Newbie questions about ADD-I, Sensory Integration Disorder (SID)

[AnnieO]

So now we have gone to a reg psychologist and after one meeting we have him saying ds has Add-I, Odd, possible aspbergers, and maybe something else we don't know about yet LOL!

in my humble opinion any doctor who diagnosis's after one visit is not really looking at the child or the situation. This happened to difficult child 2 and he ended up on Concerta which seriously exacerbated the situation. We're working with someone else now who doesn't want to "label" him - he would prefer to find out exactly what's going on in difficult child 2's brain, and if that makes it not otherwise specified, that's fine - but at least we will be able to help difficult child 2's specific situation.

 

[LHB]

Thank you everybody for all your input on this.
First, to set your fears to rest – we DID tell CPS about this last case of abuse and DSD is NOT going back to her mother’s house again. The CPS lady talked to DSD alone (ok, so I was standing in the hallway listening!). DSD told her about the whole incident. She asked DSD about her relationship with me and her answer was, “I love her and wish she was my real mom.” Her relationship with her dad, “He’s awesome.” She also told CPS about the dog poop and pee and how the dog has ringworm at her mother’s house. CPS told me she does not recommend that we send DSD to her mom’s house and that we get the parenting plan changed. So, please don’t think I didn’t report this incident. husband is home from his trip and taking control. We totally agree with you MidwestMom – we will never leave her alone with them again. Her BM (gotta love that acronym) can take her out to dinner on Wednesday’s as she does now, but in a public place, not at her house. And that’s it. No overnight visits, never with her brother without husband there. We will get the parenting plan changed and I don’t think we’ll get any fight from BM because she knows there’s too many points against her.

DSD is torn because she’s a kind hearted soul, but when Dad explained it to her that, no matter how guilty her mom makes her feel, she does not have to live with a person who abuses her and lets her be abused. So, we’re doing our best to help her work through it, but let her know that she will NOT be going back to that house.

Thanks StepTo2, I’ll look into Medicaid. I never even thought of that.
Pookybear66 - In regard to the EEG test itself, it was no big deal for DSD. She thought it was all very fascinating! But, I should have done a little more homework. We drove all the way to the hospital for the tests and the tech asked if I had an appointment with the neuro doctor – which I didn’t know I needed. I thought my next step was to talk with the pediatrician again. The pediatrician finally called me back Saturday and said the neuro’s review of the tests said that “some of her brain waves are poorly formed and abnormal” and that there is “an increased risk of seizures.” What does that mean??!! She didn’t know. Grrrrrr! I asked why she didn’t tell me to make an appointment with the neuro while we were there?? So, now I have to make an appointment tomorrow. I talked with husband and he thinks a neuropsychologist evaluation would probably be a good idea as well. So, hopefully I can get that done at the same time and place where the neuro doctor. I think the pediatrician thought I was just looking for the ADD diagnosis in order to work with the school. But, like the rest of you, I want is to know exactly what’s going on with this girl and how I should be helping her.

 

[susiestar]

It sounds like you are really on top of things.

The EEG I described is sleep deprived, not done while sleeping. You have to keep the kid up until midnight and then get her up about 4 or 5 am (or some similar variation of this). It is supposed to make seizures be more likely to occur so that they can be seen. If the seizures are not seen they cannot be treated as easily.

The description of her just not being there sounds like exactly what my Jessie goes through with hers. Imagine what it would be like to be running across a field and have your brain just not be there. It is worse than even falling asleep for a second or more. We had no clue that the falls she had were more than jsut a really active athletic kid who pushed herself to do things.

I hope that the testing finds the problem and that it can be treated. It can be really HARD to get medications adjusted for seizures. We spent 16 MONTHS getting Jessie to the right level of the right medicine!!! OVer 12 of those were spent titrating up on the medication she is now on. We chose to homeschool for her because there were so many problems with changing classes, etc.. in middle school. Plus not having any adult in the building willing to help and support her, rather than refusing to even speak or email with me and husband and refusing to provide any accomodations at all. They gave us the line that they just oculdn't help her get things written down, or whatever because when she is an adult there won't be someone to do that. She was 11!!

I think that you have done a great job with CPS, getting them on board, getting their support. I hope that you can get a letter from the caseworker recommending you NOT send daughter for visitations.

It is hard when the kids are so forgiving. I think maybe you should change the way you speak/think about her seeing her mom. Take the decision AWAY from her. Rahter than her worrying about what if mom apologizes and promises teh moon, do I need to visit to be a good daughter??? Change it to "Dad and I will not permit you to see her, except in public places, because we must keep you safe."

It might make her feel more protected and safe. It also may keep her from feeling guilty, like she did something wrong (which, of course, she didn't!).

does that make sense? (Not sure I explained it the way I meant.)

Asking the pediatrician neurologist if they know of a neuropsychologist sounds like a great idea. I think that what they explained about some areas of her brain not developing typically may help explain her behaviors and some of the things she does. I don't know a huge amount about brain developement, but I know it continues into your twenties, so she may be able to sort of catch up, or have her brain develop new pathways to process things.

Does she have sensory issues? I know that sensory integration disorder (Sensory Integration Disorder (SID)) is when the brain processes input from the senses improperly. It is possible to actually change the way the brain handles sensory input by doing certain therapies. The best one, used for most if not all cases of Sensory Integration Disorder (SID), is brushing and joint compression. It is a gentle process that helps the brain identify where things are. You have to be trained to do it by an Occupational Therapist (OT) (occupational therapist), but after the training it is quick, easy, provides a few moments to really connect with your child, and is just amazing. I actually saw a HUGE difference in thank you during the FIRST time we learned about this and saw the Occupational Therapist (OT) do it. He went from "I can't. I won't ever be able to do it" to "This isn't so tough. I did a good job." those were his VERBAL statements about cutting out a circle with a pair of scissors and about writing a sentence. Bear in mind he is incredibly intelligent and creative (explained the space-time continuum very clearly and better than I had ever heard it explained - just a month BEFORE this Occupational Therapist (OT) session!).

I am so glad that your kids and husband have you to care through all of this. It really is clear that you love them very much and that you want to do everything you can to help them.

I think we should flush BM right out of the kids' lives!