Tuesday, November 4, 2008

Know Your Child - AMENDED

When you become a parent, it is part of your responsibility to know your child. Know when things just aren't right, when they are sad, scared or upset. You just learn these skills.

When you become a parent of a special needs non verbal child, you have to know the same stuff above, but you also have to learn the "feel" of your child. His movements, his facial expressions, the way he holds his body. You have to know this child more than you know yourself basically.

When something comes up that is just not the "normal", alarms go off. Sometimes they are false alarms, and sometimes those alarms caught things in time. Regardless, that alarm goes off, and there is instantly a knot in my stomach and tears in my eyes. There is that fear, that horrible gut wrenching fear, that there is something else wrong with your child.

When the alarm goes off, you react and you react quickly from fear. Then begins the guessing games. Because he is non verbal, and his age (3) he can't answer you with any certainty yet on what the issues are. It sucks. It more than sucks.....it sucks big goose eggs! the whole time you will have this knot, and even after all the tests and the comments of "I'm not sure...." you will still always question.

About two month ago, Daniel started with gagging (right after being weaned from his anti-seizure meds). Immediately I figure its because the drug was stopped. But no, doctors say its reflux. Daniel has never had reflux or thrown up in his life until these episodes (and we didn't change anything but the medicine) so they put him on Reflux meds. It seems to have helped a little, except in the morning when he is ready for another dose. So maybe it is reflux, and maybe it isn't.

About 2 weeks ago, Daniel started with these things we call "startles" (you see little babies do this sometimes like they get the sensation they are falling). He's had these before and we've had EEG and they say they aren't seizures (at that time) so we go through these phases where he'll have these startles for a week or so whenever you lay him down. We generally just work through them. Well now he is having them a lot at night when he is sleeping and his arms flail out and he wakes up crying. Multiple times a night. Not good for the sleeping hours!

Two days ago we notice that Daniel has very sweaty, clammy hands and feet. (Never had this before that we know of) he isn't running a fever....can you guess? Nope me neither but don't look it up on the Internet cause it could be a million and one things, some very scary. And when I look these things up on the Internet and I see that its not very common, what would be the odds?
Well crap, what were the odds of a child getting Infantile Spasms (1:6000)? Or the odds of having a rare brain malformation (when he was diagnosed there were approximately 60 cases known in the U.S.)? What are the odds of a child having Spastic Quad CP without having a traumatic brain injury or a difficult birth(1:1000 full term child)? Pretty Frickin' Odd!!
So when I read that something is odd and not common.....well you do the math. I've got one child who has 3 different things that aren't on the common side.
Now whats our chance of having something else that sucks? Pretty frickin' good.
Of course our odds for winning the lottery aren't as good! Of course.

So, I guess what I'm saying is, as a special needs parent......if you're a special needs parent and reading this, when does the anxiety stop? When do you get to live without fear that something else is going to happen? When do I get to get this knot out of my stomach?

Know your child inside and out, because doctors will guess as much as you as to what is wrong. You are your child's only voice.

AMENDMENT: Also forgot to add in there that he has also started grinding his teeth (that aren't in great shape anyways! AND we are scheduled for a 30 minute EEG tomorrow!

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On a different note, watch this video. it will amaze you, and it gives me so much hope for Daniel's future.


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7 comments:

The unpregnantmother said...

I don't think it ever stops . . .

I can't even begin to comprehend what you experience, but we are all thinking of you and praying!

Bird said...

Ugh! I have no idea if it stops--maybe, instead, we have periods of peace and periods of not-so-peaceful.

I'm not trying to tell you how to parent, but I'd go back to the nuerologist. Maybe he's having a different type of seizure. I know a lot of people suffer with seizure medicines, but we have zero problems with ours.

I guess another option would be to start some kind of journal and write down when the episodes happen and what he ate and all that and see if any kind of pattern emerges.

Erin said...

I don't have the answer, either. Please keep us posted on what you find out. You are a great mother and advocate for Daniel and I am sure if there is an "answer" to what is ailing him you will find it.

Jennifer said...

