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Miraclebit

Miraclebit

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Hello Everyone,
I am a mom of a 4.5 year old son named Matthew. He had a TBI when he was a month old. In result to this he has many diagnosis. He has epilepsy refractory to medical treatment and Vagus Nerve Stimulator therapy, with very frequent complex partial seizures. He is currently on 4 anti-seizure meds and we also have Diastat on hand. He has anywhere from 15 to 90 seizures a day. He is only functioning at about an 8 month old to a 1 year old level. He also has Cortical Vision Impairment, Cerebral Palsy, Mental Retardation, Severe Speech Delay, Sensory Issues and Global Developmental Delay. We tried to see if he could have surgery to remove scar tissue but they cannot pin point the areas that are causing the seizures. We have tried the Low glycemic Diet, that did not help. We may be trying the Ketogentic diet. That is our last hope in helping Matthew.
He has been on Sudafed for being sick and the last two times he was sick his seizures dropped in number.
Is there anyone else who has had this happen?
Thanks for listening!
Mom, AKA
Chamisa
 
Welcome Chamisa -
What a special little guy you have. That is a sweet picture you have of him.
Your question is interesting to me. I watch other neuro sites, one especially for autistic spectrum disorders. There is indication that when fever hits these children the behaviors become more normalized. My son has very high functioning asperger syndrome, and I always knew when he was coming down with something. Even his teachers could tell. His behavior became much more "normal". So I find it rather interesting that Matthew's seizures would drop during that time as well.

I am not sure what a TBI is.
 
Hello Robin!

TBI is Traumatic Brain Injury.
Matthew's seizures have decreased when he gets sick. In July he was sick and his Neurologist said that his body might have gone into Ketosis (SP?) because he wasn't eating and drinking like he normally would. That would be a reason that his seizures decreased. We had him on Sudafed at that time. Now he is just getting over being sick for the past two weeks and the same thing happened but this time he was eating and drinking. We took him off of the Sudafed on Monday and his seizured increased again.
I contacted the makers of Sudafed and they said they have never done a study with epilepsy patients while taking Sudafed. I really feel that is has helped him but because of the way the body metabolizes it it is not safe for long term use.
I am just so lost and I don't know what to do. We have an appointment with his Neurologist tomorrow and I am going to bring this up again.
I also wanted to say that because of his brain injury over 2/3 of the left side of his brain is gone. So sad that brain tissue doen't grow back.
I appreciate you input and concern. He is a beautiful sweet little boy.
He is on a lot of anti-seizure medications.
Chamisa
 
First time doing this

By the way...this is the first time I have ever done a forum. So, if I don't get things right you will know why!
Thanks
 
Welcome, so glad you've joined. I was diagnosed with epilepsy recently at age 28. The etiology of my diagnosis is unknown. I am so new to the world of epilepsy so I will problaby learn more from you than I have advice to offer. Thank you for sharing your son's story with us.
 
Welcome to you as well!

Thanks for being here too! What type of seizures do you have? My son has been having them since his injury.
His cause him to turn to the left eyes and body. His body gets stiff and he will tremble. His seizures last anywhere from 5 sec. to 3 minutes. If he is in a standing position then he will fall and or slam to the floor or whatever is in his way. There is no way of knowing when they happen, they are unpredictable!
It is so nice to talk to others who are going through this as well. Not that it is a good thing to happen but it's nice to notbe alone!
Chamisa
 
Hello everyone. I have never done this before so look-out! My issues are related to my Son.This is my first time on the forum. My son has had epilepsy since he was 12 years old. He is now 27. The sezieurs have been controlled for the most part until now. He has been on Depicote for about 14 years until he out grew it. (6ft. 4in. 295lbs.) He was recently put on Limictal. This did not work at all. He was having so many seizures that he could not work. His doctor then changed it to Kepra. This worked a little better controlling his seizures, but he had a lot of emotional side effects. Crying, panic attacks, anxioity attacks, and depression. The doctor has put him back on Depicote and he is having mutiple seizures to the point that he can hardly function at all. His worst enemy is stress and sleep dreprivation. My wife, myself and my son are at a loss. We don't feel that the Dr. knows what direction to go with this. This has ripped our hearts out and don't know what to do. Any suggestions? What is VNS?
 
Chamisa,

My heart is with you. My daughter was born with a variety of developmental challenges and has since developed epilepsy. To top it off I have epilepsy and mine is a consequence of a massive TBI. The thought that comes to mind is to have the doctor prescribe a helmet for your son. It will dramatically reduce the number of bruises and lacerations to the head caused by the falls which come with the seizures. It will also reduce the amount of contusions that occur when he hits his head.

Best wishes from a fellow frustrated mother,
Karen
 
Hello Mark's Son

I see that you live in Atlanta. We live in Nashville. There are some wonderful Neurologists at Vanderbilt. I know your son is an adult but Vanderbilt is worth a try!
My son is seen at Vanderbilt Children's Hospital.
There is a picture of him on the homepage in a slideshow. He is with his dad and he has gauze on his head for one of his many EEG studies.

