I have officially lost my mind.

[Phasmid]

I hesitate to post this, for fear of new visitors reading and thinking that this is what becomes of all mothers of PANDAS kids. But, actually I have really gone off the deep end. I almost wish I had never come here. For then, I would have never realized that all the subtle oddities that my son shows are actually not normal. He has been "well" for one year. The eybrows grew in, as did the eyelashes. No tics. No rages. Everything seemed fine. He was "cured." But now I know that the reason my son has never been able to lift the toilet seat is because he can't touch it for fear of touching germs. It's not that he loves that little mini skateboard so much that he can't put it down to eat his food, it's because he has an obsession with it. He's not admiring himself in the mirror every 20 minutes, he's obsessing over whether he appears fat. He doesn't call me into his room at night because he loves me so much, it's because he's wrought with anxiety. He doesn't open the window in his room at night and scream frantically for us to bring in a fan, even in winter, because it really is hot inside, he just thinks it is. And now, the way I have handled him over the past few years, especially the last year, has ruined him. He couldn't help any of it. And I can't undo any of it.

[peglem]

I hesitate to post this, for fear of new visitors reading and thinking that this is what becomes of all mothers of PANDAS kids. But, actually I have really gone off the deep end. I almost wish I had never come here. For then, I would have never realized that all the subtle oddities that my son shows are actually not normal. He has been "well" for one year. The eybrows grew in, as did the eyelashes. No tics. No rages. Everything seemed fine. He was "cured." But now I know that the reason my son has never been able to lift the toilet seat is because he can't touch it for fear of touching germs. It's not that he loves that little mini skateboard so much that he can't put it down to eat his food, it's because he has an obsession with it. He's not admiring himself in the mirror every 20 minutes, he's obsessing over whether he appears fat. He doesn't call me into his room at night because he loves me so much, it's because he's wrought with anxiety. He doesn't open the window in his room at night and scream frantically for us to bring in a fan, even in winter, because it really is hot inside, he just thinks it is. And now, the way I have handled him over the past few years, especially the last year, has ruined him. He couldn't help any of it. And I can't undo any of it.

I'm sure you haven't "ruined" him. What you can do is sit down and let him know that you didn't understand before, but now that you do understand, you are going to do whatever you can to help him. He'll be relieved! And remember- all people/kids have "quirks"- little things that give them a bit of anxiety. Its only pathological when it greatly interferes with functioning.

[Phasmid]

He can no longer function academically.

[peglem]

He can no longer function academically.

 

I apologize. I went back and reread your post and see that you were saying that it interferes with functioning. But, I still don't think you've ruined him. My daughter was nearly 12 before I really realized that she could not help some very severe behaviors. I felt horrible that I had held her responsible for it all those years. But, she knows now that I will help all I can and relies on me.

[Phasmid]

My son hates me now, and doesn't trust me. How to recover that? I'll spend the rest of my life in therapy with him trying to undo all this . How does your child view it all now?

[patty]

I am so sorry for how you are feeling. You can't blame yourself for what you don't know, esp when you are doing the best you know at the time. Your son is still young, there is time to reverse or modifiy his behavior. It will just take time.

 

Pat

[peglem]

My son hates me now, and doesn't trust me. How to recover that? I'll spend the rest of my life in therapy with him trying to undo all this . How does your child view it all now?

My child is nonverbal. I can only guess. I realized she couldn't help it on a trip to disneyland gone bad. I told her I was so sorry that this was happening to her and I didn't know why, but that I would help her. Everybody was "consequencing" her for her behaviors. At that point, I was the only one she could turn to with any hope of getting understanding and patience. I still make lots of mistakes- but, she seems to know she can count on me. When we talk about her to doctors, particularly about her behaviors, she gets upset until I explain to her that the doctor needs to know so they can figure out a way to help her. Then she's okay with it. So I see signs that she knows and trusts me.

