12 Feb 19
Chunky Thighs & FPIES

It’s been an icy, snowy, more than a little bit stir crazy week here in Minneapolis. We’ve had a whole lot of homebound days, which has led to reorganization, purging, cleaning, and prep for baby #2. One of the projects I’ve enjoyed the most has been creating two Lincoln safe food spaces- a fridge shelf […]

08 Feb 19
Roselyn Ruth

Rosie has been going through some sort of speech regression. She went from using multiple words to using none. Hopefully, its something that passes soon. Her appetite is finally starting to increase now that shes on solid foods. We’re having an issue with her taking enough formula during the day.. after spending hundreds of dollars […]

06 Feb 19
A Mum Who Writes

And the word of the day is.. 30 January 2019 When my twin boys were babies I was convinced they were suffering from a different life threatening illness every week. I don’t think I was alone in this. And I remember people always talking about a mother’s instinct, and how you should always listen to […]

03 Feb 19
Headline Spews

As we embarked on our journey on the Milk Ladder this week, it was a time to reflect on the journey we’ve had with Albie to date. In the early days, we had a baby who was clearly uncomfortable at what should have been one of his happier times of the day. Feeding was heart-breaking, […]

02 Feb 19
IWIK Mummy Blog

Having a baby with CMPA and Reflux, I’ve learned that there isn’t going to be the perfect solution that will finally work. There will be products that I can say she gets on better with but no doubt there will still be some other issues that will arise. Isabella’s two main products that she is […]

27 Jan 19
The Mom Adventure

Oh my gosh, what a fun month. There are so many changes in month three! They follow you with your eyes, they laugh, they coo like crazy. They drool and blow bubbles and they sleep so much more! Harrison has always been a fun baby, but this month was totally different. Not only did he […]

17 Jan 19
'Baby-tism' of Fire

As we all know because we’ve discussed this before, once you become a big you gain a new found fascination for poop. It’s frequency, velocity, general colour, smell and gross/impressive nature of the teeny wee human turd sharing. The teeny wee human started life on cow and gate stage 1 milk: and we live by […]

15 Jan 19
Chunky Thighs & FPIES

This week I’m answering some of the questions I got on our instagram account (go follow us on instagram right now! @chunkythighsandfpies … I’ll wait…) Thank you for your participation and input! This blog is evolving as our journey with FPIES continues, and I want it to be supportive to families who are going through […]

08 Jan 19
Chunky Thighs & FPIES

First of all, thank you so much for stopping by! To never miss a post, click on FOLLOW to sign up for email notifications from Word Press, and follow along on Instagram for additional FPIES content and updates! @chunkythighsandfpies   Within moments of Lincoln Mac’s birth, midwives and nurses were encouraging me to have him […]

08 Jan 19
IWIK Mummy Blog

The reasons why I can’t look back on antenatal classes and say they were great and really informative is because the first 8 weeks of my babies’ life. She had problems that I never even knew could happen. Colic for example; I had heard about but didn’t really know what it was, it certainly wasn’t […]

