DAN doctor follow-up

OK, so I have been processing the enormous amount of information I received on Thursday regarding all of Olivia's test results. It seems the biggest thing screaming at the doctor is a yeast problem. She said her stool analysis came back pretty good, but the Organic Acids test is showing a pretty big fungal imbalance, most likely in the gut (though I have heard it can be elsewhere, like the brain... ugh). She is also having trouble metabolizing fatty acids, as well as digesting and absorbing protein. She has high ammonia markers, likely due to her not breaking down proteins well. She had a mild reaction to milk, and needs to stay away from it. We will stay GFCF for now, as the doctor said that if she has not had gluten in her diet, the test may not show a reaction to it, so we're  not going to mess with it at the moment. There is evidence of chemical and heavy metal exposure, particularly to xylene, aluminum, and silver, (it was explained to me that we are all exposed to so many of these things, but the difference is that Olivia's body is not sulfating or detoxing the way that it should be) and she tested low in trace minerals and very low in lithium.

It's amazing to me what all of these tests can show us. The treatment plan involves killing the yeast, and taking several supplements and homeopathic remedies. We should make additional dietary changes as well, mainly limiting intake of refined sugar and carbohydrates (feeds the yeast). It is my understanding that alot of what was reported above can happen as a "domino effect" from yeast overgrowth. So... a lot of work to do on the health-front.

Personally, I have really been struggling emotionally. Seeing your child hurt or struggling... I don't know if there's anything that could hurt a mother more. She's had a couple of rough days at school, one in particular. But what everyone (including myself and her teachers) needs to remember, is that she has ALOT of good days, some VERY good. There was a situation last week that was handled badly, in my opinion, and to say it broke my heart into pieces... well, that's an understatement. While I can understand the teacher's frustration, (believe me, I live with my daughter and know how hard it can be, and I've also been on the other side of this as a teacher) I believe her words and actions were the result of just that- a frustrated teacher who did not think things through, nor check with her supervisor on what she was threatening (to no longer allow my daughter into her afternoon enrichment class on Thursdays). I am very forgiving of how this situation was handled, as this school has been very good to our family, I just pray that nothing like this happens again. The whole team will be sitting down together after Thanksgiving (us, her teachers, the director, her BSC- behavioral specialist- and the county director of the agency providing services) to come up with a behavior plan that takes into account the problem behaviors at school AND my daughter's diagnoses. I just think a big part of the problem is that the teachers just have no idea how to deal with some of these situations (through no fault of their own). There needs to be some training on some of these increasingly common disorders, because believe me, my daughter is not the only one struggling at this school, and she certainly will not be the last to come through their doors, unfortunately. It is these kids- the very high-functioning ones who don't qualify or belong in a special-needs preschool- that so often get lost because the teachers are not trained to deal with any kind of special need. Now, she may in fact need a TSS at school, and that's fine... as they really just aren't equipped to deal with some of this stuff, like they hopefully will be when she attends public school kindergarten next year (I think I just had a panic attack). I was just REALLY hoping she could do this. And I would like to believe that she CAN, with some modifications. I just don't know if the school can provide the modifications without a TSS. The problem is it's not a quick process. We're ahead of the game because we already have an agency and BSC involved, but we still need another eval to prove medical necessity, then there's a county meeting to determine whether they will approve services in school, or not. I also just heard through the grapevine that it is very likely that they are doing away with services for ADHD and the like, and she needs to have an autism spectrum diagnosis in order to qualify come this spring. So... I don't know what's going to happen there. It is very frustrating because when you put her three diagnoses together, (ADHD, Anxiety Disorder, and Sensory Processing Disorder) it often can appear that she is on the spectrum. And if I'm being 100% honest here, I am not convinced yet that she does not have Asperger's. We shall see how things transpire over the next several years, I suppose. Either way, that is not the diagnosis that she has, even though SO MANY of the behaviors are the same. We still need help. But it may be taken away. And that's bullshit. But... it is what it is.

Yesterday my babe had her preschool Thanksgiving performance. My usually happy, upbeat little girl who absolutely LOVES to perform had a pretty bad day. She had practiced and practiced her lines and songs and she was SO ready... but her day got completely thrown-off by some relatively normal occurrences... it's just that these kinds of occurrences are anything but normal for Olivia. She had been fixating on the fact that Mommy forgot to send something last week with her to share for Letter H week. I don't know how I missed this announcement or lost track of it in my head, (could have something to do with making her special homemade hot chocolate that morning since someone was bringing in hot chocolate, or gathering her special ham and cheese since someone else was bringing ham and cheese, or maybe just my emotional meltdown that had happened over the previous two days) but it didn't matter- she would not let it go. So we made sure to take something on Tuesday and I asked her teacher if it was okay if she shared something, she said yes, that was that. Well, with all of the craziness of the Thanksgiving party and play, the teacher forgot. Totally expected, but of course Olivia didn't remind her, and when she realized she wasn't going to be able to do so, she was pretty upset, which came out DURING her play, when something else happened to throw her off. She was fidgeting around on stage, as she does, and stood on her drum and ended up breaking/bending it. I should have known better and gone right up there and fixed it immediately, but I didn't... and she came off the stage and just started to melt down. After that it was pretty much over. She completely missed her turn to say her lines and she came off the stage and cried a couple of other times. It was just heartbreaking to watch and there was nothing I could do about it. That's not my girl! She LOVES to be a star, and was SO READY. But when things go awry or not as expected, she just can't handle it. I am still crying about it every time I think about it, as I am about what happened last week.

I was reading something the other day about parenting a child with special needs... something about allowing yourself to grieve for the child you thought you would have, etc. and then beginning to accept her for who she is. While I understand and appreciate the comment, something about that statement doesn't sit well with me, or perhaps it just doesn't apply to the type of special needs Olivia has. She is EVERYTHING I thought she would be, and MORE. Way, way more (sometimes too much more- LOL)! She is not perfect... but who is? She is not a "typical child," that's for sure. But she is SO MUCH MORE than typical, and because of that, she gives me even more than a typical child would. Does that make sense? She is SO PASSIONATE, so full of energy, so full of life, and has more love in her little body than you can imagine. It certainly isn't always easy being her parent, but I feel like I am rewarded so much more. Does it make me sad that she can't sit nicely for a tea party and behave like a little lady? Not really. I really don't care. Maybe occasionally it bothers me a little that she's not a typical girly-girl, sweet little lady... but only when I compare her to others. When it comes down to it, there's absolutely nothing missing... there's nothing I have lost or that I am grieving... there's just MORE. And we just need to keep working to channel properly what's "more" about her. And that is not reason to grieve... that is reason to celebrate!!