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Pediatrics Treatment for juvenile patients

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Old Fri May 27, 2016, 11:44 AM
Lindsayt Lindsayt is offline
Join Date: May 2016
Posts: 6
Should I worry.

My son started out at the age of 4 he had random symptoms which lead to a referral to A pediatrician who did b/w . Found his hb was slightly low and put him on iron.

it was a constant cycle for a few yrs b/w every few months with hb always rising while on iron but trying to come off it nosebleeds would start (I'm told that's unrelated as his platelets are always normal) and he would be super grumpy and lower energy his hb was never below 100 tho. So we would continue that cycle of on again off again being on iron but his hb would always just come up into the bottom of normal range he would feel better the dr would take him off and we would be back to our grumpy tired kid with nosebleeds 3 to 4 times a month and I would know his hb would b lower again.

This sept we went to a walkin clinc as I felt he was getting lo and didn't want to have him start school feeling bad. This was a different dr then our ped, and he ordered a retic which had never been done the number was 23 normal 40-80 with hb125 and rdw 14.7 only normal being 11.5-14.5 everything else in normal range.

Three weeks later our pedi was back and wanted to recheck. Results were hb 116 hematocrit .35 rbc4.28 rdw 15.0 retic 29. He started him back on iron said maybe they should do a bmb and referred us to a hematologist we saw the hematologist and his blood work at that time was perfect as I expected because he had been taking iron and was feeling fine.he had also been on prednisone for posion ivy before we saw the hemotologist, not sure if that would affect any results.

When we went to see the hematologist it was a "fellow" that we saw and the hematologist that we were to see had previously reviewed all of his b/w sent down prior to our visit with the fellow. I brought the b/w that was done by the outside dr with the initial low retic they didn't have that when they reviewed it. Initially the fellow said they weren't concerned with any of the b/w they got. When I showed the fellow the outside lab work with the retic @23 he went and got the hematologist. His explanation was that he was probably sick and that there will always be abnormalities with b/w. I was concerned about the drop in hb between th the 2 b/w,he went from 125hb to 116 in 3 weeks but the hematologist wasnt concerned about any of it not even the retic so we went home with them saying have him off iron and get CBC in 6 months.

So that's where we are at now he is 7 now and has just had the CBC six months after seeing the hematologist . Results were hb great at 130 Rdw was in red marked high but I'm not sure of the number and the retic is 19,normal bEing 40-80. I haven't heard from his pedi so I am assuming he feels that is fine b/w.He wasn't even going to order any b/w he actually said that he was going to discharge him from his care and do no b/w because they weren't going to do anything about it anyways..... I did ask for the the b/w b/c it has been 6mths since the hematologist saw him and when they said to have it done and so the pedi then ordered it.

I am concerned but do not want to make a mountain out of a molehill. I feel the hematologist didn't have all the b/w when he reviewed it and then brushed it off as one bad result and that he was maybe just had a virus but now with this low retic and slightly high rdw and normal hb six month later should I be concerned at all? Or am I just beating a dead horse and worrying about nothing?
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Old Sun May 29, 2016, 10:04 AM
Greg H Greg H is offline
Join Date: Sep 2010
Location: North Carolina
Posts: 660
Hi Lindsay!

I'm sorry to hear about your trouble. I'm not sure I have an answer for you, but I didn't want your post to go unanswered.

I think clinical symptoms are more important than lab results. Is your son still on the low HGB - Iron supplement roller coaster? If so, that's clearly a cause for concern. If not, then I wouldn't necessarily fret about the lab results.

It does sound like your relationship with your doctors is not particularly productive. I wonder if you might find others who are better to work with? Is that an option? Are you in the US or elsewhere?

Take Care!

Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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Old Sun May 29, 2016, 02:29 PM
PaulS PaulS is offline
Join Date: Sep 2014
Location: New York
Posts: 247
Hi Lindsay - I didn't see if the doctors checked your son's iron level - It sounds like he may have an iron deficiency - slightly anemic, low recticulytes - all symptoms of iron deficient anemia - then he takes iron and things go back to normal - then they take him off iron and the problems return.... so I'd think it'd be important to know his iron levels before and after the iron supplements - Maybe he just doesn't get enough iron in his diet - some questions I'd have - How well does he eat? How much iron did they give him. What were his iron/ ferritin levels? If he's doing well taking iron supplements- why stop? Can he modify his diet to get more iron without supplements?


