I'm not coping so well....

[worriedmommy]

Just wondering if any of you ever reach your breaking point with everything??

 

I feel like the worst mother in the world. My Dd (she'll be 6 next week) who we suspect has PANDAS has slowly been "slipping" into an exacerbation, and is suffering from tics every 1-2 seconds all day long right now. We have an Rx for azith from Dr. T sitting in the cabinet but our GI doc pleaded with us to hold off until tomorrow afternoon to start it b/c dd's getting an endoscopy tomorrow and they don't want the abx to mask anything they're testing. --I know I can make it one more day...but my temper is really getting the best of me. Dd is an emotional basket-case. She cries at the drop of a hat, is moody, defiant, scared of everything, has constant tics and does SO many quirky things. Yesterday I simply snapped as we walked down the hallway at school and she had to jump over every green square floor tile. Then in the parking lot had to jump over the lines. I nastily told her to walk "normal" and step on whatever was in front of her feet. Then at home she had to go down the steps...which she has to do backwards...and I yelled at her for that and made her do it forwards...which of course caused crying!! Add to this her constant baby talk, and I'm ready to bang my head against the wall!!!

 

To add to this my ds (age 4), has been displaying some odd behaviors lately as well. I am struggling to figure out if whether he could possibly have something wrong with him, or if he's simply copying his big sister (who he adores).

 

I feel like my kids can't even be kids anymore without me constantly analyzing every thing they do. Kids do weird things...so how do you determine what is normal and what is not? For years my husband has said that something was "wrong" with dd. He couldn't put his finger on what, but felt that her behaviors were not normal. I just thought he ws over-reacting. He is VERY laid back, so I just assumed that he simply didn't understand that kids are quirky. Well, it took dd going from 0 tics one day to over 10,000 the next for me to finally realize that he was right. I feel guilty b/c all this time I've had my head in the sand about her odd behaviors.

 

Ughh...I know this is just a lot of ranting, and feeling sorry for myself. I have to believe I'm not the only one to feel this way though. Any suggestions out there??

[JAG10]

Oh, worried mommy,

 

I can empathize with how you feel. Sometimes, so good at being compassionate and protective and other times feeling like I could give Mommy Dearest a run for her money!

 

Advice.... for me, the difference in my reactions is me and what's in my head at the time. Anticipating a change in behavior due to a new med or whatever, will increase my sensitivity to her behaviors. Being around her peers is also a "trigger" for me. Both my girls will be in their school's Spring Show this weekend (the whole school is) and as my d10 is not doing so great right now, my stomach will turn waiting to see if she does anything abnormal; nobody else will notice.

She seems better around kids much younger than herself, you could try that. I try to do a lot of self-talk, count backwards from 10 or say a Hail Mary before I yell (which I still do plenty).

 

This is kind of goofy, but I burned a "pick me up" cd that I play loudly when I feel like I can't take anymore.

 

Sometimes, I just have a glass of wine.... probably not a good idea this early;)

 

Be strong. You have to take care of you in order to be able to fight for her.

 

jill

[thereishope]

I have many times I still wonder what I did in the past that warrants my child to suffer with this. I feel like I did something.

 

When he was sick, there were times I just cried, I felt sorry for myself, I wanted to just run. But at some point, you will somehow find the strength while you surrounded in chaos and at some point you pull yourself up and you just keep fighting. It becomes an out of body experience.

[Kayanne]

(((Hugs)))

 

One of the mantra's that I kept telling myself when my daughter was bad was over and over in my head I just kept saying, "she is sick..."

 

It enabled me to step back and have some more compassion for her when it seemed she was being difficult...when in reality she was getting stuck because of the OCD. Definitely, it helped to take the situation down a notch when as parents we tried our best (not always successfully) to not escalate the situation.

 

I'm sorry your going through this!

 

~Karen

[Fixit]

I have not words........i am empty too

i did just post on the ANGRY thread....that kinda felt Good!!!

 

 

 

 

Just wondering if any of you ever reach your breaking point with everything??

