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I’m sorry. That is just so scary.
I spike my kids’ oatmeal with molasses for a big iron boost – I think it would up the calorie content, too. Could you add some pureed avocado to his fruit? It’s a nutritional powerhouse AND is high in fat and calories.
This is probably a stupid suggestion but have you googled this? There’s so much information out there if you can find your way to it.
Rebecca’s ideas sound good. I’m amazed your own doctor isn’t giving you calorie boosting suggestions or maybe he is and I’m just out of the loop.
I know you have a heart full of worry, Tammy. I continue to pray for you and for Parker.
Tammy,
It very well could be nutrition- Emma’s on a 99% pediasure diet and also has low hematocrit- she was on epogen shots for quite some time for it. Once I started adding steady iron supplements to her diet, it helped emensely.
I am unsure of the link between iron supplements and DS, I am sorry- I will look and see what I can find for you
-H
Hi, Tammy. I just ran across your website for the first time yesterday. I know what it feels like to be searching for answers!! I don’t know what I would do without prayer and the internet. I share some of my experiences on my website http://home.houston.rr.com/jfmsjm/Interventions.htm
Dr. Leichtman has a good article about nutritional interventions: http://www.lleichtman.org/tni.shtml. My son is on Nutrivene, plus we do regular blood draws. His low zinc at one time caused slow growth (developmentally and physically) and thyroid troubles. Increasing the zinc solved those issues. You can find a lot of info online about the problems of low zinc. Recently my son was anemic and had thyroid problems. You do want to be cautious about supplementing iron with DS, but if they really are anemic, you need to solve it. I tried treating his anemia naturally, but he really needed a supplement. His energy level went up, and his thyroid problems resolved after supplementing with iron. You can read more about it on my website if you want.
Dr. Leichtman describes which blood tests to do on his website. After my experience, I feel it is incredibly important to make sure the vitamin and mineral levels are high. Jordan needs his levels on the high side of the range, or he has problems as I described above. I need to get him in for another round of bloodwork, but I’m just cringing at the thought. He’s older now and it’s getting hard to restrain him. The poor kid is scared of bandaids because it makes him think he’s having a blood draw.
I’m praying for you. I don’t know about you, but I feel like a detective, and unfortunately I feel like my son is a guineau pig as I try to find the right things to do to help him. Oh, well, at least I have resources so I can try things out and sometimes find things that work!
Sharon
Hi Tammy! I hope things are looking better. There’s this site:
http://www.ds-health.com/faq.htm
At the end Dr. Len talks about iron and brain cell death link but it’s purely in the experimental stage, as far as I know? It relates to brain plaques and seniility later in life.
I don’t know if you saw my note online about pediasure and dismissed it or not. I was wondering what kind he uses?
You are constantly in my prayers.
*hugs* Kitty
I wish I had some ideas, or suggestions for you, but I know nothing of the hemotocrit values, I’m sorry! Sounds like you got some good advice here and on the Ds-listserv though. Keeping him in my prayers that you can get some answers to what is going on.
Hey Tammy, I hope Im not showing my ignorance for your sons medicalproblems, but It deffinatly sounds dietary. 16lbs for a 2 yo! wow. And I found out today that my DS is only in the 25th% for weight at 21mos. & being 23lbs.
OK so, What about Breastmilk??? You mentiond a 97% Pediasure diet w/ pureed fruits/oatmeal/cereal?? Well Breastmilk is WAY easier to digest than fruits & Far superior nutritionally than Pediasure. Are you still breastfeeding at all?? And if not, have you concidered relactating? Or getting donations??
Tammy,
I know you do not know me. I came across your blog through a friend’s. I have a son named Seth who is 9 years old now, but when he was born he had severe reflux. He had two surgeries within the first month of life. Even though he was a healthy 8lbs. 9oz. at birth, he was only 10lbs. 6oz. at 7 months. He was labeled failure to thrive and the doctor had him on pediasure which he was never able to digest. At 7 and a half months we almost lost him due to adhensions that had formed on his intestines. We finally got tired of the doctors lack of helping him gain weight and we prayfully consulted a whole food nutritionist from Tulsa who we did phone consultations with. He put Seth on Goat’s milk. Yes, real live goat’s milk. We found it from a lady who had a goat farm and she was extremely germ conscience and careful. He immediately started to gain weight. We also juiced a mixture of carrot, apple and celery twice a day to make up for the lack of vitamins in goat’s milk. We saw an instant change in our baby. He gained a lb. in less than two days. He would never drink more than 3 ounces of pediasure at a time, and when we gave him goat’s milk, he drank 8 oz. the very first time. I know that you can now order natural goat’s milk on the internet but it is extremely expensive. My son only had natural whole foods for the next two years and you would not believe the changes in him. I wish I could say we still eat that way, but at about 3 years old, Seth discoved pizza, and McDonalds, and other yummy unhealthy things. I do believe though that the Lord provided us with the perfect foods to heal my son’s body. I know our situations are different but I know there is real healing traits in the raw natural foods and juicing. If you have any questions, don’t hesitate to email. I am wierd, I promise. You can read anything on my blog and I never mention anything about this stuff, but God really placed it on my heart to write a comment to you. Thanks for reading.