04 Jan 19

family denied prescription food for their baby in Edmonton I am always surprised by our government’s failure to help out our children.Here is another weird story that is a stunning example of our government’s lack of priorities and sensitivity with reference to our children.This time the story is not the underfunding of education but the failure to provide supports to a family with a medically fragile infant.This child is special needs and yet the family gets no help at all. When will the child get help?I guess when we all make enough of a fuss.It seems we all have to make a fuss to make sure that money is available for our children because heck, the government sure isn’t going to go ask the oil companies for an increased payment in terms of an increase in the oil royalty rate.Nope.Best to just let the suckers oh sorry —- citizens and their children— suffer. So let me simplify the story for you all so that you can go make a fuss about this case.And when you go write to the MLAs ask for more education funding at the same time because we have to beg for more money there as well. So here’s the story.A family has a child. The child had a condition that requires a specific sort of formula.The formula cannot be covered by Blue Cross and our government will not cover it.They say it is food and so it can’t be covered.Only problem is the kid is sick and needs this special food or he dies.So in my book that is medically necessary treatment = should be funded by health care.But the family is getting the run around because our government is like that.They won’t tell families that they will help.They make it a big maze so that we are utterly exhausted and give up and do the work ourselves (as we know the government won’t do the work they are supposed to do).But in this case, if citizens yap about it –they might be forced to work on behalf of this family and the poor baby.This is not a sure thing as the government prefers to waste money on oil industry related matters or bashing the doctors—they will pay $ 130,000 for advertisements that they could have simply not run and yet not pay for essential prescribed medical treatment for a baby. Sigh.I guess this is what we voted for.Activism just to keep babies alive.Here is the story. ParanteauPremier Alison RedfordOctober 1 at 8:05pm · · EDMONTON – An Edmonton couple says they may be forced to sell their home to pay for a special formula they must feed their allergy-afflicted infant because the product was rejected for drug coverage.In the eight weeks since his birth, Isaac Caskenette has been hospitalized twice and undergone abdominal surgery after his parents Lisa and Ira found blood in his stool.He was diagnosed with necrotizing enterocolitis (NEC) and a cow’s milk protein allergy.Doctors at the Stollery Children’s Hospital prescribed Neocate, a hypoallergenic, amino-acid based formula designed for babies with cow’s milk allergies who cannot digest milk or soy-based formula.“The social worker sat down with me and said there is a down side to this: it is very expensive,” Lisa said Sunday.Neocate, available by special order through select pharmacies, costs about $262 for a case of four 100-gram cans of powder, which is mixed with sterilized water for about 10 days supply.The Caskenettes estimate it will cost at least $1,000 a month for the formula.“I wasn’t too concerned because we have Blue Cross and I thought no problem. We have coverage. It will be OK.”But despite the doctor’s prescription, Alberta Blue Cross rejected Neocate for coverage because it is not classified as a drug under the Caskenettes’ plan.“Neocate Oral Infant Formula is considered a dietary supplement,” said a letter the Caskenettes received from the company.“Unfortunately, this product is not a drug, nor is it covered under any category under the supplementary health benefits included in this plan.”A spokesperson for Alberta Blue Cross could not be reached for comment.“They’re categorizing it as if it were Ensure or Boost and they don’t see this as a necessity for him,” Lisa said.She said she can’t breastfeed Isaac for fear of unknowingly passing along to Isaac any dairy proteins contained in a wide variety of foods she might eat, and it’s not known what other allergies he has.“He can’t go through this much more. The next step is a colostomy bag.”The Caskenettes say they have made requests to several organizations to help pay for the formula, including Alberta Health, social assistance (the family earns too much money), five charity foundations and the food bank.All have been unsuccessful.The family has also applied for assistance from the provincial government’s Family Supports for Children with Disabilities“It’s in the process, but allergies are not viewed as a disability even though it’s debilitating for him,” Lisa said.Ira, a labourer for the City of Edmonton, is applying for help from his union’s emergency fund for members, but it’s not certain how much money would be available or for how long.Friends and family have also pitched in.