 

I feel like the worst mother in the world. My Dd (she'll be 6 next week) who we suspect has PANDAS has slowly been "slipping" into an exacerbation, and is suffering from tics every 1-2 seconds all day long right now. We have an Rx for azith from Dr. T sitting in the cabinet but our GI doc pleaded with us to hold off until tomorrow afternoon to start it b/c dd's getting an endoscopy tomorrow and they don't want the abx to mask anything they're testing. --I know I can make it one more day...but my temper is really getting the best of me. Dd is an emotional basket-case. She cries at the drop of a hat, is moody, defiant, scared of everything, has constant tics and does SO many quirky things. Yesterday I simply snapped as we walked down the hallway at school and she had to jump over every green square floor tile. Then in the parking lot had to jump over the lines. I nastily told her to walk "normal" and step on whatever was in front of her feet. Then at home she had to go down the steps...which she has to do backwards...and I yelled at her for that and made her do it forwards...which of course caused crying!! Add to this her constant baby talk, and I'm ready to bang my head against the wall!!!

 

To add to this my ds (age 4), has been displaying some odd behaviors lately as well. I am struggling to figure out if whether he could possibly have something wrong with him, or if he's simply copying his big sister (who he adores).

 

I feel like my kids can't even be kids anymore without me constantly analyzing every thing they do. Kids do weird things...so how do you determine what is normal and what is not? For years my husband has said that something was "wrong" with dd. He couldn't put his finger on what, but felt that her behaviors were not normal. I just thought he ws over-reacting. He is VERY laid back, so I just assumed that he simply didn't understand that kids are quirky. Well, it took dd going from 0 tics one day to over 10,000 the next for me to finally realize that he was right. I feel guilty b/c all this time I've had my head in the sand about her odd behaviors.

 

Ughh...I know this is just a lot of ranting, and feeling sorry for myself. I have to believe I'm not the only one to feel this way though. Any suggestions out there??

[sf_mom]

I understand your feelings and know them all too well....... BUT, its time to pick yourself up off the ground, brush the dirt off your knees and continue the marathon of 'life'. I wasn't exactly up for the marathon either but I'm almost half way done with this particular one and realize I can make it across the finish line. If I can do it, you can do it!!!!! Time to turn the guilt, the worry, the not knowing into action, resolution and knowledge. You were chosen to run the race because 'I believe' someone or something knew you could handle the 26 mile run. There will be new friends along the way, people that you'll tell...... come on you can do it too, there will be doubt as your ability to finish, there will be hills you'll think you can't make to the top, there will people that say 'come on' you can do it. The funny thing is, you won't be running this race for you but for the children you brought into this world, that have only been loaned to you for this very brief time. AND, You will be running this race for the neighbors child, the child at your children's school 'who you recognize' as PANDAS and maybe even for your best friends child. You will be running this race for the millions of children who will get sick and recover as a result of your successes.

 

Just this morning you've read a post by Ronna and of her recovered son named Kurt! Hang onto those hopeful stories and get down to business of getting your child well. I highly recommend that you align yourself with a Dr. that is knowledgeable PANDAs to direct you along the way.

Edited April 13, 2010 by SF Mom

[parents4eyes]

x

Edited September 8, 2010 by parents4eyes

[worriedmommy]

Thanks everyone for your comments. It helpful to know that there are others who have reacted poorly to their kids symptoms.

 

I know that I have to be stronger for her (and up until the past couple of days have been holding it together pretty well), I was just unprepared for this current backslide, and took out my frustrations in all the wrong ways and on all the wrong people.

 

Hearing other people's success stories are so inspirational, and I am determined to be able to share one about dd one day. I am working with Dr. T (who is awesome!), and feel confident that he will help dd on a path to recovery.

 

On a side note, I'm going to see Beth Maloney tonight at Barnes & Noble in NH today. Should be interesting. I read "Saving Sammy" as was astounded by her son's PANDAS story. I'm curious to hear what she has to say....

[dcmom]

This is really hard

 

But, I agree with Kayanne. A year ago, when dd was first sick, I was at the end of my rope. Before we even read about pandas, my dh and I looked at each other (in a moment of, shall we say difficulty with dd) and then said to each other. This is different, there is something really wrong, this is not a behavoir issue.

 

I have been on a long road, with both girls now pandas. And I have to say, my mentality had to change (at least for now, and for however long it takes). I am the mother of two children who are sick. Others might not see it, the teacher might not see it, but this is how it is. Their needs are different, and my expectations are different. I don't sweat the small stuff, I don't demand that their beds are made every day or that their clothes always match, I have eased up and de stressed about academics, we snack, we eat in front of the tv and we go to school late if we need to. Priority number one is their happiness and their health, period.

