Sugar in Formula

[colormist]

I keep checking this survey to see if the numbers have gone up. I'm glad to see so many people care about the issue!

[Stefanie (Ziba)]

I am finding it fascinating that HFI folks are signing and supporting fervently, but I am getting comments on FB's GSD page such as:

"I think Sweet Ease is a good tool for the NICU to use. I don't think many babies would have a problem with it..."
"You can always sign a form if you don't want them to use it..."

My response:

"Only parents who have had NICU babies can understand the flurry of decisions, fears and overwhelming exhaustion. I slept an hour each night and pumped 8 times a day. Even if I signed a consent, that would not help since I had no idea at the time that my son had a rare inborn error of metabolism. If hospitals give sugar to newborns, they should monitor the baby very closely for signs of metabolic distress. At one point, my son's sugar dropped to the 30s and no one noticed until I ran to get someone."

132 signatures and counting :-)

[rachael]

So true. Maybes it's fine for most but the are serious risks for others. Why put their lives at risk for a convenience? It doesn't seem like there is a medical reason for it. Also, consent doesn't seem to matter. My son was fed formula in the NICU without my consent (he was supposed to get pumped milk and donor milk). I was bullied into sleeping and not feeding him overnight one night because I wasn't in my right mind. Granted, he was only in for a couple days and there don't seem to be long term effects but to expect parents to be in their right mind when the newborn is in distress is absurd.

[colormist]

That was my thought precisely! It's okay to give it to babies who don't have metabolic issues, but for the love of god just don't give it out with abandon and not think of the possible repercussions! I hear they're doing screenings for HFI now, but I really can't believe there's any way they can get the results back fast enough to know whether or not they have a HFI baby on their hands.

My friend came across an article that supported the practice (he, personally, was opposed to giving kids sugar in general): www.npr.org/sections/health-shots/2012/01/09/144910916/a-little-sugar-and-a-human-touch-can-ease-preemies-pain

I love the last bit about how the babies got so much benefit from the treatment that it seemed cruel to not give the control group sugar as well, so they went ahead and gave it to those babies, too. AUUUGHHHHH.

[rachael]

Way to hook em while they are young! No wonder we self soothe with food so much.

[jenn123]

HFI most definitely should be added to the list of genetic testing for newborns. We were in NICU and my chiild was given the sugar water. Poor kid was given all sorts of tests and no one could figure out why her labs were off.
We had countless genetic tests - prenatal, new born, toddler, even a liver biopsy - and none of these tests included HFI. As much attention and awareness that we all can bring to this disorder the better. The lack of awareness and knowledge within the medical community is really scary for those of us who deal with this disorder daily. The fact that we were practically living in specialists office for 9 years, and i figured it out by reading google then received a lecture from one esteemed doc as to why she could not have this disorder is absurd, especially since our story is not unique, rather the norm, for families with HFI. I am all about spreading awareness as much as we are able. 🧐

[antonia]

In the original article that colormist posted it mentioned that doctors were aware of galactosemia and that it presents similarly to HFI. Galactosemia is also extremely rare so why is it being recognized but HFI is not? Is galactosemia the reason they’re using sucrose? Why not lactose or dextrose instead?

I’m also left wondering how is it determined that these babies are being soothed by sugar? It seems to me it would be more of a distraction technique than anything else. This article about soothing infants with sugar seems like a mute point to me and irrelevant to the real issue. Obviously, the babies in the study cited did not have inborn errors of metabolism. We all know that in the long run, infants with a metabolic disease like HFI will be anything but soothed by it in the long run. I’m surprised that GSD folks are not more disturbed by the fact that it is common practice in the NICU. It really is absurd to think parents should know when they need to opt out of it. Can they not see the irony that this practice is what is making these poor infants so very sick in the first place?

I never gave any kind of consent for my daughter to be fed formula. It was just done. I was given a few short minutes to try and breastfeed her after she born, then she was wisked off to the NICU. I remember looking at the bottle lying next to her and thinking why are they giving her formula? I was not given the option to pump. Later, the first few days at home when she was so miserable, jaundice and losing weight, I was made to feel like I was not doing a good job at breastfeeding her. Bringing her in for follow visits they would weigh her and then proceed to feed her more formula. She would gulp it down and they’d say, look she’s so hungry, she’s not getting enough to eat. I was threatened that I would have to stop breastfeeding her altogether and move to formula alone.

I really think if we band together and continue to increase awareness that eventually it will begin to sink in. Especially if doctors and other medical staff are able to see improvement in infants and children when taken off fructose or fructose containing sugars with their own eyes, in a hospital setting. In our experience, unless one lives it, sees it themselves, it’s just incomprehensible that sugar could be so very dangerous to a human being. I have sat in many a doctor’s office and been lectured on all the reasons why my daughter can’t have HFI. At the same time her miraculous improvement on the HFI diet is completely ignored. It doesn’t seem to matter to them at all. When I ask them, “How can I determine if fructose is causing her metabolic distress?”, I’ve been told to just give it to her. I can’t even express how frustrating this is. I am not going to give it to her, not one tiny grain, anymore! Giving her fructose is the very reason I’m sitting in front of them to begin with!!!

[colormist]

What adds to all this frustration is that in these articles (and our combined experiences with doctors), there just seems to be a tone to brush it off as "oh well, your baby failed to thrive. We did everything we could." Brush their hands, move on to the next baby.

