I flipped out - Bad Mommy Moment

[T_Anna]

I know many if you can understand. Ds15 sprayed his comforter with Lysol bathroom cleaner with bleach and I flipped out!! I am

So tired of walking on eggshells waiting for him to get better. Now I am waiting for a script to treat yeast and thinking this is never going to end. Our other two kids basically jumped into bed to avoid hearing any fighting. We are usually so mellow, but tonight I just snapped. Maybe it's because he "seems" better. I know he still has severe OCD, but I brought up the bathing issue and he cried, banged his head on the wall (not very hard) and now is making structures from tape and paper and not talking to anyone. This disorder has really beaten me down today. How much longer can this thing drag on? I was optimistic Friday about dealing with yeast and proceeding with the Cunningham Test, but realistically that is going to take time and we won't know anything till late May. We will probably do another IVIG after his blood test, but I'm really not so hopeful right now.

 

He's not psychotic and generally is nice and social despite not bathing, changing clothes or leaving the house in months, but that's not enough.

 

Maybe I'm the one who needs to be put somewhere.

 

Sorry for the vent. It was all building for a while.

T.Anna

DS15 dx 12/2012

Many abx

2 IVIGs

[trintiybella]

T.Anna - Your not alone. Please don't get down on yourself. We are only human! Our kids are very sick and we need a lot of patience but we can only take so much! Take a breath. Do something for yourself. Hang in there and vent whenever you feel like it. Thinking of you....

[Ozimum]

Yes... I've been there too - my naturopath calls it PTSD without the post! I've found it helpful to think about what was the worst that could happen in any situation, just to try and get some perspective. The fact that your ds is currently nice and social...really... I would take that! (Mine wasn't at his worst and we've all seen that!) Take the positives and try not to dwell on the negatives - easier said than done, I know but you will get through this. Hugs!

[Hopeny]

It's still not too late for a glass of wine tonight. Its a lot to deal with and we are all only human. I'm sure it was a good release for you.

[Kathy4Him]

I would imagine we moms can all relate, and in some crazy way it unites us and well...misery loves company. lol. I have had some really tough moments in this almost 5 year struggle, but we have to hold on to the hope that our kids will get thru this and be healed one day. Some how, some way, God will make a way!! Until then, we have to continue to search, research, and encourage each other in this journey. I am so thankful for this forum and the pandas fb sites, just to know I am not alone.

[dcmom]

Hey T Anna-

 

We have ALL been there!

 

But, honestly, what he did was wrong (ocd or no ocd), and he is old enough to know that. We need to try to maintain "age appropriate" expectations for our kids, regardless of ocd.

 

However- maybe now is the time that you give him the tools to overcome the ocd. It sounds like he is doing okay otherwise. I HIGHLY suggest the three-weed outpatient ocd therapy program at USF. It made all the difference for my daughter and our family. He can confront this therapy now, or in 5 years when he is 20- but he will need to confront it to get over it. Contamination is pretty straight forward, and I bet they would make great headway at USF.

 

good luck!

[EmilyK]

Tape and paper structures!! My son does that. I go through paper and tape like crazy. He called me a moron this morning when he didn't want to go to school and that got a rousing holler out of me - the mom who never used to scream at students as a teacher....

[LNN]

I totally agree with DCMom - you were right to be upset about his doing something he clearly knows is not ok - he doesn't get a free pass just because of an illness. And tho we've not done it, I've never heard anything but amazing raves about the USF program. It sounds like your son could really use some tools taught by some top notch experts.

 

The other thing is this - your son needs to learn that people are not saints, his mother is not super-human and he has a responsibility to consider other people's needs, regardless of illness. The world does not revolve around him and his disease (which by its nature is a selfish and demanding beast). Flipping out teaches a lesson - yo, dude - I am not Mother Teresa. You are not free to do whatever you want. There are consequences. I have needs and feelings and buttons that get pushed and there are boundaries you cannot cross. Get over yourself and start taking responsibility for your actions. The rest of the world expects better from you and so do I.

 

So don't beat yourself up. I think you did the appropriate thing.

