We had another one

Hi Jeana, I am sorry to hear about what is going on with your daughter. I wanted to write you to let you know that I really relate to your fears about the seizures harming your child. My son turned 3 this week and has been suffering from tonic clonic seizures that just started happening suddenly 2 months ago (see blog). There are two things I wanted to let you know. First my son has had clusters of seizures, along with one lasting over 20 minutes. When this happened I was so upset, whenever he was not near me I was crying and freaking that his little brain would not be alright. We have now gone a few days seizure free and I already see my little guy in there sharp as a whip learning new things, and speaking new words. So try not to worry too much. Your daughter's brain is fairly well developed at her age, and it is going to take ALOT to harm her. I wanted to also let you know about something that is highly unlikely but worth checking out just in case.When my son had his latest cluster of seizures the On call neurologist asked me if we had started him on the 2 week trial of pyridoxine yet. I answered we had not and she let out an annoyed sigh and said we needed to start that immediately just in case. Pyridoxine is actually vitamin B6. I was then told about a condition that is very rare, a dependency and deficiency of vitamin b6 that only occurs in very few people. Apparently this vitamin helps form the coating around the neural pathways, and people that have this dependency on B6 need more than the average person for them to develop properly. Alot of doctors do not yet start patients on the trial because there is not enough collected data to prove the theory. In this neurologist/epileptologists 12 years of practice she has only seen 4 cases that have stopped having seizures immediately with the vitamin B6. We have started giving our son 100 mg a day (as well as his other meds of Lamictal and Keppra) and he has not yet (knock on wood) had a seizure since we started the B6. I know it sounds crazy. But from one mother to another, if it doesnt work for my son I would still want other parents to know about it in case it works for them. We are still really early in, so it might not be the thing yet but we are keeping our fingers crossed. Of course we still are using all our other meds, the B6 is just an addition to see if that is the problem. I hope you at least ask your doctor about this, or check out what you can find on the Internet. Sometimes it will occur in older children, as I did meet a parent with a child that started having seizures at 6 and stopped having seizures once he was put on pyridoxine. I hope that things settle down for your daughter. It is so difficult to be terrified for your baby, I really know what that feels like. Good luck to you and your family. Please let me know how she is doing. best wishes, Tresa (mama bear)

Hi Jeana, I have had a little bit of trouble with writing to you - so I hope that you don't receive multiple responses from me. Watching someone that you love have a seizure is indeed scary. It is still scary for us - even though our daughter has been having seizures most of her life. She is 8, too, and most of her seizures are grand mal. Her seizures may be hours, days, or most often weeks apart. Aside from the seizures she is a normal, healthy little girl. After reading your story I wanted to share with you a little that I have learned about my childs seizures - hopefully some of this will help you. When our daughter has a seizure, her lips, fingers become blue or even purple. When this happens her body is conserving energy and using blood flow to support her major organs - heart, lungs, etc. We know it is ending when she takes a really deep breath. Her body begins to relax, and sometimes she appears to be struggling to breath. I think that this is the way her body oxygenates itself again. The color comes back into her skin, lips, and finger tips. People will tell you that a person can't hear anything during a seizure. We do not believe this at all - we talk to our daughter all the time. We let her know we are with her and that she is okay we tell her to fight the seizure and to take that deep breath! I can tell she tries to respond to us. And, I believe it helps. While people do die from seizures - it is very RARE that the seizure itself is the cause. Have faith in the strength and resilience of your daughter. Even if your daughter doesn't have another seizure it might be helpful to look into information to educate her and your other children- the epilepsy foundation has some great books and videos that are geared to children of all ages. I'm not an expert but I am happy to share my experiences and thoughts. I can appreciate your fears and apprehension. I will keep you in my thoughts and prayers. Take care. Kim