Shan,
Thank-you for the info from Dr.Cox. I appreciate it.
As a parent of 3, I believe you never stop learning... and you are never too prepared for life's unexpected surprises. By no means should this ever be mistaken for an alarmist approach or overprotecting in child rearing. We teach our children many things in transitioning from childhood to adulthood. Many things, from talks about healthy relationships, peer pressure, drinking, avoiding drugs etc, etc. etc... We even teach them the safety behind looking both ways to cross a road, and using seat belts in a vehicle.
Why? because without the power of information, or the experience to understand... the unknown may be costly. Most of us will never get into a car accident and rely on that darn seat belt for saving our lives... but we all teach our children that accidents happen.
SO can bullying and peer pressure.
Not that it will, but it is a possibility. I'm sure everyone has been challenged with a right or wrong choice in their lives at one point. If we are lucky, the lessons we learn are enough to teach and shape us.... but not break us.
Growing up well prepared does not mean fearful. Just well informed, well adjusted, and allows a child freedom and the confidence it provides.
I am a parent who has seen many things. And we have occasionally been blindsided by the most unexpected. You know, the ones that no one sees coming...
Of course, everyone is entitled to an opinion. I believe people should pick and choose what's right for themselves. And today's needs or experience may be different than tomorrow.. and so, things may change accordingly. Why? Because experiences shape us... not hold us back... So I agree with arming oneself with information and the protection of being well planned.
Everyone with a health issue should consider a plan "B" to speak for them if they are not able.
The info from Dr. Cox is wonderful. It is clear and straight to the point. I believe another senior member of the forum also carries an extra "in case of emergency card". It makes sense. And if it's never used, it's never used. BUT if it is necessary... it may be the most powerful life line at that time. And the less confusion, the better.
Isn't this why diabetics have emergency cards (and medic alert bracelets) -and- bee allergy kids carry an epi-pen in the event of a sting that may never happen? And yes, I know bee stings are immediately life threatening... The point is it's just to be prepared -in any event-
The truth is, one person's life experience can drastically differ another's. Hurdles of today (food and life) are different than those of years gone by.... and one country (or area of) may differ to those elsewhere. And an adult with glimpses (and who already knows their limitations) greatly differs a child or adolescent just learning or testing boundaries. Or at an age where bullying or accidents are at highest risk...
So, although I have also taught our son anything related to HFI, like you, I will worry for the situations that he may not in the future be in control over. If they never happen, wonderful. But I will prepare him for those too. And your card idea (in case of being unconscious for any reason) is smart. It's just extra protection. No big deal. That, and perhaps a medic alert bracelet.
Forget HFI for a moment. Every child will be tempted sometime in their life. It is how they learn. It forms the character they build. However... add a health complication to it and life just kicks up a notch in seriousness.
We teach, because kids don't know what they don't know, until they know it. And although one can prepare as much as possible, it's the very "outside" influences or emergencies that can not be controlled that you need to be concerned with. And rightfully so.
And a card of info... is nothing in the big scheme of things. It's just a card. Not a billboard. It is not a target on their forehead that says "Be careful, I am different." It's a great idea.
I come from this perspective...
A few years ago, my youngest child (son) was encouraged by medical professionals to quickly drink down a solution of fructose for his initial Fructose Malabsorption Breath test. He didn't like the smell. They told him to hold his breath. He drank it. Then he projectile vomited in a matter of minutes.
Days later, the test was repeated. They gave him a straw (so he wouldn't smell it) and was told to drink it slower (to not upset his stomach). He quietly pleaded in my ear that he knew it was really bad for him and that he didn't want to drink it. He barely sipped it. But he didn't vomit. Not enough went in him at once to cause that reaction. And the sipping (although making him feel ill) confused his body with the actual amount cumulative (but ever so slowly) going into his system.
Soon, everything in him started to slow down, and his eyes teared up as he whimpered. It was horrible.
I almost stopped the test several times as I thought his behavior was becoming very different. Very tired. Very slow. And he never pleads. And yet he was...quietly. But we both knew how important the test was, and not wanting to be an inconvenience (as he vomited the last attempt and we had to reschedule) he tried. He tried to accommodate everyone -and- to be as "brave" as he was being encouraged to be.
I inquired how the test could be done differently and was flatly told there was no other option.
