8 years old, need answers!
hello. we are currently awaiting the test results for my younger brothers possible diagnosis. they are saying may be adrenoleukodystrophy.
my family has never heard of this before. is bone marrow transplant the only option? if so can familys be donors? who has done this before? what happens normally? how long is recovery? have you tried the lorenzos oil thing? does that have any truth to it? please give any answers you may have! thank you.
Posted By: rudys_sister
Posted On: Aug 15, 2008 5:23 am
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Re: 8 years old, need answers!
Hello, my name is James Andrews I live in Moore, Ok. My son,7, was just diagnosed today with ALD. You have many questions I know, I still am struggling with the thought of what is to come. Our situation is our only hope is cord blood or bone marrow transplant. Our doctor told us that "The Lorenzos oil people" denied us access to their help because my son already had symptoms. She said that it is usually given to patients whose older syblings had it and they knew to test for ALD in the younger boys before symptoms occured. I wish I could have more answers for you. Try and send am e-mail to people on this website. It will go to an information center but I recieved a call back the very next morning, and that was on a Sat so they have helped me more than they can know and I appriciate it very much. Best of luck to you and your family. I swear tho, after this is over and even if my son passes I will dedicate my time, money, and heart to families and the search for a cure!!!!!!
Posted By: Knuckles78
Posted On: Aug 15, 2008 10:56 pm
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Re: 8 years old, need answers!
this is "rudys" mom. actually he goes by jack too which is what he is on here. i think this poster is one of my daughters. i have jack here in minneapolis waiting to see the doctors starting wednesday this week. the rest of my kids are in florida with their dad, atlanta (oldest daughter, oldest son and wife) and also in pensacola (son in Marines).
i have faced this thing from all angles and am prepared to fight. dont you give up either.
isnt it a coinciden
Posted By: marinemomkerry
Posted On: Sep 1, 2008 4:56 pm
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Re: 8 years old, need answers!
sorry my son kicked the laptop accidentally.
hang in there all of you, we live in a truly amazing time of medicine and cures
i would siggest going ahead and teaching your son some sign language. this is helping my son alot already
my regular email is kmccall8963@gmail.com
Posted By: marinemomkerry
Posted On: Sep 1, 2008 4:58 pm
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Re: 8 years old, need answers!
Hi there. So sorry to hear about the diagnosis of ALD. I have three sons and two were diagnosed with ALD in 03. One was eligible for the bone marrow transplant. It is true that they do not give the Lorenzo's oil if the child has active symptoms, determined via MRI. The transplant was considered successful and it was, it saved my sons life. He progressed during transplant and lost his vision. We are five years out and have had many struggles but are blessed to have him, since our older son died from ALD. When we had our transplant, we did chemo and radiation. My son was very ill, but the nurses there in MN are well trained to handle the pain and make the children feel at least well enough to rest. Email me directly if you want to with questions if I can help. smithrus5@wcrtc.net Blessings to you.
Posted By: gabbiebaby
Posted On: Oct 7, 2008 3:22 pm
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Re: 8 years old, need answers!
My son (22 yrs old) is 17 (5 yrs old at time of transplant) years out from the bone marrow transplant he received in Minneapolis in 1991. He has many day to day functional challenges, but he is alive. When Eric went through his transplant they tested the whole family. Basically people with ALD lack an enzyme that is necessary for the degradation of long chain fatty acids. If you destroy the host's bone marrow and transplant them with marrow from an individual with the enzyme then the long chain fatty acids can be degraded and removed from the body. My son did use Lorenzo's Oil for about 9 months, and during that time we did not see any further destruction of the disease. At the time of his transplant he could not discriminate between green and red (apparently the gene that causes the disease on the X chromosome sits very close on the DNA strand to the gene that is responsible for distinguishing between the two colors. Within six months post transplant Eric was able to successfully identify green or red. I would clearly recommend going through the transplant, but would consider using Lorenzo's oil until the marrow engrafts. Of course, it has been 17 years since Eric's transplant and he did not receive radiation (just chemo), and much has changed. Also, Bill Krivit is no longer alive so I no longer have him to discuss the program with. All I know is that my recipe was the following: one, I did not take my pediatrician's rationale for Eric's earlier illnesses as the WORD of GOD and insisted that he be evaluated by a team of specialists, two, I would not accept "no" for an answer from Hugo Moser when I requested Eric be referred to the U for bone marrow transplant, three, I did not accept having my son discharged back to the Ronald McDonald House until he had sufficient ANC, and until I was certain he was well enough to leave and would not need to return secondary to complications. What I am saying is trust your own gut. The final thing I will say is this, until recently the University of Minnesota did nothing to help Eric with his multiple day to day functioning needs. They did nothing to hook him up with community services etc. Recently when they contacted with yet another research project which was designed to look at how the boys who had been transplanted were getting along in life, I gave them an ear full. In fact, today he spent a day with the neuro-psych team, and they are finally listening to me when I say.......everyone wants their children to grow up, move away, make a life for themselves, and have a family of their own. When I watch the life being sucked out of my son because of his inabilities there is not one day that goes by that I don't look at myself in the mirror and beg to know whether I made the right decision. There is not a day that doesn't go by that I don't blame myself for having incarcerated him in a world of disappointment, sadness, and despair. I don't think he would be so unhappy if he could live on his own, but I know he can not do that without family and community support. I recently raised my voice to those at the University who seemed to have forgotten one extremely important fact, it simply is not enough save a life, once done I feel the University bears some responsibility to ensuring that the survivors of this dreadful disease have the necessary community support to then go on to experience as normal a life as can be expected. I urge those who are contemplating lifesaving therapies consider these things, because I feel it is pointless to win the battle only to go on and loose the war! Good luck and I wish your brother all the best. I will think of him as I have all of the other unfortunate boys who live with this dreadful killer.
Posted By: Cynthia
Posted On: Oct 28, 2008 9:25 pm
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Re: 8 years old, need answers!
I hope that you have received answers and direction since the diagnosis - I know what you are going through and how difficult it is. Our son, Nathaniel was diagnosed just before his 8th birthday in May of 1995. His symptoms were severe by the time we had a firm diagnosis and we decided not to try a bone marrow at the time and the oil wasn't an option either. He lost fine motor skills quickly and by the end of the year could not talk or walk. You have many decisions to make with more likely to follow quickly and your son's condition may change rapidly. We were fortunate enough to have Polly Green (now deceased) at Kennedy Krieger Institute at John Hopkins University to guide us with ideas on how to care for and treat our son. I am happy to share what I have learned if you are interested. Feel free to contact me. We will remember you in our prayers - good luck!
Kent Thomas
Salt Lake City, Utah
Posted By: kthomasut
Posted On: Oct 30, 2008 10:05 am
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Re: 8 years old, need answers!
At this time u r looking every where for answers. U need to go straight to Johns Hopkins Hospital & Kennedy Kreigar Ints in Baltimore, Maryland. Dr. Raymond Is good. My younger brother was 8 when he was diagnosis. They got him started on Lorenzos oil and a special diet. Of course its not a cure but it has prolonged his life. he is now 24. check out as many sites as u can. After 16 yrs of knowing I still have questions, U guys are not alone. Stay Strong!!!!!!! and pray. Lisa Myers
lmyers810@gmail.com
Posted By: lisamyers14
Posted On: Aug 18, 2010 11:51 pm
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