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Post by ScottC on May 24, 2006 10:16:31 GMT -5
As some of you know, my son has a severe epilepsy problem. This spring has shown a marked increase in his seizure activity. His particular type of epilepsy means he has a limited amount of meds available for him to try. He has failed them all. Some have done a better job than others, but those are failing too. His only option is to retry the Ketogenic Diet. He tried it when he was 3 y.o., but only lasted a few months after he deveolped kidney issues. This is our last option short of keeping him on 3 meds twice daily and accept the level he is at. We are willing to try it again, and his medical team in Chicago will be doing some things different, as well as close monitoring to prevent side effects. The first step is to slowly bring him off one of his meds before we go to Chicago where my son will be hospitalized for a week to intiate the diet. We received our med wean schedule today, and should start the diet sometime in mid-July. Please send some prayers out for my son. It is going to be a rough six weeks as more myoclonic seizures and even more grand mals will be occuring. My special prayer will be for the diet to work and help my son finally have some seizure control. Thank You. More infor on the diet: www.epilepsyfoundation.org/answerplace/Medical/treatment/diet/ |
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Post by admin on May 24, 2006 10:26:05 GMT -5
We have continued to keep Scotty in our prayers. We hope all this works for him buddy.
Let us know if there is anything we can do for you.
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Post by michihunter on May 24, 2006 10:27:05 GMT -5
Lil Scott has been in my families prayers since we met Scott. And will continue to be. If you need anything, you got my number!!  |
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Post by 4pointer on May 24, 2006 15:33:52 GMT -5
PRAYERS ON THE WAY FER LiL SCOTT AND THE FAMILY GOD BLESS
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Post by jerseyhunter on May 24, 2006 18:08:39 GMT -5
prayers on the way for scotty and family. god bless  |
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Post by bowslap on May 24, 2006 18:55:35 GMT -5
No need to ask, Scott.....you'll always have the prayers of the Bowslap clan....keep the faith, sometimes it's all you have....makes me appreciate my children's health that much more....Bowslap..
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Post by kg5388 on May 26, 2006 16:29:27 GMT -5
Scott
This is ladybug.
Our prayers are with you my friend.
I am sorry to hear about lil Scott. If there is
anything we can do let us know.
Kevin & Michelle
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Post by ScottC on May 27, 2006 7:45:30 GMT -5
Thank you for your prayers. While we know we need to try the diet, my wife especially has a lot of concerns. I am at peace with the decision, even though I know the side effects. After doing some reading in our keto book I asked Scott's teachers some pointed questions. The answer I received only solidified my resolve to try the diet again: Scott is slowly regressing in school due to his condition.  |
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Post by ScottC on Jul 1, 2006 9:19:23 GMT -5
UPDATE:
Here is the week we have been having. The State of Michigan denied Scott to be able to start the diet in Chicago citing that DeVos Children's Hospital could initiate the diet...even though it is a new procedure to their pediatric neurology department. Just as we are recovering from that shock, the State of Michigan denied Scott out-of state care citing their probably is an epileptologist in the state who could handle my son's case. Needless to say we were shocked since we have an appointment set for next Wednesday.
I spoke to the MD who denied my son and told him my side. Well, he heard that Scott is almost off of one of his seizure meds and is allowing Scott at least one more visit to Children's Memorial in Chicago since Scott is in a "vulnerable state." The denial for future visits can be reviewed if we feel my son is not getting comparable care.
So, the MDs and dietician at DeVos will discuss Scott's diet next week and then we will get a date set for the initiation. Scott will spend 4 days in the hospital. We are just unsure of which week in July he will start. Frustrating to say the least.
Needless to say, I have been praying a lot lately...
Thank you for your continued prayers.
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Post by michihunter on Jul 1, 2006 9:28:19 GMT -5
Scott- Don't let the first denial get to you. That's almost standard procedure here in MI. You will get approved eventually. They just try to see if someone is willing to go through the appeals process as a sign that the procedures are indeed necessary. I know it sounds stupid but in a way it almost makes sense. Keep your chin up and know that prayeres are continued. If you ever need anything, you have my number!! Tell Lil Scott Uncle Ted is pulling for him bigtime!! |
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Post by ScottC on Jul 1, 2006 9:35:45 GMT -5
Thanks Ted. The confusing part was that the MD who denied Scott is filling in for the regular MD, who is on extended medical leave. That MD gave out-of-state care to Scott last year saying there was nobody in the state with that epileptologist's credentials. Frustrating, but things will work out.
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Post by hoosieroutdoorsman on Jul 1, 2006 11:17:46 GMT -5
Prayers will continue Scott,,we found out a month ago that my wifes youngest son is epileptic,,he hasn`t had the worst case seizures but we too are trying to find meds that will keep him stable. Keep us posted on his progress as best you can buddy.
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Post by admin on Jul 1, 2006 12:16:02 GMT -5
Prayers will definately continue from here Scott.
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Post by teambateau on Jul 1, 2006 21:08:33 GMT -5
I'm always wondering how he is doing! We will keep him in mind and hope for the best.
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Post by jerseyhunter on Jul 2, 2006 7:51:34 GMT -5
PRAYERS WILL NEVER STOPPED COMING YOUR WAY LIL BUDDY FROM JERSEY
GOD BLESS.
