http://www.mdjunction.com/forums/homocystinuria-discussions/feed http://www.mdjunction.com/forums/homocystinuria-discussions/feed en-us Copyright (C) MDJunction.com. All rights reserved. Sat, 25 May 2013 18:24:51 -0700 http://www.mdjunction.com/forums/homocystinuria-discussions/introductions-personal-stories/1793584-facebook-and-hcu#10250428 Hi Jaye, I'm not sure if you check this sight now either, but its worth a try. I'm curious to see how you are dealing with you 3 boys and the diet. I hope you are doing well. You were such an inspiration to our community. There have been so many more members in our facebook group it is amazing. I've come a long way with the diet.... Sun, 11 Nov 2012 14:19:39 -0800 http://www.mdjunction.com/forums/homocystinuria-discussions/introductions-personal-stories/3037682-hello-everyone-my-new-baby-has-been-diagnosed#10250413 Hi, I was diagnosed with HCU 17 years ago, at the age of 10. Depending on the type of HCU you have will depend on how your doctor treats you. Some patients who are B6 responsive do not need to do anything else other than just take the B6. Others will also need to take betaine, and then there are those who take b6, b12, folic acid, and betaine/cystadane. Most people who are not b6 responsive are diet restricted. If you are diet restricted on meds. you really need to take it seriously! As a tee... Sun, 11 Nov 2012 14:15:01 -0800 http://www.mdjunction.com/forums/homocystinuria-discussions/general-support/3456279-hi#10250389 Hi, It sounds like a lot of the other cases I have heard. Not a lot of support, and feeling isolated. Currently facebook has 2 very active groups for patients with homocystinuria.... Sun, 11 Nov 2012 14:06:55 -0800 http://www.mdjunction.com/forums/homocystinuria-discussions/introductions-personal-stories/3380745-having-a-baby-success-or-not#10250384 Hi Cheryl, How did the doctors go about your pregnancies while having HCU? Are you b6 responsive or not? I am not which makes controlling my levels far more difficult. I'd like to one day have the option of having children if I choose to. It would be great since you have experienced this first hand if you could offer some more details.... Sun, 11 Nov 2012 14:04:03 -0800 http://www.mdjunction.com/forums/homocystinuria-discussions/general-support/3867854-my-6-week-old-baby-was-just-diagnosed#10250377 Hi. Being as your child is still very little I wouldn't get to panicked. I wasn't diagnosed till I was 10 with Homocystinuria. Starting the diet from birth is a lot easier than starting it when you are older. I guess starting it from birth it then becomes second nature, you know nothing other than it. Everyone experiences different symptoms. The most common are dislocated lenses and behavior issues. These things can be avoided though by staying on diet. I know I shouldn't do this, but since th... Sun, 11 Nov 2012 14:02:02 -0800 http://www.mdjunction.com/forums/homocystinuria-discussions/general-support/3769240-its-been-rough#3769240 hi, im a 39 year old who didnt know i had hcu untill I was 19 years old. I went into the hospital in a bunch of pain to find out that I had lost all kidney function due to the stones had filled and blocked both kidneys. I am alergic to the meds which control the cysteine. Now I have lost 1 kidney and am in stage 4 renal failure. I have been searching for a support group for years feelin alone because the doctors really hasnt helped much with research. I have 3 children n 2 grand children and... Thu, 24 May 2012 14:32:14 -0700 http://www.mdjunction.com/forums/homocystinuria-discussions/general-support/3279161-low-protein-recipies#3583840 Hi - just joined the group - my 14 yr. old daughter was diagnosed with HCU one year ago - her only symptom is that she is 5'11 (and I am 5'1 .) Otherwise she is very healthy and doing well in school. After many blood tests we have her eating 30 grams of protein in her diet and getting 30 from HCU express formula. This keeps her homocysteine level at about 50 which is where the doc. wants it to be. A few low protein ideas: baked spaghetti squash mixed with a small amt of corn spaghetti (4g... Thu, 22 Mar 2012 13:11:53 -0700 http://www.mdjunction.com/forums/homocystinuria-discussions/general-support/3367313-snack-ideas-for-my-7-yr-old-son#3367313 Hi, I have just put my son onto packed lunches at school as he was on school dinners and they were very helpful with his diet, but he was not eating and is very skinny. He was diagnosed with HCU last year, so he is aware how good normal food tastes! Meaning I struggling to get him to eat pescription foods, does anyone have any ideas on easy snacks to put in his lunch box? Apart from fruit which he does have?? :kiss:... Wed, 11 Jan 2012 03:59:01 -0800 http://www.mdjunction.com/forums/homocystinuria-discussions/medicine-treatments/855897-reformula-and-medicine#3276656 Hi what is HCU GEL?.. I take 2 folic acid, 2 b6 tablets I get b12 injections each month and I take betain.. I have another question can anyone here please send me some recipes to my inbox? or suggest any cook books with low protein meals?..i pretty much eat like a normal person does except I eat smaller portions of protein. For example I may have corn flakes or toast for break fast..lunch might be a small tuna salad fruit and veg and dinner could be anything from a roast to fish and salad or chi... Sun, 11 Dec 2011 02:37:40 -0800 