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Posted (edited)

Our ped did some routine bloodwork for a checkup recently...then added on serum ferritin b/c we thought dd looked a little pale. She wasn't anemic (lower end of normal) but her serum ferritin was super low.

 

So, now we are going to do iron supplementation. Also, vit d was in the lower end of normal.

 

Dd wasn't on a multivit. b/c she's very picky about which kids vitamins she likes (esp. doesn't like any with iron). So, I got some pills with just iron...they aren't too big, I think she'll take them (ped told us which dose to use).

 

According to Wikipedia, low ferritin has been correlated with ADHD and hypothyroidism (among other things). Our dd doesn't seem to have ADHD but I thought that was interesting since ADHD can also be a PANDAS symptom:

http://en.wikipedia.org/wiki/Ferritin

 

Here's more on iron deficiency

http://en.wikipedia.org/wiki/Iron_deficiency_(medicine)

in that article it says bacteria need iron for growth...so high iron can lead to more infections? So, this might be a little complicated? :( A double edged sword? (and this is wikipedia, so maybe I should take the info with a grain of salt?)

 

To reduce bacterial growth, plasma concentrations of iron are lowered in fever,[15] and following surgery after open wounds where it acts as a protection against infection.[16] Reflecting this link between iron bioavailability and bacterial growth, the taking of iron supplements can increase the risk of infection.[17] A moderate iron deficiency, in contrast, can provide protection against acute infection.[18]

 

 

Also, I am not sure of the difference between low serum iron and low serum ferritin? I think it was ferrtin that we got checked.

Edited by EAMom
Posted

expanding on the thought about bacteria needing iron...I wonder if those kids that get lots of strep (or can't seem to get rid of strep with antibiotics) have higher ferritin levels??? And if the situation might be improved by lowering iron/ferritin (ie no iron vits)???

Posted

My DS7 has low serum ferritin. Dr T had it checked. Its actually very low. It was 14 (22-322 range) in Oct 2010. It was 16 in early March. I have been giving him a multivitamin w/ 100% iron in it. Dr T said he's been seeing it in PANDAS kids. I have read the articles you reference. I sort of thought the ferritin was used up by some sort of bacterial infection. My DS is not one of the PANDAS kids who seems to frequently have strep. He is rarely sick. Never tested for strep when sick and his titers are completely normal.

Posted (edited)

EAMom:

 

This topic has been on my mind lately because I recently listened to an audio conference by Klinghardt discussing his thoughts about not supplementing different deficiencies because the bacterias feed off of these amino acids.

 

Our son did have low ferritin and magnesium levels and during our initial phase of treatment with a DAN pediatrician, we supplemented our son with heavy doses of iron and magnesium. Our son also had borrelia and babesia, which we did not know at the time and Klinghardt says that borrelia feeds off of magnesium and babesia feeds off of iron and to not supplement during lyme treatment.

 

This makes sense to me now. I think that the doctors should be wondering what is causing the deficiencies before simply treating them.

 

So, your quote about reducing bacterial growth is very interesting!

 

Food for thought!

 

Elizabeth

Edited by KeithandElizabeth
Posted

babesia feeds off of iron and to not supplement during lyme treatment.

 

Food for thought!

 

Elizabeth

 

 

interesting!! ds9 has had shortness of breath and fatigue with exercise. his RBC test slightly off with oxygen. traditional drs, ped - who is part of our team - and cardiologist we consulted consider that is likely iron-deficient anemia. integrative MD believes ds to have multiple TBI including babesia and believes these are symptoms of such. symptoms to me fall right in line with babesia.

 

i hadn't changed multivit b/c ds is very picky but was going to thinking addtl iron wouldn't hurt even though i don't really think the issue is iron. it did srtike me that would be wise to test iron rather than just assuming it's deficient b/c of symptoms and RBC test. he is doing better in past month or so -- no addtl iron, but addtl time with TBI treatment.

 

as always -- such good info to think about from the wise members here! thanks.

Posted (edited)

This makes sense to me now. I think that the doctors should be wondering what is causing the deficiencies before simply treating them.

