RE: 2 YEAR OLD SON I NEED HELP

Submitted by paul on Wed, 2005-07-13 - 12:54

Hi Shirley, you and BJ are in my thoughts and prayers. Four months ago my daughter Erin (who was four months old at the time) had surgery to remove a brain tumour and whilst they were in there they removed a part of her hippocampus to try to remove a focal point for her seizures. The rest of this email is what happened next for us and should be seen in that context. I am not a Doctor ... infact the closest thing I have to any kind of medical knowledge is being married to a nurse ... who tells me to be careful because I spend so much time researching this on the internet that I end up thinking that I know more than I actually do ... she has to remind me from time to time that I am not a Doctor. Back to Erin, unfortunately for her, the surgery didn't stop her seizures (the docs still maintain that things would be much worse now if they hadn't done the surgery ... who knows?) ... anyway her seizures got progressively worse and then about 3 weeks after her surgery her Dr told us that she had Infantile Spasm. She has not really responded much to any of the meds she's been on (please excuse the spellings) dilantin, phenobarbital, zonegran, trileptal ... the one that showed the most promise was vigabatrin which is not FDA approved but you can get a prescription filled in Canada and they will send it to you. A few weeks ago the Doctors decided to classify her as being intractable which apparently in Doctor speak means she was not responding to any of her meds so we decided to go down the ACTH route ... which I was really opposed to but now as we enter week 3 we are definitely seeing some improvement .... (week 1 was horrible including Erin having probably her worst seizure to date, thank goodness for diastat). Since Erin's surgery when the seizures started getting really bad her neurological development seemed to stop and then go backwards ... she just lay around not really doing much of anything, not reacting to sound or sight, there was just the very occasional glimpse of her being in there from time to time. In the last week or so she has started smiling, crying, rolling over and kinda interacting with her environment ... she is way behind where she 'should' be but at least there is something going on there. This has been a whirlwind 4 months and I know there is much of the path still to be travelled .... with 20/20 hind sight I may have done things differently for her, but I didn't. For what it's worth moving ahead, this is where my focus is:1. She went to a Chiropracter last week and seemed happier for it ... who knows?2. She has her first session of cranio sacral therapy next week3. Herb and viamin supplements are about to become a big part of her life insofar as they work with the 4. Ketogenic diet ... out of everything this just seems to make the most sense to me5. Continuing to pray and to expect a miracle (I have post its with "Expect a miracle" written on them all over the house)As all of the other folks who have responded to your email have said ... there are alternatives ... as to which ones you should take ... as my mom told me when this all began with Erin, "You're a parent, you'll do the best that you can and that's the best that you can do"God bless you and BJ and good luck.Paul

RE: 2 YEAR OLD SON I NEED HELP

Submitted by Alecia on Thu, 2005-07-14 - 17:35

Hi there Shirley. Your son sounds a lot like my 2'1/2 year old. He has had infantile spasms and myoclonics since birth and we are on the wiaitng list for VNS. He will be three in Dec. He right now is on Depakote, Clonopin, Phenobarb and felbatol and diastat for emergency which, knock on wood, we have not had to give to him for a long time now.. Our son will never be siezure free but he has gotten a lot better since he had first been diagnosed at 6 months old. My son does not walk or even crawl yet but all of his therapists are working him so very hard on reaching his many goals. It would be nice to keep in touch and help one another if you are up to it. Just drop me an e mail and we will get through everything together.........=)

Alecia

RE: 2 YEAR OLD SON I NEED HELP

Submitted by angel_lts on Thu, 2005-07-14 - 19:00

Shirley, it is also possible that he is low on magnesium, calcium, b complex, b vitamins, all can cause seizures if they get too low. Also check out omega three fatty acids, got red of many seizures, and auras.

Best of luck

Lisa

http://health.groups.yahoo.com/group/EpilepsyApproach/