“It’s a big hardship,” Ira said. “It’s a thousand dollars out of your pocket every month.”Lisa said the family may be forced to sell their home. “At the end of the day, there is no cost that’s worth your child’s health.”I search further for more information about this family. Edmonton family in funding fight over hypoallergenic formula for infant sonGlobal News : Tuesday, October 02, 2012 9:06 PM Read it on Global News: Global Edmonton | Edmonton family in funding fight over hypoallergenic formula for infant son Imagine if it cost you $1,000 per month to feed your baby. That’s the reality one Edmonton couple is living because the only thing that’s safe for their son to drink is also very expensive.When Isaac Caskenette was just 4 weeks old, his parents noticed blood in his stool and took him to hospital. After doing tests, doctors diagnosed the now 8 week old infant with necrotizing enterocolitis (NEC) and a severe allergy cow’s milk protein.Issac was prescribed Neocate, a hypoallergenic formula made for babies who aren’t able to digest milk or soy-based formula.The only drawback is that four 100-gram cans of Neocate cost $262 dollars, and will last Baby Isaac 10 days on his current intake. It’s expected he’ll need to be on the pricey formula for up to 6 months.”We were warned that it was going to be expensive,” says Isaac’s mother, Lisa Caskanette, “but we thought ‘no problem, we have Blue Cross.” Turns out, Blue Cross doesn’t cover the formula because it’s not considered a drug. Instead, it’s classified as a dietary supplement.”I don’t understand how it can be categorized as a nutritional supplement when it is a formula – a hypoallergenic formula – that is a last resort for some babies,” the mother says.Alberta Health emailed the following statement to Global News:”Our hearts go out to the parents and to the child. Although baby formula is not classified as a drug, and therefore not covered under Alberta’s drug benefit program, there are government programs in place through the Human Services Ministry that may help.”The family says two of those three programs turned them down, though, because the parents aren’t considered low-income enough. They’re not optimistic about the third.And while Isaac is finally growing, the family’s savings are shrinking. “We don’t want him tube-fed, we don’t want him not being able to mature as a normal baby would when there’s a product out there that is just not within our grasp.”The family’s social worker has also contacted the Neocate manufacturer, as well as the Food Bank. Both said they could not help with the cost.An Edmonton mother says she is locked in a frustrating fight, trying to get the Alberta government to pay for the prescription food her son needs to survive.“This is not a choice. This is something that he does need, or else the results will be catastrophic,” said Lisa Caskenette, whose four-month-old son Issac suffers from an Necrotizing Enterocolitis, an intestinal disease.Caskenette says she has tried talking with the health minister about what she calls a loophole in coverage, but she wasn’t able to get a meeting. (CBC)The disease, which struck Issac a few weeks after he was born, makes it impossible for Issac to digest dairy products. It also puts a strain on Issac’s body when digesting food, and could lead to internal bleeding.The condition has sent the infant to the hospital several times.“I thought, oh, we have a milk allergy, we won’t be able to do milk and cheese … and then we learned it was so much more than that,” Caskenette said.“There’s a million and one things he’ll never be able to eat.”She says her son may become less sensitive as he grows into a toddler. Until then, the family has started feeding him Neocate, a special kind of formula. Without it, Caskenette says he would need a colostomy bag and likely need to remain in hospital.The formula costs the family around $1,200 a month — a cost Casekenette says will only increase as Issac grows.Yet despite doctors saying the formula is necessary, Blue Cross won’t cover the costs.“There is an answer. It is just not within our grasp.”Province won’t cover cost of formulaSo far, the family has been paying out of pocket for the formula, with the help of private donations.Caskenette has appealed the Blue Cross decision, which begins this week.In the meantime, she has been meeting with provincial officials in an attempt to get the province to fund the formula for her son and other children with the disorder. She says so far, she said she has been ignored.“We’re still getting a song-and-dance about covering it in Alberta,” she said.“There’s nothing I wouldn’t do with him. But going back and forth trying to plead the case with government officials who are not listening and not understands …. it’s incredibly frustrating. It is not a place where anyone should be.”When she tried to get a hold of Health Minister Fred Horne’s office, she said she was denied a meeting and was told that the province wouldn’t cover the formula.“I’m not asking for them to hand it over. I’m asking for coverage. I’m asking to pay a portion, and then have the rest covered by Alberta healthcare.”She says if the family’s appeal doesn’t go their way, they will look to friends and family to pay for the formula, and may even resort to leaving the province.However, she says, it shouldn’t have to come to that.“This is an Alberta citizen that is in need of the provincial healthcare system,” she said.