Why is she so difficult with me, but not so much with others?

[jadeelora]

Wondering if anyone can add any insight to this. My Daughter has ALL but one symptom of pandas. She had a pos strep test 3 weeks ago, and elevated titers. Symptoms started in September. OCD, Sensory problems, Seperation Anxiety, Extreme agitation, Repeating words and phrases, bed wetting, regressive behaviour.

The thing is, she saves all her worst for me. I get the brunt of her aggression, and the teacher at school says she is quiet and a little sad. My supportive family doesn't see the worst in her either when they watch her to give us a break. I have always thought that if a problem is at home, or with the parents, but not so obvious at school or other areas of the child's life than it is an environmental problem, like with the family unit. The thing is nothing has changed in our home. Same house, same job, no separation. She is the youngest of 3 and the other 2 are respectful, well adjusted children. They have never hit me, or told me they hate me, or spit in my face. I just don't understand why she is so difficult with me and my husband, but not with the teacher, etc inles the problem is me?????

[qannie47]

What was her temperament before all this started? My kids always had strong personalities and uninhibited. So a problem at home always appeared everywhere else...but I could see if your dd is typically on the inhibited side, she does not feel comfortable enough to express internal feelings/symptoms at school. Also, don't forget about the effect that fellow classmates would have on her. Peers have an amazing effect on our children that we do not have. She may have even seen other kids suffer negative consequences from peers for unusual or extreme behaviors. I bet she is holding it in all day and your getting the release.

[Mommy2MCL]

How old is she? My thought would be is that she tries her hardest to hold it in everywhere than at home... Then she lets it out. My daughter didn't show any signs of the emotional roller coaster she was on at school but at home she was a mess. And when she was at her worse she did show it in front of her grandparents. IS she in a flare now? Have you tried Motrin?

[MomWithOCDSon]

It sounds familiar , and in this respect, I don't think our kids are all that different from "normal" kids. How often, pre-PANDAS, have you heard, "Oh, little Janie is such a darling girl! And SO polite!" from one of the other moms in your circle, or a teacher, when you're the one who gets little Janie's temper tantrums over a dinner menu she doesn't like or being told it's bedtime. PANDAS exaggerates the devilish side of the behavior set, for sure, but it's really something of a blessing that she's keeping it together better in the outside world, isn't it?

 

Our therapist once explained it like a glass of water . . . our kids start the day with an empty glass, and each little episode during the day that calls upon them for tolerance, resilience, flexibility, anxiety-quelling, etc., puts another drop of water in the glass. Eventually (likely by the end of the school day), the glass gets topped out, and then it can't help but spill over. And we on the homefront usually get the brunt of the tsunami.

 

Hang in there!

[smartyjones]

I would wonder if there are specific obsessions, anxieties, or 'just rightness' that are present with you or in the settings that you are in with your daughter that are not in the other places and situations.

 

I think many times with our kids the real triggers can be so hidden. when my son has been in exacerbation (and seen in an uptick in behaviors due to too much vit D) he has bizarre behavior with his older brother that he needs them to do and have things in exact sameness -- as if they are the same person -- putting their clothes on in exact precision, - exact leg at exact time, getting their dinner plate at the exact same time, finishing eating at the exact moment. it's quite strange and impossible for other people to understand -- even observing it, I think trained psychs wouldn't get it or think this is the trigger -- but I've seen it multiple times. I actually think it is tied to something more devastating to think -- that he thinks he is keeping his brother safe if they are in total alignment.

 

anyway -- I just wonder if you could evaluate the places and activities you are involved with that throw your daughter and see if there could be something to it, that there are other triggers in where you are, what you are doing or how you are doing something.

 

good luck!!

[JoyBop]

Oh you have no idea how many times I have asked myself this question! How is it that he has all out temper tantrums at home but can totally hold it together in school? I went through many phases where I thought he was making this up and putting on a show just for me bc his behavior was so outrageous. Yet everyone else, while they saw he was anxious and a bit hyper, were spared his kicking, screaming and spitting. I've also gone through times of anger because I feel he is taking everything out on me. Most people that know us say its because he knows ill always love him and he can let it to around me.

I'm not sure why, but there are many PANDAS kids who have this ability to suppress it all in certain environments. There was a mom who spoke at the pandas conference who told her strory. Her daughter was just like our kids. The teachers would tell her they wish every child was like her daughter but at home it was a living nightmare. I was so excited to hear that there was someone else like us that I reached out and called her! I have found out since that this is not at all uncommon in pandas kids.

