Guest guest Posted June 5, 2003 Report Share Posted June 5, 2003 Hi, my son Josh had his iron levels checked, his genectic counselor called and told me it was only 18 she said 44-142 is normal, and told me he would need to have more iron added to his cocktail. I got a phone call from his metebolic dr today and he told me his 18mg that he is getting now from his multi vitiman is enough. I don't understand how this can be, he has been getting bloody noses latley also, but he's not concerned. Now that I've bored you, my question is, does anyone else have a child on extra iron? And if so how much and what were their iron level's from the start? Thank you sorry this is long. Patty Kraynik Josh age 7 Mito Myopathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 does anyone else have a child on extra iron? And if so how much and what were their iron level's from the start? My daughter's levels were Iron 8 (40-196 normal) UIBC 596 (114-407 normal) TIBC 604 (288-442 normal) % saturation 1 (11-48 normal) Ferritin 2 (4-226 normal) HBG was 6.4 (10.5-14 normal) She has been on 15 mg (7.4 BID) a day and each time we improve numbers and wean off we have to start over as she will drop. I know there is some theory on taking iron and mito, but I was told by mito doc (who checked with another mito doc) that there is a fine balance as anemia is not good either. Last time I asked as her numbers are not in the normal range I was told that it is ok to be somewhat anemic as they don't want to give so much iron (called it anemia of chronic disease) and they just monitor the levels to keep her hgb at least at 9. She does have some bleeding, but it stays about the same. Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 Hi Patty, The doctors tend to go by the Ferritin levels and some other values(don't recall which but can post later) to determine anemia or iron deficiency. Iron levels can drop easily from lets say a nose bleed and not be a good indicator of a problem. Ferritin is more stable so if it is low also then this can signify a problem. My daughter has iron deficiency so takes Slow-FE. She is adult size though at 15. Terry > >Reply-To: Mito >To: Mito >Subject: Iron levels >Date: Fri, 06 Jun 2003 04:42:42 -0000 > > Hi, my son Josh had his iron levels checked, his genectic >counselor called and told me it was only 18 she said 44-142 is >normal, and told me he would need to have more iron added to his >cocktail. I got a phone call from his metebolic dr today and he told >me his 18mg that he is getting now from his multi vitiman is enough. >I don't understand how this can be, he has been getting bloody noses >latley also, but he's not concerned. Now that I've bored you, my >question is, does anyone else have a child on extra iron? And if so >how much and what were their iron level's from the start? Thank you >sorry this is long. > > Patty Kraynik > Josh age 7 Mito Myopathy > > _________________________________________________________________ Protect your PC - get McAfee.com VirusScan Online http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 On this note, how many of you have kids with nosebleed problems? I have a 13 yr old that gets bad ones several times a day unless he takes a homeopathic Ferrum Phosphoricum 6x every morning. Then it's only once in a while that it happens. The doctors said it wasn't caused by anemia although he has mild anemia and they have no other ideas as to the cause. I have family members who have anemia that no amt. of iron supplementation helps and it's not from B12 either. Re: Iron levels does anyone else have a child on extra iron? And if so how much and what were their iron level's from the start? My daughter's levels were Iron 8 (40-196 normal) UIBC 596 (114-407 normal) TIBC 604 (288-442 normal) % saturation 1 (11-48 normal) Ferritin 2 (4-226 normal) HBG was 6.4 (10.5-14 normal)She has been on 15 mg (7.4 BID) a day and each time we improve numbers and wean off we have to start over as she will drop. I know there is some theory on taking iron and mito, but I was told by mito doc (who checked with another mito doc) that there is a fine balance as anemia is not good either. Last time I asked as her numbers are not in the normal range I was told that it is ok to be somewhat anemic as they don't want to give so much iron (called it anemia of chronic disease) and they just monitor the levels to keep her hgb at least at 9. She does have some bleeding, but it stays about the same.HollyPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 My two oldest