Friday, June 19, 2009

Bennett's Early Intervention Evaluation and Vitamin Therapy??

Today Bennett was evaluated for Early Intervention and yes, he automatically qualifies whether he's doing what he's supposed to or not so that's good! An occupational therapist evaluated him and said he had great leg tone and arm tone, he's tracking objects good, reflexes were good, he follows a voice and she said he's even starting to smile but he just needs a little better head control. He holds his head up fairly well when he's brought up to a sitting position but he still flops it forward some and she'd like to not see that as much.

She studied his hands and Mike mentioned to her that Bennett does not have the common Simian Crease that is often seen in individuals with Down syndrome. She was a little surprised and also said he didn't have many of the facial features that can be seen (I think it's hard to see them in newborns anyway, but whatever). She asked if we knew what type of DS he had and I told her that after the amnio we were told it was the standard Trisomy 21 so really there is no chance that it would be Mosaic, I don't think anyway. (Mosaic DS, for those of you that don't know, sometimes does not present with all the physical features of DS and some people don't even know they have it because sometimes delays are not as noticeable but all in all it's still DS).

We also discussed his feeding issues and she asked if he was spitting up and I said no and that I was surprised that he has not shown signs of reflux. She noticed him arching a lot and said he may have a little silent reflux and to keep an eye on it and suggested different positions to put him in while sleeping like sleeping on his side with a towel rolled up behind him- this position will also help with not developing a flat spot as well as less work for his heart if he's put on his right side. We would need to be watching him of course so this position is not good for night sleeping. She also showed me how to press on his chin while eating, rather than push up under it, which is what I was doing, to give him better jaw support while feeding and to help with it leaking out the sides of his mouth. Here he is sleeping peacefully on his side ( he was exhausted after she was done with him, poor little guy!)
So for now she recommended an OT to come out to work on his head control as well as his feeding issues. She felt he looked good and seemed to be doing very well for a 4 week old-not that they do much anyway but I will admit I was a bit nervous as she evaluated him, hoping he would do the things she was looking for. I can't imagine how it will be as he gets older and where he will be evaluated to see if he's meeting more difficult milestones.

She also mentioned that she has seen vitamin therapy to work wonders in the children she's worked with. I know this is a tad bit controversial- although I'm not sure why but we will at least look into it to see if it's right for us. If you have input on this, good and bad I would be interested to hear it!


  1. We looked into the vitamin thing too- it can be very expensive, and some of the companies make claims that are not backed up with research- in fact the research shows they do not make any difference. The DownsEd site (UK) has some good info on it. I would check it out for yourself, and wouldn't worry too much at this stage, there is no miracle cure, but a good multivitamin as he gets older, and fish oil are a good idea in my opinion.

    The Down Syndrome New Mama blog has a bit on that too about it.

    Bennett looks great, and sounds like he is doing really well. Take each day as it comes- he will meet his milestones, and some kids do really well. Luke is just starting to cruise along furniture at 17 months, and has the play skills of a 21 month old- like Bennett he has the benefit of older siblings, and this is way more valuable than any therapy or vitamins :)

  2. With Eian it's the same way. He has no Simian Crease and only a few features. really wit Eian I only see his DS when h's sleepy or sick if that makes sense. his is just plain old Down syndrome too. Eianstarted with OT 1st too he was very sensitive to touch in the 1st couple months.Later we added PT and ST. and now at 20 months old he's getting OT & ST ever week and PT every 3 months.

  3. Hey girly - both of my girls are on Nutrivene, so if you want to talk, email me. Also, *many times* you have to do more extensive testing to find fact I think if they tested more than the typical 2 cell lines in our kids, that we would find many more have mosaicism. It is hard to detect it in just the standard 2 cell lines ... most times they need to test more than that to find it.

  4. I am curious to see what others have to say about the vitamin therapy. The common brand is Nutrivene....I have been tempted to post something on our blog, but I've been told it is controversial subject as well, so just haven't posted anything....I'll be interested to see what you think after you do some research!

  5. This is something I'm interested in as well. The little bit that I've looked into has been pretty expensive. I was just recently reading about using Ginko with babies with DS. I'm still not completely comfortable with it. Even though I know nothing has been proven with the use of herbs and vitamins to improve cognition, I'm more concerned about making sure there was no harm associated with their use. It does seem like an awful lot of parents use fish oils. Anyone know why that is, and what is it supposed to accomplish?

  6. Oh my goodness! He is adorable! It makes me want to hold him and kiss that cute little face. We looked into the vitamin therapy for Morgan too and spoke to her pediatrician about it (he has a 20+ daughter with Ds and is our state's Down syndrome specialist). He said he understands why so many parents are anxious about the parents we want to do everything we can to help our children reach their full potential and if there is something out there that can give us this hope than we are all over it. He said he doesn't think it is harmful (like kidney or liver problems from vitamin toxicity) but he doesn't think there is any credibility to it either but just a big money maker for the creators of Nutrivene-D. He said when they did the studies they took a child out of foster care and gave her a loving home and vitamins. She improved drastically but was it the loving home or the vitamins? He thinks it is the loving home and that that is the best thing we can give our children...a loving home with unlimited possibilities. I decided to not do it for Morgan but I do know that if she was taking it that I would be giving the vitamins the credit for how well she is doing and not the true reason-- she is doing well just because she is. It's a different time (a better time) and generation for our children -- we have early intervention, mainstream schooling, more knowledge on the way most children with Ds learn how to read, speak and everything else. Bennett is going to amaze you! :)

  7. I'm so glad it went well. He's so cute all rolled over and sleeping!!! I loved looking at JEB when he was sleeping!!!

    I didn't do the vitamin therapy, but therapy was invaluable!! While it kept us hopping, it helped me work with him in the correct ways. The other thing I was wondering was about the "Your Baby Can Read" program they are advertising on tv so much. I wondered how well it would work with DS children. I'm sure it would be good for Harper and he might be ahead of the learning curve when he gets to be Harper's age. What do you think about that? Even though JEB is 9, I've thought about it for him since he's just learning all of that stuff now....wonder if it would help at all.

  8. He is just precious! I'm glad the evaluations went well!

  9. Check these links out about Nutritional Supplementation :)

  10. I often think about vitamin therapy and whether I should do it for Landon. I've researched it and of course hearing from parents who use it - they say it is wonderful. When I talked to my pediatrician about it, he mentioned the same as someone who posted above, that there is no reliable research to date. I spoke with another mom of a child with Ds who is a pharmacist. Her issue with the vitamin therapy is that vitamins are not regulated by the FDA, therefore there is no way to guarantee what kinds of contaminants could be in what you give your child. I think there are an equal number of proponents as opponents. Best you can do is just research and talk with your pediatrician and others to decide what is best for your son. We have decided not to use it at this point, but that doesn't mean I don't often think about and wonder, "what if?"

  11. I think Bethany's right about mosaicism. And I heard someone recently say that a diagnosis of Mosaic Ds can sometimes give the insurance companies excuses to try to not cover certain things. So better not to know sometimes.

    Bennett's just so adorable! Sounds like he's doing great!

  12. Bennet is adorable!!

    We use Nutrivene with my brother, Osiyyah. He's been on it since he was 8 months old and he is a little over 4 now. It has worked wonders for him. We know what he was like before it and wouldn't want him to be without it. It is not that expesive either.

    I have tons of information I could send you, so feel free to pop me an email - qf (remove spaces) and I'd be glad to send you a bunch of research/links, so you can look it up for yourself.

    Here's a couple other good links as well: (under supplements & drugs)



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