 

I hope you can get your son to forgive you and see that you just didn't understand before, but now that you do understand, you'll do whatever you can to help. I don't remember how old your son is?

[Megs_Mom]

Hey there - ok, so I am going to be kind of tough in this post, because I actually think you are at an amazing point, and that you need to realize that and then start taking some productive steps. First of all, to be blunt, you are in mourning for a LOT of very valid reasons. This is an awful disease, and NO MOM is ready for this. No one. Mental illness, whether caused by a medical or genetic issue is just not what we are expecting to see when our child is acting in a specific way. We are all taught to punish certain behaviors & they will go away. The point that you are at, realizing what is wrong with your child, is a HUGE step forward. Many, many, many parents do not realize this until their kids are grown - and the regrets then are pretty horrible. I talk to folks like this all the time, and they would give all that they have to be at the point that you are at now. And yet, realizing that your child is in horrible pain, and that you have not yet been able to help him, is a horrible moment. It is overwhelming. So start by taking care of yourself, and I would strongly suggest that you get a therapist for yourself, to work through the guilt (which you will need to lose, as this is NOT your fault) and the grief. I did this and am pretty open about it to everyone I know. It is a lot to deal with.

 

Ok, so now to your son. I am assuming from your post that your son is medically treated, effectively? Given his severity, I would want to at least consider that he is not. I'm sure you know this, but for others, let's go on two roads here at once:

* Road 1 - medical. Get back to the docs that were helping you, and outline this OCD for them. Check Lyme, PANDAS, Pitand, Lupus and Thyroid. Ask for an antibiotic at full strength for a few weeks. You can get some great advice from all the parents here on this. I think it is really important.

* Road 2 - getting your son psychological support so that he can develop some tools to function - and you can heal your relationship with him. I'm going to post more about this Road below.

 

First of all, OCD is one of the top 10 most debilitation diseases in the World, according to the World Health Organization. Sounds awful right? Well, it is also one of the most curable in terms of reaching a remission. There is SO much hope for these kids. The therapy is called ERP - exposure & ritual prevention. It takes time and effort - it will be slow and tough - but if he has PANDAS and is medically treated, it is a lot easier. My child had all of the sorts of rituals that you describe - and a lot more - and she is completely functional now, and her exacerbations (so far) are something we can all deal with.

 

You did not cause this illness in your child. He probably is mad, I would be if no one understood what I was going through or could help me. But helping your son is the best path to getting him back again. And you can help him. If you want to PM me, I'll be happy to see if we have an ERP recommendation for a therapist in your area. But a great first step to take with him is just to apologize and tell him that you know what he is going through now, and that you are going to try to help him. Order from Amazon (or local bookstore) "What to do when your Brain Gets Stuck". Do just one chapter every night or two with him. Even if you just read it to him, and he does not participate. Be sure to read it yourself before, so that you are prepared to discuss each chapter as he is ready. Don't pressure him to change yet, just read together. In the meantime, get your doc from Road 1 and a therapist from Road 2 ready to go, as waiting lists can sometimes be frustrating when you are ready. So get them lined up.

 

I'm horribly sorry that you are going throught this - if you want more information on OCD - if you process best by reading, I can repost the list of books about OCD. If you process best by talking, feel free to PM me. But get yourself some help for this journey, as you will have to be strong, and you will be able to help your son more once you have processed the guilt and fear and grief that is so normal for all us moms on this awful journey. You have already taken a step that so many parents are never lucky enough to get to - you know what is wrong, and you are ready to acknowledge it & seek help. So chin up mom, you are already a super mom.

[saidie10]

this makes my heart ache for how you are feeling right now . i think the other folks have put some really great advice on here and i concur. guilt can be a horrible feeling but NOW you can embrace the fact that you have some answers and you can find tools to help. you guys will get through this. turn the guilt into fight and use your mommy super powers to help your son and he will thank you in the end.

[kimballot]

I am wondering how old your son is.