[airial95]

We have not done the 3-week program at USF, but as they are local to us, we have done weekly behavior therapy there off an on for 3 years, they are wonderful there, and get the PANDAS aspect of it too - so that's a plus. (I'm not just raving about it because it's my alma mater either )

 

As for losing your cool - I find that my temper is the shortest when my kids are showing improvement. When they are at their worst for weeks on end, I seem to have more patience, but for some reason, after they are doing well for a few days/weeks, on minor slip seems to send me off the deep end. I think it is a PTSD type reaction. For me, I feel like we made it through the worst, only to be disappointed that it's not really over, and that's what makes me snap. It's not an excuse for me to lose it on my kids, but knowing that I have that pattern has helped me. It's helped my husband too - because he tends to be the opposite. He tends to wear down during the long stretches, but has unending patience during the "one-offs" we get as things improve. We tag team during those times, and it helps.

 

We've all been there, done that, no need to beat yourself up about it.

[Dedee]

Well don't worry you won't get the "worst Mommy of the year award", because I'm clearly getting that one this year. We all lose our cool sometimes and when you are dealing with this type of illness you do good just to get through the day with your sanity intact. I have done and said things that 5 years ago I would have NEVER thought I would have done. In fact I would have harshly judged other parents for saying some of the things I have said in my worst moments. I am not proud of those parenting moments. However,the fact is that during these stressful times when the children are in crisis mode, we the parents, are in survival mode. We are putting all our energy and resourses into getting our child better. That leaves you with little in the form of coping skills. That's ok. You are focusing on what is most important at this moment. You are only one person and you are doing a great job in a very difficult situation. Give yourself a break. For every one thing you have done wrong, there are 20 things you have done right.

 

I do want to second what dcmom said about a CBT / ERP program. It can work wonders on the type of OCD your Son is dealing with. I used to think that because this was caused by a physical problem that therapy would not be the best answer but I was wrong. I now regret that I didn't make my oldest son go when he was young. He is now 17 and refuses to participate in a program. My youngest two children have attended the program at USF / Rothman and it is so wonderful. It has made a huge difference in their lives. I would highly encourage you to consider this type of program. USF is the best around and they understand the PANDAS connection so you don't feel like an alien when you go in discussing it.

 

Try to do something relaxing for yourself. Give yourself some down time. I know it's hard, but you will be a better Mommy if you have had a break. If you absolutely can't get away, I'm all for a nice large glass of wine (or two).

 

Dedee

[cobbiemommy]

Oh honey, I have so been where you are. Unfortunately, I will probably go there again before this is over. We are light years away from the worst of the worst, but we still are not to full healing. The years of stress are a lot to take, and occasionally we break down. Unlike our wonderful doctor and nurses, we do not get to leave all of the stress at the office, we stay home with it and it can be unrelenting.

 

Please don't be too hard on yourself, allow yourself time to cry and scream (away from the kiddos of course). Just know that we are all in this boat together. (Personally, I am ready to jump for it and just swim...)

 

Cobbie

[T_Anna]

Thanks everyone!! It really means a lot to know

I'm nit going this alone.

 

Airial95, it does seem that I was upset since he was doing better.

 

He's not talking to me or DH. He's only talking to my parents and his siblings. I agree about the therapy (CBT/ERP), but I'm finding it very tough to find someone who can work with a homebound teen. One guy I spoke to said he may have a practice that will work. Otherwise, all I have gotten is recommendations for Rogers Memorial which I'm not really ready to pursue. I'd like to see the Cunnigham test run and treat the yeast first and see if that shakes anything loose. I wish I had taken him to USF when getting out of the house wasn't so difficult.

 

I was always bad at discipline. I am finding it difficult to deal with a DS and the lack if progress lately.

 

 

T.Anna

DS15

[T_Anna]

MAybe it was the increased Luvox??? In our ever changing chemistry experiment, we upped the Luvox another 25mg according to the psychiatrist. I think that might be aclue to the general change we have seen, especially the tape/paper things. 8 hours later he has sculpted a 5 foot sword with decorated hilt all made from paper and tape. DH and I have differing opinions whether that is progress or not. I am happy that he "did" something, DH thinks it's an obsession to stay up working on a paper sword.

 

Btw, I feel so inadequate when people ask me at school how DS is doing and will he come back, etc. It seems retarded not to have any clue.

 

T.Anna

DS15