So pleased to have found this site!!

[lucky]

Hi Emie,

Thanks, we are doing really well here.
Let's get you there, too...


1./
Not eating very much:

- My son did this at his worst time. Eventually reduced himself to only HFI safe toast with butter, HFI safe crackers and plain cream cheese - as everything else consistently hurt by that point.

Before, he did well on HFI safe foods, and then as time went on (and activity increased along with an issue with a prescribed stool motility medication), he started to do poorly and reduce types of seemingly safe foods that were once well tolerated. It was frightening. By this time, he became consistently fearful of food, and increasingly ill. Eating eggs (which long before were fine) now made him scream for 1.5hrs (till digestion progressed). Other foods were hit and miss. It was a total mystery and becoming very serious as not eating enough was also causing pain (from being empty/hungry + internal fructose dosing -which is a byproduct- of the body's natural process of reconverting it's stored energy back into useable energy... in times of need).

Obviously, all this also affected his blood sugar's ability to balance. Eventually, all was accidentally corrected with an iv. We now heavily suspect dehydration / electrolyte imbalance as the culprit -and the medication made it worse.

So I suggest:

Firstly, go for basic HFI safe foods. And NO tolerated 'fun' stuff. Just tried and true HFI foods till your 2yr old son is stable. BUT... if that doesn't work... and things are still worrisome, consider this:

Ask yourself if this flare-up just started recently.

If so...

* Has something changed?
* New foods / meds / testing / illness?
* Have once tolerated foods = not now?
* Did it flare with expanding diet?


2./
* Is your son dehydrated?
* Is an electrolyte imbalance possible?

- With all that he's gone through, and especially the loose stool and vicious diarrhea. Either (dehydration /electrolyte imbalance) is possible. Infants and young children can become clinically dehydrated (and/or have an electrolyte imbalance) FAR easier than adults. Especially in cases involving diarrhea and vomiting... and in combo with not being able to eat / digest well afterwards. Acid stool is a clue, and a risk if it persists.


DEHYDRATION / ELECTROLYTE Imbalance
* quiet ways it can sneak up on a child *


3./
* Are there times he sweats a lot?

If so:
* During daytime?
* During nighttime?

* Any bad dreams, crying, night terrors?


If sweating *daytime*:

- If you're in control of your son's meals during the day, you may not see sweating as you may be feeding your son in intervals that suit him. BUT if your son is in daycare or preschool, and if snack / food times differ than what he needs... he may sweat because the timeline between feeds is too long. Or perhaps, activity level doesn't match with food intake.


* Have you or others noticed sweating?

- Your son would have wet hair or have moist skin during these times (which would clear up after eating / drinking).


Or... if no obvious sweating:

- Your son may be regulating his temperature by wearing less clothing at home. This is sometimes tricky to asses as many toddlers like to strip down to the fewest clothing as possible. Simply because they can.

But if you observe, you may see your son (like mine) stayed warm and comfortable almost naked. I was often asked if he ran a slight temperature, but I didn't (at the time) ever consciously take into account that more skin exposure = more skin surface area exposed = automatically cooler. So no temp, or if so, very minimal. However, if he was fully clothed (and consistently), he may have been warmer than I thought.

And at bedtime, the covers were almost always kicked off.
And at older ages, he consistently preferred cooler type clothing at school. No sweaters or sweatshirts for him, even today.

Also... look for white salt stains or a bleached "ring around the collar" look around shirt collars. It signifies salts being lost from the body. That is a clue toward being at risk or actually slipping into an electrolyte imbalance (and/or becoming dehydrated). If this is seen often, and if other serious clues are present, it may not be easily corrected by drinking alone, but eventually by iv only.


If sweating at *night* (-middle of the night-):

- Look for wet hair, wet clothing, and/or wet sheets coming from sweating. Other signs would later be white salt marks/stains on pillow case. As in above, these are dehydration risk clues.


Sweating / Night terrors / Bad dreams:

- If seen, mention to your son's specialist. A trance half-dream-type cry is a sign of potential hypoglycemia.


4./
* Does he have any scalp sensitivity or heart palpitations?

Scalp:

- That may indicate dehydration if the "soft spot" area is slightly sunken or sensitive (like a bruised feeling). You may notice this when you try to wash your son's hair (or brush it) and he complains of tenderness / pain. Inform your son's specialist -as if he exhibits this, it may be a dehydration clue. And if it is dehydration / electrolyte imbalance, and to that level, there is potential future risk of seizure if not addressed and corrected. That's what happened to our son.