We were told that he was just reluctant because of his vomiting days before. So he was "afraid" and therefore quietly resistant. Yeah, right. I should have stepped in and said that this quiet pleading was, perhaps quiet, but extremely alarming behavior for my child's personality. By then, he was quietly moaning and holding his head in his hands and almost crying. Tears were in his eyes...
I was the parent. We have two grown children and this little guy (now 11). I am well educated, but have been at home mom through out. I know them inside and out. And our family is extremely close. But...
I should have known better. Yet I didn't because -- even at my age -- you just don't know what you just don't know. Until you do. And if the lesson is strong enough, it only takes the one to learn. Forever. And sometimes trust in (or pressure from) others can override our own instincts. Even at my age.
Eventually, the lab nurse was running out of time for the drinking portion of our son's test. Because of this, she thought she could more "strongly encourage" our now timid son to drink more of the solution using her status as a nurse.
Luckily, as she picked up the cup, it slipped out of her hand and the remaining contents of the fructose solution spilled all over my son's lap. Just soaked him. But, although she was miffed, she said the test would continue regardless as this was our second attempt. My first thought was how happy I was it spilled. Then how rude she was. Then... how uncomfortable I was that we were becoming an inconvenience and may have wasted the hospital's time...again. Normally, we are drama free. If we have a test, we do it. And although he was exceptionally polite (of how sorry he was that he wasn't "faster") we felt we were a disappointment. He was 7. Sweet age. And still had more courtesy and compassion than what was shown to him by this professional.
And then.... he started going hypo. Went to about a semi-conscious state, with eyes closed and only able to murmur in response to questions... but seemed not enough to answer verbally. It was like he was peacefully half asleep on the chair. And although the nurse kept tabs on our son and things seemed very calm and controlled.. the scene seemed "off" to an outsider like myself (with no medical background).
Nothing tragic or dramatic happened. And it took a couple of hours for our son to slowly come out of it. Almost like a very long waking-up-from-being-drugged kind of a sleep wake-up. If that makes sense. That was when we were told it looked like he went "a little hypoglycemic... but it's ok because he bounced out of it nicely and was talking and happy now." It is sad for me to admit, but I didn't know what hypoglycemic meant. I had to ask. I was told that all was ok, but that he would probably want to eat a lot after the test. Ok... but then also why wouldn't he, he had been fasting since 8pm the night before (for the test) and it was now almost 11:30am.... urggg.
The lab nurse then gave us the positive FM results (even though he was tested on less that half the fructose solution). Told us to mention the hypoglycemia to our pediatrician (even though it would be mentioned in his results). And then sent us on our way. And truthfully, the rest of the day was fine. But it was WEIRD how our son's demeanor and energy level totally changed during the test --and then changed back-- like nothing had happened.
After his McDonald's chicken nuggets/fries and water craving was satisfied... he was chatty like nothing had ever happened. My husband and I just looked at each other, puzzled.
When we got home, I called our pediatrician as requested. She scheduled us for an appt. asap. I thought that was interesting. So I googled. First what hypoglycemia was, then fructose and hypoglycemia.
And then the world opened up... and that's how we learned of an HFI potential. And the asap appt to explain, and the new referrals for Gastro and Genetics/Metabolics.
We later found out that the nurse had no idea of an HFI potential. Understandably, FM breath tests are not to be done for anyone that has not been ruled out for HFI first... so I guess we should have never been there to begin with. But still, at the very least, that nurse should have been aware of a metabolic potential connected to fructose. And the clues. And if in question, then ask for blood/urine to be tested also.
She now knows...
Anyhow, we blame no one. Our son had almost a full regular kid diet-ish until this. Sick as @#$% sometimes but had no aversion to the smell and taste of most things by then. So there was really no indication that this usually safe FM test would pose a potential issue.
Ok... I have to admit though, there were some serious signs all along in his life, but those have only now been pieced together more clearly in hindsight -and- in the last 3 yrs of more serious investigation. And... there were definitely things he would avoid (but lots not).... And he sniffed every food first. Seriously. He was a sniffer from infancy and first foods on... but we thought it was a weird quirk.
And there were definitely times he got sick. wow.... I have a banana story... Spectacular.
