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Jerry's Story

Posted by on Feb. 25, 2007 at 11:20 AM
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Jerry was born October 9th, 2003 by scheduled c-section.  He weighed 8 lbs. 15 oz. and was a typically happy and healthy baby.
  One night when he was just barely 5 months old, his dad and I woke to find him having a grand mal seizure.  Having no experience with seizures, we had no idea what was going on at that point and were very scared and confused.  It is 30 min. to the nearest emergency room from our house.  By the time we got him there, he had been in a seizure for quite some time.  At the emergency room, they told us that he was having a seizure and were able to stop it with Phenobarbatol.  Jerry and I were then taken by ambulance to Arkansas Children's Hospital as his dad followed, where it was determined that he had suffered a stroke.  The only answer we could get about why is that it was caused by a blood clot that somehow made it to his brain.  Maybe it came from his leg, maybe from his heart; they were not really sure.
  We were told at that point that he would recover completely, that because of his age his brain would be able to "re-route itself" and he would be fine.  About a month later, we started noticing rapid movements of his eyes and head, and decided to take him back to the doctor.  Problem was, it wasn't happening when he was at the doctor's office, and we did not know how to explain things, so we decided to video tape.  By the time he was diagnosed with Infanile Spasms, he was having close to 100 a day.  
  Jerry has had several MRI's, EEG's and hospital stays.  He has had surgery for the placement of a VNS, (Vagal Nerve Stimulator).  He is currently 3 yrs. old, has a severe developmental delay and sensory integration dysfunction.  He has been recieving speech, occupational and physical therapy 3 days a week for over two years now, with little to no progress.  He has yet to say his first word, and cannot do simple things such as clap his hands, wave, shake a rattle, push a button or roll a ball.  I worry so much about his future.  
  He currently takes 4 different seizure medications, inluding Topamax, Klonopin, Depakote and Felbatol.  We have tried 9 medications so far, the A.C.T.H. injections being the worst by far....He still has on average 15 siezures a day.
  Right now there are several neurologists discussing what they say is the "next step", if the most recent medication, Felbatol, doesn't work; severing the connection between the two hemispheres of his brain.  I am so scared.  I want to trust that the doctors know best, but I'm just not sure that I can allow them to do this to my little boy.  We will need a lot more research on that... 
  He is a very affectionate and (for the most part) happy boy who loves his mom and dad and sister dearly.  I believe if love could "fix" this child he would be doing really well right now!  Lol.  I do know how fortunate we are to have Jerry with us, that stroke could have cost him his life!  And we thank God for him every day.
  Thank you for reading Jerry's story.  All comments are welcomed.
by on Feb. 25, 2007 at 11:20 AM
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ppat
by New Member on Feb. 26, 2007 at 12:28 AM
I had the VNS put in on 12/22/06. Do you think the VNS helped your son at all? I have heard different stories on severing the nerve. I definitely would want a very good possible outcome that would improve his quality of life before I would have it done. Get more then 1 opinion if you can. Hang in there.
peasntatersmom
by Member on Feb. 26, 2007 at 9:49 AM

Quoting ppat:

I had the VNS put in on 12/22/06. Do you think the VNS helped your son at all? I have heard different stories on severing the nerve. I definitely would want a very good possible outcome that would improve his quality of life before I would have it done. Get more then 1 opinion if you can. Hang in there.
Hi!  Thank you so much for your reply and advice.  Jerry's VNS was put in place August 14th, 2006.  It started out sending the signal every 5 min. for 30 sec. at a time, and was then increased to every 3 min., and is currently every 1.8 min. for 30 sec. at a time.  Are your settings similar to these>  Can you tell any difference since having it put in>  Unfortunately, I can't say that we have seen a lot of result from this, but his neurologist is saying that we have not yet seen the full effect... 
It sounds like you know more about that severing the nerve business than I do.  Have you heard more good or bad things about this>  How successful do you think it could be> (sorry, my question mark doesn't work Embarassed)  Any information is greatly appreciated.
Leslie 
ppat
by New Member on Feb. 26, 2007 at 11:10 AM
Hi Leslie,
I haven't seen a significant change. I can tell that my mood has improved. I always felt so edgy before. Tha is typical for someone suffering from seizures. I have not had the strength increased all of the way. They still have me at 5 minutes of 30 seconds on. It is true that if you are going to see results, it can take 1 to 2 years. It slowly gets better. For some people they see a significant change. Not all of us are that lucky. When I was 15, my neuorogist wanted to sever the nerve in my neck. My Mom wasn't for the idea. I am thankful today for her decision. I have heard more cons then good. I suppose it all depends on each person. Once the nerve is cut, you can't have it reversed. I would write down many questions and ask the Dr. why he feels this would benefit your child? Would this procedure guarantee positive results anymore then what has already been done. I would ask if the VNS has anything to do with speech delay. I know that the seizures and stroke may have had a huge impact with his speech too. Keep me informed. For some reason, I feel close to your situation. May I add you as a friend, so we can stay in touch?
peasntatersmom
by Member on Feb. 27, 2007 at 8:53 AM
Hi, Ppat!
I would love to keep in touch with you! Laughing I feel as you do that we have some things in common.  I hope that you are doing well today.  Talk again soon;
Leslie
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