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  #1  
Old Thu Sep 1, 2011, 09:05 PM
Gregsgrouo Gregsgrouo is offline
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Location: Worcester ma
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16 year old tired for over a year bone marrow failure

Hi new here! My 16 year old son has been exhausted for over a year and has had low grade fevers frequently. When we first saw our ped. For this complaint. She ordered bloodwork. His wbc and plt were low(2.9) and 106. He was referred to a hemotologist. He has had 2 bone marrow biopsies this year with about 10-15% cellularity. He has lost weight iver the past year despite eating well. Currently the doctors are perplexed as to the cause all viral studies werw negative. Rbc are nirmal but enlarged The plt are low on coint and also enlarged. Going for Gi testing soon to see if there is any metabolic problems. B-12 was 185 low but they never even mentioned it. Ugh!!! Any help is appreciated!
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  #2  
Old Fri Sep 2, 2011, 09:15 AM
Marlene Marlene is offline
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A B12 reading of 185 is deficient and needs to be corrected now. It should be at least 500, especially someone as young as he is. I would suggest you also find out what his iron, folate, b6, copper and vitamin D levels are. You can correct the B12 through oral supplementation.

Is he a vegetarian by chance? Could also have problems with gluten which impacts your nutritional status.

Read this thread on this forum. It's the most recent post on B12.
http://forums.marrowforums.org/showthread.php?t=2330
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #3  
Old Fri Sep 2, 2011, 09:44 PM
Gregsgrouo Gregsgrouo is offline
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Smile

Thanks so much for your advice! We are meeting with the Bone Marrow failure doctors in two weeks and i want to be prepared with questions and direction. I feel we are wasting precious time by not addressing some labwork like the low b-12 level. I wish they could just keep him there at Boston Chikdrens Hosp and run all the tests at once so we can get faster answers.
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  #4  
Old Sat Sep 3, 2011, 01:27 PM
Marlene Marlene is offline
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I don't understand why they are not treating the B12 at this point. I cannot think of any reason not too. You don't need to know the cause of the B12 deficiency in order to treat it.

You can treat it yourself or contact his GP/peds doc for guidance instead of waiting two weeks. Proper oral supplementation is just as effective as B12 shots.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #5  
Old Tue Sep 6, 2011, 08:32 PM
Gregsgrouo Gregsgrouo is offline
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We started b-12 orally (subl) a few days ago. Thanks for the advice. We are still waiting for a conference with the bone marrow failure clinic at Boston Ch Hospital hopefully next week. My boy is 5 ft 10 and weighs 122 lbs. He eats well yet slowly continues losing weight. They need to address this! He looks like a skeleton and I don't know how they can not see it when they examine him. (I am venting now).
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  #6  
Old Tue Sep 6, 2011, 11:58 PM
Hopeful Hopeful is offline
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Hi Gregsgrouo,

I also have the problem of slow steady weight/muscle loss. My doctors are not sure why and don't think it has to do with the disease. However, I use to be able to gain weight like a normal person! Please let me know if you learn of anything. I've been told to load up on calories and to make sure it includes meat.
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #7  
Old Wed Sep 7, 2011, 06:21 AM
Marlene Marlene is offline
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A little more info on B12....There is an active form with absorbs more easily. It's the Methyl form. Most are the Cyno form. The latter needs to be converted. Also, dosage is key when trying to build/restore levels. Even though the body only needs a small amount each day, you need to take quite a bit to ensure it gets absorbed. When restoring B12, many will take 5000mcg, which is 5 MG of the Methyl form of B12 until it comes back up to normal and then go drop down to 10000 mcg as a maintenance dose. In your son's case, I would probably start with 1000 mcg and work up to 5000 mcg. Some find B12 energizing, others find it puts them to sleep.

Has he been checked for diabetes? It's very frustrating to watch all of this and not get any answers. Like Hopeful said, good protein and fats at each meal is critical. When John got out of the hospital, we too had to increase protein intake. One fat that we added in was organic cold press coconut oil. It's a healthy fat that has many benefits. It's converted to energy quickly without having to be processed by the liver.

Another thing to check are his hormones. Find out how his thyroid and testosterone are.

Be sure to get copies of all his labs so you can see them and keep track of them. Too many time, there are abnormal results they don't even tell you about.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #8  
Old Thu Sep 8, 2011, 05:18 PM
Gregsgrouo Gregsgrouo is offline
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Wow do i ever apprec iate all your input and advice! We have an appointment on sept 20 with the BMF clinic. I will share any news. My son does eat plenty of meat and i make him protein shakes often. I keep a food diary too thats why its frustrating. His thyroid levels were normal and blood glucose fine. It just seems his body is not absorbing the nutrients or maybe using up the nutrients to keep his marrow production at the low level it is. I guess kore testin will show which. Also maybe an auto immune thing. I am certainly going to push for a b-12 shot at our appt. Oh i just bought an occult blood home test today to see if he has any in his stool. Just thought that may help. Ps. I am an RN with a background in public health. Be that as it may. Its still haed when the patient is your own child.
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  #9  
Old Fri Sep 30, 2011, 09:23 AM
Gregsgrouo Gregsgrouo is offline
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Cool Update

Thanks to the advice on this forum. I put my son on good high potence b-12 supplemments. Had his levels checked and it was 885. Unfortunately his energy levels have not improved. Im thinking the low level he had back in may (185) was questiinable. ( his level in april was 500)
Anyway. His case is being transferred to Adolescent medicine dept. As hematology cannot do any more for him.
I do need to vent this : that one doctor -who never met my son- suggested a psych eval!!! Ugh! They actually took his suggestion seriously. I was so upset because if they bothered to actually meet my son in person they would see what a sunshine he is! For a 16 yr old, he puts adults to shame with his maturity and patience. Anyway. Looking forward to more testing especially regardin metabolis and autoimmune studies.
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  #10  
Old Fri Sep 30, 2011, 10:44 AM
Marlene Marlene is offline
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If you have your B12 serum levels checked while you are supplementing with B12, you will get a higher reading. That said, if you want to get a more accurate result, you need to stop the supplement at least four days prior to testing. IMO, I would still continue with the B12 and at some point add in a B complex. The B vitamins need each other and if just supplementing with one, it can mask a deficiency in another.

B12 serum is the least reliable test for b12 deficiency. Here's a thread that discusses it.

http://forums.marrowforums.org/showt...&highlight=b12

Unfortunately, there are doctors, when they don't have an answer, do psych referrals. But there are good, caring doctors out there who will want to help your son and try to figure this out.

Good luck.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #11  
Old Wed Aug 28, 2013, 01:26 PM
redslw redslw is offline
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B12

I have pernicious anemia (my body cannot convert vitamin B12 from the foods I eat). It is an autoammune disease. I also do not metabolize pill form either. I have to take an injection of B12 once a month. If his problems continue, just make sure to rule that out.

redslw
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