http://www.mdjunction.com/forums/homocystinuria-discussions/general-support/3106924-need-advice#3106924 My grandson was just diagnosed; he is 2 weeks old. What type of questions should we be asking his Dr.? I can't speak with him until Monday but want to be very prepared by then. Any help would be greatly appreciated!... Fri, 07 Oct 2011 10:31:16 -0700 http://www.mdjunction.com/forums/homocystinuria-discussions/introductions-personal-stories/1448537-patientcarer-involvement-in-research#2992474 Sorry im late too, but if i can be of any help in future please let me know. I have 3 little boys, all with HCU.... Sat, 20 Aug 2011 20:02:18 -0700 http://www.mdjunction.com/forums/homocystinuria-discussions/general-support/2992464-mummy-to-3-boys-with-hcu-1-girl-non-hcu#2992464 Hey all! Have been looking for a good support group for ages, especially for one where the discussions didnt scare me silly. All my boys were diagnosed at birth, and weve had great control the entire time. No side effects etc, and 3 boys willing to take all the meds and gels *touch wood*. Yes, I know how lucky we are in that regard!! Anyway, look forward to chatting...... Sat, 20 Aug 2011 20:00:48 -0700 http://www.mdjunction.com/forums/homocystinuria-discussions/general-support/2505040-homocystinuria-videos-on-mdjunction#2517356 Hi - it's me again... I got many PMs from members asking to upload their own videos. At this point we can't add to the library . but hope we will be able to soon, we understand the importance of that! and another (not related) topic...Two weeks ago we added to the (now available on chrome too) the Groupon application that shows you the hottest daily deals in your town, every day. We received great feedback from the people using the toolbar so I suggest trying it out!!! CU roy... Wed, 09 Mar 2011 03:18:39 -0800 http://www.mdjunction.com/forums/homocystinuria-discussions/general-support/2090001-new-to-the-group#2092998 Hi Joy - thanks for the warm welcome thats fantastic that you have been able to get Ariellas levels down so low and consistant by the sounds of things. Sienna has had both lenses removed and at first they used contact lenses - the theory behind this was that whilst at 6years old she would be still developing and growing it could do more harm if she had an artificial lens fitted. the problem we had was as you can imagine, at 6 years old it was impossible to take teh lenses out and replace t... Thu, 11 Nov 2010 06:19:25 -0800 http://www.mdjunction.com/forums/homocystinuria-discussions/introductions-personal-stories/288518-rehomocystinuria-support#1447055 My daughter is 18 was diagnosed at 6 years old. She has lens subluxation, aggressive behaviour (she says she needs anger management), her joints are a bit stiff she had a problem bending from the knees, no scoliosis yet thank goodness, she has fallen arches on both feet, and she has some learning difficulties. She doesn't know how to read write except for a few basic words. I believe her near signtedness is mainly the reason for this and her unwillingness to do homework and school work.... Wed, 28 Apr 2010 15:10:34 -0700 http://www.mdjunction.com/forums/homocystinuria-discussions/introductions-personal-stories/1370868-hello#1446982 Hi! I have 2 children with homocystinuria (Brittany is 18 and Bradley is 11). Brittany was diagnosed when she was 6 years old due to us checking out behavioural problems and this showed up in her bloodwork. Both Brittany Bradley are non-responsive to Vitamin B-6 but take it anyway for the long-term benefit to help prevent blood cloths, seizures, and stroke. They also take folic acid and betaine (a health food to help with digestion). Bradley drinks the hominex-2 formula but Brittany gave ... Wed, 28 Apr 2010 14:36:27 -0700 http://www.mdjunction.com/forums/homocystinuria-discussions/introductions-personal-stories/1317004-hello#1317004 My name is Amanda and I have joined this group on behalf of my sister, Donna. She is 47 and lives in Bradford, West Yorkshire, UK, I'm 45 and live in Mid-Wales, UK. Donna doesn't like computers much, and I've never been part of an online forum before, but we're hoping to be able to share with and learn from other people. My twin nieces are 19 and they're more used to online socialising, so I may give them the login details so that Donna can see the discussions for herself. After using menta... Sat, 13 Mar 2010 04:10:06 -0800 http://www.mdjunction.com/forums/homocystinuria-discussions/introductions-personal-stories/518659-hello#1117695 Hi - I just sent you a PM on here. Take care. Vicky... Sat, 02 Jan 2010 07:33:51 -0800 http://www.mdjunction.com/forums/homocystinuria-discussions/introductions-personal-stories/1105025-hcu#1114988 Hi Kay - I sent you a PM on here. Talk to you soon. Vicky... Fri, 01 Jan 2010 05:33:35 -0800 http://www.mdjunction.com/forums/homocystinuria-discussions/introductions-personal-stories/853983-rehcu-struggles#855878 Thanks for your response. It does help to hear from others, especially adults living with this, what they went thru and are going thru. What formula are you taking? Are you also on Betaine? I found Betaine in pill form on the internet and we are going to try that. My frustration comes more with his doctors at this point who don't seem to know what they are doing or how to read his levels. Levels they once told me were good they are now saying they probably weren't. And I did the leg work looking... Sun, 20 Sep 2009 08:14:18 -0700