 

My son is 13 and still has the little skate board obsession, sleeps with 2 fans and an air purifier blowing on him - even in the winter, and still calls me in at night when he is having an exacerbation (he would do it every night if I let him).

 

When my son was 10 1/2 he had a horrible exacerbation and ended up in the ER. At the time we were told that it was not PANDAS because his ASO titers were not elevated (never even checked DNASE B and now we know it was probably mycoplasma at the time). Anyway, he was obsessing horribly about grades, then he found out about the facts of life and was very upset with that whole idea (He is no longer upset - now age appropriate curiosity). He was thinking about hurting himself. It was a mess. We saw a psychologist and did CBT and that did help a bit... plus I think he just got better physically and that helped too.

 

The point of my story is that a couple of weeks ago I was relaying this information to a new doctor with my son in the room. My son DID NOT EVEN REMEMBER it being so bad. He remembered going to the psychologist and he laughed about thinking sex was icky.

 

Today is a new day. Today you make changes and move forward. You cannot change the past and you do not have to. It is amazing how resilient our children are. In the end, our kids will be grateful that they had GREAT moms who did not give up and they will also be grateful that they had HUMAN moms who were not perfect - that way they will not have to be perfect as parents either.

 

BTW - I agree with Meg's mom - I have also done counseling for myself and found it very helpful. I am realizing that I may need to do some more soon as I have been seriously neglecting this with my son's most recent exacerbation.

[tpotter]

I read your emails, and feel so sad (and I totally understand.) First, you haven't ruined him...don't beat yourself up over this. Trust me, I've been through a lot of the same with BOTH my boys. We don't know, and what we don't know, we can't beat ourselves up over. The best part is that now you know, and you CAN do something to correct it. You can't even begin to imagine how much it will help him if you do talk to him like Peg suggested, and tell him you didn't know before, but now you do, and you are going to help him. Keep telling him that, so he really gets that you mean it. My boys started coming to me for help when they realized I really meant what I was saying.

 

Secondly, as far as academics is concerned. This is huge. My DS14 was in the same boat. We have been fighting our school district for 3 years (finally in Due Process.) Very, very nasty case, b/c they refused to honor a support plan that would have stopped most of the terrible anxiety that finally caused him to get so out of control he couldn't even think about school without having a panic attack. Grades were down to F's, he was hospitalized for 4 days with Syd Chorea, high fever, scarlet fever and PANDAS exacerbations, and the district STILL refused to help him! We finally put him in a very expensive private school that caters to children with anxiety and school phobias, and although he does miss a fair amount of school (because he's still sick), he finally likes school again, and grades are back up to A's and B's. We are still fighting the school district to get our money back, because we have borrowed money, used retirement money, etc. to pay for the school, BUT, as I promised him...we would do everything we could to help him.

 

So, for your son's benefit, go straight to him, tell him that you are sorry, but didn't know, and you want to help him as much as possible. don't wait for him to come to you (the OCD might not let him), but rather constantly go to him, give him a hug, and ask him how his day is going. Ask him pointed questions if you need to to make sure his needs are being met, and see if there's something you can do to help him. He will so appreciate that, so that in time, he may even forget about everything you *didn't* do for him when you didn't know.

[Stephanie2]

Well, if it makes you feel any better, my son told me that he wanted his friend's mom to be his mom b/c she is nicer. And the sad thing is that I couldn't argue with him b/c I have been so uptight lately with my husband being out of town and from being exhausted. It makes me sad to think that I give my life to these kids and that is the thanks that I get. But they will eventually understand everything.

 

Listen, my parents were quite dysfunctional when I was growing up and I still talk to them! I even have a descent relationship with my mom. All is not lost. I have had to apologize to my son countless times. We are only human...

