Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 , that is what they say Lucas will suffer from is respiratory distress. But, I worry what his next symptoms are gonna be, what do I look for? You don't think that I would miss the symptom because Lucas can't talk to tell me what hurts...or even if he is thursty or hungry I wonder if he even knows those things anymore. Maybe you can help being that you have some communication going on. Lucas has those silent seizures, where he just looks off into space or just stairs at something. Which I think is a blessing, I can't imagine what the parents with these kids go through. My heart goes out to all of them! Thanks for being there. Kim cccccclark@... wrote: hey KimColby has agenesis of the corpus callosum, it is the muscles that connect the right and left side if the brain. This is probably why he does not suffer seizures as so many do. He has been diagnosed with encephopathy, they say an overall slowing down of the brain, but next MRI years later did not show that. Colby suffers the most with respiratory problems. He does get acidodic quite easy with illness. We have not been in the hospital for 18 months! Although almost was admitted in April for aspirating with a cough and not being able to breathe. We give him the mito coctail, although since his g-tube is gone he does not get the b vitamins, which I never saw a noticible improvement anyway. I just hope you will have a miracle. Thanks for posting back.God bless you! mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also healthyPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 Hey! I haven't posted lately, but I read the posts daily. Hate I could'nt got to the conference. I would love the opportunity to get together with other parents. Are you in Memphis or did I dream that? My folks are in ... Unfortunately, we haven't even had an appt set up with Schoffner. He had a repeat lactate of 2.7(was 3.8). Had a lactate and pyruvate done and sent to Cleaveland. We are waiting for those. His CDG, Very long chain fatty acids were normal. His urine for org acids "did not suggest a specific disease" but one or two acids were elevated. I've not gotten to talk to the doc again, so I don't know what this means. The more I read, the more I think it probably is mito. I am trying to be patient, I want toknow, but I don't want to know! Write soon, Kim Re: Lucas's condition KimI was just wondring what the latest had been and was going to write and ask you...Randy and Sandy and I were wondering if you had learned anything new too...So, when did you see shoffner? Did he have an opinion on PMB (a leukodystrophy)? Well I think the wait is hard the first month and then you kinda get used to it...when Marla called wednesday to tell us to expect the report in less than two weeks I felt sick for over two hours...I would be devestated if he didn't have any idea of a dx but I will most likely be devestated of the dx...meanwhile, we watch our kids slip away...so hard...I got home tonight and ju seems worse...he is soooo tired and now I wonder if it the heat or just the progression of the disease...I think one thing we ALLLL realized at the conference is the docs really dont' know very much about it...there are no absolutes, no norms, no always, no nevers..they just don't know...which makes everyones jobs harder but can also help us all live in the hope that our child might make the recovery that is not expected, etc...hang in there...the waiting is hard and it seems to take forever..its hard not to think t he worse when you are faced with the realitiy of how these problems are affecteing our children...I think we just have to be thankful for each day we have..someone with a child with spina bifida, told me that she does this with her daughter and I have started doing it with ...if your child is non-verbal you can just cheer it to him...we say...you are going to fulfill your destiny on this earth! That is true whether we agree with the number of days they have or not...thier lives still counted for something...God still had a plan for them and for us all!Keep in touch with me...have enjoyed chatting on the phone with you...debPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2002 Report Share Posted June 10, 2002 Hey! I haven't posted lately, but I read the posts daily. Hate I could'nt got to the conference. I would love the opportunity to get together with other parents. Are you in Memphis or did I dream that? My folks are in ... Unfortunately, we haven't even had an appt set up with Schoffner. He had a repeat lactate of 2.7(was 3.8). Had a lactate and pyruvate done and sent to Cleaveland. We are waiting for those. His CDG, Very long chain fatty acids were normal. His urine for org acids "did not suggest a specific disease" but one or two acids were elevated. I've not gotten to talk to the doc again, so I don't know what this means. The more I read, the more I think it probably is mito. I am trying to be patient, I want toknow, but I don't want to know! Write soon, Kim Re: Lucas's condition KimI was just wondring what the latest had been and was going to write and ask you...Randy and Sandy and I were wondering if you had learned anything new too...So, when did you see shoffner? Did he have an opinion on PMB (a leukodystrophy)? Well I think the wait is hard the first month and then you kinda get used to it...when Marla called wednesday to tell us to expect the report in less than two weeks I felt sick for over two hours...I would be devestated if he didn't have any idea of a dx but I will most likely be devestated of the dx...meanwhile, we watch our kids slip away...so hard...I got home tonight and ju seems worse...he is soooo tired and now I wonder if it the heat or just the progression of the disease...I think one thing we ALLLL realized at the conference is the docs really dont' know very much about it...there are no absolutes, no norms, no always, no nevers..they just don't know...which makes everyones jobs harder but can also help us all live in the hope that our child might make the recovery that is not expected, etc...hang in there...the waiting is hard and it seems to take forever..its hard not to think t he worse when you are faced with the realitiy of how these problems are affecteing our children...I think we just have to be thankful for each day we have..someone with a child with spina bifida, told me that she does this with her daughter and I have started doing it with ...if your child is non-verbal you can just cheer it to him...we say...you are going to fulfill