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This is a family affliction...ugh


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DD is not at all near the worst she has been in this horrific illness, but DH is having a time of frustration and end-of-his-rope feeling. I want to listen with empathy to him, but when he gets going with saying things like nothing has worked, we all get infections, no reason she can't get her a** to school like everybody else, put her in front of a truancy judge and let her get those consequences... I have to say she has improved, we have empirical evidence of infections and autoimmune problems, and I am not at all on the same punishment page as he is tonight... I did support him taking her off screen time until she does some academic school work, but I can't go where he is going in his thinking tonight. This is so hard...

 

Do any of you find yourself somewhat frozen by stress? Having difficulty doing much but stew, you post something and then continually check in to see if anyone posted a reply that might help? (and almost ashamed to admit it) :(

Edited by momslove
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you ought to consider the seriousness of the effect that your child's condition has on you and even perhaps the possibility that you too have a form of PANDAS/Pans.

in our family, all four of us have psychiatric and autoimmune issues and are trying to help each according to what they need.

i do not, however, agree with your husband except in the sense that your pandas child should have consequences and should be allowed but limited screen time after all other responsibilities have been met. limits should be clear.

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In my state, the parent is held accountable for a child's truancy. The parents are fined twice (250, then 500), then placed in jail for 3 days each time the child is truant past the limit, so his plan would back fire on him here.

 

Sorry your hubby is not on board with you fighting this illness right now.

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The school difficulty/anxiety/refusal is an incredibly stressful thing to deal with. We were pretty much where you are with it, but in 3rd-6th grade. One thing I realized over time is that there is a physiological component (inflammation of the brain) to it and a psychological component (the brain is literally stuck in the thoughts and behaviors). I think that's why it often looks or just feels like willfulness, laziness, or manipulation, even sometimes to parents who "know better." At some point, treating infections, changing diet, etc reduces the inflammation to the point where the thoughts and behaviors are reduced and they can attend school - well for some. In our case, there was a point at which I realized he should be able to get to school - because all his other symptoms had been greatly reduced - but he was just stuck. At that point we started considering the intensive program at Rothman and eventually went out there (we're in CA) in summer 2013. It was a lot of work both during and after, but the tools and information we learned were enough that by the second month of 7th grade, he was getting into school regularly with only an occasional hiccup. Only you as the parent can judge if/when she's reached that point, but if she does, I'd highly recommend taking her to Rothman for 3 weeks. We saw Dr. Rahman and my ds hated the whole thing while he was there, but later referred to Dr. Rahman as a "genius" and having "saved his life." Also, Rothman is great because they accept and "get" PANDAS/PANS, so you can talk about it openly without having to explain or get strange looks.

 

Another thing to consider, if you haven't already, is the possibility of mold as part of the problem. If she's not continuing to recover with Lyme/PANDAS treatment, this could be a culprit. Indoor mold is pretty common and these kids with immune/detox issues are often affected by it. And if you've got untreated mold issues, you can't recover from Lyme.

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Yes, I've been there... Many times. Checking and checking my posts, desperate for suggestions. I wish I had one for you on this one, but can only offer my gift of understanding.

 

My husband and I have also been at odds many times regarding behaviors and consequences, etc. I am actually amazed that we've made it this far in this journey with our family still in tact honestly, because It has come very close to being torn apart a number of times since the onset of dd's symptoms.

 

It took a long time, and many conversations about how this disease works wih my husband (because i am the one that does all the research) and many times of pointing out to him that her behaviors were out of character (which you would think he would recognize but didn't) before he started to really "get" that she was incapable of controlling herself. Even when she isn't at her "worst", she would have times where you could've promised her a trip to Disneyworld if she would get control of herself, and I guarantee you that she still wouldn't have been able to do it.

 

How old is your dd, and does she go to school at all? My dd had school refusal issues through most of last year in 3rd grade. It was awful, my heart goes out to you. At the beginning of this year I told my husband that if she started that again that I was going to take her out of school because I couldn't do it again. (Luckily, she is doing great this year). Each day I would work on her until I could get her to school, even if she was hours late, I brought her as soon as I could get here there. I am glad now that I pushed and didn't quit, but it was so hard on all of us.

 

Best wishes to you and your family. I know how hard it is, but if you can't agree, than see if he'll try to agree to disagree for now.... Lame suggestion, I know :( good luck.

Edited by beerae22
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Thanks.

 

Tonight is better.

 

DH and I are talking about other important matters that we agree about tonight. :)

 

DD16 slept until about 4:30 pm today... She got up and put on some clean clothes and pulled her hair up because I told her that a friend of hers had told me today at school (where I work) that she might stop over tonight. Then she sat down and did some online biology. :)

 

DH told her he was glad she did 30 minutes of biology today. :) He told us both he expects her to do more tomorrow and I don't disagree.

 

Most of the time DH and I agree or accept our differences. The times when we don't are hard. Most of the time we do ok with DD and PANS/OCD issues, but when one of us "breaks" for a bit, we need a whole new set of skills for patience and communication.

 

Thanks for being a safe place for me to share and receive support.

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Oh momslove,

I am so sorry. I too struggle with a similar situation. Such strain on the marriage. My husband understands only to a certain extent but then holds Ds up to standards he can't possibly fulfill. I am happy at times that our child showers and brushes teeth or joins us for dinner. I see that he is trying and suffering to just survive sometimes. This causes serious mental struggles. My H just wants everything back to normal and wants to push things to get there. Its counter productive for sure. I do the best I can to educate and keep him apprised our Ds illness and that is all I can do. It's all so complicated that even many doctors don't get it!!!! This will get better so we must all just hang in there and be strong for our beautiful afflicted children. Who could possibly understand this world we are in. Persevere!

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It is all hard. I'm married to an engineer who sees things black or white. With Lyme and PANS things are mostly grey. Another strain is the financial aspect of treatment. I just stopped talking about all the details of three of sick with Lyme which made it easier and he stopped questioning all the bills. It hurt deeply though that he mentally could not get to my level of involvement and caring. I realized he couldn't and never would. He didn't have it in him. This realization also was helpful. I sometimes would think he had bartonella.

Hang in there and know you are not alone in your struggles.

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