Showing posts with label doctors. Show all posts
Showing posts with label doctors. Show all posts

12/17/08

IT'S A MIRACLE

Yes, I made it through the majority of my to do list yesterday. I did not get to the playroom, however, and that comes today...god help me. I do not exaggerate when I tell you it looks like a bomb exploded in there. No matter how many times I try to organize that room it is to no avail. A is not a organized kid. He likes his toys all around him in a heap. He throws them from the toy box, the drawers and the boxes that I use to keep it organized. I promise he will do that before the end of the day today, but only AFTER I have worked my butt off to clean it up.

Last night was the boys' holiday show. And I will blog more about that later. It is my favorite time of the year. And, honestly, just sitting here thinking about it, I am getting teary again...

But right now I want to talk about the miracle that we found yesterday. Something that took 10 LONG years to find me:

NUMBING EAR DROPS

Why has it taken 10 years to find these? Why has no doctor informed me of this miracle before now?

All 3 of the boys (including my stepson) have had tubes. A is on his third set and, without a doubt in my mind, will need a fourth.

This poor kid has been sick since the day he was born. Both my kids have immune systems that seem to grab hold of anything within a few feet from them and it doesn't let go until it has been sure to wreak havoc through their entire bodies and pass it along to anyone unfortunate enough to come in contact with them (my poor sister can probably blame her children's last 10 sicknesses on my kids). But, poor A has a constant runny nose, a cough that starts in October and ends in June and ear infections upon ear infections upon ear infections (unless his tubes are working properly and then they just drain this stinky, sticky fluid - gross, believe you me).

I am not big on antibiotics (and I think I have shared this in the past). Antibiotics are used for BACTERIA and most ear infections are caused by VIRUSES (like the common cold). Therefore, giving a kid (or anyone) an antibiotic to "cure" a virus is not only ineffective but almost as havoc wreaking as the virus itself. Antibiotics kill most all bacteria in its path (including the good stuff that lives in your small intestine - which is what leads to "the runs" when you take antibiotics). The bacteria that it DOESN'T kill then starts to become resistant to antibiotics (this also happens if you don't take the antibiotics correctly) and we end up with the super bacterias like MRSA. Having said all that, when kids get ear infections if they do not clear up quickly enough it is possible that the fluid sitting in the Eustachian tubes will grow bacteria and they DO need antibiotics - but there is no way for a doctor to know by looking at it. Of course, antibiotics are AMAZING as well, just way over prescribed and thought of as a necessity by too many people (including doctors).*

Okay, off my soapbox and back to my story...

I don't often bring him to the doctor if he has an ear infection because I know that, most of the time, they clear up on their own. His pediatrician has been great about working with me on this and agrees that, more often than not, antibiotics are unnecessary when treating ear infections.

This one was bad, however. A had been sick for over a week, had a strange rash all over his body (that the medical assistant tried to tell me was a heat rash - I asked her to step outside to remind herself of the temperatures) and, most importantly, he had his holiday show that night and he NEEDED to get to it. No way was I going to keep him from it. But he was MISERABLE and I knew we needed to take action.

So off to the doctor we went. Well, actually, off to the nurse practitioner since all the doctors were booked. We spent about 5 minutes in the office (she informed me that the "rash" was just his eczema acting up and it appeared to be inflamed because of his virus) and left with two prescriptions, an antibiotic and THE MIRACLE: numbing ear drops. I am okay with the antibiotics this time since the stuff coming out of him is colors that only show up in nightclubs lit with black lights. In other words, it was neon green. But the miracle, oh the miracle of all miracles (makes me think of Fiddler on the Roof* - I told you I was a geek) were the numbing ear drops.

It makes me wonder why I was never given these before. I do not joke when I say that my kids have had more ear infections than I can count on both my fingers and toes. And everyone that I have spoken with about them since says, "oh, I have about 3 of those bottles in my medicine cabinet, I would have given you one" or "you've never heard of those".

After bombarding the nurse practitioner about the safety of them I have decided (with her help) that from now on, we will be using those ear drops at the slightest sign of an ear infection. Since they also loosen wax (which tends to build up around A's tube) it will help keep his ear clear so they can drain on their own.