 

BTW, are you absolutely certain that he does not have a bacterial infection from all the antibiotics? Like I said in another thread, both of my sons developed klebsiella in the gut after a few months of antibiotics. The klebsiella made each of them quite OCD (worse than your typical pandas symptoms). I had to give them both vancomycin to kill it and within 4 days the OCD went away for both of them. Many docs don't know about this stuff and how the antibiotics are affecting the gut and worsening symptoms for some kids. It wasn't until I increased the probiotics to 400 bill that they could tolerate the zithromax without having a severe kleb infection. I know that you are concerned with the high dose antibiotics b/c of the immune response, but I did not notice a worsening of symptoms when I increased. I have heard that the "immune response" to the probiotics is temporary and after that the probiotics mostly are just taking up space to keep the yeast and bacteria out. Just food for thought. Our doctor is a DAN doctor and he really specializes in these infections...

 

 

 

Stephanie

I hesitate to post this, for fear of new visitors reading and thinking that this is what becomes of all mothers of PANDAS kids. But, actually I have really gone off the deep end. I almost wish I had never come here. For then, I would have never realized that all the subtle oddities that my son shows are actually not normal. He has been "well" for one year. The eybrows grew in, as did the eyelashes. No tics. No rages. Everything seemed fine. He was "cured." But now I know that the reason my son has never been able to lift the toilet seat is because he can't touch it for fear of touching germs. It's not that he loves that little mini skateboard so much that he can't put it down to eat his food, it's because he has an obsession with it. He's not admiring himself in the mirror every 20 minutes, he's obsessing over whether he appears fat. He doesn't call me into his room at night because he loves me so much, it's because he's wrought with anxiety. He doesn't open the window in his room at night and scream frantically for us to bring in a fan, even in winter, because it really is hot inside, he just thinks it is. And now, the way I have handled him over the past few years, especially the last year, has ruined him. He couldn't help any of it. And I can't undo any of it.

[Bio and adopt]

I hesitate to post this, for fear of new visitors reading and thinking that this is what becomes of all mothers of PANDAS kids. But, actually I have really gone off the deep end. I almost wish I had never come here. For then, I would have never realized that all the subtle oddities that my son shows are actually not normal. He has been "well" for one year. The eybrows grew in, as did the eyelashes. No tics. No rages. Everything seemed fine. He was "cured." But now I know that the reason my son has never been able to lift the toilet seat is because he can't touch it for fear of touching germs. It's not that he loves that little mini skateboard so much that he can't put it down to eat his food, it's because he has an obsession with it. He's not admiring himself in the mirror every 20 minutes, he's obsessing over whether he appears fat. He doesn't call me into his room at night because he loves me so much, it's because he's wrought with anxiety. He doesn't open the window in his room at night and scream frantically for us to bring in a fan, even in winter, because it really is hot inside, he just thinks it is. And now, the way I have handled him over the past few years, especially the last year, has ruined him. He couldn't help any of it. And I can't undo any of it.

 

 

My PANDAS kids are now almost 20 and 15. They are both doing so much better than when they were younger. When I tell them stories about how difficult things were they don't even remember. They don't remember how I reacted to them when I thought they were just being a pain in the A**. They just laugh now when I tell them how frustrated and angry I got with them. They used to tell my all the time "you dont understand, I just have too". I could see in their eyes the terror. Ten years ago I knew that they had PANDAS, but could not get any medical professionals to believe me. So we just treated them as difficult kids with OCD and tics. If I had only had the info i know now. My kids survived. My oldest daughter was the most difficult and now she is a sweet(most of the time) functioning adult. She loves her mommy even though i didn't always do a great job with her behaviors. All of the my bad times were balanced with good mommy time. No parent is perfect, we all make mistakes, kids learn that the world is not perfect and neither are people. As our kids get older the bad times begin to blur and good times shine. When my youngest was five I remember saying I absolutely do not want any more kids(because two of them were so difficult(PANDAS). Now ten years later I have a four and two year old. So yes I must have forgotten how hard times were. Somedays the little kids remind me how hard it can be. Hopefully one day I will forget again so that my grandkids can remind me and then I will send them home to their parents, so my kids will know how difficult parenting can be. It is a cycle and I pray the next generation will not have to deal with PANDAS. This site is a step into making sure this terrible disease is understood and taken care of early. Thanks to everyone for all they do.

