URGENT PRAYER REQUEST!!!!
Hello fellow Marchers,
I have to share an urgent prayer request with you about my son, Traeven (Trae)......he is 8 years old, one of our adopted sons, he has been with us since he was 3 years old. About a year ago strange things were happening and we would find him laying on the floor and very disoriented. To make a long story short, he was diagnosed with Epilepsy. Which was added to his diagnoses of Tourette's and Depression. Over the past few months he has started to have what appeared to be more seizures, but were ruled not to be thru some different types of EEG's. Now the past two weeks, he has gotten MUCH worse. He is having cognitive problems; forgetting the simplest tasks or academic things he knows, like how to count past 4 or 5. He sleeps an average of 18-20 hours a day, does not eat and is loosing major weight, has been hallucinating that there are spiders climbing on him and sits and picks them off himself when he is awake. And can be walking or doing any activity and will drop to the floor sound asleep as if complete comatose. You can not even begin to budge him. The neuroligist is beginning to think it could be narcolepsy, but we can not get him into a sleep clini****il July 1st. I agree that there maybe some sleep issues, but I am more leaning to thinking these things are all symptoms of some other disorder that hasnt been figured out yet. We have had to withdraw him from school and now we wait patiently and wonder what will happen tomorrow. I ask that you pray for an opening sooner in the sleep clinic and that the Doctors can figure out what is wrong with him. he has no quality of life the way things are now, and it is killing me to see him in such trials and not to be able to do anything for him. I keep hoping I will find someone who knows someone with a child who has had some of the same issues and they will be able to help us out, so I put that out to each one as well. If you have any thoughts or know someone who might, please send them my way. I am beginning to worry that we are running out of time and that the issue has gotten more serious than any of us or the medical people realize. We have no genetic information to go on and no medical history so we are just grasping and holding on to the hope we are so sure of in Christ. Thanks for your time and please pass the word onto anyone you know who will pray for my son. Thanks, Janelle
Hi Janelle I will keep you in my prayers. I have a son who is now 30 and as a baby had many health problems and we would take him weekly to the pediatrician and could never get any good reasons as to why he was so sick. We finally went to a teaching hospital in Chicago ( Rush- St. Lukes) and found out that he has a major heart defect and cerebral palsy, maybe you need a second opinion at a bigger hospital that is known for its neuro department (pediatrics), we have even gone to Mayo in Miinn. to get a second opinion and they were very good also. Good luck and don't quit fighting for answers. Trish
Oh my goodness..your poor family! This is awful. I imagine you are just a wreck. I will pray fervently for your son Janelle..miracles happen, I bet you will get into that clinic sooner. Stay strong and keep the faith.
And try to still take care of you during all this too. I know that may sound trite..but you are still adjusting to your new post op situation and I bet it is easy to forget your own needs during a crisis.
Keep us posted.
God Bless,
Kris
Janelle -
Poor little guy! I will keep your family in my prayers for sure. I was reading recently about Tourettes, narcolepsy and other related disorders. I cannot remember exactly the content of what I read, but I do believe the stuff I was reading was saying these things were all related to each other. I'd have to read up again - I think it was in the book Driven to Distraction which is about ADD. In the back they had a section on Tourette's and they touched on epilepsy, tourettes, ADD, narcolepsy and the medications that help those conditions. Appears that many of them may be related, but how exactly wasn't clear how. Either it's because I wasn't able to absorb the info, or maybe they themselves hadn't drawn the lines between them.
Either way, you may be right that this is something else related. I do hoped they find the answer for him soon.
Dina
You have been added to my pray list I will pray for your son. Please keep us posted as i like to know what to pray . I will also pray for your famoly as a whole . I am praying for strength for you and your husband. do you have other children as well? I will also pray for them. The good Lord God will get you through this. Sarah T
Janelle,
As I read your post I heart goes out to you. I have not had to experience this and I pray that you will not have to for very long. I know that my Jesus is still in the healing business. I will be in prayer for Trae and your whole family.
Take care of you,
Shannon
The Irish Lassie
266/223 an holdin/145
Janelle,
I understand what you are going through. I have an internationally adopted daughter - no history. I went nuts about 4 years ago when she began having unexplained behavior. I was sent to one pediatric neurologist that was supposed to be highly respected in his field. I walked out thinking he was a quack! He had diagnosed her as being a cocaine baby, among other things - after only 5 minutes of being with her! Needless to say, I found a different pediatric neurologist and have had some peace of mind - she is now on medication that is working along with therapy.
The reason I'm telling you all this is to emphasize the importance of a second opinion. Like Trish said, you need to find somewhere that will look at him right away. If you are comfortable with your doctor, then maybe there is another sleep center that you could go to. The field of neurology is exploding with new finds all the time. Maybe a larger, more funded, center would have more knowledge and be in a better position to help Trae.
I will definitely be praying for you, him and your family as you go thorugh this. Just remember - there is an answer out there - someone will have it. You just need to find that someone! And with God's help, you will.
mgm
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