Long term symptoms but an answer maybe coming...

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jimmylegs
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Re: Long term symptoms but an answer maybe coming...

Post by jimmylegs »

recall there are close to 30 essential vitamins and minerals... lots of things that are vital to a baby's development and b12 doesn't have any supreme importance. nikki your interest in seeing a dietitian, getting an array of tests relevant for ms patients (and your baby too), and making some broad spectrum diet and hydration changes for your whole family is a VERY wise approach. if you're worried about your b12 status in spite of your good serum result, asking for serum holoTC won't do any harm :)

for some perspective, here is a basic search of academic literature on nutrition and infant development
http://scholar.google.ca/scholar?hl=en& ... 5&as_sdtp=
780,000 links returned, with the first studies in the list examining fatty acids, iron, zinc, and mom's general nutrient status.

if we focus on B12 and infant development in particular, google scholar returns 9980 results and the research focuses on problems in outright b12 deficiency.
http://scholar.google.ca/scholar?q=coba ... _sdt=0%2C5

by comparison if we look at iron and infant development, google scholar returns 300,000 results
http://scholar.google.ca/scholar?q=iron ... _sdt=0%2C5

the first study is interesting: Iron-deficiency anemia and infant development: Effects of extended oral iron therapy
http://www.sciencedirect.com/science/ar ... 7696700707
the author notes that oral iron therapy corrected the anemia but not the lower developmental scores. it's the problem of looking at nutrients in isolation - isolated iron therapy would impair zinc status, which is just as important for child development.

zinc and infant development results number in the upper 70,000s
http://scholar.google.ca/scholar?q=zinc ... _sdt=0%2C5

in this list of studies, iron and zinc are considered together, which is encouraging. for example:

Iron and zinc supplementation promote motor development and exploratory behavior among Bangladeshi infants
http://ajcn.nutrition.org/content/80/4/903.short

in that study working on iron and zinc together resulted in positive outcomes.

i'm glad that your husband is also interested in nutrition. maybe he won't stress you out as much if you're both all 'natural-calm-ed out', and working together towards a positive goal for your family :D
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NHE
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Re: Long term symptoms but an answer maybe coming...

Post by NHE »

nikkikl wrote: I do Vape nicotine at the lowest level, but I don't smoke, it's steam, it's my only vice.
It's a little more than just steam. e-cigarette smoke has been found to contain small particulates of toxic metals such as tin, nickle, lead, aluminum and chromium.

https://news.usc.edu/67718/e-cigarette- ... ic-metals/

http://www.plosone.org/article/info%3Ad ... ne.0057987

http://www.medicalnewstoday.com/articles/281762.php

http://www.kjrh.com/news/local-news/inv ... hale-metal
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Re: Long term symptoms but an answer maybe coming...

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Thanks for that tip lyndacarol. I haven't been able to give him any multivitamins like they started him on in the NICU as his tummy just couldn't tolerate it so I'll have a look on the internet for a good tummy friendly B12 plus anything that goes with it, that is suitable for a 7 month old... i.e. no gummies lol. And I'll watch the video. He's formula fed a hypoallergenic formula which has B12 and Folic but probably not enough and we're slowly introducing organic solids so I think adding in more vitamins is wise. The prebiotics and probiotics were vital too as a c-section baby but B12 has never been flagged up. Shame.
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Re: Long term symptoms but an answer maybe coming...

Post by nikkikl »

Cross posted with Jimmylegs and NHE there! Thanks for that info, everyone. I think the extra bloods/nuritionist/dietician is certainly the way forward, especially as I am super concerned about the about-to-wean baby (and my 16 year old for that matter) getting good nutrition and no nasties. I'm finding that a challenge with my 16 yo and my husband who would both live on prime rib from a restaurant if we could afford it! We all need nutritional advice, for very different reasons.