I Agree with Greg you may need to either get a different doctor or make sure your doctor spends sufficient time to answer you questions - you may also need to be more assertive - if the doctor says its a one time thing - let him know the history - etc. My guess is making sure he gets a balanced diet rich in iron will take care of things - not always easy in a 4 year old - but doable.

Best wishes,
Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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Old Sun May 29, 2016, 10:16 PM
Lindsayt Lindsayt is offline
Join Date: May 2016
Posts: 6
Thank you so much Greg and Paul I really do appreciate your response . He has had his iron and ferritin done as routine while he has been taking the iron over the past two yrs .everything comes up to the low end normal range but not much further he feels much better when on iron when he comes off its just like he can't maintain or keep up.

When we went to see the hematologist his numbers were good as he had been taking iron and he then took him off iron, he was quite dismissive and unconcerned. But I thought OK you know he's right if my child is really sick with some kind of bmd then it will show up within the time off iron and be easier to evaluate.

then we waited for 6 months so I have no idea what it did in between but he seemed pretty OK for the most part but recently has been grumpy and not his usual activity level, but tests say his hbg is good just that retic is low. He says his bones tingle.... if that makes any sense I don't know if means anything or if it's just him being a silly 7 yr old. He also has been asking to please go back on his iron. This kid is also my biggest eater has a Green smoOties regularly is probably one of the few 7 yr Olds out there that will turn over a package and read the iron content to find out if it's "a good iron choice"... also we do eat meat as well regularly.

He was on a powder iron it was 1/4 of a tsp a day, he was on some liquid type in the beginning but that was changed.

We are in Canada so we would have to get a referral to a different hematologist if that's what we wanted to do.l m kind of at a loss tho ... I mean the pediatrician said one minute that he was sending him to the hematologist because he felt it was time for a bmb the next time we see him hes discharging us from him care...when we saw the hematologist he was unconcerned with the ups and downs over two years and felt the low retic was r/t a virus and didn't need to see him again.

Then we went to our follow up pediatric appointment and he said he didn't need to see us anymore either.... but now these results so maybe a low retic means nothing if hbg is good? But Ireally bet if we did the test in a month again the hbg would be down. Ugh thanks again to both of you for your responses ... I guess What I mostly want to know is if a retic count Is Continually low is it cause for concern.
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Old Mon May 30, 2016, 09:05 AM
Marlene Marlene is offline
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,349
Hi Lindsay,

I would consider looking for a reason for the low iron versus a bone marrow disease at this point. I would rule out celiac/gluten disease, malabsorption issue, lack of intrinsic factor, h.pylori bacteria, etc. But still keep an eye on the blood work. Retic counts, on their own, don't tell a full story and need to be adjusted to account for anemia otherwise they can be misleading. And you don't always know if they've adjusted. Here's a link that may help explain it:

Digestive problems can impact blood production, even if there are no clear GI symptoms. Unfortunately, many doctors won't check for any of this unless there are clear indications...clinical symptoms and abnormal lab tests. However, many problems are in the works well before any symptoms show up.

Vitamins B12 and B6, folic acid, copper and molybdenum help to make the iron usable. Vitamin C will increase iron absorption while having milk with meals will reduce uptake as will anything with tannins in it like tea. Low copper can impact iron absorption. It's a delicate balance.

I would suggest checking B12, folate, copper and zinc levels. Make sure all supplements are stopped 4 to 5 days prior to testing otherwise the test will be falsely elevated. The blood serum B12 should be over 400. A low normal in someone so young would be a red flag.

