Well, things are starting to come together as far as the equipment needed. DHS has finally approved the stroller, but get this...they wouldn't approve a $1,400 stroller, but they are approving a $4,000! I don't understand it, but ok at least we're getting one! They still said they wouldn't approve the car seats until after the age of 3, but a local church has raised the funds to purchase the car seats.
As for their medical conditions, nothing has changed and Arkansas Children's Hospital only continues to add more and more seizure medications to their already extreme cocktail. All this has done is make my life more frustating...C.J. is so wired that he's not falling asleep until around 1am! And, like usual, the seizures haven't stopped or even decreased!
I keep asking why they keep them on the medications they are on and adding more when they aren't making a difference and all I get is maybe the combination will work. 1 by 1 they don't work and now we're up to 3 seizure medications all at once 2 and 3 times a day and nothing! When will enough be enough? I'm talking Phenobarbital (Ciera), Keppra (both), Clonazepam (both), and now Zonegran (C.J.). This is crazy! My babies are addicted to these drugs and they are only 2 1/2 and 1 1/2 years old! Not to mention they are so drugged up that they can hardly make any progress in their therapy sessions which is 4 times a week.
Why isn't there a doctor or facility out there that wants to take them in and study them to find out what this is? I haven't found one other child with their condition. Yes, there are others with similar conditions or even all of them, plus some conditons mine don't have, but none that are just like them.
Luckily, they are very healthy babies. They have the seizures, the low muscle tone and the developmental delay, but they aren't ever sick (other then the occasional cold). Every test comes back normal. All their cromozomes are normal, every blood test, spinal tap, everything...normal (except the EEG that shows their seizure activity and the MRI that shows the developmental delay). There has to be a reason!
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I'm glad you are getting the equipment you need to help your kids but I keep hoping and praying that you and you family will find hope and help soon to either reduce or stop the seizures all together, I know how tough this most be on all of you yet I'm not pretending to even know what's going on because my seizures have been controlled for years though I still occiasionally have thembut nothing like your kids. I woner if all them medicines that the doctors keeping adding on to your kids cocktail are playing off one another and lessen the affects of what they are meant to do. You may want to ask your doctor that sometimes too much can be just as harmful as as not enough.
Stay strong and please know that you and your family are being prayed for and in our thoughts everyday. Carrie
Thank you all for your responses, words of encouragement and prayers. We will never give up or stop believing that one day our prayers will be answered.
Hi, Your boys look so happy! It is a blessing that your oldest son helps you with them. Does DHS help with respite? You would probably need a nurse to come in because of the feeding tubes, sezures and medication. You, your husband and oldest son need periodic respite breaks for your own mental health. It is hard taking care of two children with special needs. I know this because I raised two children with special needs. In order to care for them you need to have breaks once in a while.
Have you asked DHS or Arkansas children's Hospital if there is some place in Arkansas that will take them to evaluate them, if not, some place out of Arkansas. Have you looked for a neurologist on line that specializes in children that have so many seizures a day? It is obvious that the meds they are on are not helping so they need different meds. But I am not telling you anything you don't already know.
I will keep your family in my prayers. I know prayers helped me when I was caring for my children.
May God Bless your Family,
Debbie
Well Ms. Lady,
I know things sound bad. With faith, things are not as bad as they seem. The kids are healthy, and thats a wonderful thing. Take that as a blessing and enjoy.Be patient and keep ur head up. All I can say is read. The more you feed yourself knowledge, God can use it to bless you with some insight. God uses your wisdom to answer all questions. Read and study your kids symptoms and give yourself options. If you are using DHS Medical that can be one issue right there. DHS medical, doesn't promise the best of care but that they provide care. You may have to choose another form of insurance to get the best care your children deserve. Its all about money. You have to pay for the best to receive the best. Good luck, to you and your family. I will be praying for you. Don't let frustration keep you down. and READ.
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