We entered the hospital to start ACTH therapy. Oliver went through some testing to make sure his body can handle the ACTH and he was given his first injection Monday night. THen we were told to hold off because his red and white blood counts were low. The red blood counts being low (anemia) are likely from the Vigabatrin and nobody seemed too worried, but the white blood counts being low means that he may not be able to use ACTH unless the counts increase. So he's still at the hospital and we'll know if they want to do the ACTH soon, in a few weeks once the white blood counts increase (if they increase), or never if he has low white blood counts because of his genetic condition. Yes, he has a genetic condition. They found out why he's having seizures and it's not good. It has nothing to do with the meningitis he had at 3 weeks. it's something he was born with and will always have.
Oliver has CDG: http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=cdg
This means that he will have a variety of issues in life, mainly developmental delay or disability and he'll always have some type of seizure disorder plus other issues. We basically got the worst possible news because his genetic condition is so new and rare that there are no treatments for it. He will always be this way. The scientific explanation of his disorder is so complex that I can't understand it, but from what I do understand it's something in his genetic makeup and the cells in his whole body that cause him to be different from other people. So he may never walk or talk, or he could make great strides with years and years of therapy. We do know that he will never be “normal”. But if we can decrease the seizures, and help clear up his EEG for now, those will be 2 less strikes against him. Since his condition itself prevents normal development, and the seizures prevent normal development, and the abnormal brain patterns prevent normal development, the odds are stacked against him. We don’t have a lot of hope or expectations and we’ll just have to take it one day, one symptom at a time. Hopefully the drs will decide today about the ACTH and if we won’t continue with it, they’ll let us take our baby home so our family can all be together again.
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My prayers are with you guys. You both are amazing parents and will make sure that no matter what Oliver has a good life. I can only imagine what you guys are going thru but if anyone could handle this it would be the two of you. You both have amazing strength and great support from family and friends. Oliver is a beautiful boy and I believe God only gives you what you can handle.
ReplyDeleteBethany and Jason,
ReplyDeleteI am so sorry to hear the news about Oliver. Please know that Uncle Tim and I are praying for you all, especially Oliver. If there is anything we can do for you, please don't hesitate to ask. Wish we were closer to just give you a hug. Take care and stay strong.
Love, Nancy
As you know, I am very sorry to hear this news. I know it must hurt beyond belief to see this documentation and to wonder what it means for Oliver. I hope you get some answers soon about what to do next. You are in a great hospital and they are very thorough which I suppose you appreciate now. Know that you are surrounded by people who care very much even if we don't walk your exact path.
ReplyDeleteI cannot think of what to say at this time, except that my heart goes out to you. I understand it is a daily struggle, constant worrying, heartache.
ReplyDeleteYou are an amazing woman and you will get through this.
Dear Bethany, I'm so....sorry you and your family are going through this. It must be so difficult. Oliver is a beautiful baby. It is hard to understand the literature regarding this disorder even as a Nurse. No one knows the outcome of this for Oliver, so it's important that you take things as they come, one day at a time. You have a lot of people praying for all of you. I pray for you and your husband to have strength and patience. Love and cherish Oliver. I will pray for a miracle if that's what is needed. If there's anything I can do, please let me know. Sincerely, Diana
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