your destiny on this earth! That is true whether we agree with the number of days they have or not...thier lives still counted for something...God still had a plan for them and for us all!Keep in touch with me...have enjoyed chatting on the phone with you...debPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 All I can say is that I'm sorry the news was not as you had expected. My son looked far better than he actually was - he had cardiomyopathy, low muscle tone, developmental dalays - all things for him that didn't stand out as he was only a baby. Miracles do happen though. You are in my prayers. Donna (mum to Lochie 7/20/00-7/20/01) Lucas's condition Hello to all you wonderful people I have a update on my boy! We went to see Dr. Shoffner and got news that my son is quiet a bit more severe than I ever realized. I wonder if there is somebody out there that has child with the similar symptoms. I'm sorry to ask such hard questions, I know that all of our children with mito are angels...but is there someone that has a child that's as close to being one as mine is....? The news that I got from Dr. Shoffner was very hard to hear. I thought that Lucas was doing ok with everything but now I have found out that Lucas is not so good. His MRI's are showing that half of the right side of his brain is effected and almost half of the left side is affected too. There is fluid collecting on both sides and his brain is shrinking. Lucas apperance is so good...so its hard to believe such bad things are going on inside. He is 3 years old (April 15th) and is a big boy..he weighs 44 pounds and is 40 inches tall. He is getting hard to carry to say the least. He is blind, and has a g-tube, not talking, walking, crawling,sitting, he is totally dependant. All this has happend over 1 year. I am having the hardest time now. It seemed as if I didnt know the severity of his condition things was a little better. Now..I am so saddend...my heart hurts and I know that all of your do to with your children...Sorry to ramble on...its gonna be a long three months. We had a muscle biopsy, skin biopsy, and spinal tap..blood work. Dr. Shoffner informed me that he wouldnt be surprized if Lucas doesnt have another major decline in his condition or if not the worst in 6 months. I'm not doing so well with this news. Any ideas....I feel so helpless to Lucas..and knowing what lies ahead for him. I thought all this time Lucas was getting a little better. I have even canceled Lucas's appoint once before with Dr. Shoffner because I thought he was better. And now..I am over whelmed in what's next and what should I do now, I am just crying out..I know I must sound nuts, which I am right now..I will stop rambling on and take a deep breath. Thanks to all of you wonderful people for answering my questions and giving me great advise. I am so thankful to all of you. God Bless all of you and your children who are suffering for this terrible mito stuff. Love from Pensacola, Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2002 Report Share Posted June 12, 2002 Kim Colby was born with so many symptyms we have always known from beginning. I know when all my kids don't feel good. Mothers Instinct, Drs. should learn to listen to it. Colby doesn't complain about too much pain, he has a high pain tolerence. I can always tell he is sick by his coloring, he gets a little grey and is always mottled looking. His eyes are a dead give away too. When he gets a cold he starts out with severe, and I mean severe, croup, then progresses to the horrible cough where he can't breathe. Our doctors have never said how they think he will go. They say any amount of organs could be involved, and they can't biopsy all of them. Some have hinted cardiomyaphy but I don't think anyone knows for sure. Genetics think puberty will be next crucial step. Best of luck. Talk to you later. See ya later bye , mom to Colby, 12, COX IV< LCHAD<ADHD<ACC sons Chad 14, healthy, Caleb, 9, healthy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2002 Report Share Posted June 12, 2002 Kim Colby was born with so many symptyms we have always known from beginning. I know when all my kids don't feel good. Mothers Instinct, Drs. should learn to listen to it. Colby doesn't complain about too much pain, he has a high pain tolerence. I can always tell he is sick by his coloring, he gets a little grey and is always mottled looking. His eyes are a dead give away too. When he gets a cold he starts out with severe, and I mean severe, croup, then progresses to the horrible cough where he can't breathe. Our doctors have never said how they think he will go. They say any amount of organs could be involved, and they can't biopsy all of them. Some have hinted cardiomyaphy but I don't think anyone knows for sure. Genetics think puberty will be next crucial step. Best of luck. Talk to you later. See ya later bye , mom to Colby, 12, COX IV< LCHAD<ADHD<ACC sons Chad 14, healthy, Caleb, 9, healthy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2002 Report Share Posted June 12, 2002 >When he gets a cold he starts out with severe, and I mean severe, >croup, then progresses to the horrible cough where he can't breathe. , Do they have him on broncodilators or ongoing preventive meds.....something to help him? Cheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Cheri Yes, we have tried everything! He is on pulmicort now. Hope it works. Responds well to steroids, but is on them way to much. He had cushing syndrome before. He also has swelling of the upper airway which is very hard to treat. Our hopes were he would do better as he gets bigger, which he hasn't. He is getting more weak in the past year with his cough. He is getting to a point that sometimes at night is to weak to even cough after such a bad day. He is a fighter though, and tries to keep going thru the day, but can't continue at night, just too tired and weak. May the wind be always at your back.... , mom to Colby, 12, COX IV< LCHAD<ADHD<ACC sons Chad 14, healthy, Caleb, 9, healthy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 >He also has swelling of the upper airway which is very hard >to treat. I assume he doesn't need a trach or they would have suggested one by now? Cheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 Cheri, no Lucas doesnt have a track. Thanks, Kim Clcr100@... wrote: >He also has swelling of the upper airway which is very hard >to treat. I assume he doesn't need a trach or they would have suggested one by now? CheriPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.