 

From

Not Such a Bad Parent After All

[Phasmid]

Thanks everyone. I am going to come home and reread all of these again a few times and try to formulate a plan. From what I read of what you all are going through, our situation isn't even that bad. I mean it was, last year. But now the residual effects are what I need to deal with. I have questions or responses for each of you, so I will come back this afternoon. Thanks again. You picked me up enough that I can make it to work this morning. Thanks.

[MomWithOCDSon]

PANDAS and all the ancillary crap it brings to the picture negatively impact EVERYONE in the family: DD/DS, you, siblings, DH. No one goes unscathed. And it can isolate you from friends, the community, sometimes even family because, unless you're living it, it is very difficult to understand. That isolation, that frustration . . . there's more than enough to go around, for both your son and you. I'm sure you can tell from all the posts thus far that many, MANY of us know exactly how you feel. We've been there, done that. Some of us are still there, still doing it, too.

 

Your son doesn't hate you. He hates the predicament he's in, and he's demoralized by it and doesn't know how to contend with it. What's more, he's just not emotionally or mentally mature enough to contend with it . . . at least not alone. So he's lashing out at the people closest to him (you) because, like all of us, you "only hurt the ones you love" because the ones you love won't leave you even when you go after their jugular. The ones you love will continue to love you, no matter what. They'll always stick by you.

 

When my DS was 3 and 4, I would sometimes resort to dragging him, screaming and crying, down the sidewalk, home from errands or on the way somewhere (school, the store, etc.) because I didn't know he was sick; I thought he was just being willful and bratty. I yelled at him to "just cut it out!" As he got older, even after the OCD diagnosis, I would lose my patience with him badly. Sometimes we'd yell at each other, sometimes he'd go to bed crying, and sometimes I would. I couldn't understand why his OCD was in fabulous control one minute, and completely out of control the next, and it was frustrating and scary for both of us. I didn't understand what was happening, and neither did he, but now we do. Or, at least, we think we do.

 

But through all that, he still knows that I'm his rock. That I will do anything for him. That, were it in my power, I would reallign the planets and make time stop for him (a frequent wish on his part! ). Now that he's older (13), we talk everything through . . . what's happening with him, what's happening with me, what we're trying now to help him, what we might try next, how he still needs to be accountable and responsible because he has a good set of capabilities now that much of his PANDAS is under control, etc.

 

A lot of the "bad times," like some of the other kids here, he's completely forgotten. They never registered with his "real brain" to begin with, I don't think, because, at the time, the only parts of his brain functioning on any real level were the PANDAS/OCD parts. But even the bad moments he remembers, he's circumspect about now, in hindsight, better balance, and newfound maturity. And he knows that everything we've been through, we went through because he is loved. I'm betting your DS knows that, too, on some level.

 

Also, like a number of other folks here, much of DS's counseling -- CBT and ERP -- has been "family therapy," too. We're all in this together, and doing sessions together in addition to his having some private ones has helped DH and me develop skills and tools for helping DS, and also helped us look into our own natures and see what it is we bring to the table that's truly positive and pro-active, and what baggage we bring from our own past experiences that we need to sort through and discard because it's only baggage, it's not helpful.

 

Your son knows that you love him. And you can tell him again, today. And you can tell him that you were doing what you thought was best at the time, and now you have new, better information and you want to move forward with that. And you can tell him that you'll never stop until you've learned everything you can about how to help him, and how to help him find all the joy he can in his life.

 

But as much as you can tell him, maybe what's even more important is that you can listen. Let him tell you how he feels. Let him rant at you if he needs to. Listen to him and validate his feelings. Listening is underrated, I think, because we're all so busy dispensing advice and encouragement all the time, we forget sometimes how much our kids just want someone to listen to them.