And, I fully intend on bombarding his regular pediatrician with questions next time I see him (which will, more than likely be sooner rather than later) as to WHY he has never prescribed these before - because, as you parents know, ear infections only seem to bother them in the middle of the night when nothing in the world you do can console them!

And, most importantly, A made it to his show last night and performed perfectly! More to come on that in a later post...

*I am not a doctor, I do not play one on TV and I do not pretend to be one. If you have concerns about antibiotics speak with your doctor. Google it, do some of your own research and don't diagnose your kids yourself (like I tend to do).

*

7/29/08

Dear Michael Savage: Come live my life!

About two weeks ago radio talk show host Michael Savage made some insensitive, ignorant remarks regarding autism. Honestly, I had enough going on in my life at the time and decided to ignore it. I've got enough stress, I don't need to add more, knowing that the rest of the autistic community is going to voice their outrage.

However, a few nights ago I couldn't sleep. I was up at 2am watching stupid television...Entertainment Tonight or The Insider or whatever - it was one of those stupid tabloid shows. Whichever show it was aired a clip on Savage's remarks which I quote:



Now, the illness du jour is autism. You know what autism is? I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is.... What do you mean they scream and they're silent? They don't have a father around to tell them, 'Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot.' Autism—everybody has an illness. If I behaved like a fool, my father called me a fool. And he said to me, 'Don't behave like a fool.' The worst thing he said—'Don't behave like a fool. Don't be anybody's dummy. Don't sound like an idiot. Don't act like a girl. Don't cry.' That's what I was raised with. That's what you should raise your children with. Stop with the sensitivity training. You're turning your son into a girl, and you're turning your nation into a nation of losers and beaten men.


I have to say, Michael Savage, come live my life.

I am not going to talk about all the research that goes into autism (which is not nearly enough for the epidemic that it has become - 1 in 150 children), I am not going to talk about the YEARS it took to get A diagnosed (he was 5 before anyone aside from his pediatrician took us seriously), I am not going to SCREAM about the services we started receiving when A was 9 months old to "reverse" what autism has caused (intense weekly therapy to make him talk and look you in the eye and increase his motor skills)...I won't share that because NONE of that describes what we live with every day. None of that talks about what we, parents of children with autism, deal with on a daily basis.

As I write this I have gotten A out of the refrigerator 4 times. I have watched him eat 4 yogurts today. This is not because the child is hungry, it is not because he has Prader-Willi Syndrome (I know, we have had him tested) it is because he has an obsession with food. He finds something he likes and he can't stop eating it - all or nothing.

I have taken him to the beach, pulled him away from another boy's toys kicking and screaming, watched him knock over a mother and her child (that we do not know) trying to "say hello" while giving them a hug in the water and heard him talk incessantly about "Scout" the two year old that was kind to him and he has adopted as his new "best friend".

I have fed him every meal and watched him pick and choose what he ate while going back to the fridge for something I didn't put on his plate. He will eat anything and everything ON HIS TERMS.

I have pulled him off the counters 3 times, once off the fridge because he wanted something on top of the fridge or to flood the counter with the sprayer hose on the sink or to get something out of the freezer.

I have watched him hit his brother in the head with a toy for no apparent reason. Z has taken more abuse than any child should at the hands of his little brother.

I have listened to his shriek at a level only dogs should be able to hear because Z looked at him. The neighbors moved out a few months ago...there were numerous noise complaints.

I have changed his diaper 5 times, his swimmer once and gotten him dressed twice. His motor skills (and attention span) do not allow him to get dressed on his own and he is not potty trained (although yesterday we made it 5 hours in underwear).

And I have disciplined. I have put him in the corner, I have taken toys away, I have made him sit on the picnic table at the beach, I have threatened, I have yelled and I will be honest, in the past, I have tried spanking (and stopped because it doesn't work)...

This is my day...just today.

Tonight will be no different. You see, A does not sleep. He wakes anywhere from one to a dozen times each night with more energy than that stupid energizer bunny. I cannot remember the last full night of sleep I have gotten (in fact, 3 years ago I was in a major car accident in the middle of the day because I fell asleep at the wheel).

And there is rarely a break. While my family loves my children, I rarely EVER leave them with anyone. I am terrified of the havoc that ensues...and A gets terrified that I will"never come back". And, let's face it, nobody can watch my kids as well as I can...need I remind you of what happened in October?

