Well,
We added Depakote Monday. I can kind of see a difference of less seizures. He had only 5 seizures today! I don't know if it's the depakote or his ear infection is better???? Who knows.
He is still happy and so sweet! I went to the first step library and checked out some toys for him. One is a scooter, it looks like a skateboard but it is square. I put a pillow on it and velcro him on it. He kicks his legs and tries so hard to push it but hasn't figured out how to get his feet to grip the floor. Right now he just looks like a turtle on its back. Kicking but not going anywhere. lol THe way he's going, he'll figure it out soon.
All I can say is whoever is running MS Medicaid isn't doing it right. They are causing more problems and spending more money when they say they are trying to save money?
For kids like Matthew that are on Medicaid, here's how the prescription law used to go.
They can get 2 name brand and 3 generic monthly. A total of 5 prescriptions. If the doctor sends in a plan of care form, they could get unlimited prescriptions. That's for ages 0-21.
They only had to send in ONE plan of care with all the regular normal monthly meds on it. Withing 24 hours they would get a prior approval number from medicaid and that would last for six month to a year.
NOW guess what? No more sending in the plan of care just ONE time. The doctors have to send in a POC form EVERY time a prescription is upped or if the child adds another prescription and has already had five that month. The turnaround time for an approval number is 1-3 days!! That's because Medicaid is being bombarded daily with approval numbers now.
What is the difference? The children that were gettting more than five prescriptions, still need more than five prescriptions!!!! They are just causing the doctors and nurses to go crazy with all the paper work. I know I have talked to our nurse about 4 times this week because we ran out of Kolonopin and they had not approved it yet. WE got a new prescription for Depakote and no approval on that either.
Matthew was discharged from speech therapy and occupational therapy last week. When the new changes went into effect July 1st. All the kids, already on medicaid, most had already had been approved for the therapy. Now they had to send in NEW prescriptions for all of them and wait on a approval number before. Rumor is they sent in 600 applications and prescriptions for kids they had already been treating and had approvals on but they had only received back about 7 approval numbers. After waiting over a month, MidSouth therapy could not continue to see the children without being paid and I don't blame them for that. So right He's not getting speech therapy or Occupational. I am going to get it where he gets his physical therapy and once again, I have to get prescriptions and plan of care for medicaid. I'll have to wait again.
So in MS there are 500 kids, most under the age of 18 not getting PT, OT or ST because of this medicaid change. Kids 0-3 in the Govt. funded First Steps program are not going to be funded anymore because once again, rumor is they government is not going to help with that program anymore. They say they will be out of funds by March 06.
So they are doing Restructuring? Sounds like someone has lost their marbles. Shouldn't you do the restructuring first before you cut off our children from much needed therapy.. Believe me, If Our kids didn't need therapy, we wouldn't be getting it for the heck of it and be waisting medicaids money, or should I say OUR money, the TAx payers of MS???
Here's my Medicaid Restructuring Plan. (When I say ME, I'm referring to the tax payer)
1. First of all, someone that works for ME shouldn't be making more than ME. You should have to go through ME before you give yourself a raise. (THis is for ANY Government JOB!) If you are doing a good job, then WE will vote on it and let you know withing 30 days if you have been approved for a raise or not. Meanwhile, you can call OUR 800 number and be put on hold for hours if you want an explaination of why you can or cannot have your raise. You can also be transferred to 3 different Taxpayers that will give you three different reasons you can't or can have a raise, they you try to sort it all out and find out if you really got the raise or not?You can even call another number that will tell you that you HAVE been approved and they will even give you an approval number to give to US but it wont do you anygood until WE actually give you the number to your boss. (HUH?? That's what I said)
(That's how I feel when dealing with prescriptions) We will be very RUDE to you no matter how desperate you may be. And PLEASE, don't make us repeat ourselves on the phone. Remember you work for us. We get very upset when we have to repeat ourselves.
That reminds me.
As for the Lady at Medicaid that was VERY RUDE to me you better watch out because I'm not putting up with that anymore!.. I will get your name or any other persons name that treats me like I am an Idiot when in fact YOU are the idiot because you work for medicaid and I knew about the changes before you did but YOU instisted that I was wrong by repeating "LIKE I TOLD YOU" and I JUST TOLD YOU. I was so mad I could have screamed. I was already transferred 3 times before I got this Old Witch on the line. (Sorry but I am fed up)
2. Have an equipment exchange program. For instance. Matthew outgrows his stander. I can call one central location. They have someone fit him for a larger stander that another child has ourgrown and sent to the program. There, he has a stander within a few days. Most equipment that is outgrown rarely is worn out by kids like Matthew. THat way parents can't sell their equipment that medicaid paid for at places like EBAY that their children have outgrown. Then get Medicaid to pay new equipment. If the central location doesn't have what a child needs, THEN medicaid can buy them one.
3. What kind of insurance does Government Employees have? Blue Cross? How can they afford that? WE can't afford that! That will have to be eliminated. I have no insurance at all because I had to quit my job to take care of Matthew. My husbands insurance is so high it would take most of his check to put me on it.