daughters get nose bleeds. They have been irregular for a while now though. At times in the past Leah would have daily nose bleeds. What a pain! Overall, anemia has not been a problem with my kids though. Thankfully! Darla: mom to Asenath Re: Iron levels does anyone else have a child on extra iron? And if so how much and what were their iron level's from the start? My daughter's levels were Iron 8 (40-196 normal) UIBC 596 (114-407 normal) TIBC 604 (288-442 normal) % saturation 1 (11-48 normal) Ferritin 2 (4-226 normal) HBG was 6.4 (10.5-14 normal)She has been on 15 mg (7.4 BID) a day and each time we improve numbers and wean off we have to start over as she will drop. I know there is some theory on taking iron and mito, but I was told by mito doc (who checked with another mito doc) that there is a fine balance as anemia is not good either. Last time I asked as her numbers are not in the normal range I was told that it is ok to be somewhat anemic as they don't want to give so much iron (called it anemia of chronic disease) and they just monitor the levels to keep her hgb at least at 9. She does have some bleeding, but it stays about the same.HollyPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 Patty, My daughter is tube fed (keto diet) and receives 3 times her daily RDI of iron. However, she also was 'deficient ' in iron!! There is no other explanation (blood loss etc). But; by giving her a tiny dose (1/4 of daily dose) of liquid iron, her levels are back in normal range. The Dr's are baffled (i.e. cannot expalin it in medical terms..) but for what ever reason Gaby does not absorb all the iron she is given, and juts needs more in order to absob and utilise a 'normal' amount ne mum to Gaby, PDH, G Tube, keto diet, wheelchair dependant, CP,dislocated hips, and loves to sing! -----Original Message-----From: cows1988 Sent: Friday, 6 June 2003 2:43 PMTo: Mito Subject: Iron levels Hi, my son Josh had his iron levels checked, his genectic counselor called and told me it was only 18 she said 44-142 is normal, and told me he would need to have more iron added to his cocktail. I got a phone call from his metebolic dr today and he told me his 18mg that he is getting now from his multi vitiman is enough. I don't understand how this can be, he has been getting bloody noses latley also, but he's not concerned. Now that I've bored you, my question is, does anyone else have a child on extra iron? And if so how much and what were their iron level's from the start? Thank you sorry this is long. Patty Kraynik Josh age 7 Mito MyopathyPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 My son (joe, 3) just had a slight nose bleed last night for the first time. Over the last several weeks he has complained a few times that his head or brain hurt (headache, is what I am guessing). He has the complexIV, COX, Lactic Acidosis. These are 2 new symptoms and I wasn't sure what to make of them. Do I need to call our doc? Any comments or suggestions? Someone also posted about meds to avoid, the only thing that controls his fevers when he is sick is motrin and tylenol alternating every couple of hours. What is the problem with the meds? Thank you all, AnnMarie (mom to Joe and 3 other wonderful kids) honeybear50317@... wrote: > My two oldest daughters get nose bleeds. They have been irregular for > a while now though. At times in the past Leah would have daily nose > bleeds. What a pain! Overall, anemia has not been a problem with my > kids though. Thankfully! > > Darla: mom to Asenath > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 Our neurologist told me to not use Tylenol as it can damage the liver. There has been a lot of talk about overdoses of Tylenol can cause liver damage/failure. Then, if you take a person who's liver is already compromised due to a mito issue, the risks are greater for liver damage. This was my understanding. Maybe consult with your mito doc. I guess my approach is better to be safe and not use it. I also used an alternating Tylenol and Motrin to keep fevers under control. Now, I just give Motrin and give it at 5 hours (instead of 6) if needed. When was in the hospital last, her fever would start creeping back up between 4 and 5 hours and the nurses said it was fine to give at 5 hours. As far as calling your doc about new symptoms, I would say definitely yes! I am forever calling our doctor with questions. They sometimes think I am a little nutty but, what if something was going on and I didn't question it???? Hope I helped Kim - Mom to and Lindsey (20 months