NHE - thanks for the input on e-cigs. I've researched it all extensively - which is not easy - and for every bad report, you can find more good reports and there is no doubt it is better than traditional cigarettes. I admit, research on it all is in its infant stages (and has been for years) but the arguments for and against are a minefield. There are many conspiracy theorists who claim the bad reports are bandied around by the tobacco companies themselves in an effort to keep customers. I don't have time to wade through that conspiracy stuff though. In the meantime, as giving up nicotine entirely is a freaking nightmare, I vape vegetable glycerol with natural flavouring only, no cartomizers (too close to traditional cigs) and the nicotine will eventually get cut back to zero. Well, that's the aim anyway... it's easier said than done. Having tried literally every kind of way to stop smoking, and failed, this is the only way I have weaned myself off traditional cigarettes. And I miss them, terribly. But I will never go back to them.
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jimmylegs
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Re: Long term symptoms but an answer maybe coming...

Post by jimmylegs »

one thing you can start with, is working on essential nutrient density in your diet. if you're not eating much, try eating the most valuable ingredients that you can, nutritionally.

a good starting point is to learn what the recommended daily amounts are for a first nutrient or two, and then make sure your kitchen is full of healthy nutrient dense ingredients, and recipes that use them. the great thing is that often once you've worked on one, you will have worked on others automatically. so it gets easier as you work through the list of essentials.

based on the bloodwork you already have and the typical concerns for moms and babies, you could start right away by having a look at essential fatty acids, iron and zinc. based on the stress levels in the house, may as well look at magnesium as well. the natural calm can do the trick, but best not to rely on it 100% so that you don't get sick of it (although you can use it to flavour other drinks to add some variety that way).

generally with fatty acids our ratio of omega 6s to omega 3s is too high, so the omega 3s need a boost. macronutrient tables are here:
http://www.hc-sc.gc.ca/fn-an/nutrition/ ... bl-eng.php
for omega 3s read the column "α-linolenic Acid (n-3)" which shows you aim for 1.1-1.6g per day.

vitamin tables: http://www.hc-sc.gc.ca/fn-an/nutrition/ ... bl-eng.php
mineral tables: http://www.hc-sc.gc.ca/fn-an/nutrition/ ... bl-eng.php

this web site is an excellent information resource as well. omega 3 food chart:
http://www.whfoods.com/genpage.php?tnam ... #foodchart
on the food charts, do pay attention to what it takes to get a serving, and how many units of the nutrient you're after are in one serving.
read the rest of the page too - the section on interactions with vitamin e is interesting

iron:
http://www.whfoods.com/genpage.php?tnam ... #foodchart
note that the serving size and amount of iron delivered is based on the spinach having been boiled 1 min and drained. for chard you boil 3 mins and drain. boiling and draining is important for reducing the oxalic acid content, particularly in the chard.
again, read the section on relationship with other nutrients. pretty interesting stuff.

magnesium:
http://www.whfoods.com/genpage.php?tnam ... #foodchart
with magnesium you see the repeat of spinach and chard at the top of the list. it's nice to kill two birds with one stone.

zinc:
http://www.whfoods.com/genpage.php?tnam ... #foodchart
they don't show oysters on their charts but they do include them as a rich source of zinc elsewhere on their site in a recipe for oyster and clam chowder.
http://www.whfoods.com/genpage.php?tname=recipe&dbid=32
i am still not brave enough to try oyster and clam chowder. i bought a can of each. maybe it can be my resolution for 2015 :S yikes lol

that's a lot of info but you can deal with it bit by bit and then continue on past what's here over time. you'll impress the nutritionist/dietitian when you get there, if you have started tracking things and making positive changes :)
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lyndacarol
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Re: Long term symptoms but an answer maybe coming...

