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Hi All,

I am new here and hoping someone has some information to share. After stumbling across the site repeatedly while trying to research what's happening with my girls, it appears that there is quite a bit of collective wisdom here!!

I am the proud mom to two precious daughters (and a son who is about grown now), ages 14 & 15. All three of the kids have a chronic, progressive disease (Mitochondrial Disease) and deal with a whole host of medical issues. In the big picture, honestly, anemia is generally the least of their issues, however, any stress on their systems is something to take seriously.

When both girls came up anemic, this *seemed* like something relatively easy to fix!! One thing to know about this family is though, and I should have remembered it, we very seldom do things the way we are supposed to!!

Small tidbit of background regarding both girls.....up until menstruation started (4 years ago for both), they had both become mildly polycythemic and were being watched for that. My sister (their aunt) is polycythemic and has been being treated for it for years now. I assume the start of menstruation was just enough blood loss to get their numbers into the normal range and we have not had to worry about this issue since.

[U]Daughter #1: M, age 15[/U] [B]The Under Responder[/B]
Became anemic 2 years ago and was treated with oral iron for the better part of a year until an endoscopy was done and iron deposits were found in her stomach lining. Labs did NOT indicate overload at the time, but she was taken off the iron and we were told by GI to not do oral ever again.

August 2011 labs showed her H&H were a little low (11.1 & 33.0) but no one was concerned. December 2011 labs though showed hgb still a little low, but now RDW was high and MCH was low, indicating likely iron deficiency anemia. Further iron studies were ordered and showed:
HGB 11.4L
MCV 74.0L
MCH 24.6L
RDW 19.2H
Iron, Total 26L
% Sat 5L
Ferritin 5L

These labs, along with possible symptoms (excessive ice chewing, fatigue, generally not feeling well, brain fog, increased dependence on oxygen) started us on our current path.

We started then working on getting her into hematology to try and get her either IV or subQ iron since she cannot take it orally. Hematology was finally seen in late January and most of her numbers had continue to drop:
HGB 10.8L
HCT 33.3L
MCV 72.9L
MCH 23.6L
RDW 16.4H
Additionally, a Retic-He was done and was low at 22.5

Hematology refused to treat other than orally with these numbers, so GI agreed to allowing her to do oral iron (NovaFerrum) for 2 months, but no more.

Two months into treatment we just re-did labs and while I do not have all of them yet, there seems to have been NO improvement on some of the key ones.
MCV & MCH are still low
RDW is increased to 18.8
TIBC is even higher at 523
and Ferritin is still 5

I am assuming, since they didn't mention them, that her H&H may well be in the normal range now. Not sure what her saturation has done, but will get a copy of the labs on Tuesday and have a little more information.

[B]Has anyone else seen little to no relief with oral supplementation after 2 months?
SO frustrated with this whole fiasco....she has nausea everytime she takes the novaferrum and has been putting up with that for 2 months for no reason apparently. Hematology was being stubborn about treating, and honestly, just profoundly dismissive that she could be dealing with symptoms with her numbers where they were. They could not take into account all her other issues and how one more was just making it all worse. We are scheduled to see hematology again on Wednesday and I am honestly dreading it!! We NEED to get this issue under control and out of the picture though, desperately.

[U]Daughter #2: A, age 14[/U] [B]The Over Responder[/B]
Has never been anemic before. Became run down and not feeling well late last year, but it wasn't till January, when the cocophany of her and M both chewing ice obsessively made me wonder if maybe she was anemic too, that we tested her.

Labs done early January showed:
HGB 10.1L
HCT 31.5L
RDW 19.3H
MCV & MCH were both just barely in the normal range

With these findings, and what we were seeing in her sister, we decided to treat without doing further iron studies (kicking myself now). She was started on Ferrous Sulfate, 2 per day, in late January with plans to retest, with iron studies, in 6-8 weeks.

Retesting happened this last week and while I don't have all the numbers, the following are abnormal:
RDW is even higher at 21.7
(assuming H&H are now in normal range since they didn't mention them)
Most concerning though is that her Iron, Total is 253H, and her % saturation is 71H!!! TIBC is normal at 355. Her Ferritin is in the normal range at 16, but very much low normal range.

[B]Is it possible she was not iron deficient to start with? Although with her Ferritin on the very low end of normal, and the labs pointing towards it in the beginning (with even worse numbers than her sister), how likely is that? Is it possible to become this overdosed with only 2 months of a reasonable dose of iron supplementation? I see it talked about some when there have been IV forms given, or transfusions, but not so much with oral over a short time. Why is her RDW even higher? ANY IDEAS ON THIS ONE??!! She has me baffled.[/B]

At this moment the peds plan is NOT to take her off the iron all together, but to drop it to 1 pill 2 times per week. I suspect this is because her ferritin is still lower and the RDW is even higher, but am not sure. We are to retest in 6 weeks.

Trying to research polar opposite extremes of response has my head swimming....if anyone has any thoughts, I am ALL ears!!

Otherwise, thanks for reading my ramble :-)

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