vickie's voice of reason and for her just wanting to help. Sometimes I'll see a new member post in a time of distress and have to take time to think about what to say (or muster up the energy)- but there's Vickie, welcome mat out, offering words of comfort and support and reassurance

 

I'm not where Vickie is, or Meg's mom - we're only a few months into feeling like the worst is behind us for my son and now I find myself facing a new journey with my daughter. I think I was on the verge of a real nervous breakdown in September. I then went through a period of depression and exhaustion. It was all I could do to make a grocery list. Forget about cleaning the house. You don't get to be ahem - middle aged - without suffering a few traumas in life. But nothing prepared me for this journey. Talk about challenging everything and everyone you once believed in.

 

Part of me looks forward to forgetting the gory details. But like Meg's Mom said, sometimes you encounter a trigger (in my case, my daughter's escalating symptoms), that put you immediately back into "response mode" and in an instant you're in a flashback. The other day, my daughter was crying and struggling with anxiety waiting for the school bus. The other kids were confused and asking her what the big deal was. You could see the body of the other adult at the bus stop stiffen, with a disapproving look on her face. "Man" her body language said "what a cry baby." Two years ago, the pain I felt when my son went thru something similar - I was secretly begging my son to be "normal", wishing we could just be like other families. Now, I honestly could give a hoot. Time stops, and all I care about are the needs of my daughter. It is like being in combat and my focus is only on the enemy (OCD). So I start quietly singing the "I'm not scared" song and my daughter and I start stomping on blobs of snow, pretending they're worry fairies. In a strange way, I'm actually glad we're not like other families. The neuropsych diseases suck, but it's like a laser and really instantly focuses you on what - and who - is important. So there are gifts in this journey and that's what I'm trying to burn into my memory.

[JAG10]

Very interesting post, Vickie. I've always thought it ironic that you have a set of parents who, for the most part, are predisposed to anxiety and functional OCD, AND THESE ARE THE PARENTS THAT GET THE KIDS YOU CAN'T STOP WORRYING ABOUT!!!!!

 

God bless us all!

[eljomom]

I ditto that JAG10!! I have been thinking the same thing lately---how most of us on this board are probably geared to be a little "obsessive" about things....and to have this to obsess about. I have tried to make a deal with God---take this away and I swear I won't obsess about anything "normal" again....

 

Reading these posts almost brought tears to my eyes, realizing that the timeline some of you gave to YOUR OWN struggles (LLM ), and realizing that while your own world was crashing in on you, you were there giving me support as I started on this nightmare. I am sorry I have not given the same. I think I am truly still not at the place where I believe things will actually get better, or that any of these treatments are cures. I'm still all over the map (was getting ready to post about it ), but know that I pray for all of these kids, and their families, that there will be miracles of cures, and that whatever happens, we have the strength to give our kids good lives.

 

I have to say that this illness has torn my marriage apart...my husband and I are living separate lives under the same roof. We disagree about everything. He does not do ANY research, just says "it's a phase, she'll get over it." or "just give the steroids...it'll be fine" when I know it may not be....so i wanted to thank you all for being my "significant others" while I don't have one here at home (not sure what kind of smiley face to put with that one!)

Wendy