Chest:

- Heart palpitations (or electrical type pain) is also a potential sign of dehydration / electrolyte imbalance. Our son had this at his worst point.

- For our son, tests later ruled out both heart (chest) and seizure (brain) type issues. And luckily, each issue was just a symptom of being ill, and after iv rehydration, have NEVER returned. Nor are expected to...


5./
* How's his stool / urine output?
* Acid stool / skin burns / bumps

Stool:

- My son was "going" just wrong stool consistency. Until he had an iv. this didn't correct. This can be either first, diarrhea or later, constipation.

- If acidic stool is involved, there is a product that will greatly help protect and heal surrounding "burnt" diaper rash type skin. It was a lifesaver for us and was recommended by our Children's Hospital.


* Healing cream *

IHLE'S Paste :: 150g = $5.99
well.ca/products/rougier-ihles-paste_6591.html


Because it has 25% zinc oxide (which is what makes it work so well) it heals skin VERY quickly (and as an added bonus, can be used as a strong sunblock). Maybe there is a product like this available closer to you? But as always... confirm ALL info / food choices with drs. before trying on a child under investigation. Just to be safe.


Urine:

- If dehydrated, urine may have a *strong smell.

Or... no smell if your son voids quite a bit. In this case, it may just be "going through" him (if drinking far far far too much). And not on a good (absorbing) way. That could be deceiving as you may think all is well, but may also result in urine that's too diluted (but still not having the proper electrolyte balance). That is also a problem.

Keep in mind how much peeing is happening. Too much may mean irritation or imbalance... and possible risk for an issue.


Sweet smell to urine:

* Please tell your son's specialist
(-and especially if it smells like *Maple Syrup*-)

* A strong smell could be from dehydration
* You can check urine yourself


Checking urine:

- Ask your pharmacist (chemist) for a vile of diabetic urine sticks testers. Some types check for multiple issues in one: like glucose, ketones etc. It may be a quick, inexpensive way to test if your son is releasing chemicals (in his urine) that he shouldn't be. Just as you've been asked to monitor blood sugar levels over a few days, testing his pee may show something unexpected, also. And if all is good, and no issue... it may put your mind a little more at ease. Although, I suspect your son's doctors will want to clinically confirm it themselves.


6./
Thirst... (too much / too little)

- Sometimes, dehydration / electrolyte imbalance shows as having an insatiable thirst... and other times (or later) a lack of thirst. From what I understand, the initial excessive thirst is the body's confusion in thinking that drinking enough will correct the issue. Why wouldn't it... it's conditioned to know if one drinks, normally, one replenishes what's needed. UNTIL there is an actual serious unbalance. And so, without understanding this, the body keeps drinking and looking to correct -but can't at this stage- because what it actually needs... it can't find. It's looking for (and needing) electrolyte balance. Hence, sometimes there is a need for an iv (in situations no longer fixable by oral hydration).

Lack of thirst:

- Not sure why... but it is also a sign.


7./
* Has your son been given any medication?

- If he had issues with digestion (or stool consistency) in the past, was he given a stool softener like Miralax or other? There is an ingredient (*polyethylene glycol 3350*) to look out for and exclude as a potential issue. According to some literature, it may be a suspicious ingredient for those with HFI. But even if not, it should NOT be taken if dehydration may be suspected. Reason is that it pharmaceutically extracts fluid from the body into the colon to soften stool. Safely. But if dehydration is a factor, it will still extract, leaving the body even more vulnerable. And that's bad. Our son was once in that position, and we think it was that scenario that eventually led to temporary seizures. This was later corrected with an iv, and the issue is permanently resolved.

Also...
*Some stomach acid neutralizing meds contain fructose*. So, as much as it helps, it also hurts a child with fructose issues. It's a sneaky problem.


8./
Distended stomach:

* Could be from acid, gas, inflammation.
* Sign of constipation.
* Sign of an unhappy liver.


If from acid:

* Ever notice hard, powerful burps?
(-and especially on an empty stomach-)

* Or wet burps?


Acid:

- At this age, you may also notice issues / problems with enamel formation on baby teeth. Yup. That damage may also be coming from acidic saliva (acid reflux).

May need *safe* tummy meds to neutralize acid issues till diet is resolved and digestion heals.

