What does your child know/understand about his/her issues?

[ssfkat]

I was wondering -- for those with younger children, what do you tell them about their "issues"?

 

We have started the abx and often ibuprofen, and DD keeps asking what they are for. She is used to taking all kinds of supplements, and we have been telling her the abx are new supplements, but she knows what ibuprofen is. She is 8.

 

I told her that, just in case there is something in her body that hurts that she may not know about, and that may be causing her to feel bad/act out, we are trying the ibuprofen.

 

But like most kids in this category, she is pretty sharp, and eventually will start asking more questions.

 

I have never liked labels, as I feel they are too restricting, but at the same time, at some point (I guess after all the bloodwork is in), she will have to understand what we are doing.

 

How much do you reveal, and how much do you protect them, in order to preserve as much normalcy as you can?

 

Telling an 8yo that her brain is not functioning properly seems pretty heavy.

 

What's the balance?

[rowingmom]

DD was 9 when she started treatment for lyme/bart. She knew exactly what was going on - that we were getting her help for an infection, not a "disease", and that most infections could be treated properly with the antibiotics we were giving her.

 

We were fortunate (or perhaps not) that her infection had progressed to a point where she was having physical as well as mental/psychological difficulties, so I just clung to the promise that our LLMD had given me; that treatment for the infection causing the physical symptoms would alleviate the psych ones as well, and it did.

 

One thing I never told her was that I was unsure of the outcome. I told her that her doctor would find the answer, and that neither the doctor or I would stop before she was better.

 

She realizes now that her mental problems were the result of her infection - hallucinations, inability to properly socialize with peers, inability to concentrate, and that they were just as real as the physical ones - light sensitivity, bone pain, headache.

 

She has learned something that few medical doctors or psychiatrists understand. That psychological problems can be caused by infection.

Edited December 29, 2014 by rowingmom

[BeeRae22]

Funny that you should post this , because I was just considering having another talk with my daughter about everything that's one on in the past year, including her Pans diagnosis.

 

My dd's symptoms started just before she turned 8, and she started treatment 3 months in.

 

As time went on, explanations have been necessary, because for my dd at least, not knowing (and her imagination) can be worse than the truth, She's on 3 different abx, and has routine bloodwork (that's never gotten easier) and numerous visits to her Pans doc and CBT therapists, so she needed to understand "why". I don't tell her that her brain isn't functioning properly, but she is aware of basic facts: she has an autoimmune disease (I've explained in simple terms how that works), and that her feelings and emotions are sometimes affected by the disease, and cause ocd and worries that aren't real. She knows that she wasn't like this before, and that hopefully with treatment she will get better.

 

I was thinking that another talk with my dd might be helpful because she's been flairing again from a cold, and I think she experiences feelings of guilt after she's lost control of herself and her behaviors. I think a gentle reminder to her that I understand that it isn't "her" acting that way would be beneficial. She doesn't want this to be happening any more than I do, and I think it helps her to "feel better about feeling bad", if that makes sense.

 

With that said, you know our daughter better than anyone, so you should do what you think is right for her. It may depend on where you are in this journey too, timing is always a factor here

 

Best of luck....