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

Highlights of this week

Started Nutrivene D on Sunday

Monday, November 13th 2017:

Laksh has started hitting moving objects (his mobile) and stationary objects (his play mat) consistently and with purpose. Great start to the week despite the fact that I am back to work and missed seeing this the first time it happened. But thanks to my darling SIL, I at least was notified via text message right away and also got a video (which I don't know how to add to my blog yet and no time to figure it out as well)

                                    

Tuesday, November 14th 2017:

Day 1 of PT and my baby rocked it. After weeks of jumping through hoops and calling the case manager every other day we finally got his PT started. Could not take his pictures during exercises but this is him after, passed out in style. Also him complaining to daddy about how hard his day was in the evening.

        

Wednesday, November 15th 2017:

 Day 2 of PT and a visit from the social worker which was more or less the weirdest meeting I have ever had. The social worker was unable to find parking in the apartment so we had a counseling of sorts in her car, parked in someone's driveway. Again no pictures from therapy yet but added some pictures just for fun. We aren't doing anything special in therapy yet, just tummy time and range of motion exercises. I have ordered a therapy-ball for him which I want to use to help with some core strengthening exercises that I want to start for him on my own.

Some tummy time at home

Thursday, November 16th 2017:


My darling baby smiled in response to me and then smiled again and again. Best day of my life. Only regret is I did not capture it but will cherish it for the rest of my life. Note to self, go home from work today and take plenty of smiling pictures but in the meanwhile lets see the trying to hold my bottle and pacifier pictures.

                                                      

Good morning pic

Friday, November 17th 2017:

Gripping the hell out of this new toy mummy bought for him yesterday. I couldn't be more proud. Its daddy's day home with him today and seems like they are having an awesome boys day in.

Word of the day "Supplements"

Hello dear readers,

My baby has been the source of joy in my life but sometimes I still end up worried or scared about what his future is going to look like. When I am with him, he is just a baby, my baby. But when I am at work or looking at other peoples babies, I end up worrying about everything. I know I am a "worrier" by nature, always have been and probably always will be but I feel like the more I educate myself, the more I end up feeling lost.

Upon plenty of research, My husband and I have decided to start Laksh on Nutrivene-D and slowly add the entire regime of supplements. But the more I read, the more supplements I come across. Someone in our closed FB group for mom's put this pic up today morning and I found it hilarious. Starting TNI is overwhelming as hell and on top of it, I keep reading about food items that are a no no for babies with DS. What I want to know is, where can I find this list of things to-do and to not do? I want to give my son the best possible support but how do I know if he needs papaya powder or mango powder? How do I know if he needs ECGC or not? Lots of mothers who have been doing this for a while make it seem easy but I know it took them a while to get there and most of them are happy to help.

There is this wonderful mom in that FB group I was talking about earlier, let’s call her SB (not sure if I can mention her real name) who was kind enough to share her protocol with us. Just to give readers an idea if you are blissfully unaware of the sheer amount of hardwork or dedication I am talking about. This is what her day looks like;
 #myschedule
                                                 8am - Nutrivene D
                                                           Papaya Powder
                                                            Enzymes

                                                  Noon - Polyphenol Support Formula
                                                              Longvida Curcumin
                                                              Enzymes

                                                    4pm - Nutivene D
                                                                Papaya Powder
                                                                Enzymes

          8pm - Polyphenol Support Formula

Longvida Curcumin

              Nutrivene Nighttime Formula 

Melatonin
Blueberry Polyphenol
Lycopene
Setria Glutathione
DHA

And this is just her schedule. Some mom's use other supplements like green tea extracts, mango

powder, Resveratrol, Omega 3 fatty acids, etc.

I love that there are people like Dixie Lawrence and Dr.Elizabeth Hesse Sheehan who are tirelessly working to come up with these supplements and ways to help babies like mine. I know it is selfish of me to say it. but I wish it was a little easier. I wish we didn't need to use so many different supplements in trying to down regulate these over expressed genes. Here is a list of those genes.

SOD1

RCAN1

CBS

DyrK1a

ColVIa

APP

APOE

GART

MicroRNA 155

FoxP2

S100B

What happens if i don''t address the gene over-expression in T21?
People with unaddressed T21, in general have a predictable course of neurological and cellular degeneration.  Dixie Lawrence, Ds biochemist states:

"Because every single person with Ds has at a minimum the critical region of chromosome 21 in triplicate. This means all of our children have the same genes over expressed and are at the very same risk for associated illnesses and diseases including cognitive decline and Alzheimer's Disease. It is the rare Ds individual who survives mentally and physically intact to age 55 and beyond. It is so very rare that it makes the news. Ever read a news story touting the headline "Normal Man Survives to Age 75?" No? It is unlikely that you ever will because normal people, barring illness or accidents, usually live to 75 and older. It just isn't news worthy.

Studies show that by age 40, 100% of all untreated persons with Down Syndrome have Alzheimer's pathology. This means plaque formations are already developed in the brain, with or without full dementia. But, do not count on your untreated child functioning well until age forty. That is only an average. Plaque formation often develops in the first decade and by the early 20's many young adults experience serious decline associated with early onset Alzheimer's Disease."

 You may have a lot to lose, and everything to gain, in the targeted addressment of Down syndrome. Courtesy (http://www.oneextraordinaryjourney.com/trisomy-21-and-why-treat-it) 

Moral of the story is, we have received our order of NVD and are ready to get our feet wet. Laksh, Hubby, and I are on this journey together and I am sure that slowly we will be able to get a firm hold on this and soon will make it look like a piece of cake. Until then please send some good energy our way dear readers.

Today's thoughts are tomorrow's actions!

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 .