Complex I and IV), Delaney (6) and Mason (3) both healthy Re: Iron levels My son (joe, 3) just had a slight nose bleed last night for the first time. Over the last several weeks he has complained a few timesthat his head or brain hurt (headache, is what I am guessing). He has the complexIV, COX, Lactic Acidosis. These are2 new symptoms and I wasn't sure what to make of them. Do I need to call our doc? Any comments or suggestions?Someone also posted about meds to avoid, the only thing that controls his fevers when he is sick ismotrin and tylenol alternating every couple of hours. What is the problem with the meds?Thank you all,AnnMarie (mom to Joe and 3 other wonderful kids)honeybear50317@... wrote:> My two oldest daughters get nose bleeds. They have been irregular for > a while now though. At times in the past Leah would have daily nose > bleeds. What a pain! Overall, anemia has not been a problem with my > kids though. Thankfully!> > Darla: mom to Asenath > >Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2003 Report Share Posted June 8, 2003 Ok everybody, I'm getting really intrigued here. What is the connection between anemia and mito?? How pervasive of a connection is this?? How many have a chronic problem with it? Do other members of a mito family have the anemia problem? (the none mito dxed members). Someone a few days ago posted about " file of symptoms " for research-seems like this would be another one for the list. AND of course my curiosity is peeked as I've jsut discovered that I seem to have low iron levels. Docs of course had no ideas why......,hhhhmmmm Lee Mom to Red, Ada & Angel Lily ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2003 Report Share Posted June 8, 2003 Tylenol can affect the liver but usually not an appropriate dose is given. Motrin (ibuprofen) also interferes with Mito function. all NSAIDS (non steroid anti-inflammatory drugs) and most interfere with platelet function to some extent. We weigh the risk of allowing a fever to be untreated (very stressful to mitochondria) versus the risks of the drugs themselves. I usually don't treat fevers until they are 102 for this reason but other kids may not be able to tolerate a temp that high - it is very individual and simply requires making the best choices you can make given your child and the information you have. As with most everything in treating this disease it's often a " between a rock and a hard place situation " which requires weighing risks vs. benefits for your child. Nose bleeds - at this time of year many non Mito kids get nose bleeds due to allergies. It's something to watch but also something fairly normal in the spring and fall. Anne Re: Iron levels > My son (joe, 3) just had a slight nose bleed last night for the first > time. Over the last several weeks he has complained a few times > that his head or brain hurt (headache, is what I am guessing). He has > the complexIV, COX, Lactic Acidosis. These are > 2 new symptoms and I wasn't sure what to make of them. Do I need to > call our doc? Any comments or suggestions? > Someone also posted about meds to avoid, the only thing that controls > his fevers when he is sick is > motrin and tylenol alternating every couple of hours. What is the > problem with the meds? > Thank you all, > AnnMarie (mom to Joe and 3 other wonderful kids) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2003 Report Share Posted June 8, 2003 I am also very curious about this. Miranda is severely anemic right now with a hemoglobin of 7. She has been on Epogen shots now for 8 weeks as well as iron supplements and it is still yet to go up. Is this a Mito problem?? -- Re: Iron levels Ok everybody, I'm getting really intrigued here. What is the connectionbetween anemia and mito?? How pervasive of a connection is this?? Howmany have a chronic problem with it? Do other members of a mito familyhave the anemia problem? (the none mito dxed members).Someone a few days ago posted about "file of symptoms" for research-seemslike this would be another one for the list. AND of course my curiosityis peeked as I've jsut discovered that I seem to have low iron levels.Docs of course had no ideas why......,hhhhmmmm LeeMom to Red, Ada & Angel Lily________________________________________________________________The best thing to hit the internet in years - Juno SpeedBand!Surf the web up to FIVE TIMES FASTER!Only $14.95/ month - visit www.juno.com to sign up today!Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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