My 13-mo. old son w/ infantile spasms

Re: Re: RE: My 13-mo. old son w/ infantile spasms

Submitted by gretchen1 on Mon, 2005-11-14 - 21:17

Hello Worried Mom - And Welcome - Regarding the cost of medications? There are web sites that will provide your medication for free, usually for periods of 90 days. Actually quite a few. One I used once was "NeedyMeds". But there are quite a few more. I'm trying to think how you would write that into Google, the search engine, to find all these sites. But anyway, NeedyMeds had a long list of medications and their makers. You write to them. They send you an application you fill out then take it to your doctor who completes it, and sends it in along with a script. If approved and if your medication is on the list your doctor will receive a free 90 day supply of your child's meds and give them to you. You can continue doing this every 90 days but every maker is a little different with their requirements. In this process I did experience not getting the applications after I'd requested them. I noticed some companies required you to be at a certain financial level, others did not. Most meds for epilepsy were on there. Another thought is that you can buy medications from over seas pharmacies. I've done this too. It is legal says the FDA and DEA. BUT there are risks of loosing your money. Customs can seize your order even if it's not a controlled substance. I had Dilantin and anti cholesterol drug seized. If Customs seizes your meds? You forfeit your money. There is an appeal process but no one ever wins is what I hear. The other thing about ordering meds from a foreign country I found is that often it's higher. Drugs from India I've found are a lot lower, they tend to be of a high quality but often are called by a different name. When I have ordered meds from foreign countries I always insist I get USA made meds as for instance Valium from Mexico is like drinking water. But I have found drugs from India are appropriately potent. These pharmacies pop up and down in and out of business too though. If you're interested in looking into this option go to www.drugbuyers.com which is a free site where people post their recent experiences with different pharmacies world wide. It's a very difficult site I think to traverse but can be done plus it's free. All other drug buying sites I know of you have to join and there is a cost. The only other option I can think of for you is to tell your doctor these meds are too expensive, yet needed, and can they keep you in samples. I've also done this. The doctors that have done this for me though have said they can only do it for a limited time. Once I did contact the sales person for a certain drug that was $600/month and asked them if they could keep me in samples and they promised they would for 6 months. That did give me some relief. Keep in mind samples are provided to doctors to give patients in the hope that this drug will help their patients, the doctor will therefore prescribe it for other patients and the pharmacy company will profit by providing free samples. Doctors do not pay for these samples. It's a real travesty I think that so many of the drugs used for epilepsy are so high. I'm very AED intolerant but it did look like at one time I was going to be able to take Keppra and have relief from myoclonic jerks but I had no medication ins. at that time and I couldn't afford the monthly cost. So a medication that was helping me? I had to quit taking it. There's something to me very morally wrong with this picture. Regarding Tuberous Sclerosis? First, let me say I really like this site and it's the epilepsy site I prefer. But I was a member of EFA (Epilepsy Foundation of Amrica) for many years. I have epilepsy as many of my family does. IOW inherited. On EFA's site on the Parents to Parents forum there is a very long thread about inherited conditions and the woman who started it, named Arwen, has a son in his late teens with tuberous sclerosis. Some other children also have it. Arwen is a wealth of information about this disorder. Other parents are also. I would heavily suggest you go to that site and find that thread. I can't remember how it's worded now but it should say something about inherited diseases on the Parent to Parent Forum. In the meantime I'll try to contact Arwen and draw her attention to your post here. EFA's web site is www.EFA.org. If you do get on that site and that thread you might state that "2dogs" recommended it. That was my handle there. As far as the keto diet goes? I've read many parents who have tried this and I'll tell you what I've read, which is, of course, only anecdotal information. My opinion is those parents whose children go into the hospital and start the diet closely monitored and prepared by a dietician have the most success. Those who start it at home, cooking it themselves, don't seem to have as much success. I think some children respond, some don't. I personally don't know how any child could stand to eat it but somehow, these children do. What I am thinking about is one child whose mother I knew very well. Her daughter had many seizures a day and her behaviors were tearing her family and their marriage apart. Nothing worked for her daughter who was also my pen pal. She would write me such sorrowful letters as a 7 year old it tore my heart out. They admitted her for several weeks. Started the keto diet and I swear to you - she became sz free. I've lost touch with them since I lost internet for awhile so I don't know how she is now. Good luck. I have read enough about infantile spasms and tuberous sclerosis to know your life must be eaten up by this devastating condition. I have epilepsy, probably life long, but wasn't diagnosed until I was 50. My son was diagnosed when he was an infant, 7 weeks, and one of my daughters was diagnosed at the age of 26 last spring. My father and two cousins plus one of my g-daughters also have it. However I would rather seize and be bugged by all that is involved in having this myself than to ever see any of my children or g-children have even one jerk. Good luck to you and your child. Gretchen