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Wednesday, January 19, 2011

Scary times and how we've dug our way out, Part 2

So, one night on the full vitamin regimen with probiotic I didn't think we'd see a single thing.

We were all sitting in the living room playing and watching a little TV when DW comes over and says, "I'm hungry".

We were stunned! I promptly got up and ran to get him food. As I may or may not have mentioned previously, he never knew when he was hungry!! I had to practically argue with him to get him to eat or drink!

The next day, he told us again that he was hungry. He drank a full 8 oz of fluid and by the end of the day, he hit 12 oz.!! This is not a lot in the grand scheme of things but, it was closer to 20oz than he'd been in weeks. For the first time in weeks, we were hopeful that we could keep him from the hospital!

Within four days, the minimum fluid intake was 12 oz. and closing in on 20 oz a day! He went from barely eating enough food to qualify as one meal to closing in on 2 meals a day! To top it off, he quit asking for all his "cheese" foods! Which prompted me to remove milk/casein from his diet on the third day.

That was a rough one because he acted out badly as his little body detoxed for a few days.

After two weeks, he dark purple circles under his eyes, I would come to know as "allergic shiners" disappeared completely! His skin went from grey and very pale white to a soft, porcelain, peach color! He was laughing and smiling! His eye contact which we'd worked so hard to maintain and had promptly disappeared was back!! His meltdowns dropped to almost nothing! He still had them but, they weren't at the level they were before!

Let me explain, if you've not had a Tourette Syndrome child or an ASD child, you'll not understand when I say "rage episode", it does not begin to cover it! There are tiers to rages in TS children or so I am told by the neuro. Rage being the first one, ODD (oppositional defiant disorder) being the second and the third is rare and it is called Explosive Behavior Disorder. This last one is where DW fell into. When he would have an episode, as we call them, he would break windows, tear his bed and bedroom apart, charge the bedroom door over and over again like a linebacker, which would always break where he hinges met the doorframe! This from a little 5 year old! He would hit, kick, bite, scream, etc. Children with EBD grow up to become wife beaters, in jail more often than not for assault! This was the lowest point in this whole journey for me!

So, to see these episodes drop to the level and lower even then when we first added medication to treat them, it was a miracle!

He still tics, especially when stressed or when he can let go at home, after being out are still there but, he went from not being able to finish a sentence, beating himself over and over again to barely having a noticeable tic! I know that there are down times but, even his down times were exhausting to watch! So, to see them just drop so drastically....again all I can say is miraculous!

His anxiety level over his OCD issues and Sensory things, while still there, have also dropped dramatically!

That's not to say that he doesn't have his days or his tics don't explode now and again but, the change simply from the vitamins, which prompted the removal of milk, has made a HUGE change in our lives!

For the first time in years, I have such hope for his future!

Saturday, January 15, 2011

Scary times and how we've dug our way out, Part 1

I know I've not really written a lot here lately....life has taken some crazy turns as of late!

DW's tics, rages, and any other behavior had gotten completely out of control. All the progress we'd made with various medications for his ADHD behaviors and anxiety seemed to just dissipate. His tics became increasingly violent and out of control. His functional abdominal pain took on a life of it's own again. He began to eat less and less, which led to drinking less and less. Since he has small kidneys and we were warned at birth about keeping an eye on them, this whole thing was really starting to scare me.

He began to turn grey and extremely white, dark purple circles under his eyes were now very common to see daily. He was at the bottom, very bottom, of the weight chart and there was talk from the doctor about taking medical action to stop his weight loss even. Already at the 5th percentile for his age group before all this began, the thought of how much he weighed before Christmas was making me sick.

He began to ONLY eat macaroni and cheese and want nothing else! Which having done some nutritional studies six years back when he was first diagnosed with MSPI, I knew could mean only one thing. That at 2 years old when all doctors and specialists reassured me that all kids outgrew their MSPI, they were wrong! I had learned some time ago that sometimes in certain intolerant or allergic individuals, they can become addicted to or crave the one food they are allergic to. So, my son repeatedly asking for macaroni, ice cream, etc. was a huge warning sign to me. Only, at this point, I would give in because some calories are better than none, right? If anyone has a child like this, we all no, that they will go days without eating if pushed too! I know, he's done it!

Right before Christmas I had resigned myself to the hospital stay I knew was inevitable. I was trying to figure out in my head how I would manage two children, one at home and one there. DW again, a very anxiety ridden child would not handle me being away from him, even for short periods of time. His father and him barely got along, so that would add more stress. JD would not understand what was going on and though I know that there are times he understands what I tell him, I'm not sure he always gets it and this would be one of those times.

Needless to say, I was almost beside myself, crying myself to sleep every night, begging, pleading for some miracle to happen. Every morning I'd wake though and it would all be the same. I was desperate and ready to try anything at this point.


Then a lady whom I've come to have much respect for, made a simple suggestion that would change our whole world. Ida, is a wonderful woman who works for and with Sensory Processing kiddos and their families. She had suggested putting DW on a LIQUID vitamin and probiotic. He already got a gummy vitamin because this was the only kind he could handle so I didn't see how a liquid would matter but, it turns out it would make all the difference in the world and lead to some more changes in our lives that so far, have been truly amazing!