To supplement or to not supplement

Hello readers,

As you may know, we started Laksh on a small dose of nutrivene a couple of weeks ago after contemplating for a while. I researched a lot about nurtivene and also spoke to my baby's pediatrician and nutritionist who both said it is safe but because he has had two abdominal surgeries to be a bit cautious. I understand that this is not a "magic cure" for over-expression of the genes and that there is no such thing as curing DS. But what my thought process has been so far is, as long as it does not harm him and may have a beneficial effect, what is the harm in trying?

 All through pregnancy, we are told over and over again to take our pre natal vitamins even if we are eating a varied and healthy diet. So why is it different for our babies? Laksh has beem on a multi vitamin since being discharged from the NICU as he was a premie (and would have been the same for a typical baby as well). Once the first bottle was over, we only changed the daily multi vitamins to nutrivene.  My Laksh will be 4 months in 4 days and he is on 1/8 tsp of nutrivene (https://www.nutrivene.com/view_item.php?id=43)  and 0.5 ml of baby DHA by Nordic Naturals( https://www.iherb.com/pr/Nordic-Naturals-Baby-s-DHA-with-Vitamin-D3-2-fl-oz-60-ml/23058). 

So far I am not going all crazy on supplements and had planned to take it really slow but a concerned mother pointed out some not so good reviews about supplementation which re started this debate in my mind. Here are some articles and sites that talk in favor or not in favor of it. Most mothers have made up their mind but being a new mom I am still on the fence about it. I just don't want to wake up 5 years from now and wonder if there was something else I could have done to give my baby a little something extra. I am somehow not okay with saying, this is how it is suppose to be and just sit on the side. I want to be able to take charge and help my boy as much as I can so I feel like I am not letting him down. I am doing everything I can as a PT. I have him enrolled in EIP and fighting to get more visits, talking to his doctors about enrolling him in swimming, etc  but as a mother, I am still learning. As a mother, I still need guidance and as a mother with a baby with needs that I don't fully understand yet (at a bio chemical level), I need all the help that I can. So dear readers, please take some time to help this mumma out.




Articles leaning towards supplementation:

http://www.oneextraordinaryjourney.com/tni-start-here

http://donnachi.com/wp-content/uploads/2012/01/Glyconutrients-and-potential-benefits.pdf


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4227691/



Articles leaning against supplementation:


https://junkfoodscience.blogspot.com/2008/03/selling-hope-can-48-special-supplements.html?m=1


https://nobsaboutds.wordpress.com/2017/05/16/ask-the-expert-dr-brian-skotko/



These are just some links but there are many more. I just wanted to get an idea as to which side people are leaning more towards. Please leave your thoughts as comments. Would love to hear from others in the same boat or people with more experience in either direction. Thank you and be kind.

Pic added just for cuteness

21 things I am grateful for this Thanksgiving

In this busy life, it is easy to forget what things we have going for us and keep focusing on things that are not. For instance, focusing on not getting the promotion you were gunning for and forgetting to be grateful for having a job. Getting upset over not being able to get that branded bag but forgetting to be grateful for the other bags you already have. Crying over baby having diagnosed with down syndrome at birth instead of being grateful for this tiny miracle you created.(see what I did there 👶❤)

I know this blog is not completely from Laksh's point of view or even fully about him like it usually is, but I needed to put this in writing for him to see when he grows up. It being thanksgiving weekend, I decided to come up with reasons 21 that I am thankful/grateful for this life that God gave us. (21 has become my most favorite number recently, oh & also, it is my birth date)

1. We have Laksh and he has us
2. We have a roof over our heads
3. We have food in our bellies
4. We have love in our house
5. We have people that care about us
6. Laksh has both sets of grand parents
7. Laksh has two older sisters (cousins but closer than the real deal), aunts and uncles
8. Laksh has a fur brother
9. We are healthy
10. We have an amazing online DS community, our extended family
11. We have jobs so we can provide for our baby
12. We have access to great medical care
13. We became parents
14. We saw his first smile
15. We heard his first cry
16. We celebrated his first Rakhsha Bandhan
17. We celebrated his first Diwali
18. We celebrated his first Bhai Dhuj
19. We celebrated his first Halloween 
20. We celebrated his first thanksgving
21. And last but not least, we will have the rest of our lives to see his many firsts and seconds and more.

Never forget to be kind to others as kindness is all that matters. Happy Thanksgiving from our family to yours.

Early Intervention Evaluation and Nutrivene-D

So we had our early intervention evaluation last Thursday. As many of you know by now, my son was diagnosed with down syndrome in the delivery room. Since then, I have been on a roller coaster of emotions. After the first few weeks of waiting and hoping for all this to go away (the diagnosis of T21, Hirschsprung and the NICU stay) I finally came on board and started thinking now what? What can I do to make sure my baby boy has all the resources he needs to succeed in life, something we would have done irrespective of the diagnosis. I started to research (basically google the sh*t out of things) when I would be in the NICU by his side but not able to hold him because of all the machines he was hooked on to. My google searches changed from, "What looks like down syndrome but isn't?" to "How to help baby with down syndrome achieve milestones sooner?". I came across early intervention (being a PT I had no idea about this) and TNI (Targeted Nutritional Intervention). 