 

I know first hand how rotten it can make you feel. It took me a long time to realize he is not doing this "to me", even though sometimes it feels that way. I hope it helps just to knw you are not alone!

Edited December 4, 2013 by joybop

[nicklemama]

That's exactly how my son was. He saved the worst for me. He never had problems at school. He would not talk much, kept to himself and had no friends, only wanted to work alone not in groups. He's gifted and has always done very well in school. I honestly think he did not pay any attention in those first couple of years of school. I think he was very caught up in his OCD and intrusive thoughts. He was so far ahead when he entered school he was lucky that he got by with it. He was in kindergarten when it all started. It took a year to finally get the PANDAS diagnosis. In that time, his home behavior was awful and he began targeting my husband too. He also had severe separation anxiety and while he was horrible to me he had panic attacks and went crazy unless he was near me. It was a real trick getting him to go to school. That was the only place I could be out of his sight without going crazy. I had to lie to him to get him to go each day.

[ibcdbwc]

This is a perplexing issue for us as well. At his worst, DS 12 cannot attend school because the anxiety/OCD is simply too great, he can't control his symptoms. But when I can get him to school in the middle of a flare he is virtually symptom free at school. His teachers don't see it and thus many don't believe that he is struggling mightily. I think this is perhaps one of the most frustrating facets. One with simple black and white thinking would wonder how someone could stifle their symptoms if the symptoms were caused by inflammation? It's either inflamed or not inflamed. Right?

But I suppose, as all of you know there is no black and white with PANDAS/PANS-- it's all a lovely shade of gray.

[JoyBop]

I have two responses to that last post. One is video your child so you can show doctors ?or the school if warranted) the behaviors you are dealing with at home. Many teachers do realize that kids can appear different in different environments. I know for my kid, he would be devastated and embarrassed if he had a melt down in school or a panic attack over chewing gum, or a crying fit in the third grade. But at home those things are out of his control.

The second thing I would say is something that Dr. Swedo said at the conference. She said that we Should tell our children that only 1% of their brain is affected by this disorder and the rest of their brain is perfectly magnificent. I also took this to mean that they are able to compensate for that 1% when they are motivated enough. For my kiddo the fear of embarrassment provides that motivation.

 

This has been the single most difficult issue for me personally in dealing with pandas. Somehow I think it would be so much easier if he were an equal nightmare in school, even though I know that would just rip my heart out more.

[3bmom]

We have the same issue. Tu4four said it perfect in a different post...they are angry just for our presence. When he was 6 he hid his behavior at the hospital for 3 days and then couldn't take it any longer. Five adults had to sedate him and then they believed me! I think it is just the peer pressure until the PANDAS pressure wins. Find someone to talk it out with. Our last flare at age 11 drained me and I went to a counselor. It really helped so I wouldn't be angry at my DS for the verbal attacks on me. Now we are stable and I get hugs. Hang in there!

[JoyBop]

3b thanks for sharing that. It gives me hope! We have a therapist but she blames it all on Immature behavior and poor parenting. On that helps me so much !!

[rowingmom]

Time for a new therapist !

[airial95]

Another thought - have you gotten the whole family tested for strep? It is possible that you may be a carrier and could be inadvertently setting him off that way too (although, my kids also experience the perfect at school/terrible at home pattern as well).

 

I mention testing the family because while we all got swabbed every time there was a new strep infection (and adults always came back negative), when we finally did blood work on the whole family, it turned out my husbands strep titers were sky high - and he was likely the reason my son A) kept getting strep ad nauseum, and could never reach a complete level of healing.

[JoyBop]

Rowingmom, I know! But I can't bare to make him start over with yet another therapist. Its #5 already! Mostly because of therapists own lives they have had to stop seeing us (maternity leave, sick spouse, ect) but he is willing to do the work with her and expose himself to fears ect.

 

But to get back to the topic on hand, my therapist says he does fabulous until I enter the room. Its true! I know! But she doesn't understand pandas and never will.

 

I've been tested for strep and titres and I'm never positive. I'm just the lucky person who gets the pandas poo dumped on me 24/7!

[3bmom]

Have you been tested for virus or myco too? I had high myco and wonder if that set him off. Saw improvement after I was treated. We have been stable but every once in a while my DS can't sit next to me. Who knows??? Have heard this can happen with yeast too.