Long ago, our son was on two kinds (for a time) to neutralize awful stomach acid until the specialists figured out what eventually was an issue with fructose. The meds were to neutralize and protect him from digestive system damage due to acid.

Turns out, one of the meds had fructose in it, so as much as it helped him, it also hurt him. So that was discontinued immediately. One step forward. One back.

And funny... but not funny... This was realized in an early stage of his fructose journey after his tonsillectomy. He woke up after surgery and hours later (while still on a hydrating iv), proclaimed he was healed and would never need his stomach meds again. Neither of them. And he was right.

Yup. The iv hydrated / corrected him (this was first of two cluster ones that corrected him) and took away the need for those meds. Acid was gone. And a couple months later specialists began to narrow down fructose as his primary issue -and his diet was successfully changed.

And he has not been on any meds since. And is permanently stable and thriving...


Constipation:

- A child can actually be unexpectedly "backed up" quite a bit. An x-ray can easily evaluate. Obviously, because your son has loose stool lately, he doesn't seem to have this issue at this moment. But keep it in mind as an unbalance digestion can swing, unfortunately.


Unhappy liver:

- Blood tests (AST/ALT) etc will evaluate.


::

So why all this info?


Because dehydration / electrolyte imbalance is a nasty hidden issue that can accidentally and easily get missed (or not occasionally re-evaluated). ESPECIALLY in the midst of many other very important metabolic / genetic issues needing to be tested. Of which, sometimes also having to be tested by different departments and specialists. Sometimes things... "little" things get missed.

*Dehydration / electrolyte imbalance is a problem for digestion*.

Without proper hydration, food can become difficult to digest. And that is -painful- regardless of age.

Dehydration / electrolyte imbalance also makes it hard for the body to keep blood sugar balanced (among other things). So then the issue becomes to decipher if blood sugar problems come from that (or other, and correctable) or, does it originate from an actual genetic issue as in HFI.

I have full respect for doctors.
It's all a delicate maze to decipher.


9./
Problems with digestion:

Why food can hurt:

- Proper digestion relies on proper hydration (electrolyte balance / hydration). Even the colon heavily relies on it.

If lacking that balance, it will affect the stomach's ability to make a needed amount of chime (which digests food). And, w/o proper chime, digestion can be extremely painful.

And where there is pain, there is reduction... the reduction of foods perhaps once tolerated (and that should be safe). Reduction is sometimes a coping mechanism in this case.


10./
Why is milk now a problem?

- Many who have gone through this journey have found this has happened. As long as all other medical issues have been excluded, it seems (from a mommy standpoint) that lactose free milk seems to be more gentle. Perhaps with all the digestive chaos (and until a raw system has a chance to fully heal) it is simply far more gentle on the system.

Many of us have found this to be the case. And when all else failed and everything obvious excluded -but pain persisted- switching to lactose free milk often was the magic fix. Even if a Lactose test showed no issues with lactose / lactase enzyme.

I know my son and Charlie's daughter (and others over the yrs) tested fine with lactose, but later (and after much time and food evaluation/reduction)... still ended up on Lactose free milk. And that's what worked.

For our son, lactose free milk was the last key to health. And for us, although our son prefers it, after a few years of it, he can now fluctuate (somewhat) between regular and lactose free if he chooses. So that may just be an indicator that, in the early stages of healing, his whole digestive system just needed extra comfort and easily digested foods (until all healed).

Time will tell if this is also the same for others.


11./
Extended sleeping vs blood sugar

* Was there by chance an odd body odour also?

Sleeping:

- Until we got our son's issues under control, our son never slept well at night. He would wake often, or when older, wake early to eat. If he was ill, he'd feel the illness more than another might. If for some reason he didn't eat well at night, but slept longer (before we understood what was happening), he would awake crying / screaming, and in sweaty night terror trance (which interestingly enough is a survival mechanism to startle the body awake and shoot blood sugar higher, I think through adrenaline).

When older, if he slept in too long, there was a great chance of a moody, grumpy, sluggish child simply not very capable of awaking easily.

It was all blood sugar driven.

Odd odour:

In his early school years, there was a few times of exercise leading to an unusual surge of energy and along with it a unique body odor. We think (now) that in those times, our son's body switched into using ketones(?) as an alternative (and quickly converted/easier energy source). And the burst of extended energy was a result, and quite noticeable. In each case, he would go from starting to look tired to looking like he was just fueled from a great snack (and happy).