 

 

In my dd's case I suspect it is dietary...she doesn't eat a lot of red meat or other sources of iron, or take a multi-vit with or without iron. But, it is hard to know what other factors may be at play. She is also on Azith., prozac, and daily Ibuprofen and I don't know if those have anything to do with her low iron. Dh and I decided to stop the Ibuprofen, just in case (and that is the easiest one to stop), since that could be implicated in GI bleeding (although she is not anemic yet).

 

I don't have the numbers in front of me, but her iron was very low, something like 5 (normal is above 40). (Maybe DH will correct me?)

 

I don't believe she has gotten strep since 2nd grade (when we throat cultured and found out about PANDAS). She is still on 250mg/day Azith... her sister has been positive 2x (that we know of) and I was positive 1x (this was in her 3rd grade year) and she was okay (although did react to exposure). Fortunately nobody in the family had strep in her 4th or 5th grade years (knock on wood).

 

I don't think she's one that was esp. prone to strep...hard to know. She didn't get typical sore throats with strep, so nobody ever cultured her until 2nd grade (when we insisted). So, any strep infections prior to 2nd grade would have been undiagnosed/untreated.

 

Hopefully getting her ferritin up to more normal levels won't make her more prone to strep infections!

Edited by EAMom
Posted

My DS7 has low serum ferritin. Dr T had it checked. Its actually very low. It was 14 (22-322 range) in Oct 2010. It was 16 in early March. I have been giving him a multivitamin w/ 100% iron in it. Dr T said he's been seeing it in PANDAS kids. I have read the articles you reference. I sort of thought the ferritin was used up by some sort of bacterial infection. My DS is not one of the PANDAS kids who seems to frequently have strep. He is rarely sick. Never tested for strep when sick and his titers are completely normal.

 

Our ped recommended much more. She recommended (althought our dd is older, 10 years) 50mg of elemental iron 2x daily (so 100mg/day). (The bottle I have says 65mg of elemental Iron (equivalant to 325 mg of ferrous sulfate) is 361% of the daily rda for adults.)

Posted

traditional drs, ped - who is part of our team - and cardiologist we consulted consider that is likely iron-deficient anemia. integrative MD believes ds to have multiple TBI including babesia and believes these are symptoms of such. symptoms to me fall right in line with babesia.

 

i hadn't changed multivit b/c ds is very picky but was going to thinking addtl iron wouldn't hurt even though i don't really think the issue is iron. it did srtike me that would be wise to test iron rather than just assuming it's deficient b/c of symptoms and RBC test.

 

Yes...I do wonder why they didn't go ahead and test the ferritin/iron levels?

Posted

I had a slew of testing done on my dd last Fall, when we started with a DAN! because I could not figure out what was going on.

She tested 'normal' in everything, ferritin (she does eat meats, and was fed formula w/iron), thyroid, Vitamin D was a little low (I think we all are with the new guidelines) this one is very easy to supplement, there are tasteless drops to put in drinks.

My dd does not have ADD, and I am adamant she doesn't have lyme. She did have gut issues/ yeast overgrowth.

I give a multi (chewable) that does not have iron.

Posted

EAMom, Our LLMD ordered a ferritin test at our visit a month ago, but I haven't seen the results yet. He didn't say anything about it, I just noticed on the lab order, so I don't know what made him think it might be a problem. I don't know the answers to your questions about it, but now I'm really interested. I will ask our doc more about this at our visit next month.

 

I'm also going to ask him about bacteria feeding on iron and magnesium. I guess if that's the case it might make sense not to supplement until the bacteria are wiped out, BUT I would think the levels would need to be closely monitored, because the body needs it too and how can the immune system ever get back on track if there are mineral deficiencies? Its a catch 22.

Posted (edited)

EA Mom- My DS's initial low ferritin level was taken before he started abx and ibuprofen. I have no explanation for the low ferritin level.

 

Thanks for the heads up on the supplementation amounts. I have yet to get any doctor concerned about DS's low ferritin. I started w/ the multivitamin on my own.

 

Meant to also say, my DS has the hyperactivity associated w/ PANDAS. Maybe its also due to low ferritin. He hasn't always been hyper.

