Re: Good evening from the Fraser Valley in Beautiful British Columbia

[Guest guest]

Hi Suzette,

I just read your post this am and wanted to tell you that, although the blood

anemia issue is not an issue for my son right now, I have read of others on this

list who have experienced this and believe it's related to mito.

If you don't get a response, re-send the email with " anemia questions " in the

subject line and I bet you will hear from others with similar difficulties.

Good luck,

Anne R - mom to Asher (almost 4! - mito, Complex III) and Sam (8- non-mito,

primary immune deficiency)

[Guest guest]

Hi Suzette,

I just read your post this am and wanted to tell you that, although the blood

anemia issue is not an issue for my son right now, I have read of others on this

list who have experienced this and believe it's related to mito.

If you don't get a response, re-send the email with " anemia questions " in the

subject line and I bet you will hear from others with similar difficulties.

Good luck,

Anne R - mom to Asher (almost 4! - mito, Complex III) and Sam (8- non-mito,

primary immune deficiency)

[Guest guest]

Not sure if anemia is related to mito or mot, sorry. However, I have been anemic since I was a child. I have never been tested for mito, nor am interested in such, but do show many soft signs wich have always been questioned and never explained. My mito kid has hac severe liver problems but never has been anemic.

I also never try to remember numbers off labs, sorry I can't compare. I have had one blood transfusion after childbirth (hemmoraged, never explained why.) Also I have usually responded somewhat well to iron supplements. The only problem I have with that is that sometimes they really need to up the dose, because I don't absorb it correctly. The highest dose I remember being on is 1300 mg. a day. I only realized how high it was when the pharmasist actually called the doctor because they thought it must be written wrong, it was correct.

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[Guest guest]

Not sure if anemia is related to mito or mot, sorry. However, I have been anemic since I was a child. I have never been tested for mito, nor am interested in such, but do show many soft signs wich have always been questioned and never explained. My mito kid has hac severe liver problems but never has been anemic.

I also never try to remember numbers off labs, sorry I can't compare. I have had one blood transfusion after childbirth (hemmoraged, never explained why.) Also I have usually responded somewhat well to iron supplements. The only problem I have with that is that sometimes they really need to up the dose, because I don't absorb it correctly. The highest dose I remember being on is 1300 mg. a day. I only realized how high it was when the pharmasist actually called the doctor because they thought it must be written wrong, it was correct.

Try the new Beta version of MSN Messenger - it's FREE!

[Guest guest]

Hi Suzette,

I don't have any answers for your anemia questions, but please don't ever feel like you are wasting anyone's time. I don't post very often, but when I do, I feel so much support and empathy from everyone here. Each child is affected differently and no matter how severe or how mild, we are all going through the same thing. Please post whenever!!

Kris

Mommy to Ellie, 3....Leigh's, C-IV and my angel

[Norton AntiSpam] Good evening from the Fraser Valley in Beautiful British Columbia

Good evening all! Hope all is well on your end. We just met with a new doctor last Thursday who requested a slew of bloodwork, however, when we got home the doctor's office called and said they forgot to request a CBC so we went to the lab the next day to give one more vial of blood. AT approximately 9:00 pm on Friday, the children's hospital calls to tell us to bring Kayla into hospital as her hemoglobin dropped to 45 and by 12:00 that nite, she dropped to 40. We ended up spending the weekend watching her go through two blood transfusions and still no answer as to why this was happening. It brought her hemoglobin up to approx 60-70 but they still could not answer what or why. This leads to a couple questions for anybody that can answer them or have any thoughts:1) Do any of your children face the problem with chronic anemia?2) Is this chronic anemia a Mito problem or is it something totally different?We are just beside ourselves; I just resigned from my job so Kay is not left at home alone anymore and to relieve my 11 year old from the responsibility that we put on her little shoulders.You know, when I read some of your stories I feel that Kay is not that bad at all and that is why I do not come on line much as I feel I am just whining and wasting peoples time. So on that note, thank you for your time and listening to a worried mom and dad.SuzettePlease contact mito-owner with any problems or questions.

[Guest guest]

My daughter Abigail has large red blood cells although she is not anemic. The genetics dr. believes this is a result of mito. I am presently seeing a hemotologist that is checking her folic and B12 levels to rule out prenacious anemia (spelling may be wrong). Its very confusing and frustrating when you don't know why?? I laugh to help stop the insanity, the dr doesn't even know why certain things are the way they are. When I get the blood results and some more info I will post.

Kerry Mom to Abigail mito and BridgetKris & Matt Kovalcik wrote:

Hi Suzette,

I don't have any answers for your anemia questions, but please don't ever feel like you are wasting anyone's time. I don't post very often, but when I do, I feel so much support and empathy from everyone here. Each child is affected differently and no matter how severe or how mild, we are all going through the same thing. Please post whenever!!

Kris

Mommy to Ellie, 3....Leigh's, C-IV and my angel

[Norton AntiSpam] Good evening from the Fraser Valley in Beautiful British Columbia

Good evening all! Hope all is well on your end. We just met with a new doctor last Thursday who requested a slew of bloodwork, however, when we got home the doctor's office called and said they forgot to request a CBC so we went to the lab the next day to give one more vial of blood. AT approximately 9:00 pm on Friday, the children's hospital calls to tell us to bring Kayla into hospital as her hemoglobin dropped to 45 and by 12:00 that nite, she dropped to 40. We ended up spending the weekend watching her go through two blood transfusions and still no answer as to why this was happening. It brought her hemoglobin up to approx 60-70 but they still could not answer what or why. This leads to a couple questions for anybody that can answer them or have any thoughts:1) Do any of your children face the problem with chronic anemia?2) Is this chronic anemia a Mito problem or is

it something totally different?We are just beside ourselves; I just resigned from my job so Kay is not left at home alone anymore and to relieve my 11 year old from the responsibility that we put on her little shoulders.You know, when I read some of your stories I feel that Kay is not that bad at all and that is why I do not come on line much as I feel I am just whining and wasting peoples time. So on that note, thank you for your time and listening to a worried mom and dad.SuzettePlease contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. __________________________________________________