I need to make VERY clear that I am one of the fortunate ones. There are many things that A does that children with "more severe" cases of autism do not.

My child speaks and he speaks clearly. He tells you how he is feeling, why he is feeling that way, when he will stop feeling that way...he talks like there is no tomorrow. Matter of fact, he doesn't stop talking. He even talks in his sleep. Whether or not what A is talking about makes any sense or has anything to do with what you are talking about is a very different story.

My child reads. He reads at a level that no kindergartner should read at. He reads everything and anything. He reads street signs while we are driving, emails over my shoulder, my blogs and ANYTHING else he can see.

My child is VERY social. Honestly, a bit too social. He could be taken in a moments notice. He would walk away with anyone. But that is because he loves people. He wants everyone to love him. But he has NO idea how to be a friend. Adults love him to pieces, children are annoyed by him or scared.

My child has no fear unless it is extreme fear. It is all or nothing, black and white. There is no gray area. He has no idea of what safety is. He will run out into the street but be terrified of getting run over. He will walk out into the water over his head but is terrified I am going to dunk him. He has an obsession with all emergency personnel and their gear (trucks, cars, stethoscopes, etc) but is terrified he is going to be arrested.

He has no boundaries. He does not know how to take two steps back when he is talking with someone. He hugs everyone. He forgets that someone might not like to be touched. He doesn't understand that the neighbor does not want him in his home. He forgets that his private parts are his and nobody else wants to see them or hear about them.

My day consists of being on high alert - all the time. There is no rest. I must be sure that I have his hand if we are anywhere near the road. I must be sure that I get him out of the fridge every time he runs for it or he will eat the raw hamburger sitting in there to defrost. I must be sure to stop him from tackling other people, "stealing" their toys or eating their food. I must avoid all dirty looks I get in the grocery store/post office/restaurant/playground because people want me to just discipline the naughty kid who screams when I say no or runs behind the counter or screams "FU@&ER" at the top of his lungs...


And you may wonder why he doesn't keep himself occupied. Me too...he has a room full of toys, trains and planes and books and stuffed animals and everything in between. He may play with one toy for 15 minutes - and he will play the same thing over and over and over,drive the same truck on the same path, bang the same two cars against each other... But he is not interested in really playing with his toys. He will not play with another person. Again, he is black and white and he either plays his way or no way and more often than not - it is no way.

And through all this, I see an angel. He wants nothing more than to be a good boy that everyone loves. He tells me on a daily basis how much he loves me and that I am the "best mother ever". If you gave me a pill to "fix" him I am not sure I would give it to him...because then I might lose the child that I love so very much.

Having said all that, Mr. Savage, please, come and take a day. I swear, if your discipline works, I will NEVER AGAIN mention the word autism. I will never believe a single person that says their child has autism.

Honestly, I could use a few hours to grocery shop without a child that eats/opens/throws everything I put in the cart. I would love to use a public restroom without a child that opens the door while I am sitting on the toilet - pants around my ankles. I would love to go to a movie where I could actually sit down and enjoy it rather than walk in and out 5+ times with a child who can't sit still. And I am sure that Z would love to have a day alone with his mommy.

And, in the end, I will become your biggest fan. And I know that I can say that and ask that of you, without any fear of my child being changed, because it doesn't work.

Lastly, I want to thank you. I want to thank you for making those statements. I want to remind you that no press is bad press. Your insensitive, ignorant remarks have caused enough of an uproar in the autistic community that idiots like you have now been educated. You have affected more people then you can imagine...thank you for helping to change to world for my son.

7/24/08

Another day of doctors.

A had another doctor's appointment this week. This one was a little more intense, however. If you remember, this was our February vacation. It was really a "sickation". And the week that Andrew had his most severe seizure.

A few months later we were finally able to get in with a wonderful pediatric neurologist that suggested an MRI. So off we went to Dartmouth for said MRI...

Living here in the boonies, we have gotten use to traveling for anything. This includes doctors (especially specialists). Dartmouth is over 100 miles away or 2.5 hours...

