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.

Pictures of Payton and Presley

I wanted to post some pictures of my sweet girls, Payton (age 3) and Presley (age 18 months), so you can see who I am referring to all the time. Tricia will post one of Emma and Olivia soon too. It just makes it more personal. Enjoy! Robin

Famous people with family members with Down Syndrome

Sarah Palin (former governor Alaska) – son name Trig

 

 

John C. McGinley (actor, Dr Cox from Scrubs) – son named Max

 

 

 

Jamie Foxx (actor/comedian) – sister DeOndra

 

 

 

Dale Evans and Roy Rogers – only biological daughter Robin

 

 

Albert Pujols (St Louis Cardinals) - daughter named Isabella

 

 

 

Cathy McMorris Rogers (US Representative) – son named Cole

 

Pete Sessions (Congressman) – son named Alex

 

Gene Stallings (former Univ of Alabama coach) – son Johnny

 

 

 

Joe Diffie (country singer) – son named Tyler

 

(not pictured)

Straw therapy follow up

I recently emailed Talk Tools with several questions after beginning their straw therapy program. I reviewed this with my Speech therapist, and we concluded that if your child is proficient in straw drinking prior to initiating straw therapy, then you may try to begin with straw #4. If straw #4 is too difficult, then back down to straw #3. If they have not used straws before, then begin with straw #1. We will change to #4 this week and see how it goes. Here is the response I received: Thank you for your question! When beginning the straw drinking hierarchy, you can either begin at straw #1 or #4. You are correct in making sure the child is only putting 1/4 of the straw in their mouth, this way the child is using good lip rounding and the tongue is retracted. It sounds like you might want to try straw #4 with your daughter. If she only puts 1/4 of the straw in her mouth, then you will not need to cut the straw (straw #1 and 4 are the only ones you can cut). If she is putting more than 1/4 of the straw tip in her mouth then you will need to cut the straw to 1/4 inch above the first twist. By straw #4 the tongue must be completely retracted in the mouth and the jaw is stable. She will not be allowed to suckle on straw #5. If you see a forward and backward movement of the jaw - then she is still suckling. The criteria for success involves: 1. No liquid leakage or air leakage between the lips. 2. The jaw should be relatively still/stable, indicating jaw-tongue independent movement. 3. Lips should be slightly protruded. 4. The child is able to drink 4 ounces of liquid in 2 min or less. If you give your daughter straw #4 - you will know if it is too hard - she will be struggling to suck liquid up - then you will return to #3 until she meets criteria. I hope this helps and let me know if you have any further questions! Monica Purdy, M.A., CCC-SLP Speech and language Pathologist Oral Placment and Feeding Specialist