***********************************************************************I am curious about what this condition is and I go look up information on it: enterocolitis represents a significant clinical problem and affects close to 10% of infants who weigh less than 1500 g, with mortality rates of 50% or more depending on severity. Although it is more common in premature infants, it can also be observed in term and near-term babies. (See Epidemiology and Prognosis.) NEC most commonly affects the terminal ileum and the proximal ascending colon. However, varying degrees of NEC can affect any segment of the small intestine or colon. The entire bowel may be involved and may be irreversibly damaged. ****************************************This seems like a serious condition with messy symptoms: NEC typically occurs in the second to third week of life in the infant who is premature and has been formula fed. Although various clinical and radiographic signs and symptoms are used to make the diagnosis, the classic clinical triad consists of abdominal distension, bloody stools, and pneumatosis intestinalis. Occasionally, signs and symptoms include temperature instability, lethargy, or other nonspecific findings of sepsis. (See Clinical and Workup.) ***************************************************It seems to result in significant inflammation of intestinal tissues and subsequent damage. It is not a minor illness as indicated by this reference: an infant suspected of having necrotizing enterocolitis, feedings are stopped and gas is relieved from the bowel by inserting a small tube into the stomach. Intravenous fluid replaces formula or breast milk. Antibiotic therapy is started. The infant’s condition is monitored with abdominal x-rays, blood tests, and blood gases.Surgery will be needed if there is a hole in the intestines or peritonitis (inflammation of the abdominal wall). The dead bowel tissue is removed and a colostomy or ileostomy is performed. The bowel is then reconnected several weeks or months later when the infection and inflammation have healed.Expectations (prognosis)Necrotizing enterocolitis is a serious disease with a death rate approaching 25%. Early, aggressive treatment helps improve the outcome.Complications· Intestinal perforation· Intestinal stricture· Peritonitis· SepsisCalling your health care providerIf any symptoms of necrotizing enterocolitis develop, especially in an infant that has recently been hospitalized for illness or prematurity, go to the emergency room or call the local emergency number (such as 911).ReferencesPiazza AJ, Stroll BJ. Digestive System Disorders. In: Kliegman RM, Behrman RE, Jenson HB, Stanton BF, eds. Nelson Textbook of Pediatrics. 18th ed. Philadelphia, Pa: Saunders Elsevier; 2007:chap 102.************************************************************ So the family cannot fart around here.The baby has to eat and can’t take in breast milk.The government needs to step up to the plate and help out here.Write to Mr. Hancock folks and let him know that this family needs our help and the government needs to provide it.Write to the Premier and say the empty hotel rooms at the Olympics were a waste of money but not the formula for this baby. Go write to the MLAs folks and get the baby his formula. With files from Su-Ling Goh, Global News Read it on Global News: Global Edmonton | Edmonton family in funding fight over hypoallergenic formula for infant son **If I were in this situation I don’t think I would want to be further stressed by the financial problems of supplying essential food to my kid –would you? Why does the government have money for everything that pertains to big oil –such as their trips to drum up business from other parts of the world but when one of our own are in trouble—their hearts break but the money isn’t available? What does Inhuman Services have to say about this?Will this family have to give up its child for the child to get the money for the prescription diet? I go look for the latest on this topic: Alberta refuses to cover son’s treatment, says motherLisa Caskenette says family is not relying on donations to pay for special food for sonCBC News Posted: Dec 2, 2012 6:56 PM MT Last Updated: Dec 2, 2012 11:02 PM MT

27 Dec 18
Research Monitor

Amino Acid Based Formula Market Market Aspects of Amino Acid Based Formula Industry: Global Amino Acid Based Formula Market is projected to display a modest growth represented by a CAGR of healthy during Forecast Period 2018-2025, on account of factors such as growing number of business & industry, Moreover, emerging markets have shown a remarkable growth […]

24 Dec 18

vGlobal Amino Acid Based Formula market report is an all-inclusive study and professional study which states the landscape structure of Amino Acid Based Formula. Initially, the basic market overview, product definition, specification, study objectives are explained. Also, the market size estimation, concentration, and maturity analysis are presented in the first section. Global Amino Acid Based […]

23 Dec 18

Hypoallergenic, amino acid-based formula in a powdered form.
Easy & convenient mixing. Can be used for oral or tube feeding.
Made in a 100% dairy-free facility with ingredients that are certified by suppliers to be derived from non-genetically modified organisms.

15 Dec 18
life after cicu

Now that Theo no longer needs an NG tube or pump, life is fairly simple. We no longer have 3 hour feeds and monitor fluid input, as he has 3 meals, 2-4 snacks and 3 bottles of milk a day, as well as water or juice. He has no oral aversion and is far from […]