Take care,
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Mon May 30, 2016, 10:49 AM
PaulS PaulS is offline
Join Date: Sep 2014
Location: New York
Posts: 247
Hi Lindsay - I'm not a doctor, just a Dad who had a bone marrow disease - First a story -

When my first child was born we needed to take her to a pediatric endocrinologist at a major hospital because she had a genetic issue - she was an infant - the Dr. examined her curtly as if she were a piece of meat. He explained the situation and sent us for blood tests. My daughter became hysterical, crying struggling to get away - the nurses tried to hold her down... it dawned on me that whatever the test results were, they wouldn't have any impact on the treatment plan - I ran and confirmed that with the doctor - ran back and swept my daughter away from the phlebotomist and found a new doctor far from home who was not only highly skilled, but kind and gentle. (My daughter is now 26 and awesome). I learned its important to understand the purpose of any tests - and whether the results will make any difference in how something is treated - and to not tolerate fools for doctors.

If you can find another doctor who will listen to you and answer all your questions - I think it will pay off in the long term. If you can't - then you have to find a way to communicate better with yours so that you get your questions answered either during the visit or after.

As for now, sounds like you child is eating fairly well and is very aware of his iron issues - it must be scary being taken to specialists and being told you have some problem with your blood or bone marrow - would give me tingly bones. What I'd try first is giving your son a good multi vitamin with iron - He seems to respond well when given an iron supplement so maybe he just needs a little more - I wouldn't give him massive amounts - but he'll probably feel better if he knows he's taking some extra iron, even if its just a placebo effect (nothing wrong with a good placebo) - and watch his blood work to see what happens. I'd be concerned with instilling the idea in him that he has a chronic health problem if he doesn't - you want him to feel strong and healthy - like Popeye after he eats spinach -If he is otherwise healthy I wouldn't drive yourself or him crazy - assume the most benign explanation until proven wrong.

That said, it is something to keep an eye on and to keep trying to get a doctor to answer your questions - have you called the office? If not, do so and ask them your questions and ask them to have the doctor or someone call you back - or maybe you send an email? Take some time to compose your questions and think about any follow ups you might have given alternative responses - Is low retic something to be concerned about with or without anemia? What could be the cause? What are treatment options? Any harm in giving him a multivitamin or iron supplement - should I give him other nutritional supplements? Don't be intimidated and don't stop asking questions until you get an answer that you understand - if you don't understand a term - ask for an explanation - Keep asking WHY until you get answers that make sense - If you call the doctor I'd think the doctor would at least have a nurse get back to you with the answers.

Doctors can be intimidating - especially when your children are involved - just treat them like a normal person who doesn't know everything - you're a MOM after all - you do know everything

Sounds like you have a great kid and he has a great Mom! I think everything will be OK. Keep us posted.

Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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Old Tue May 31, 2016, 09:56 PM
Hopeful Hopeful is offline
Join Date: Jan 2009
Location: California, USA
Posts: 721
Hi Lindsay,

I am dealing with low iron on and off now because of a pancreas issue. When my iron is low, I will get this odd feeling in my legs when I am trying to sleep. It is really hard to describe. It is an uncomfortable feeling, not quite pain, but definitely not pleasant! You could say it is tingly - like my legs are starting to fall asleep. I later learned that it was "Restless Leg Syndrome", which is a symptom of low iron. Taking an iron supplement makes it go away for me. So if your son is feeling the tingling when he is sleeping or trying to go to sleep, it may in fact be a sign that his iron is low. I don't get the feeling when I am awake and moving around, only when I am sleeping or trying to sleep.

If your son has any GI issues (constipation, diarrhea, abdominal pain, trouble gaining weight, etc.), it may be wise to consult a GI doctor, as Marlene alluded to. The hematologist will have little insight if it is a GI problem that is causing iron deficiency. (At least that has been my experience, as medicine is so specialized these days.)

Also, when having the ferritin test done, be sure that your son is not taking any iron, multivitamins, or Vitamin C (including juices) for 3 days before the test. This will affect the results.

I have observed that kids in the 3rd and 4th grade seem to like doctors, tests, casts, etc. So PaulS makes a good point that you want to appear that there is no problem, just in case there really isn't.

One more data point...I rarely have reticulocyte counts done. Normally, I just get a CBC and if my HGB is normal or close to it, there is no further investigation.
53 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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