Perhaps the blood sugar # you saw in your napping son reflected a conversion that fueled him and allowed him a longer sleep?


*BUT*
Whether this the case, or not, until you clear it with his specialist, I personally wouldn't let him sleep that long next time. To me, 15 hrs for a 2yr old seems waaaay too long to not only go without food but also hydration. And after a full 15 hrs, 5.6 seems a little high for a 2yr old, but I'm not sure. It could be fine, or nothing more than a symptom of his body struggling to stabilize blood sugar (as seen in swings when lower numbers). But be careful. Ask your specialist for council. A grumpy child is often a sign of blood sugar swinging - higher or lower.

However, if everything is ok'd and all is metabolically stable, perhaps it's a sign that the food he is now eating is suiting him and keeping his blood sugar higher (and comfortable enough to sleep longer). Curiously, I wonder if a ketone pee stick test might have shown positive and explain the blood sugar increase? Perhaps it's worth a look into? It would be part of that same diabetic combo pee stick test mentioned earlier. I'm not that familiar with proper blood sugar levels for a fasting 2yr old, truthfully. But 5.6 sounds a little suspicious to me (as we were always substantially lower)...

I would ask the specialist on what way (or not) to proceed. Or if just to monitor...

Still... as a mommy that's gone through some crazy times myself... I'd err on the side of caution. I'd carefully track blood sugar and sleeping intervals from this point on (along with eating, drinking, voiding and behavioural patterns).

Because at 2yrs old, although your son can communicate relatively well, there is still a whole lot of deciphering that can only be done through constant observation (and vigilance in documenting emerging patterns).

I'm nervous to say, but...
Please don't let your son sleep too long at a time ...at least until you get definitive answers -or- a diagnosis that gives you safe parameters to work within.


12./
And lastly...

Before and after iv hydration:

- Before our son's second (and last) iv correction (at age 9) and before realizing our son's hydration issue (which was connected to the fructose issue we, at the time, were not yet aware of), it got so serious that our son had to have a Protein test to exclude if protein was causing him such pain. Nope. But it was that test (and a Fasting test and Fructose Challenge test that each came with a mandatory protective iv) that corrected his issues. Again. Accidentally.

IV corrections and then miraculous improvements in health became a repeat pattern. Once fructose (and our son's nuances with it) were realized, no subsequent corrective iv's were needed. He stays perfectly balanced 4yrs later.

Sometimes answers come only after everything else is tried... and something stumbled upon.

Hindsight is often 20/20.

So....
- After the last iv, my son's health promptly returned. Stool and urine output corrected to a proper state. Normal appetite and eating patterns also returned (all HFI safe foods -although we had to slowly reintroduce foods to his sensitive system-). And most importantly... he exclaimed all the constant stomach pain was GONE. AGAIN.

And... eggs, protein etc is not an issue at all for him, since.

And in the years since this iv rehydration epiphany, fructose realization, it's diet correction and long term body healing protocol... our son has been healthy (with no meds) since. It's been 4yrs since our last and final crisis. And we're thankfully done with all the danger, chaos and soul crushing stress of his complicated youth.

Hope some of this helps...
-xo

[charlie]

I don't know about the blood sugar, that is within normal range although odd it wasn't low. I, assume they have screened out diabetes? You can drive yourself mad thinking of possible disorders but another one that gives distinct odour to urine is Maple Syrup Urine Disorder.
As I said Megs urine often has a distinctive sickly smell, I can often detect the smell as I go towards the bathroom and know then she has sneaked some food or I have got something wrong.
Hopefully they will come back quickly with answers but if it is anything like our hospital you do need to pester, I think they move on to next patient and "forget" quickly about the previous one...... Be very friendly to your consultants secretary....... That is the best way to get things moving......

Have any of us said yet the popular phrase "keep a diary". Make a note of absolutely everything he eats, quantities and time. Moods, sleep, poo, pee, anything you feel relates. Then slowly a Pattern may emerge as sometimes reactions can build up over a few days so you have to assess the cumulative affect of foods.

