6 months old

Half a year already?  Hard to believe.  What a huge difference life is now from when Natalie first arrived in January.  She has such a personality already.  I love to make her smile enough to see her tiny dimple.  We did an exercise in ‘what do I love about  my brother or sister’ a few weeks ago mostly to help Zach and Julia.  Zach said right away he loved how Natalie was so happy all the time.  Course, when they were watching her shots get fired in yesterday, he knew to hold his ears in preparation for the “I’m in pain cry.”

Saw the pediatrician on Monday and will see the geneticist tomorrow.  I came armed with all my research with my main goals being some sort of help for Natalie’s constipation and clearance for her to take Nutrivene-D.  For the constipation issue, the doctor doesn’t’ think it has a connection to dairy products because it would be more of the diarrhea variety rather than constipation.  I’m stilling limiting dairy just in case but not being so strict.  The doctor gave me a dosage for Miralax and said to try Prune juice daily for awhile. I mentioned that gotten a checklist from the National Down Syndrome Society for things to check in the first year.  It mentioned screening for Hirschsprung disease. I thought it would have been discovered at birth but the doctor said no and Natalie’s problems would fit that.  It’s when nerves don’t form at the end of the rectum making it difficult to feel when to go to the bathroom.  The surgeon would remove the portion of the intestines without nerves and sew it back together.  It requires a biopsy to tell for sure.  I’m supposed to ask the geneticist if that’s really something they need to check for tomorrow and then have her stomach surgeon do the biopsy.  The pediatrician said if she does improve using the Miralax and prune juice, it’s a good sign she doesn’t have Hirschsprung disease.  I gave her Miralax when we got home yesterday and she went in about 10 minutes so I’m hopeful.  I’m also continuing to take flaxseed oil in hopes that it will help her as well.

For the Nutritional Intervention, I explained I’d read that the extra chromosome causes and overabundance of the SOD gene. Too much SOD causes there to be too much hydrogen peroxide in the body, which, in turn, damages cells (just like it damages bacteria cells when you pour some on a cut). The most susceptible to H₂O₂ damage seem to be brain cells.  At first, the doctor was hesitant but when I showed her the research and the ingredients, she said she didn’t see anything in it that would hurt Natalie.  The doctor did suggest I bring it up with the geneticist too.

As for normal baby stuff, she grew a lot from her 4 month checkup.  She’s now 14 lbs 4 oz (20% on the normal development chart!) and 24 3/4” (20% on the normal development chart).  I’ve been told it’s good to even make the chart so 20% is great.  So, looks like her thyroid is functioning since she’s growing well.  The doctor said the smiling and alertness is a good sign the thyroid is fine too.  We are supposed to get it tested at 6 months so will probably do that at the geneticist office Wednesday.  Low thyroid during developmental years can lead to mental retardation and since Down’s kids can often have low thyroid, it’s very important to keep a close eye on it.  Oh, yeah- and she can grab her toes now!  :)

Starting Nutritional Research

So, I’m gathering lots of information lately on nutritional supplements.  Natalie has her 6 month checkups with the pediatrician and the geneticist next week so I’m hoping to ask a lot of questions.  I found a group called the Trisomy 21 Research Foundation that recommend the following supplements for Trisomy 21 patients:

1.NutriVene-D: to deal with the metabolic errors that occur in Down syndrome and does help decrease the incidence of infection and improve growth; secondarily, it helps improve muscle tone and the level of alertness

2. Vitamin D

3. DHA/EPA: Low DHA levels are associated with behavior problems in children. Specific behavioral (Attention Deficit Hyperactivity Disorder or ADHD) and learning problems have been shown to correlate significantly with low DHA levels.  DHA is correlated with improved mental and visual function in infants. Studies show that children who were breast-fed perform better on cognitive function tests later in life (by 5-9 IQ points) than those who were formula-fed

4. Ginkgo Biloba – to combat the overabundance of GABA, the neurotransmitter that tells the brain to stop

5. Longvida Circumin:  containing the natural antioxidant curcumin ; Longvida may significantly support cognition, memory, and general health

6. Probiotics- I’m assuming for Digestion- still researching

7. Piracetam (by prescription)- enhances cognition under conditions of hypoxia (lack of oxygen), enhances memory and some kinds of learning in non-disabled persons, makes oxidative stress less severe, returns fluidity to brain membranes that have undergone hardening from lipid peroxidation and allows for increased communication between the hemispheres of the brain

So, that’s what I’m starting with.  I was currently taking DHA and Ginkgo Biloba myself in hopes that she’ll get a little bit of it through my milk.  Ginkgo B does have some warnings about febrile seizures in children under 3 so I’ve quit taking that for now.  Hope to ask the doctors at least about the Nutrivene-D.  It is specifically formulated for Down’s Syndrome and seems a good place to start.