Edited by nicklemama
Posted

EA Mom- My DS's initial low ferritin level was taken before he started abx and ibuprofen. I have no explanation for the low ferritin level.

 

Thanks for the heads up on the supplementation amounts. I have yet to get any doctor concerned about DS's low ferritin. I started w/ the multivitamin on my own.

 

Meant to also say, my DS has the hyperactivity associated w/ PANDAS. Maybe its also due to low ferritin. He hasn't always been hyper.

 

Low iron (ferritin? still don't know the difference) is supposed to be the most common deficiency. I wonder how many PANDAS kids are low vs. kids in the general population?

Posted

My ds8 has low ferritin also. His level was 15, with a range of 7-142. The ped who checked it said that 40 is optimal (in regard to the range of 7-142). I was not surprised he was low because he does not eat much red meat or other iron-rich foods. He has been taking a chewable iron supplement made by ProThera called "Chewable Iron Chelate." It has 30 mg of iron per tablet. It's supposed to have a cherry flavor, but he does not like the taste. He tolerates it though.The ped who diagnosed him with PANDAS checked ferritin along with many other things in his initial blood work. I don't think the reason for checking was specific to PANDAS. She checked many other routine things at that time. I am very interested to know that low iron has been correlated to ADHD. Ds did not have attention problems until this school year. It is amazing how much his attention has deteriorated over the course of this year. It has only been in the last couple of weeks that we have started to see improvements in that area. I think his attention has improved slightly because of abx treatment for PANDAS. He was undiagnosed until late Feb. He also has very low zinc, which has a relationship to attention problems also. I am hoping and praying that his attention will continue to improve. It's looking like we are going to have to pull him out of private school because it's just too much for him : ( I can't imagine how he will manage his anxiety in another school setting though. I hate #**&^%$ PANDAS.

Posted

My son has low ferritin as well, but not nearly as low as your DD. I don't supplement however. He eats an iron rich diet. DS's other CBC levels are all in the normal range, it is only his ferritin that is low - and its still in the "normal range" but just barely. I think with kids that who can be going through growth spurts and hormonal changes, these levels can change alot. At one point I was convinced DS had celiacs because he had low ferritin, very low zinc and lowish magnesium....had gastoenterologist check him for celiacs and retest those levels, about a month after the original testing, and they were all solidly mid-normal (except ferritin, which stayed borderline low).

 

I know he eats an iron rich diet, it seems that his issue isn't getting iron, it is in absorbing iron. So, sometimes I give him some multi vitamins with iron in it, and he's added a cereal that has iron in it too. But, I know for myself, I am borderline anemic, and I need to take 1-2 iron pills (once per month..the same 2 day every month...and it helps ALOT, mood and sleep/fatigue especially)! So, your daughter must feel pretty bad...does she have fatigue?

 

Did your doc test for any other minerals? Zinc, cooper, and vit A...all those levels can effect iron levels. And, celiacs can effect all the mineral/vitamin absorbtion...and with all the stuff our kids take that is tough on their gut, perhaps some damage there could be causing issues.

 

Does she drink a lot of milk? That can inhibit absorption and even cause "milk anemia" (I think thats what its called)..you probably already know this - but for anyone reading the thread, you should have your iron rich food with Vit C foods, and have your calcium (milk / cheese / yogurt) at another time.

 

How are her other CBC numbers? Here is a pretty good chart that describes different diseases and what the CBC show related to them.

http://www.labtestsonline.org/understanding/analytes/ferritin/test.html

Going GF and MF for a while might help. We did this with DS for a month before pandas dx's. But, I know you DD has food issues, so stressors in that area are probably tricky. I do think that the GF diet helped my son a little. On the par of giving fishoil. I think it suppossed to be anti-inflamatory. But what ever it was, it seemed to help a little.

 

We were more "wheat free" that month than true GF. I didn't go crazy with it, and he got a big reward at the end of the month. But he also lost some weight in doing it..so, a drastic change might not be for you. the biggest benefit of doing it for a month was it made ME more aware of how much gluten he was getting. I learned over the month how to make some changes that I pretty much stick to now. We found different, more healthful, things that he likes. It was worth doing for that alone. (it stunk at the time!)

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