My turn to feel down

[Suzan]

So, my Dad implied that he thinks my dd is just playing me, manipulating me to get what she wants. I don't know what she could possibly want by her behavior except to maybe be in total control. It's not giving her happiness or anything that's for sure. But it plugged me into the fact that maybe I'm a bad mom, that I don't know how to set limits or am not creative enough to be the manipulator instead of the minapulated. She always seems fine when we go to the grandparents house (we see them once a year) and she can hold it together pretty well for school and at friends houses (as long as she does not have strep). Why is she so bad at home? Maybe my Dad is right.....

 

I don't know why it's bothering me so much (except for the fact that it's my Dad and I care what he thinks, which is a pretty good reason) because I know she's sick, I know something is wrong, I know she does not feel well. I know she has PANDAS and maybe some other things going on. But she's driving me crazy and I feel like I should be able to reason with her, or trick her, or teach her well enough to change her behavior. So then I walk on the edge, like I'm going to lose my mind, knowing that if she had another parent, they might just beat her to get her to comply and I'm so thankful that she has me instead of someone else who would not understand her but then I'm so tired and worn out and frustrated and second guessing....

 

Our next immunologist appt is on the 14th. I just hope that brings some new ideas and some new hope. The antiboitic treatmet really turned around my younger daughter who seems like a new person. My my poor 8 yr old dd, she continues to have some big problems.

 

susan

[bronxmom2]

I think she's hardest on you because you are the one who is calling her on everything, trying to get her to change her behavior, etc.... as I explain to my son when he wonders why I am so hard on him: I have to be because I am the one who is really responsible for who him, who he is, so I have to care more than anyone else.

 

Similarly, she's most comfortable with you and can really show her emotional distress.

 

Those power struggles are horrible, though. Do try to pick your battles and don't drive yourself crazy.

 

And don't second guess yourself!

 

Maybe your daughter's ready for a week at grandpas?????

[Suzan]

Maybe your daughter's ready for a week at grandpas?????

 

I'm going to try to go to sleep now, but wanted to say, THANK YOU. This made me smile for sure. "Hey Dad, get to the airport to pick up your granddaughter..... surprise!" What you say makes sense about where she feels most comfortable. I know I'll feel better in the morning and I'll keep my daily log of what happens and just keep on keeping on....

 

Susan

[Stephanie2]

Oh, I have felt this way so many times. And yes, these children are so lucky to have us as moms, I can't stand to think of the poor children who never get dx'd and probably have a terrible life b/c no one understands what they are going through. And I know how you feel about family not understanding what is happening in your home. My mom is kind of like this. She thinks that I need to stop bringing my child to the doctor's office all the time and just take him to the park and move on with our lives...

 

Stephanie

http://thelight-stephanie.blogspot.com

 

I think she's hardest on you because you are the one who is calling her on everything, trying to get her to change her behavior, etc.... as I explain to my son when he wonders why I am so hard on him: I have to be because I am the one who is really responsible for who him, who he is, so I have to care more than anyone else.

 

Similarly, she's most comfortable with you and can really show her emotional distress.

 

Those power struggles are horrible, though. Do try to pick your battles and don't drive yourself crazy.

 

And don't second guess yourself!

 

Maybe your daughter's ready for a week at grandpas?????

[thereishope]

Unless you've been in the middle of it and total responsiblity has fallen on you, one cannot realize the extent of the situation. I've had family make rude and insulting comments and I've had family ignore the situation and never ask how my son is. Sometimes, you just have to let them talk and go on. It's easier said than done, but you have to remain focused on your child. A couple months into PANDAS, I learned to stop sharing info about my son with family unless they asked a question. Then I was honest with the answer but only answered the question given. I learned that I felt alone a lot of the time, but I no longer had to defend my son and some frustration and anger did slightly subside.

 

I do attempt to reach out sometimes like forwarding info about the Saving Sammy book, links to Beth's interviews. Well, when I still don't get any feedback from them, I at least know I tried.

[dcmom]

Suzan-

 

You are a fabulous mom. We can all see that.

 

Pandas is really tough, because many just want to deny that it exists. I mean if your kid couldn't breath- no one would say a negative or doubting word to you. People are ignorant of, and scared of, mental illness. I think that is what this comes down to. Maybe I was that way too, before pandas. This thing has changed my world forever.

 

You have to stay strong. No one knows a child like his/her mom. okay- some dads But really, at the start of all this- everyone doubted me. My dad said maybe she has too much pressure on her (?), my mother in law said she has always been difficult (?!). Even my husband was not a full blown believer until we saw a few docs (psychiatrist, psychologist, and neurologist) who all emphatically said THIS IS NOT A BEHAVOIR ISSUE. You know your child- that is how you found a diagnosis that WILL save her. You just have to be strong, and patient. And- unfortunately, put those who do not support you at a bit of a distance when things are bad.

 

If you haven't seen a psychologist with her- I would try. We haven't done extensive therapy, but she was a great source of strength, reassurance, and ideas when we were in the worst of it. And I will be back there in a minute if things go downhill.

 

Hugs,

 

Eileen

[Suzan]

Thanks guys, I don't know what I would do without you.

 

Susan

[familyof4]

You are so not alone in this. My in-laws are in total denial that anyone in the family could possibly not be perfect. (Until my mother-in-law threw a lamp at someone at work because she had forgotten to take her meds, no one in the family even new she was on meds) Health issues are not discussed. My son does not produce digestive enzymes (pancreatic insufficiency) and must take meds. My father-in-law thinks he doesn't need them and the doctor doesn't know what he is talking about. Despite being at the hospital and with us when the doctor came to discuss the results of the tests they had ran.

 

Two weeks ago when my son got strep and had severe separation anxiety at school, my in-laws told my husband they don't belive in PANDAS and that someone must be bullying him at school. I had finally gotton the doctors and my husband on board with PANDAS and now they have planted this little seed of doubt in my husband's head that he is again clinging to.

 

At times during PANDAS flare-ups my husband claims I baby my son to much and let him get away with things. I can see that my son is not "himself" and I pick my battles carefully. I know it' hard to control obsessive thoughts and the PANDAS rages leave me exhausted so I try to avoid triggering one as much as possible. My husband on the other hand tries to come down hard with discipline and then feels bad that he pushed things when it gets into a horrible rage.

 

You are doing the right thing with your daughter. Trust your instincts - you're the mom and you know your daughter better than anyone.