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  • Fall 2006 OAA Pictures
    Peter MMA Cbl C Peter MMA Cbl C Date 10 21 2006 Views 716 Vegas MMA Mut 0 age 2 Vegas MMA Mut 0 age 2 Date 10 21 2006 Views 762 Beth IVA with son Kent and husband Beth IVA with son Kent and husband Date 10 21 2006 Views 477 Delany Nathan MMA Cbl B Delany Nathan MMA Cbl B Date 10 21 2006 Views 791 Brandon Michael

    Original URL path: http://www.oaanews.org/gallery2/main.php?g2_itemId=253&g2_page=3 (2012-10-25)
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  • Adrian | OAA
    Cruz His surgery took place January 21st and supposed to be a success He had to be in a cast for 90 days After 4 weeks in a control x ray the hip was out of the hip socket and back to the surgical bed for correction After two weeks in another control the hip seemed to be out again This time we took a tomography to confirm the situation of the hip Also we used this anesthesia to do the head tomography Anyway the hip was out again so the cast was out After this we didn t know what to do so we went to his neurologist to see what he had to say about the tomography He just looked at it and said it was OK Moms and grandmas instincts kicked again and took him to another neurologist in Cochabamba a city about 40 minutes fly to double check it This one scared the Jesus out of us We were concern about the hip and he told us that he had Cerebral Palsy Say what We cried a lot we were devastated He told us that he couldn t be with a cast for to long that he had to do so much work to minimize the CP Back in home we start to search for treatments In a family meeting an aunt told us about this hospital in Argentina Hospital Universitario Austral witch had very good doctors As a young couple with a small child we didn t have the resources to go there but with the help from ours families and from this aunt we took Adrian for a full study So in April we went to Argentina for hip and CP appointments Once there the doctors check him and with a MRI ruled out CP that was a relief But it wasn t all right He had some damage someplace in the brain that had affected his motor skills We asked them what to do with his hip and explain to them what the other doctor told us They recommended to fix the hip ASAP so this wouldn t interfere with his developmental milestones One of the doctors thought it was recommendable to do some metabolic test to rule out a metabolic disorder By that time we didn t have any ideas about metabolic disorders We took Adrian to Laboratorio Dr N A Chamoles and leave the urine and blood samples This is the only lab that does this kind of tests in all Argentina and one of the few in South America We went back to Santa Cruz Bolivia the city we live a little more calm unaware of the A bomb that was going to be drop on us A few weeks later we received a call from Dr Chamoles telling us that something was wrong with our baby Get Albicar L canitine in Argentina and give him 1g a day for 30 days and then send us some more urine and

    Original URL path: http://www.oaanews.org/Adrian.htm (2012-10-25)
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  • Nikki | OAA
    find any immediate clinical indications that Nikki had GA1 and took blood and urine samples which Dr Morton ran at his own lab to confirm her diagnosis Not only did they confirm Nikki had GA1 but her levels were very high Dr Morton s dedication and caring were apparent immediately He spent hours explaining to me the disorder the implications and what we could face in the next few years then re explained as much as he could to my husband over the phone who was at home with our 27 month old I have never been the type of person that listens to doctor s advice or trust them implicitly My first disagreement with Dr Morton came over feeding He instructed me that as of ten o clock that night Nikki could no longer nurse since we would have to keep a careful count of her caloric intake and that she could no longer receive breast milk Although being notified of her illness was a devastating blow this news did me in I am a firm believer in the health benefits of breast milk and had nursed my first daughter using a pump when I returned to work When Dr Morton left that night I sobbed uncontrollably The night became progressively worse as he did not want Nikki to have any milk and said the glucose IV s would keep her satisfied over night they didn t She screamed well into the night and glared at me with accusing eyes wondering why not mother would not feed her when she was hungry The nurses saved me and took Nikki out of the room so I could get some rest The next morning we had our first of many MRI s and though it showed some increased fluid around the temporal homs her basal ganglia were intact This started our day off on a good note and then Dr Morton and I resolved our disagreement He would allow me to continue to give Nikki breast milk as long as I pumped it and gave it to her through a bottle I ordered a double pump and for the next 17 months fed Nikki in that manner It was a lot of work but to me it was worth it Nikki and I went home that evening and started off our new schedule of medications twice a day Nikki had no problem adjusting to the L Carnitine but hated the liquid Diazepam I discovered the medibottle that saved us a lot of fighting and allowed her to get all the necessary medication Soon this became routine and we traveled the 2 hours to Strasburg every 4 6 weeks for follow ups Although her head lag persisted to the far limits of normal Nikki reached every other developmental milestone on time rolling by 3 months sitting by 6 and walking at 11 1 2 months of age On physical examination Dr Morton would always find some slight dystonic movement although our local