I have also learned that any appointment that has to do with anesthesia should not be done in our local hospital. Since an MRI requires you to be still for 45 minutes to an hour, anesthesia was a necessity for A. Dartmouth has a CHaD Pain Free Clinic with a team of anesthesiologist that specialize in children.

Dartmouth was the place to go. Period.

And besides all that, I get to drive by my very favorite rest area :)

This morning I dropped Z at his rec program for a day of "jello wrestling"....and off A and I went to Dartmouth (remember how last week I wrote about how I will NEVER again take two kids to a doctor's appointment together).

Not ONCE did he scream or kick or cry. Not until we were actually less than 5 minutes from the hospital did he start with the "are we there yets". It was AMAZING!

Kirby did not come with us so I did get a taste of single motherhood, however. We got there a little early and I had to fill out some paperwork. They made us wait in a hall and told A he could climb on the bear statue if he wanted. That lasted all of 2 seconds. Then he was off and running...looking for the playroom...running in and out of offices...ugh!

When they finally got us in he was able to play in a small room with a bunch of toys. He was in heaven. They had a garbage truck and a fire truck and a play mat with a road on it. This was A's territory! He loved it!

When it was time for him to go in they allowed me to be with him when they put him out. He was allowed to choose which "flavor" mask he wanted. Unfortunately he wasn't all that fond of the cherry he chose and he was ESPECIALLY not fond of having it over his face. Soon enough, though, the gas kicked in, he went limp, I kissed him goodbye and off he went.

They gave me a pager, told me that they would page when he got back and sent me on my way. I was told to expect everything to take about an hour so I set the alarm on my phone for 45 minutes. I wanted to be right there when he got out. I didn't want to have to run from the other side of the hospital to get there - or get lost while I was trying to get there.

Less than 20 minutes later the pager went off. I threw the food I had just bought into my bag and ran back to the ward. It ended up just being a dead battery...so I walked back down to the cafe and ate my lunch.

Within 45 minutes I was back on that ward waiting in the hallway - a bit impatiently. I watched them wheel him past me from the MRI room...he was still sleeping (although the nurse was talking with him - so sweet). 15 minutes later nothing - no page - but I couldn't hear him crying so I knew he must still be sleeping.

30 minutes later I finally got paged and the nurse informed me he was still sleeping and I could wander a bit more if I wanted. I informed her that I had been waiting in the hallway the whole time and there was no way I was going anywhere (this is not A's first time experiencing anesthesia - he has had 4 surgeries - but I am not the kind of mom that leaves her kid while they are in the hospital - asleep or not).

An hour after the page I was wishing I had gone for a walk. He was still sleeping...the nurses were getting frustrated because he was their last patient of the day and they couldn't leave until he did. And they kept trying to make small talk and kept asking why I didn't just call my "husband" rather than text him (I didn't feel like explaining to them that Kirby and I are barely on speaking terms and that texting was the only way I could "speak" to him without the voice of the devil coming out of me).

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He was so stinking pitiful...you should have seen the drool!

90 minutes after the page we forcefully woke A. Sat him up, shook him a bit, gave him his new toy (an Oscar the Grouch puppet I got in the gift shop), took out his IV (that they put in AFTER he is asleep so he never gets stuck with a needle) and "sobered" him up a bit. 10 minutes later we were on our way (after I figured out how to get him and all his stuff down to the car by myself...he couldn't walk, I couldn't carry him and all the stuff and the nurses weren't much help).

He was a bit groggy on the way home and didn't really say much (although he was awake the whole time). Again, no screaming or yelling (from him OR me). He started to get antsy about 20 minutes from the house but other than that it was a PERFECT 2.5 hours.

A day this perfect has solidified my decision. No more than one kid at the doctor's office at a time.

I have also been convinced that mommies can handle ANYTHING! This was not an easy day. Honestly, it would have been so nice to have someone else there to help me keep him occupied, someone to hold my hand while I was waiting, someone to cry to when I got nervous...but I did it by myself.

I didn't get lost, I found my way to more than one place to pee on the way to and from the hospital. I found Dunkin's in towns that I had never been to. I made my way through an enormous hospital without getting too lost. And I didn't kill the car.

I also was able to drive down I89 at 70+ mph, while wiping A's dirty hands in the backseat and not miss a beat! Mommies can multitask single or not.