Saturday, May 7, 2011

Doing Something, a Little Bit, or Nothing?

Recently there was some discussion on the Einstein-Syndrome list in regards to what can be done for babies with DS.

Some people may say giving certain supplements at a young age is a little too much, some may give just a few things to their child and as they get older give more. But, there are others who want to do as much as possible and give their child everything they can, that is safe, to give their child the best chance.

We ride the fence in between the two. So long as we are well researched in what we are giving O, we will give it to him at any age. If we are uncertain in it, then we will wait or start at a low dose.

There's neither a right nor wrong. Personally, I think it is best for some supplements to be started at as early of an age as possible, while there are other supplements, that I feel will be fine to be started at a slightly later date. When I say later, I mean 12 months old or so. In "early age", I'm talking about 1 month old or less.

With that said, there was one mother from Finland, Tuija P. who shared her experiences and I thought it was interesting. With Tuija's permission, I'm posting it up here. Tuija has had the "advantage" of seeing people with DS in several generations, as she will describe.

I see around me here people with DS in three generations. My own sister, now 33, her boyfriend, just turned 60 and then our little precious daughter "S," 17mos.

The 60-year-old man is very sweet natured, but has never spoken understandably nor had any other means of communicating. He has been living in a group home until recently, as he had to move to a more guarded facility because he has developed Alzheimers and started wandering outside during the night. Fortunately he hasn't had any other DS related complications.

My sister. When she was born, it was very uncommon to take such a baby home. My sister was fortunate in that sense. She had no nutritional treatments, a little therapy of some kind, went to kindergarten with typical kids and then to special school, where she didn't learn much, barely to read and write. She has been an easy child and adult as well. She learned to speak just understandably before school age. She has never been very high functioning academically. She had leukemia when she was 10 to 12, but survived that. From then on she has been considerably overweight. No one has really paid attention to that. She is living in a group home, the same as where her boyfriend was living, is happy there and has learned many new things during her adulthood. Nowadays she is very skilled at quilt making, for example.

She has always been a very typical such DS person, who hasn't had any special treatments or targeted intervention in any way. Just so much mental delay that it has not been possible to have any real relationships with typical people. And she has never been capable of taking care of herself very much.

After those experiences my situation wasn't the easiest one to have a child with DS. Ok, things could have been worse, but I didn't know any worse.

Ok, with that as an intro, here we are anyway with our sweet little girl "S." I got to know about DS while still pregnant and when I finally accepted the idea of having a child with DS, I knew nothing would stop me from doing everything I can to make life as good for her as I can. From then on we have been on TNI. We started prenatally.

I don't know life without "S" on TNI, I could only guess. "S" was born with a severe heart condition which required two open heart surgeries when she was 5 and 6 months old. But even before the surgeries "S" didn't suffer very much from her heart condition. She was an alert and active baby, started moving around the age of 3mos.
I stopped supplements during the stay in the hospital, both because of the surgeries and for my own ease of mind as I don't have any medical professionals here who support TNI. She recovered well and in the hospital she was undoubtedly the happiest baby there.  The hospital stay didn't seem to affect her development.
She has done well in all areas, though she has the typical delays and difficulties as well. She has been very healthy, no ear infections or many flus. She continues to be very active, playing with others and by herself, wanting to be held and hugged, laughing a lot, talking a lot, trying to say words occasionally. She is more of baby than our other kids in that age, but a very normally behaving baby so far.

I'm not saying TNI has definetely had an influence on her, but at least it is not doing anything bad. "S" is now on Nutrivene-D, probiotics, DHA, Longvida curcumin, acethyl-L-carnitine, CoQ10, cognizin citicholine, & gingko biloba. The last four we just recently started.
From my experience so far, "S" hasn't had any side effects and has been doing all together so well that I'm not going to stop giving any of those. I don't think I would have started gingko or those other three any earlier though. I haven't seen any leaps in development nor any regression either, just steady development. I haven't been doing as much research as many of you though.  I'm just reading your experiences and trying to think something in between. Some could say I am experimenting with my child, but honestly this is the only way I can do it.



Qadoshyah said...

Comment left from Liora P.:


DS is a neurodegenerative disease. The damage occurs very slowly and over the course of years and years. The earlier that substances can be given to offset the negative effects of the extra chromosome the better! Some effects are Oxidation (give antioxidants like Nutrivene-D, other antioxidants like Longvida Curcumin), altered brain neurotransmitters (give Ginkgo Biloba, which turns down GABA- people with DS have waaay too much GABA) and altered SamE and Methylation pathways (give TMG and other methyl donors) and more. See for more info about all these pathways!!

Related Posts with Thumbnails