    Original URL path: http://www.oaanews.org/Nikki2years.htm (2012-10-25)
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  • Tyler | OAA
    GA 1 Tyler Age 20 MMA Cbl A My name is Tyler I am 21 years old I was born and still live in Hillsboro Oregon with my Mom Dad and 15 year old brother Mark I was diagnosed with Methylmalonic Acidemia CblA at 6 months old after my first crisis while I was in a coma by Dr Buist After I came out of coma and my family was able to take me home During ages 1 4 I sometimes became very sick some of those times I had to go to the hospital I didn t grow as fast as the other kids I also didn t eat very much as a kid so from about 7 months to 4 years old I had to be on an NG feeding tube just to get the minimum amount of food to survive because I just refused to eat I also developed some speech problems My parents took me every week up to the OHSU to get help for me for my speech and eating problems so I would be able to attend elementary school I got off the feeding tube around 4 years old I learned to drink my formula in a sippy cup but it would take me at least an hour to drink 4 ounces In elementary school I was still the smallest and shortest kid in my class I would sometimes leave class to go to lower level classes in the school with other teachers I played baseball from kindergarten until fourth grade In 5th grade I finally got to 50 pounds and had a big party to celebrate When I got into Jr High my height started to level out I was not the shortest in my class anymore At the beginning of Jr High

    Original URL path: http://www.oaanews.org/Tyler.htm (2012-10-25)
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  • Kumiko | OAA
    a little one in that kind of condition but we ve found it s very important to get your sleep too It s a difficult balance to achieve and at that early stage we didn t know how many days off work we would need We took turns working and staying with Kumiko and sleeping Within a few days they had a diagnosis for Kumiko s condition MMA and had a special metabolic formula for her Kumiko woke up and her condition stabilized even more to where we felt as though we were meeting our daughter for the first time They moved her slowly from various IVs and medicines to the new formula One medicine that continued and would become daily was Levocarnitine As I understand it Levocarnitine is a carrier substance that helps remove the Methamalonic acid from her blood We still use Levocarnitine brand name Carnitor to help Kumiko clean her blood of the methamalonic acid We never got a clear answer on whether this stuff is related to the L carnitine that you can get at some health food or sports food stores so if you know the answer please let us know Sometimes Levo Carnitine gives your child a little bit of a fishy smell The doctors suggested that we have a gastro intestinal feeding tube or G tube installed in our baby so that in the future we can keep her hydrated even if she refuses to eat Normally with G tubes a nissin is also performed for acid reflux However hey used some big machine downstairs and formula laced with radon to verify that her gastro intestinal tract had no problems that would indicate that a Nissan was needed After nine days in the hospital we finally got to take Kumiko home Kumiko was feeling some pain from the many IV sites and the g tube surgery but as she started to heal she started to show more signs of alertness than she ever had before She was like a new baby She began to look at things with interest She began to make an effort to move more and slowly she began holding her head up During the months following her first hospital visit there were weekly blood tests many doctor visits and prescriptions to pick up We used Motrin more than Tylenol for Kumiko s pain because the nurses explained that it s easier on her liver Since this condition is already hard on their livers we tried to reduce other strains on it I m a big fan of aspirin which is also metabolized through the kidneys but it s hard to find it in a liquid form that you can give to babies One of Kumiko s prescriptions was for B12 injections Not only was this a weekly shot that hurt but the first pharmacy gave me a cyano type so the doctor made me go back and get another kind from a special pharmacy and in the end she