But, he ate.... lots... And he usually didn't vomit over foods (intense nausea, yes but not over a specific food) or have a instinctual aversion to the smell and taste of sweets. So... we were all confused.
It has been three years since this first FM testing. After much other testing (including DNA), we still tread carefully and use the HFI diet... but we still don't have conclusive answers. So our son is unofficially now strongly suspected for FBPase deficiency, because it explains more of his latitude in symptoms and health nuances.
Back to the reason I wrote...
We are challenged many times in our life. Hopefully the choices we make are not devastating. Three years ago, we had a little luck smile on us and our son stayed safe during his FM breath test.
Parents worry (and rightfully so) on how to educate their children best as possible. How to raise their children to be as well rounded educationally and socially as possible. We all want responsible and also carefree, safe, and happy children.
And we want them to grow to be the best person they can be, with the courage and enjoyment to tackle anything they set their minds to. And embrace new opportunities in life.
Knowledge gives the power to do so. And the "safety blanket" of an emergency card of information (and medic alert bracelet) for the added security is like giving a super hero his cape. It's there if it's needed -and- of comfort/peace of mind if not.
Anything can happen. Illness, car accident, bullying... anything. And until the day our son had a seizure (from blood sugar and electrolyte imbalance), we never thought that could happen also. But at least if he were unconscious for ANY unforeseen reason... and while the ambulance is on it's way, a card (or medic alert bracelet) can talk for him if he is unable to himself.
We are not HFI (DNA)... and although we have some love/hate relationship with fructose and metabolic issues concerning it... we still tread carefully. I know it has been questioned before if we actually are HFI, but we can't be. He ate regular amounts when he was younger, and even the fructose challenge test showed inconclusive. Irregularities, yes, in his blood tests (Fasting, Fructose challenge), but no real answers.
Something is "protecting our child" from complete collapse... they just don't know what -yet-
So then why the dramatic (but not life threatening) FM breath test? Dunno. Perhaps because he was at his most toxic point in his life. Because later, and after being on an HFI diet for 1.5yrs, he was fine-ish in the Fructose iv. challenge. Very confusing for all. But even so, they did find irregularities that made us have to go through a few other metabolic/fructose tests afterward.
But as of today, still probably not HFI.... unless it later is.
My thoughts are: You just don't know what you don't know -until- you experience it, and then learn from it.
Be as prepared as what brings comfort. Because although I can rationalize that on the day my son had his original FM test I didn't know of hypoglycemia and HFI... he still went semi-conscious... accidentally. And it was I that convinced him in that case to ignore the strong instinct he had (which will NEVER happen again). And in order to please everyone, he did... It was a mistake. It was MY mistake. And it could have been costly if he had full blown HFI.
And this was just off of a drink... so perhaps for those with HFI...it is possible for serious risk of harm.
And perhaps not death, but all it takes is to go hypoglycemic, unconscious, and treated by others or medical professionals the wrong way to then be life threatening. Why the risk?
Sometimes, the bully is closer than you think. And unfortunately, on that FM test day (3yrs ago) unintentionally, I was the bully that forced fructose (on a completely empty stomach) on my child. And I was bullied by a health care professional that should have known better.
The scary thing about it was that I'm no push over, and have always relied and done very well with my instincts. But this was a new situation (not unlike the naivety of youth) where I had absolutely no experience or knowledge -and- complete trust in someone else. For goodness sake, we were in a hospital, I had no reason to question. But I got caught... and made a bad choice for my child that day.
So ... my story is the reason parents worry about their children being influenced by someone else. I am an adult and look how easily we got in trouble.
Good judgement comes from experience. Experience comes from bad judgement.
People need to understand... sometimes situations that should be under control --are-- and sometimes others --not--. It could be a result of the child, or loved one (misled by lack of information), or a bully, or illness, or an accident (and unconscious)... whatever. If someone is in harms way, you need a plan "B" to speak for the child. PERIOD.
There is no right or wrong. Just what makes a family feel safer. And that is what's right for them -- for as long as it needs be --
Shan, thank-you again for the card detailing emergency protocol should it be needed. I appreciate you taking the time to look into it -and- also sharing the information. It is a very valuable resource in my opinion.
Lucky
did not meen to come over as really "telling you" only passing on my own expreriances.
Funny thing is the bottles are exactly the same............... what a waste.