infantile spasms Gage's story

This is the first time I've posted on any seizure site so forgive me if I ramble. My son Gage will be 3 in March. He was about six weeks premature but no major complications at birth. Some concern about microcephaly but had all the tests and they showed nothing, just a small head. He was behind developmentally. He could sit up and hold himself up but did not use his arms to push himself up and never tried to crawl. Therapists said he was low tone in the upper body. We started noticing seizures at about 9 months and took him to a neurologist, who I wont name because I'm still angry at him for misdiagnosing my son and even angrier at myself for allowing him to treat my son. Allow me to explain my wife had been lookin up the type of seizures my son was having on the net, and was convinced it was West syndrome. She suggested this to the dr. on our first visit and he completely shrugged her off and said there was no way that it was I.S. or west syn. and started Gage on the endless cycle of seizure meds. I believe Tegretol was the first but it has been so long and there have been so many I dont remember. So Gage continued to seize uncontrollably and this dr. continued to change and adjust meds but not run any tests. We finally get fed up with this neuro. and took Gage to see Dr. Kurt Hecox at U.I.C. pediatric epilepsy center in Chicago. Before he even had Gage on the eeg he told us he thought it was Infantile Spasms. Sure enough Hypsarrythmia on the eeg and we had a diagnosis,6 months after the seizures started. I hate myself and that first dr. cause i will never stop thinking if he had gotten the diagnosis right or if I would have taken Gage somewhere else sooner things might be different today. So Gage was started on ACTH right away by dr. Hecox and responded incredibly well. That was in June of 2003 he was completely seizure free until early september of 03. They came back with a vengeance too many a day to try to count and he began having drop attacks not to mention he was sliding developmentally. Meds, meds and more meds and constantly having to decide between seizure control and having a child who is so doped up on all the meds that he sleeps 20 hours a day or less seizure control and a boy who smiles from time to time and even laughs and these are the things that keep you from going crazy. So in Feb. of 04 we chose the latter and had Gage taken off the Phenobarb(he was still on Valpo,kepra and trileptal) and had a VNS implanted. Wish I could say it made the difference I wanted but you have to take any improvements and consider them a blessing. The VNS did stop his drop attacks and it does break up I would say about 1 in 5 of his seizure clusters. If your child has one of these implants the magnet does give you some sense of control you dont feel completely helpless when they have a seizure. You've got the magnet and sometimes it works,unfortunately for my son most of the time it doesnt but even still things could be worse if he didnt have it. Sorry I'm still rambling but Ive got over 2years worth of pain and anger bottled up and this is the only step I've taken to deal with it. Anyway fast foward to june of 04. We find out Gage is allergic to Dilantin and Lamectil so no help from these meds. After weighing the issues with Felbatol we put him on it in conjunction with Klonopin and Valproic acid. We thought this was the 1. seizure free for a couple of months. I should mention during all of this time from 9 months on he has been getting physical and developmental therapy, without much improvement 1 step forward 2 steps back every time we see the tiniest of gains in therapy the seizures get worse and he regresses more. So the Felbatol was great for a while but eventually its effectiveness stopped just like everything else. The emotional strain all this has put on my family and my marriage, well I cant even think of a word that describes it. My wife has been in and out of the hospital for depression and eating disorder and I have lost any faith I once had in God. Yet somehow we manage to survive. Gage has wonderful grandparents that help us wherever and whenever and Gage himself even though he cant communicate with us has subtle ways of letting us know that he loves us as much as we love him any smile that he manages to give us and thats not many means more to me anything in this world I love him so much and I hate the fact that day in and day out I have to watch him struggle. So heres where we are as of the last week. Still seizing 5-15 times a day that we see.dr. says its going on even if we dont see a physical manifestation. His seizures last from 1-5 minutes clusters in and out tenses up his arms and legs eyes divert to one side sometimes he cries while having them other times and this is the cruelest he smiles and laughs uncontrollably(I hate those) I wonder if anyones child has similar ones? Developmentally he no longer sits up ,cant crawl,cant walk, talk,does not track or follow with his eyes barely looks at us(but when he does you can tell and it feels great) rarely smiles and can only eat pureed foods. Nutritionally hes been struggling over the past year and cant seem to take in enough calories to keep up. Which brings me to our last trip to the hospital a few days ago. Blindsided,I never saw it coming. This is where i need help anyone whose child is on a feeding tube I would like to hear your story so I can find out what I have to prepare for? They did a swallow study on Gage and found out that he is aspirating without the proper gag reflex so more or less what would make me or you choke if it went down the wrong pipe doesnt faze him. According to his dr.'s protecting the airway in children with his condition is just as important as seizure control.(His condition started as I.S. now his dr. calls it Intractable seizure disorder with global developmental delays and says that Gage is in a transition period where the seizures will eventually change and theres a good chance he'll end up with Lennox Gestault) So here is where the screws that have been holding us together start to let go. Our dr.'s and a social worker take me and mywife to a room and sit us down for the talk that you try to prepare yourself for but when it happens your still not ready. Gage is going to have a Gtube put in and will probably have it for the rest of his life. One of the few things that I know beyond a shadow of a doubt that my son enjoys is eating not to mention I love feeding him. now I have to take that away from him.I know that it is to protect him from lung infections and pnemonia and from what Im told things like that are what kills these children not the seizures. It still sucks thinking about all the good food he will miss out on. Then they proceeded to tell us that judging by his lack of improvement over the past year and the patterns that this disorder follows, that he will never stop having seizures, we can only hope to control them, he will never walk and probalbly will never talk. So what do you do? That was 3 days a broken heart and a million tears ago. We are picking up the pieces once again. The emotional see-saw continues,anyone watching their kid suffer with a disorder like this understands, and it is you guys I'm reaching out to. Anyones story sound like this? Anyone dealt or dealing with a G-tube? Can I help anyone?Thanks for reading I look forward to any replys. Kris