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nikkikl wrote:Thanks for that tip lyndacarol. I haven't been able to give him any multivitamins like they started him on in the NICU as his tummy just couldn't tolerate it so I'll have a look on the internet for a good tummy friendly B12 plus anything that goes with it, that is suitable for a 7 month old... i.e. no gummies lol. And I'll watch the video. He's formula fed a hypoallergenic formula which has B12 and Folic but probably not enough and we're slowly introducing organic solids so I think adding in more vitamins is wise. The prebiotics and probiotics were vital too as a c-section baby but B12 has never been flagged up. Shame.
I suggest you discuss with your son's pediatrician first the idea of testing and determining your son's B12 level and certainly discuss with him the best kind of B12 supplement, if one is needed. Do not self-administer any supplement to your son without his pediatrician's knowledge and approval.

About your son's formula… Any supplement that has an excessive amount of folic acid, which is not balanced with B12, can mask a B12 deficiency. Also, B supplements (possibly even the amounts in his formula) can skew simple blood test results, and make them unreliable. Taking folic acid will not correct a B12 deficiency; taking folic acid will not stop neurological problems caused by B12 deficiency from developing. This is a further topic for discussion with the pediatrician.
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Re: Long term symptoms but an answer maybe coming...

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you can easily cross check your formula and any solids against the recommended amounts for folate, b12, iron, zinc, etc.
http://www.hc-sc.gc.ca/fn-an/nutrition/ ... bl-eng.php
http://www.hc-sc.gc.ca/fn-an/nutrition/ ... bl-eng.php

eg folate at least 80mcg/d for 7-12 months, 150mcg for age 1-3
or iron, 11mg/d for 7-12 mo, down to 7mg for age 1-3
or zinc, 3mg/d for 7mo to age 3

example formula
http://www.enfamil.ca/products/feeding- ... tramigen-a
folic acid .0108 mg or 10.8 mcg per 100ml serving of fluid.
iron 1.22 mg / 100ml
zinc .68 mg / 100ml

and so on. where does your little guy fit into this picture at the moment? "Once your baby reaches six months, he may want between 180ml and 220ml (6oz and 7 oz)at a feed. His total formula intake may be about 900ml (30oz) a day. When you start giving your baby solids, his daily intake of formula milk is likely to gradually decrease to about 720ml (24oz)."

pretty interesting results when you start multiplying these figures per 100ml formula serving times 9, and comparing to the recommended daily amounts. i went through the example formula above for folate, iron, zinc and copper. it's on track for the first two, and quite high for the second two. if i had to guess why i'd think it might have something to do with the target market for that specific product (milk allergy). interesting stuff!
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Re: Long term symptoms but an answer maybe coming...

Post by nikkikl »

It kinda fits him right now, although the solids is a process of course. He had major surgery when he was 5 weeks old on an incarcerated inguinal hernia and had an inch of intestines removed which had strangulated, which I think ultimately slowed down his eating development as it's taken months to increase his intake to 'normal' levels. He's on Alimentum Hypoallergenic right now, which is not necessary as he does not have any milk protein allergies (or any allergies) so I'm moving him onto another brand so we don't risk him becoming sensitive to milk protein due to lack of exposure when he hits 'real' milk in a few months. He was only ever on hypoallergenic to discount it as a cause for the reflux anyway. He's up to around 30oz per day of formula plus one solid meal early evening which I will be bumping to a lunchtime too.
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lyndacarol
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Re: Long term symptoms but an answer maybe coming...

Post by lyndacarol »

nikkikl wrote:It kinda fits him right now, although the solids is a process of course. He had major surgery when he was 5 weeks old on an incarcerated inguinal hernia and had an inch of intestines removed which had strangulated, which I think ultimately slowed down his eating development as it's taken months to increase his intake to 'normal' levels. He's on Alimentum Hypoallergenic right now, which is not necessary as he does not have any milk protein allergies (or any allergies) so I'm moving him onto another brand so we don't risk him becoming sensitive to milk protein due to lack of exposure when he hits 'real' milk in a few months. He was only ever on hypoallergenic to discount it as a cause for the reflux anyway. He's up to around 30oz per day of formula plus one solid meal early evening which I will be bumping to a lunchtime too.
The information you have posted here raises lots of questions for me. Your son had surgery when five weeks old – if he was given nitrous oxide as anesthesia, nitrous oxide inactivates the body's store of vitamin B12. If your vitamin B12 level was low while you were pregnant and while he was developing, he could have been born with the deficiency. This may account for the digestive tract disturbance which led to his surgery… And might contribute to his slowed eating development.