Early Intervention is a federal program for infants and toddlers under three years of age who may not be making progress like other children because of a developmental delay or disability. My son automatically qualifies for this because of his diagnosis but we still had to jump through hoops to get him enrolled. I appreciate how the government has come up with this to help babies like mine but what I don't appreciate is the sheer amount of time it takes. Laksh was in the NICU for the first two months so that got his early intervention delayed in the first place. The day he got discharged we set up a meeting with our coordinator to get all the paper work signed up and start the process. 3 weeks after we did all that our evaluation happened.Now we have to wait again for the report to come in the mail and then they will set up a meeting to decide how often and what all therapies he would need. Once that is done, we would have to wait again to find a therapist who would be ready to come in to see him. So, another month of waiting before he would actually start any therapy. I feel like we are wasting crucial time and need to start something soon. This lead me to NUTRIVENE.

TNI (Targeted Nutritional Intervention), is a protocol of mega-dosages of vitamins and natural products that the marketing promises helps overcome the effects of Down syndrome by using the logic of balancing out the over-expression of the 21st Chromosome. Dixie Lawrence, a biochemist and team member for Trisomy 21 Research, developed TNI 24 years ago using a method to down regulate (kind of like turning off) over expressed genes. I have read lots of stories about how children who are on this regime show signs of improvement sometimes as early as a couple days after starting it. I am almost sold on this and have placed an order for the daily supplements (back order for now due to the increase demand). I understand that is the best place to start and then gradually add other supplements.

This is part of what Dixie Lawrence has shared on a closed FB group, "By carefully selecting nutrients that naturally inhibit certain genes and giving them in the exact order, exact synergy and exact amount, excess genes can be stopped from producing excess proteins. Everything we have done is supported by research. The results are more than impressive. In many cases, they are miraculous. For instance, babies who begin the protocol early and who's parents are diligent in giving it correctly, walk right on time - not at 3 to 5 years. These kids are smart and capable, they integrate into the school systems without so much as the blink of an eye. They grow up verbal - often multilingual, get honest to goodness real diplomas, go to college, drive cars, get married, move away and make you wonder where those baby years have gone.
Your child deserves this chance in life. So do mine. I have a daughter and a granddaughter both with DS. Both are beautiful, intelligent girls. My daughter graduated in the top 5% of her regular high school (not special ed) and went on to work as a teacher's aid for deaf students (she herself, is deaf) and then to become a Certified Life Guard. My granddaughter is only 12 and she is an excellent student, fully integrated into all regular classrooms. Her communication skills are normal. Her grades are terrific. And these two represent only a few success stories of kids who receive the appropriate treatment."

Just a helpful link:
http://trisomy21research.org/

There are some other therapies that I have read about but no idea how it works.This is a link on the NDSS website that talks about these alternative therapies, http://www.ndss.org/Resources/Therapies-Development/Alternative-Therapies/.

This is also a great website to look at http://www.dsdiagnosisnetwork.org/  created by Jen Jacob. I found this very useful.


                                                                

Laksh looking overwhelmed by all the information in this blog. Sorry about that dear readers. Tried to be as concise as possible. Let me know if there is something you want me to talk about in particular. Will definitely update about how Laksh reacts to Nutrivene-D once we receive it .

Is it down syndrome or he is just being a baby?

Laksh is almost 3 months old. As I have mentioned before, we are waiting for his EIP to start and in the meanwhile we have follow ups with his GI surgeon, cardiology, ENT and regular pediatrician to keep us busy. This being my first baby, I find myself tempted to google what a three month old baby can do and then compare it and see what our baby is doing but then I stop myself. I know that is a rabbit hole, and if I fall into it, I am only going to fall deeper and deeper. 

Sometimes when I look at Laksh I wonder, is he looking too dazed or is he just being a baby? Is it his down syndrome that is making him not interested in smiling often or is he just being a baby? Every time he doesn't eat his entire meal, I worry if it is something to do with his abdominal surgery or he is just being a baby? Every time he doesn't respond to my voice I wonder, is it his down syndrome or is he just being a baby?

    

Every time he is awake, I wonder should I keep talking to him so he can learn more or is it okay to be content in just hanging out with him once in a while? Every time he is on the boppy I feel should I give him something to play with so he is working on his fine motor skills or is it okay be content in just hanging out with him once in a while? Whenever I lay him down to change his diaper, do I need to keep his brain stimulated by playing Mozart lullabies or is it okay be content in just hanging out with him once in a while?

I accept that there have been days where I forget he has down syndrome or that it is just a small part of who is that it does not even matter but then there are days where it seems so prominent in everything he does. When people talk about how tall he would be because his parents are tall, I wonder would that still be true as down syndrome tends to affect overall growth? When people say how smart he would be as his parents are highly educated, I wonder would that still be true as down syndrome tends to affect overall cognition? With so many thoughts running in my mind that unfortunately I forget to get amazed by this tiny miracle that God helped us create. Now a days, whenever my mind starts to wander, I remind myself to not put any limitations on him and believe in him. He can achieve whatever he sets his mind to because he is amazing and no such thing as an extra chromosome can stop him. If anything this extra chromosome is what is going to help him be him.