Get online and search for Vanderbilt Children's Hospital and for Vanderbilt Medical Center



He has been on several drug studies through Vanderbilt. He is on multiple medications and they are still trying different doses and combinations.
He currently takes;
Keppra 2000mg., Lamictal 200mg, Phenobarbital (2) 97.2mg pills, and Diazapam 20mg and 10mg additional dose for cluster seizures, we also have Diastat too! WHEW!!!
 
Hello Karen

They did do a protective helmet but Matthew has done more damage in trying to rip it off that for him to wear it. He has serious sensory issues! I wish we could wear it but we just try to be with him or have him in his wheelchair or therapy chair. It is a one day at a time type thing here!
 
Vns

Mark'sSon said:
Hello everyone. I have never done this before so look-out! My issues are related to my Son.This is my first time on the forum. My son has had epilepsy since he was 12 years old. He is now 27. The sezieurs have been controlled for the most part until now. He has been on Depicote for about 14 years until he out grew it. (6ft. 4in. 295lbs.) He was recently put on Limictal. This did not work at all. He was having so many seizures that he could not work. His doctor then changed it to Kepra. This worked a little better controlling his seizures, but he had a lot of emotional side effects. Crying, panic attacks, anxioity attacks, and depression. The doctor has put him back on Depicote and he is having mutiple seizures to the point that he can hardly function at all. His worst enemy is stress and sleep dreprivation. My wife, myself and my son are at a loss. We don't feel that the Dr. knows what direction to go with this. This has ripped our hearts out and don't know what to do. Any suggestions? What is VNS?
Click to expand...

VNS is Vagus Nerve Stimulator or Vagal Nerve Stimulator (Vegas and Vegal are two different names for the 10th cranial nerve). It is well worth looking into but it can be hard to find epileptologists who are comfortable with it. Go to www .vnstherapy .com/epilepsy/patient/index.asp[/url] and enter your zip in the box on the bottom left of the page. There is no guarantee that it will work but I am glad that I had the surgery done and I am happy that we have done the same for my daughter.

Karen
 
Hey,
Matthew has the VNS (Vagus Nerve Stimulator) We have the magnet that we use but it is not working for him. They have changed the frequence on it 6 times so far. He had it implanted in March of this year. Dr. Matthew Pearson implanted it. He is at Vanderbilt Children's Hospital. He has been awesome. He has about a 2.5 inch small (can't even see it) incision on his neck and then about a 3.5 inch one on his chest on the both are on the left side. The VNS is from Cyberonics out of TX.
 
Miraclebit said:
Hey,
Matthew has the VNS (Vagus Nerve Stimulator) We have the magnet that we use but it is not working for him. They have changed the frequence on it 6 times so far. He had it implanted in March of this year. Dr. Matthew Pearson implanted it. He is at Vanderbilt Children's Hospital. He has been awesome. He has about a 2.5 inch small (can't even see it) incision on his neck and then about a 3.5 inch one on his chest on the both are on the left side. The VNS is from Cyberonics out of TX.
Click to expand...

Be patient with the VNS. I have had tremendous success with mine but the doctor adjusts it every here and again. For example, I have auras more frequently during the winter season because I get 'colds' all the time. In order to address that the doctor changed the settings to fire every 1.8 min instead of every 4 min. When the cold season is over he will set it back to every 4 min. It took about a year to find good settings on mine and the doctor and reps from Cyberonics have said that was actually rather fast.

Karen
 
Thanks!
Matthew's is currently set at every 5 min. it goes off for 30 sec. We have tried several settings.
best to you,
Chamisa
 
The epileptologists that I have spoken to say that 4 min intervals appear to be more effective. Call your doc and ask his/her opinion.
 
Hi Chamisa, welcome to the forum. :hello:

Miraclebit said:
He had a TBI when he was a month old.
Click to expand...

Stephen Larson's book, The Healing Power of Neurofeedback: The Revolutionary LENS Technique for Restoring Optimal Brain Function, mentions some case studies where TBI patients almost completely regained normal brain function using OchsLabs LENS system. It's a relatively new treatment option, but worth investigating IMO.

Miraclebit said:
That is our last hope in helping Matthew.
Click to expand...

Classical EEG Neurofeedback may help Matthew too. He is old enough to try it IMO.

Miraclebit said:
He has been on Sudafed for being sick and the last two times he was sick his seizures dropped in number. Is there anyone else who has had this happen?
Click to expand...

Most people report an increase in seizure activity when their immune system is down (ie. when they are sick or running fever).

You might ask your pharmacist if the Sudafed could be interacting with any of Matthew's prescriptions.
 
Hey,
I have not heard of any of these treatments. I did briefly look at the links you suggested. Do you by chance have anything in a format that I can print off about the EEG Neurofeedback, so I can question Matthew's Neurologist? We have an appointment tomorrow morning at 9am.
Thanks,
Chamisa
 
peace_on_earth.gif


Hmmm .... VNS now where Have I heard about that?
 
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