Also, the constipation pain is still on-going for Natalie.  Last Saturday was her most recent screaming session.  It was horrible.  30 minutes inconsolable crying until she got so worn out she fell asleep.   I had quiet a bit of milk products for David’s birthday dinner and thought I could just dump the milk that night.  After that night, I’ve stopped eating all dairy and am watching ingredients in packaged foods as well.  I just keep seeing her little face in pain when I look at cheese and it’s kept me faithful.  No dairy seemed to be helping but as of today, it’s been since Monday that she was able to go last.  I did read that Serotonin can be low in Down’s Syndrome patients.  Serotonin produces peristalisis (rhythmic squeezing that moves food through the gut- sorry so graphic!).  So, I  started researching natural sources of serotonin.  Apparently, tryptophan has something to do with the body’s production of serotonin.  Turkey is  number one on the list!  We found a great turkey roast crockpot recipe this week.  Other items include:  tuna, salmon, cheese and bananas, walnuts, sunflower seeds, pumpkin seeds, flaxseed, flaxseed oil.  So, I’m trying to eat some of these foods too in the hope that it will help her.  A friend of my mother also recommended flaxseed oil so might go try and find that next.  We tried talking to the pediatricians’ nurse on call last night to see if we could give her Miralax before the pain started.  They told us no, we’d have to see the doctor first.  Will see how tomorrow goes and then call back again.

The broken AC is now running great so hopefuly I’m off to a good night’s sleep!

Amy

On my love of cheese

Cheese is on the top of the list of my favorite foods.  Last Wednesday, I gave up dairy products to see if it would help Natalie.  I’m not being rigid about it and searching for hidden dairy content yet but have quit all milk, yogurt, cheese, ice cream, cottage cheese- basically all obvious dairy foods.  Sunday, the 26th, Natalie had a 20 minute screaming session where she woke up from a nap inconsolable.  She was in obvious pain.  We eventually were able to help her poop with a suppository and then a bath finally helped her calm down more.  I’d  been wondering about dairy but since her only symptoms have been constipation and foul gas, I wasn’t sure if I needed to.  After that episode, though, I was willing to try anything.  For the last 2 months, she has only been able to poop 2 times a week at the most.  I stopped dairy Wednesday, June 29th, and she went Friday, Saturday and Monday all on her own!  Tomorrow is David’s birthday and he has requested a cream sauce pasta for the main course and ice cream cake for dessert.  I might just pump and dump since it’s his birthday but it does make me realize, we might need to change eating habits for the long term.  Though it’s not a choice I would make for myself, I’m ecstatic that it might be helping Natalie.


In my internet search for something to help Natalie’s constipation, I stumbled upon a web site called Einstein Syndrome.  It’s a site started by a mother of a 17 year old Down’s Syndrome daughter.  It has a TON of information.  For the little bit of time I’ve been able to search her articles, it seems she and many others have used the site to collect information of different therapies over the years.  The premise of the name ‘Einstein Syndrome’ comes from an article of the same name written by the web site developer, Miriam Kauk.  She states that “I am convinced that the biggest handicap Down syndrome children have is the low expectations of their parents.”   There’s so much to look at but, right now, I’m most interested in something called Targeted Nutritional Intervention.  It seems to say that Natalie’s extra chromosome causes several chemical processes to go haywire.   Different vitamins, enzymes, and antioxidants can help improve growth, and even keep brain cells from dying.  I’m hoping to have a list of questions ready to ask our pediatrician and geneticist at our appointments next week.  When I first found this information, I was upset that my lack of time to research the information was shortening my daughter’s life.  I’m constantly reminded that I AM NOT THAT POWERFUL (Mary Ann Nelson- you probably never knew how that advice you gave me about a problem Julia had many years ago, would help me so many years later)!  God is the author of all Natalie’s days and is in control of her life.

I just finished filling a shadow box that a friend gave me for Natalie’s baptism.  I decided to make a quilling picture defining what her name means.  I’d looked it up before but I think this version is so much more in depth.  We thought ‘Natalie’ meant ‘born on Christmas Day.’  This week I found it meant ‘birth’ or ‘birthday'.  I also looked up the Webster version of ‘Grace.’  On her picture I put….

Natalie Grace

a birth of blessing,

favor, elegance, & beauty

I’m praying that every day for her…..

Amy