    Original URL path: http://www.oaanews.org/Kumiko.htm (2012-10-25)
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  • Martha | OAA
    that I do have a fair amount of enzymatic activity Because of my mild condition and age at the time of diagnosis I have never been on a low protein formula My initial treatment was a low protein diet and biotin supplementation Even before my diagnosis I did not consume much meat or milk Even now those are not foods I generally crave Growing up in Wisconsin cheese has been my biggest nemesis Most of my friends throughout school were not even aware I had such a condition that restricted my diet When we went out to eat I would often order the same thing as everyone else To compensate when I was at home I rarely ate any amount of high protein foods My current diet has not changed all that much I still do not each much protein especially when I am at home but splurge more when we are out to eat I do not formally count grams of protein at this point I just try to limit high protein foods as much as possible and use common sense If I know I have eaten a lot of protein one day I make sure to back off the next When I am ill I am extra careful to limit my protein intake and take the full amount of carnitine In addition to a low protein diet I also continue to take biotin 10 mg day as well as a multivitamin with minerals additional folic acid and additional calcium daily Ten years ago my sister witnessed me having a seizure That was the first and last one I have ever had Though the cause was never determined I have continued on dilantin 300 mg day since we are unsure if the seizure was related to propionic acidemia I will certainly admit that at times it has been less than desirable to have this metabolic disorder Although I have been blessed with a mild case I can relate to some of the frustrations I have read about others experiencing most notably the fish odor associated with carnitine This single issue has probably been my biggest struggle coming no less during the already awkward teenage years Most frustrating is that I cannot smell the odor myself leading me to rely on my close friends to let me know if I was the cause any time I heard a comment in school related to a fish odor I can t even count the numerous times I remember thinking I hope they are having fish for hot lunch today to explain the smell Since then my carnitine intake has consistently been suboptimal as evidenced by lab results I have been trying to improve on this but it hasn t been easy Despite the frustrations that come with having a genetic condition having propionic acidemia has enriched my life in many ways While an undergraduate at the University of Wisconsin I spent four years working in a variety of capacities in the Biochemical

    Original URL path: http://www.oaanews.org/Martha.htm (2012-10-25)
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  • Marisa Runs in the New York Marathon | OAA
    Gabriel Propionic Acidemia Marisa mom to Gabriel Propionic Acidemia planned the most awesome feat to run in the New York Marathon below is Marisa s accounts of the day I had to wake up at 5 00 am to be at the Ferry at 6 Everything closed at 7 30 am and had to wait with all the runners for 3 5 hours until my start time Really really cold no tents no nothing Luckily I had been told to be prepared for the cold 43 degrees and wore 3 layers of disposable Everybody wears clothes that you then leave at the start Volunteers collect them all and give them to charity People carried even sleeping bags blankets or whatever to feel warm The race FANTASTIC What an experience I had the greatest time The public was awesome everybody cheering and feeling for you Children line along the race course to give you high five bananas tissue candy whatever they thought it might help I had so much fun Statistics TIME 4 26 01 all in one piece PLACE 20932 out of 38356 By gender 5274 out of 13002 women By age 997 out of 7069 Fundraising We collected 9

    Original URL path: http://www.oaanews.org/MarisaRunsinNewYorkMarathon.htm (2012-10-25)
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  • Melissa | OAA
    1995 issue of the newsletter I thought since I needed to fill some space in this newsletter I would give you all an update on what s happening with our daughter Melissa Melissa turned eleven years old last November and is currently mainstreamed in a 5th grade classroom in public school here in a suburb of Minneapolis Minnesota She is truly a Minnesota kid and loves winter and playing in the snow Since she has been healthy and not metabolically unstable for almost five knock on wood years I don t tend to cringe when she does go out and play in the cold and snow She continues to get all of her nutrition from her NG tube NG stands for nasal gastric Yes we have continued the use of an NG versus a G tube mainly because well we just haven t had any problems She has been putting down her own NG since she was about four years old and just recently we moved up to a bigger NG tube 10 French in order to make her bolus feeding go a little faster and not so difficult to push with the syringe Since going to this bigger NG she has been able to perform the bolus herself I have to admit even though I do supervise her it is a great relief on me and my arm muscles She is very proud of herself and I am even training her to measure her own formula Her formula consists of Propimex 2 80056 whole milk water one jar each of Gerber s fruit and meat baby food I believe adding the real foods has contributed to her good health Melissa does not really see herself as different and is a very happy go lucky child She is developmentally delayed and has attended private speech therapy for the past seven years Her speech has moved up to about a 6 year old level and reading is on a 3rd grade level and math is about a 2nd grade level She does have private tutoring and even though she is labeled at school as Mild to Moderate Mentally Impaired she does function much higher than similar children with this label She does have good memory skills and is always eager to learn She is currently in a Special Olympics Gymnastics team and last summer proudly won four metals at the state meet She is also taking swimming lessons and is on an adapted t ball team in the summer She has been involved with Girl Scouts the past few years but of course I m one of her leaders and I m always advocating for her to be included in typical activities Her social skills are obviously delayed as well but after children get to know her they do enjoy playing with her She is definitely a daddy s girl and enjoys helping her dad work on his car or go for a motorcycle ride She started a new school in

    Original URL path: http://www.oaanews.org/MelissaAge11.htm (2012-10-25)
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