I urge you to watch the following:

Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12", a 50-minute documentary featuring Sally M. Pacholok, RN, BSN, & her husband Jeffrey J. Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist, Yale Medical School; Ralph Green, M.D., hematologist, UC Davis; Donald Jacobsen, PhD, Cleveland Clinic (Homocysteine Research Lab)




Especially Part 3 (@28:30) The Story of Lennon and His Family

Among Lennon's symptoms were muscle weakness, tics, repetitive movements, dysphasia (difficulty swallowing food), pale skin and lips.

There are myriad symptoms that can be caused by vitamin B12 deficiency, one of which can be digestive disturbances leading to surgery. I think it would be worthwhile to establish your son's vitamin B12 levels.
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Re: Long term symptoms but an answer maybe coming...

Post by nikkikl »

Thanks lyndacarol for that info, very useful and I'll be sure to watch the video. I assume he was on nitrous oxide at some point during his surgery, it was such a whirlwind, super urgent emergency surgery we really didn't get a thorough run-through on anything much. He did have to have a blood transfusion afterwards as they weren't happy with some aspect of his blood work but I can't remember what exactly the issue was.

As I was really struggling with my appetite when I was pregnant, I was taking the supplements religiously plus the B12 and folic acid along with any other multivit I was asked to take. My bloods were taken often and there were no grumbles about levels but again, they only had to match the norms, there were no deeper checks than usual.
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Re: Long term symptoms but an answer maybe coming...

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some potentially interesting tidbits re past present and future :)

Nutritional Interventions during Pregnancy for the Prevention or Treatment of Maternal Morbidity and Preterm Delivery: An Overview of Randomized Controlled Trials
http://jn.nutrition.org/content/133/5/1606S.short
This overview assesses the effectiveness of nutritional interventions to prevent or treat maternal morbidity, mortality and preterm delivery. Cochrane systematic reviews and other up-to-date systematic reviews and individual randomized controlled trials were sought. Searches were carried out up to July 2002. Iron and folate supplements reduce anemia and should be included in antenatal care programs. Calcium supplementation to women at high risk of hypertension during pregnancy or low calcium intake reduced the incidence of both preeclampsia and hypertension. Fish oil and vitamins E and C are promising for preventing preeclampsia and preterm delivery and need further testing. Vitamin A and β-carotene reduced maternal mortality in a large trial; ongoing trials should provide further evaluation. No specific nutrient supplementation was identified for reducing preterm delivery. Nutritional advice, magnesium, fish oil and zinc supplementation appear promising and should be tested alone or together in methodologically sound randomized controlled trials. Anema in pregnancy can be prevented and treated effectively. Considering the multifactorial etiology of the other conditions evaluated, it is unlikely that any specific nutrient on its own, blanket interventions or magic bullets will prevent or treat preeclampsia, hemorrhage, obstructed labor, infections, preterm delivery or death during pregnancy. The few promising interventions for specific outcomes should be tested or reconsidered when results of ongoing trials become available. Until then, women and their families should receive support to improve their diets as a general health rule, which is a basic human right.

The Eccentricities of Nourishing the Infant With Abdominal Anomalies
http://journals.lww.com/topicsinclinica ... ith.6.aspx
Recommendations for overcoming anatomical challenges
Any loss of the small bowel necessitates consideration of macro- and micronutrient absorption. All feedings, whether oral or via tube, promote physiologic responses that may enhance intestinal adaption.37 Controversy surrounds the choice of formulas for those with shortened bowel lengths such as SBS and ostomies. Some studies report the benefits of standard formula38 while others tout the benefits of hydrolyzed or elemental formulas.32,39 There are pros and cons to any formula choice, and all recommendations must be considered on an individual basis within the surgical context of the patient.