 

That being said, I am working on getting tougher in other areas to help fight the ocd. We go out every day, stay active, get dressed in the morning. They don't get to decide not to go to an extra curricular because they don't feel like it that day (but I will stay, or they can leave early if they really need to). We are working on an ERP program.

 

It is tiring. I liked the organized, school focused, Mom that I was before. But, right now, that is not what my kids need.

 

Oh, and I am trying to put taking care of myself somewhere on the priority list (since pandas, I haven' exercised, have gained weight, haven't shopped much for clothing, etc)- this cannot wait until they are well. Taking care of myself will help me take care of them.

 

I do not always succeed in this stuff, I have my moments. But this is my goal, anyway.

[Stephanie2]

I find myself snapping at my ds5 all the time when he is in exacerbation. Sometimes I think that what is REALLY bothering me is just how sad it is to watch him act so strange and just how scary it is that maybe he will never really be able to function in society. I think that when I snap at him about his compulsions/tics I am really snapping about the big picture. I mean, it does drive you insane to have these children not be able to get through ANY normal activity without creating dysfunction for the rest of the family. Personally, I never knew life could get this crazy, as now I have both of my boys going through exacerbations together, my husband is out of town for 5 months, etc. Just the other day my 5 yo literally beat up my 2 yo in the back seat while I was driving on a major highway!! Never could have imagined that from my sweet boy. My husband and I just tell each other that things HAVE to get better one day.

 

Try not to beat yourself up from the guilt. She is not the only one suffering, you as her mother are bearing the brunt of this insanity and you can't possibly go untouched!

 

Stephanie

[simplygina]

I could haven written your post myself.

 

Even still there are things that I just can not tolerate. DS has to touch things and even amount of times with each hand until it feels "just right". Most the time I just watch and wait because it is never more than about 10 seconds. But sometimes it is ME that he is touching over and over and I HATE IT!!!! Sometimes I muster up the ability and patience to say, "I love to be touched by Myles, but not by OCD", which works and is kind. But sometimes I end up barking, "STOP TOUCHING ME LIKE THAT! YOU KNOW I HATE IT" which also works, but makes me feel like a total creep. After reading all the OCD books for kids, I know the right way to handle stuff like that is to casually mention that OCD sure is being a pest today. That usually gives him the ability to "Talk back to OCD" and work at regaining control. The past week I have really noticed him doing his own ERP and CBT on the touching. It is amazing how quickly it works once they really decide to tackle a compulsion.

 

I try to be pretty honest with my son. If I lose it I will always go back and apologize and explain how worried I get and that sometimes it just comes out as angry but it isn't angry at him even though it seems that way. I tell him I can only imagine how hard it is for him and that he's doing a great job and I love him no matter what. I promise to try harder and not wait until I explode. I'm always amazed at how forgiving he is and how understanding. He's 10 now and actually gives me really good advice about how to manage my emotions and reminds me to take breaks to recharge my batteries. At least I know the therapy and talks and books have sunk into his brain!

 

I am also increasingly worrying about my younger son. He's so different personality wise that it is hard to tell. And he's only 7 so figuring out what is age appropriate is hard too. He's very laid back and doesn't get crabby like his brother. He gets emotional and cries. He has started worrying about germs more, but that could be the result of his brother and his teacher always harping about germs. He is 7 and will go for months without wetting the bed, then wets it every night for a few months. He has also struggled with encopresis for 3+ years, but does have periods where I think it is going away, only to return. This week he had a rash on his bottom that looked like Scarlitina to me. He also had a strawberry tongue. He's had the rash in the past and I always just treated it with creams and didn't even think about it. This time I realized that it might me strep and goggled it. I took him to the InstaCare and they told me they NEVER see scarlet fever anymore and he looked so healthy. I explained he's always asymptomatic for strep. They wouldn't even swab for strep. Luckily they could see I was pretty serious and did give me a Rx for abx. It will be interesting to see if his hands or feet peel in the next week or so. I've been documenting it so I at least have a record of it. I've decided to keep a journal for each kid with their illnesses and other concerns I have about their health. Piecing together my older son's medical history has been really hard so I'm trying to make that easier going forward for both of them.

 

I've decided that when I do the CamKinase II test for my older son, I'm just going to do the younger one at the same time. One of Dr. Cunningham's assistant's told me to just do 1 vial of blood for each kid and send them together. I need to quit procrastinating and just get that done! I guess my gut tells me there is something there and I just need to trust it.