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Post by elk4me on Jul 2, 2006 8:05:55 GMT -5
Prayers from high atop the mtns of Montana, that is too bad that the Dr.s wont let ya go to Childrens in Chicago it is a awsome hospitial one of the best for pediactrics in the country. Me and the family will be praying for you and if there is anything we can do PLEASE dont hesitate to ask!
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Post by mariandeer on Jul 5, 2006 20:27:40 GMT -5
Scott - Sorry to hear about your son's illiness. Will keep him in my prayers and pray for you and yours to have inner strength. I hope everything will work out for him. God Bless!
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Post by mariandeer on Aug 7, 2006 10:07:13 GMT -5
Just checking in to see how the diet is working out for your son ScottC...hope he is much better. God Bless!
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Post by ScottC on Aug 7, 2006 13:50:43 GMT -5
Just checking in to see how the diet is working out for your son ScottC...hope he is much better. God Bless! Thanks for thinking of my son. I am very guarded regarding any sort of progress with the diet. His daily seizure activity has abated some, and we have not had any more grand mals in a couple of weeks, so there is some good news. The bad news is we have been down this road before, both with the diet and various other meds. We will continue to pray and watch him. We are trying to get a lot of various meal plans so he doesn't have to eat too much butter plain. Since he won't even try to drink cream with his meal he has to make up the fat somehow, and that usually means having extra butter with his meal. Example: lunch today was a hot dog and fruit. He had x-amount of hot dog which every bite of hot dog he had x-amount of butter too. With his fruit he had x-amount of oil on the spoon with x-amount of his fruit of choice. |
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Post by jerseyhunter on Sept 22, 2006 20:59:35 GMT -5
PRAYERS ALWAYS COMING YOUR WAY.
GOD BLESS
RICK.
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Post by ScottC on Sept 25, 2006 4:38:37 GMT -5
Sorry I have been gone so long and have not given an update. I guess I didn't want to keep posting bad news.
For a brief time, we had some good seizure control with the diet at its lowest ratio and full strength of one of his meds. Unfortunately, he can not stay on that med because of potential kidney issues (which he has had in the past on the diet). When we got to the third week of the med wean, the grand mals started again. At the same time he became sick which only compounded the problem. During this time his other seizure activity (the ones he has daily) became so bad that they were the worse we had seen in years. Combined with his photosensitivity issue, some were the worse myoclonic seizure activity we have ever seen.
He is back in school and that is a bright spot for him. Scott loves school. Sadly though, his photosensitivity issues are getting worse and his daily seizure activity is getting worse at school too. His health care aide, and teachers, therapists, etc. are great with him and try to keep him going. I am sure they are tired at the end of the day. I know this because my wife and I are exhausted. Thankfully, he has had only one grand mal in school, so far..and it was at the end of the day.
Yesterday was awful. Scott started out poorly from when he got up and someone had to be constantly with him. It can be physically exhausting and certainly is mentally exhausting.
I keep thinking of the Lodge and miss everyone, but I haven't had too many thoughts of hunting and kind of doubt I will get a chance to hunt this year unless Scott gets a little better. I haven't even shot the bow in a while. Guess I should get ready, just in case.
Scott is still on the diet, for how much longer we are not sure. He recently had his ratio increased to try and give relief but it has not been working. We tried to take him off when he got bad, but his medical team in Chicago wanted us to give it more of a chance to work. It has been two months now and it may be time to start thinking of other options. There aren't many options open to my little guy, but if he is not going to feel great he should at least be able to eat what makes him happy.
I ask for you to keep him in your prayers.
Thank you.
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Post by admin on Sept 25, 2006 7:32:07 GMT -5
Sorry to hear things haven't been going well Scott, we will continue to keep you and your family in our thoughts and prayers.
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Post by bowslap on Sept 25, 2006 20:30:47 GMT -5
Scott....
Wish I could say/do something to abate your family's troubles......just continue to show your son LOVE. "bout all youcan do. Tell that boy of yours we at the Lodge are all pulling for him and your entire family........'slap....
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Post by michihunter on Sept 26, 2006 12:41:37 GMT -5
Scott- Appreciate the updat3e. Kind of bittersweet knowing that things are still very serious in nature. As you know Lil Scott and your entire family will be continued to have prayers sent to God above. If you ever need an ear to listen, you have my number. Call me anytime!! |
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Post by jerseyhunter on Sept 28, 2006 18:34:39 GMT -5
PRAYERS STILL COMING YOUR WAY.
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Post by mariandeer on Sept 28, 2006 21:16:45 GMT -5
Scott - thanks for the update...will continue to keep you and family in my prayers....I know it is hard on everyone. Hang in there! You have our support here! God Bless! Marian
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Post by mariandeer on Nov 30, 2006 23:43:05 GMT -5
ScottC - How is Lil Scott doing? Still keeping you all in my prayers..Marian
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Post by jerseyhunter on Dec 12, 2006 19:45:09 GMT -5
Prayers stll coming your way.
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Post by mariandeer on Feb 12, 2007 17:52:05 GMT -5
ScottC....just checking on you and your son....how is he doing? Still in my prayers....mariandeer
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Post by jerseyhunter on Feb 15, 2007 19:09:29 GMT -5
Prayers still coming your way bro.
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