Short-bowel syndrome in children and adults
http://www.sciencedirect.com/science/ar ... 8597005477
Short-bowel syndrome is the malabsorptive state that follows extensive resection of the small intestine. Potential long-term survival without parenteral nutrition heavily depends on stimulation of the process of intestinal adaptation, through which the remaining small intestine gradually increases its absorptive capacity. This process is heavily nutrient dependent, and aggressive use of enteral nutrition is required to stimulate its completion. A combination of osmotic sensitivities, nutrient malabsorption, bowel dilatation and dysmotility, and changes in bacterial flora influence the symptoms and the management of this disorder. Chronic complications include parenteral nutrition-induced liver disease, nutrient deficiency states, and, frequently, small bowel bacterial overgrowth. Intestinal transplantation has been successfully developed in some centers in the United States, and preliminary experience suggest a long-term survival of 50%-75%, better in patients receiving an isolated intestinal transplant than a combined liver/bowel transplant. The ultimate role of intestinal transplantation is still undergoing evaluation.

Multiple Micronutrient Deficiencies in a Child With Short Bowel Syndrome and Normal Somatic Growth
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3253358/
Children with short bowel syndrome (SBS) are at risk for a variety of macro- and micronutrient deficiencies and other complications as a result of loss of small bowel surface area (1). The amount and location of small intestine loss in SBS will generally define the degree of nutrient malabsorption and the likelihood of micro-nutrient deficiencies. Duodenal resection, for example, can result in iron and folate deficiencies. Extensive jejunal resection can lead to malabsorption of carbohydrates, proteins, and calcium. The terminal ileum is the primary site of absorption of vitamin B12 and bile salts. Bile salt malabsorption can in turn present with steatorrhea and deficiencies of vitamins A, D, E, and K. Ileocolonic resection can predispose to several problems as a result of the loss of the ileocecal valve, resulting in loss of the ileal break, increased risk of anastomotic ulcers, and bacterial overgrowth.
The extent of nutrient malabsorption in SBS is generally assessed by history and physical examination, including assessment of growth parameters. Normal somatic growth generally implies adequate energy and macronutrient absorption. We describe a patient with SBS who developed severe iron-deficiency anemia and multiple micronutrient deficiencies despite normal growth, full oral intake, and limited ileal resection.
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Re: Long term symptoms but an answer maybe coming...

Post by jimmylegs »

hey there :) hope today's appointment goes/went well and that you are/were able to get all the test requisitions on your list!
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Re: Long term symptoms but an answer maybe coming...

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Hey Jimmylegs! First... you guys are such a mine of information! THANK YOU! Got a lot of reading to do!

Now.. the appointment. What a bust. I'm going to change doctors. He's a nice guy but frankly, he's not really giving a flying eff about anything. He wouldn't order any more blood tests as he said he's letting the neuro take the lead on what she wants to do. He looked at LAST YEAR'S blood tests from my annual physical and decided they were all fine and didn't need rechecking. Not even cholesterol... that was fine last year so no recheck. I just shook my head and didn't even bother any more. His demeanor made my mind up.

Kind peed off about it all really. :( BOOOOOOOOOO
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Re: Long term symptoms but an answer maybe coming...

Post by Youarethecure »

"you guys are such a mine of information!"

Aren't they !!!!? :smile:

I cant explain how much this website and its members (especially jimmylegs) helped me through this process and brought me to where I am now.

I agree that you should start seeing a new doctor.

Don't let it bother you though, you are on the right path and will find yourself where you should be no matter how you get there. Just keep absorbing and learning as much as you can for now.

best wishes,

Chris
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Re: Long term symptoms but an answer maybe coming...

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