Iron deficiency follow up

See previous post labeled "Iron Deficiency" to read where we started this journey or click http://www.3of21.com/2012/12/iron-deficiency.html.  At our follow up, we needed to see how Presley's iron levels had responded to supplementation using Floradix.  Presley initially did extremely well taking the strong tasting Floradix in her almond butter, applesauce, and others meals, but the last two months she became tired of it.  I began placing it in her goat milk smoothie.  She will tolerate a lot of different things in her smoothie and thankfully this was no different.  The issue is that iron will not be absorbed as well when given with dairy.  At this point of her new found independence, I was just glad I was still able to get it down her.  I continued to add the liquid Vitamin C, which helps with iron absorption.  Presley also struggled with the constipation occasionally while using the Floradix, but the thermos cereal was helpful.   We also added an entire apple, without the peel, to her morning smoothies.

We ordered a follow up complete blood count (CBC), iron level (Fe), ferritin (amount of stored iron), and reticulocyte count (measures how rapidly immature cells are being made by the bone marrow).  Our initial iron level was down to 24 at 18 months old.  Children's hospital lab sheet shows normal levels at 30-60, but several medical sites raise the upper limits to around 120.  Presley's current iron level at 2 years old is now at 115, and her ferritin level is 16.2 (10-60 normal).  I was greatly concerned about the morphology of the red blood cells after the first blood draw.  Previously, there were many abnormalities such as target cells, smear cells, smudge cells, etc.., but this time it was labeled "normal morphology" and did not require a manual diff.  We will recheck in 3-6 months to see how levels stay without further iron supplementing.  We recently began EGCG (green tea extract), and this has properties to interfere with iron absorption.  Also, we never discontinued or modified the circumin she is on, since it is very important for her, but this also has iron chelating properties.  I feel like we have taken a step in the right direction for now, and God has smiled upon her again.  Many blessings, Robin

Iron Deficiency

It is not uncommon for a child with DS to have low iron levels. However, there are those that are elevated as well. Therefore it is not advised to give your child supplemental iron until you have lab work supporting a deficiency. Nutrivene does not add iron to their daily supplements, so it is safe until you obtain labs. Please check any supplements you may be giving your child. Presley had polycythemia at birth, too many red blood cells making her blood very thick. This can be dangerous, so they quickly took blood out through her umbilical cord to lower the levels. By 6 months, she had developed a mild anemia as evident by a low hemoglobin, the important part of the red blood cell that carries oxygen throughout the body. I monitored this since it was only mild and by 8-9 months, it had resolved on its own. However, our one year labs revealed she had a decreased iron level of 29, normal low is 30. You will obviously have iron deficiency long before you actually develop iron deficiency anemia. The iron stores and blood levels have to drop significantly before it affects the hemoglobin. This is another important reason why children with DS need more than the traditional lab work up at 1 year old. I mention all of the above to show how a child with DS can have varied labs, especially the first year, so do not take anything for granted. A good basic lab evaluation can be found at the nutrivene website under the Education Information section, then scroll down to "blood testing sheet" or ( http://www.nutrivene.com/educational_information.php  ) At 18 months, I requested to recheck her thyroid levels, cbc, and iron. While her CBC (red blood cells, hemoglobin, etc..) were still within the normal range, her iron level had dropped to 24. I was glad I requested the labs to be drawn, because we could begin supplementing with iron before it began to cause an actual anemia. Also, her white count was low and there were many abnormal cells with target cells, smudge cells, poikilocystosis, tear drop cells, and others. Individually, these can mean various issues, but collectively, they steered towards iron defeiciency anemia. Some of the blood cells were not being formed correctly or being released while they were still immature. I began using liquid vitamin C and Floradix, which is supposed to be gentle on the stomach and non constipating. Unfortunately, I found the latter not to be true. Presley has a history of constipation due to the low muscle tone since 2 months old. It had resolved when we began using the thermos cereal (http://nacd.org/health/thermos.php) as recommended by the nutritionist through NACD (National Association of Child Development). I ran out the week I began using the iron supplement and after one week, she was crying and not sleeping just as she had previously when she was unable to go. I had to use a glycerin suppository for the first time to "get things going" and we are beginning the thermos cereal again today. Fingers crossed things get back to normal. As for the Vitamin C, it increases the absorption of the iron and she doesn't seem to mind the taste. While reading, I was also reminded that the circumin has iron chelating properties. This isn't good news since circumin has so many benefits. My husband and I discussed it and decided to continue at the current dose of circumin and have the labs drawn in 8 weeks. Our genetic clinic has been so gracious to give us a standing order to repeat the labs when we feel necessary. If the labs do not show progress, we will discontinue the circumin and repeat labs again in the future. Having a child with Down Syndrome is a wonderful experience, but you need stay focused on enjoying the journey and not just the destination. It can be overwhelming at times, and just when you think you can switch to autopilot for awhile, you may run into some turbulence. Many blessings, Robin Tolliver

For more information about anemia and Floradix, check out these websites: http://dsdaytoday.blogspot.com/2011/03/anemia-causes-cures.html
https://sites.google.com/site/superdownsyndrome/medical-issues/iron-deficiency-anaemia
http://www.florahealth.com/product_categories.cfm?category_id=4&prod_id=87


This is some more information taken from the excellent book Super Baby Food by Ruth Yaron. Required daily intake of iron by age: birth to 6 months: 6mg; 6-12 months: 10mg; 12-36 months: 10mg; A cast iron skillet recommended. Allow sauces to simmer to increase the amount of iron absorbed. Stay away from processed foods such as white flour, ice cream, and soft drinks which contain additives (phosphates) that decrease iron absorption. Animal foods such as small amounts of meat, poultry, or fish should be given with meals containing iron rich foods to increase iron absorption. Victamin C great improves iron absorption so fresh orange juice with whole grain millet or brown rice ceral is a good combination. Get your iron from ferrous, not ferric, compounds as ferrous is more readily absorbed by the body. Unfortunately ferric is use by manufacturers because it has a longer shelf life than ferrous, so read your labels.

So these are the things I am doing to raise Presley's iron levels:

1.  Floradix oral iron supplement 7 - 10 mg daily
2.  Vitamin C 250 mg liquid with iron supplement
3.  Orange daily, attempt to give after iron supplement meal
4.  Cooking with cast iron skillet
5.  Adding more iron rich foods into her diet, to include thermos cereal, vegetables, and select meats
6.  Black strap molasses 1 tsp twice a day - super rich in nutrients and iron

Lastly, I will recheck her levels in 8 weeks after beginning the iron to see if levels are coming up.  I will also request an iron study which will include TIBC, Iron, reticulocyte count and Ferritin levels.