It's scary to have that gut feeling that something is wrong but you can't pinpoint it out. Like you said it sucks. It's an awful feeling that us, Special Need Parents have to experience. Our lives would be so much easier if for one second they could tell us that something is wrong. They don't deserve to go through this pain and suffering and it breaks my heart to see that they have too. I ask myself every day on why God puts us and our children through this, but I don't think I want to know the answer. I am hoping that every one who went to ABR sees much needed progress in our children that we need to see in order to live a semi-normal life without these awful gut feelings.

Justinich Family said...

I don't know if it ever stops either. Like another comment said we have periods of time where things are smooth and others where it is pretty bumpy. Evan was doing some weird stuff the past few days and I just have this feeling that he is on the verge of something. I hope I am wrong. I hope you find an answer and that it is not seizures. I love your statistics about the brain malformation etc.

C said...

Mel --

I don't know if you guys have any news about the startling thing or not, but Q's combo of trileptal and clonazepam is addressing EXACTLY what you describe. Email me if you want -- maybe our neuro docs should talk...

As to the fear -- I think ya have to push it back. I mean, I have a cell phone that my folks put on their plan because I HAVE TO HAVE ONE. What would I do if Q were to have, God forbid, a grand mal and I was in the middle of nowhere with the kids *by myself*? This is not an unlikely scenario, given the details of our lives, so I have a phone I can't afford. That's me pushing back the fear. And most of the time, it works really well. Also, and I'm quite serious about this, I think us mamas should remain open to meds for *ourselves.* Realistically speaking, we carry a heck of a lot that would break most people if they had to it dropped in their laps out of the clear blue sky. We keep on keepin' on because these kids are our babies and that's what a mama does. Duh. But that doesn't mean it's easy or we're more equipped than other people or that we don't need some sleep already!!!

So be it Ambien CR or something else (that kicks up that serotonin), if we need it we should get it. Because here's the thing about caregivers: we wear out faster than the rest of the population. Period. And if we plan to continue to be there for as long as the punkinheads need us, we (and the people who care about *us*) have to figure out how to get what we need, too -- whether it's a good walk or some chocolate or sleep or a better balance of hormones so we can just keep going.

Sigh. I'll hop off my soapbox now.

Hugs and Blessings to you all,
C

katze1976 said...

When my son starts growing out of his dosage of seizure medication he begins to have "pre-seizure activity" that includes some of what you describe Daniel having. He gets more jumpy - the startle reflex..., he gets irratible, he becomes hot and sweaty more easily, his muscle tone becomes more pronounced (he has high muscle tone to begin with and he just becomes so tight almost all the time). I'm not saying that Daniel needs to go back on his seizure medication. It's possible his body is trying to readjust to being without any of the medication. If these things are happening because of seizure or pre-seizure activity it's possible they may go away in time. OR they might be leading up to a seizure. Alan came off his seizure medication around the age of two or three and within six months he had a seizure. I've also worked with his neurologist to let Alan just grow out of his medication but that has always led us to a seizure as well.

As for the teeth grinding thing...it could be part of the above - pre-seizure activity...

It could also have something to do with Daniel growing. Last winter Alan went through a major growth spurt and it must have been extremely painful for him. He locked his jaw shut, grinded his teeth, wouldn't eat, had a mild fever. He ended up in the hospital because he became dehydrated because he wouldn't eat. They tested him for the flu, RSV, and a few other viruses. All came back negative. I believe all his symptoms were simply from a growth spurt. I NEVER want to go through that again. Alan didn't sleep for more than two hours a day and this lasted a full month. He was not back to normal until two months after it started. It was horrible.

As for the panic and anxiety - it has never gone away for me yet. It subsides during good times when everything seems normal and we just got used to how life is. Then BAM! something happens and all the panic and anxiety comes crashing back in on me again. It's horrible. I definately lean on my family to help talk me through so many emotional times. I think in the end I'm gonna have to go back to anti-anxiety drugs though. And that's fine. Whatever makes me in the best shape to care for my special needs child that NO ONE else will take care of properly because no one cares about him like I do (and my parents). --amy