4. Get rid of the government cars, government credit cards, cell phones, leather recliners, Immaculate Offices and Mansions. Move into a doublewide trailor, you know like the ones you use for classrooms? It's good enough for our kids so it should be good enough for you. You pay for your own lunch and gas to and from work, just like we have too.
If you don't like this, find another job, we don't need you. There is always someone in MS that needs a job. It doesn't require a college education to do what you do. Just experience and an honest heart. Keep your hands out of OUR money. Where is our percentage of Revenue from the Casino's promised for education? Where is the tobacco money? Why is it so hard to dip into these funds to help the medicaid program? You don't need a NEW convention center either. Use what you already have. Or you can buy another doublewide for that.
5. If all this fails and MS Medicaid fails, we will have no other choice but to move. Besides, MS Medicaid is one of the worst medicaid programs in the US. (That's what I read). I hate to mooch off another state but I'll do what I have to do for Matthew. Maybe that's what you want US to do anyway
6. NEW Subject: The Mayor of Vicksburg Doesn't Return emails, Doesn't even acknowledge receipt of them. Mr. Mayor, do you know that all the money you are spending on "beautifying" vicksburg is very stingy? What about more programs to help the citizens of vicksburg? WE pay state taxes. I see more casino's, more crime,murders,more high school drop outs, more drug use than ever before and you are trying to just cover it up with new roads, trees and pretty little flowers. Just the other day, I'm sitting in the drive through and another man is shot in the head just a few feet from me. He got blood all over those pretty little bricks you put down on clay st last week and his car rolled into the light pole and over the flower pot you had put there.
Okay, I think I feel better now. I'm just frustrated and sick of all of it. Next thing you know they will be forcing us out of our homes at gunpoint while all the government officials just sit in their mansions, laid back in our leather recliners, counting our money, talking on our cell phones and doing nothing about it..
Bye.
Chalrotte
We upped Matthew's phenybarbitol this past monday. He has had a siezure lasting 4-5 seconds every hour or hour and a half. At night he has them about every two hours. I notice his heart races afterwards. Sometimes the beats seem irregular. I asked the ped. about it and she said as long as it returns to normal after a few minutes he would be okay.
I'm probably going to see If I can bring him in at least for one day to have them watch him at the hospital. I'm calling tomorrow.
How much can his heart take and do seizures like this affect the heart? I would think they would. I was okay with the seizures and willing to wait until the upped dosage kicked in but now I can't even sleep worrying that he will have cardiac arrest during his sleep.
We were told we would have to live with seizures and I am but I want to make sure that I am doing the right thing. WE are trying not to "knock him out" with seizure meds but If they are affecting his heart, I am willing to go up on the phenylbarb or try something else.
HE actually went two whole days without seizures a few weeks ago. Thought we were on to something, now, no matter what I do they keep on coming.
(THese are tonic siezures, lasting 4-5 seconds. He hasn't been sleepy or groggy afterwards until the last few days. THey are wearing him down now and us too) THe don't "look" near as what he used to have and he even completely stopped having myoclonic jerks in the mornings, and he is the happiest and most content I've seen him in two years as far as lying down and playing and smiling and just being a little angel. So I don't want to ruin that either by adding or upping a seizure med.)
I try to live with them and I was doing good, now I worry about his heart.
Matthew has been doing so good for the past few weeks. Even went two whole days without any siezures. I quit counting at 14 seizures between 8 am yesterday morning to 4 am this morning. Since 4 am he's had 6. They are tonics. Only last 4-5 seconds. He acts as if something grabs ahold of him and won't let him go. Sometimes I want to scream LET HIM GO!!!!!!!! He curls into a ball and his legs and arms and whole body is stiff. Sometimes I think his ribs will crack! He screams while it's happening. THen when it's over he acts as if nothings happened. I'm hoping it has a little do do with his swimmers ear. He's been on eardrops for a week now and it's> not infected but had a lot of wax build up. His heart races after the seizures. I would think that too many days like these can cause heart damage. I am calling the neuro monday. Is it just me or does this always happen on the weekends when> the doctors are out of pocket? Our neuro is in India. I hope he's back monday. Meanwhile I am trying to cope with it. Like I tell people, it's part of his life and we have learned to live with it but I can't imagine him or us living with this many, no one should have to go through that all day and night. Even with all this he is still a different baby. He wakes up smiling, smiles and plays all day and goes> to bed smiling. Even smiles after the seizures.. Sometimes he makes a noise that sounds like Uh... you know, like UH, Im so sick of these seizures. Keep him in your prayers and my prayers to all the parents and kids that are going throught the same thing we are.
charlotte
charlotte
I found this pic on disk. I can't believe he was so fat. I never thought he was fat at all!!! He was one and a half in this pic. I guess he kept the fact and grew taller. He weight 23 lbs in this pic and he weighs 27 lbs now and is almost 3 ft. tall. AWWWWWWWWWWWww aint he cute! I miss that baby fat and the curls! He had recently got a hair cut in this pic because we kept some curls in the back you can barely see.
Charlotte
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