One person wrote on the petition something along the lines of, "HFI is actually quite common, it's the survivors that are rare." Just tying that to all these stories of struggling parents and their sick babies and the stories we hear as adult HFIers that "you can't have HFI, you would have died as a baby". It just makes me sick.

Like the hospital is some horror gauntlet and only the strong babies survive. It just makes me sick to my stomach. HFIers can lead perfectly normal lives if people stop giving us sugar!

With HFI, you're either an advocate for your disease (or for your HFI child) or you run the risk of death in the wrong hands.

In the facebook group, I was reading about some hospital print out of what foods were safe and they kept recommending adding sweetener to bland (perfectly fine) foods. WHY? Because it doesn't taste good to the nutritionist that wrote the guide?? WTF.

Sorry, getting off my soapbox now. I'm really riled up.

[Stefanie (Ziba)]

I am looking into other avenues to raise awareness and make change. I appreciate you all getting behind this!

I, too, wonder how they determined that newborns were being soothed by sugar. Did the newborns tell them this or did they merely "stop fussing". Going into hypoglycemia can cause a quiet stillness as well as we all know!

As my parents both commented on the petition, sugar at a young age sets a dangerous psychological and physical precedent of depending on a substance that contributes to a slew of diseases. I am sure vodka would soothe anyone getting a blood draw, too. But, clearly we all find that absurd.

Just like any medication, the administration of Sweet Ease should be followed by thorough monitoring to see if the child is reacting in any way since it is highly unlikely, as Colormist stated, that HFI would be diagnosed in the NICU.

[rachael]

What is the Facebook group you are referring to? I'd love to join if parents are allowed.

One of my concerns since my son's diagnosis is that people will think I'm just some crunchy hippie who is overly concerned about sugar and won't take the diet seriously (not that there is anything wrong with crunchy hippies).

The last time my son vomited, over 2 years ago, was because the nanny put Palm sugar in his pancakes because she thought it was healthy. We got genetic results confirming that he had HFI later that day as he vomited all over the doctor's office, it was like he wanted to do a demonstration Needless to say, we provided all of his food after that!

Maybe that is part of the problem; people thinking we are just making it up?

[colormist]

This is the group that I've found is most active. Quite a few HFI-forum members are posting there. www.facebook.com/groups/1787259404931697/

You can also do a search for HFI on facebook to find the other groups (again, they don't post very often). I think most are a closed group--for the same reasons you mentioned! They don't want to deal with crunchy hippies (LOL) that suddenly decide (without signs of HFI) that sugar is bad and then start posting all this dangerous information that could hurt someone just discovering their diagnosis!

[rachael]

Thanks, I hadn't found that one! That ones I found rarely have posts. I sent a join request.

[rysmom14]

here is my 2 cents on the HFI testing as newborns. When we were surprised with baby #3, I only fed her breast milk and supplemented with the emfamil progestimil that is sugar free until we heard back to see if she had HFI or not. Knowing about HFI and knowing that I don't make much breast milk, I was trying to coordinate having her blood darwn while we were still in the hospital after she was born. I was told no, that it needed to be done as an outpatient. it was something with insurance, and stuff like that. So we had to take her home and then find someone that would draw for the test. then we ran into other problems because the blood was being sent to Baylor lab, quest and other lab services in my area are not allowed to draw labs for another lab so we were turned away. I called Ryans genetic counselor all worked up because I couldn't get anyone to help. finally we were able to take her to children's to have her blood drawn and they handled it the same way they handled Ryans labs as an inpatient.

They were only testing for the specific, known mutation that Ryan has. even knowing such specific information, the test still had a turn around time of a couple weeks 2-3 weeks. I think we found out around 3 months of age. so I know they don't offer it as a newborn scan, and it was nearly impossible to get it done otherwise even with a history in the family.

so when I think about the time frame of everything. Ryan went into the hospital already very sick at 4 months, and even knowing what we were looking for with baby sister, it still took until 3 months old. so if she did have HFI ( she doe not have it)and we weren't cautious until we heard back, she would already have had problems. I'm glad we played it safe and only did breast milk and the sugar free formula.  My sweet sisters in law were both breast feeding at the time as well and offered milk to supplement as well.

[colormist]

Rysmom -- and that's all with you KNOWING about HFI, what the testing procedure is, and the safest ways to feed HFI babies. To expect parents to know about HFI enough to turn down certain processes because the baby might have HFI? Ridiculous. Most parents don't even know they're carriers of the HFI genes!

So you started right off the bat with getting test results and it still took three months. They really should stop giving infants sweeties--or, at the very least, switch to glucose.

[Stefanie (Ziba)]

UPDATE:
I now have over 2000 signatures. I was stuck at 500 for so long and then in the past week or two, the sigs have quadrupled. I am so excited. I am going to watch over the next week and then will be ready to close the petition and send to many organizations, including Philips which manufactures "Sweet Ease".

[rysmom14]

I just signed and it's almost up to 2300!

[ukbill]

Sept 7, 2018 14:15:24 GMT -5 Stefanie (Ziba) said:

UPDATE:
I now have over 2000 signatures. I was stuck at 500 for so long and then in the past week or two, the sigs have quadrupled. I am so excited. I am going to watch over the next week and then will be ready to close the petition and send to many organizations, including Philips which manufactures "Sweet Ease".

send the info to www.rarerevolutionmagazine.com/

[rysmom14]

I also shared this through my personal facebook account. Once I signed, it gives you this option. for anyone who is interested.