[emie]

Wow!! Thank you so much to the both of you for that level of information, things to think about and questions to ask myself! I have read both posts several times to take it all in! Tyler does drink a lot but i was always told this was a good thing and not to worry! Same with him waking in the early hours covered in urine, right down to his sheets etc. (normal for toddlers) All his medications are sugar fee now. His acid reflux one wasn't even though it was supposed to, but all ok now. He also takes medication for his colitis to reduce inflammation etc. Again def sugar free! When he had his biopsies taken for enzymes his lactose one was very low and he was lacking one that the dietitian had never heard of, never found out what is was! I will chase that up! However, with the lactose the consultant just told me not to worry for now and cut back on dairy :/ I don't see much difference if he does have dairy or not as he has acid poo all the time! It could be the reason to why his stomach is abnormally low?! This morning he woke up deathly pale and moody, so checked sugars and they were again at 5, therefore ok but was really poorly all morning ?!! :/ i am usually right when i think his sugars are low! He is barely eating too! At the hospital last week they began dropping only after 7hours. With him sleeping too long we never usually let him sleep that long but it was because of him having a restless night, he tends to sleep in if he hasn't had a good night sleep. I sat by his cot until he woke, daft i know but i can observe him and i feel safer. I think now i really do need to take it right back to basics and keep a food diary!!! Thanks so much for all that info Lucky, really really appreciate it! Also, thank you for all the info Charlie! I hold out for your responses than Tyler's own Drs! I get alot more from you two! Xx

[emie]

Abnormally bloated not low, sorry x

[emie]

Hi everyone, just a quick up date! Tyler has been having low blood sugar a lot recently due to not eating much. Drs have decided to give him corn flour in his milk. I have now swapped milk for oatley milk to see if it helps to settle his system. He is in a right mess to be honest, he is constantly pale, upset and moody! His diarrhoea has become even more explosive, especially after giving him the sos twenty glucose drink to bring sugars back up. Good news is that they are testing him for the fbpasse deficiency too! I have opted to give him porridge (plain) for tea and cut out as much dairy as possible for now.. Will see how we get on! X

[lucky]

Hi Emie,

While you are waiting for results from various testing...

1./
What's the timeline on some of these tests?
(-That might be a cause for current dramatic symptoms-)


Fructose Hydrogen breath test:

- Only analyzes chemicals in breath after drinking a fructose solution. Done on a fasted (empty) system.


Fructose Challenge:

- Essentially a Fructose Hydrogen breath test but this time tested under the careful supervision of a metabolic team. Blood / urine etc now also analyzed. Must have a protective iv during testing.


- If either of these have been recently tested (and on an already raw system) it may account for a more volatile system. My son was extremely sensitive / ill for about 3wks after his initial Fructose Hydrogen Breath test. Others have reported up to 1mo, if I remember correctly. I assume it is a result of putting more fructose into an already overwhelmed system.


Fasting test:

- The upper two, along with the Fasting test all need to be taken on a fasted, empty stomach. This eliminates food as a potential buffer (as it may mask clinical observations). The Fasting test (like the Fructose Challenge) is performed under heavy metabolic care, and also with iv protection. It specifically tests the strain on a body while fasting. This can show potential weakness in the body's ability to maintain homeostasis (metabolic balance between feeds). From what I understand, there are 4 metabolic issues that don't do well under fasting conditions. One also involves fructose as an issue. That is FBPase deficency.

I think you wrote that your son was scheduled for a "Fructose Challenge" and leading up to that had to fast beforehand. I would assume he was admitted over night (because of his age and health) as a precaution. From what you wrote, it looks like his blood sugar started to drop over night and medical staff had to intervene with glucose. If so, it seems like they inadvertently got impromptu Fasting test info out of it too. And as such, probably took bloods / urine to analyze if components showed different than the norm... It is this (alongside a fructose issue) that may have prompted FBPase testing. To confirm / exclude.


* Overnight :: Was your son on an iv as a precaution?

* Did the Fructose Challenge proceed after glucose intervention (that corrected low blood sugar fasting levels)? I ask as in one sentence you mention they couldn't do it because of the glucose intervention (and BS spike). But in another, you mention they checked anyway. Perhaps as an unofficial glimpse? I know you said your son's blood sugar went up quite high (I assume because of the glucose) but then reduced quite a bit shortly after. Was that because of the glucose high / low swing -or- was he ALSO given fructose too and that's the cause (and although not proper testing gave a glimpse)?


* Was your son also given food after the glucose or did they go straight to doing the fructose test (if done)?

- BS swings are hard on any body, let alone a taxed and ill 2yr old. Food to back up a swing helps stabilize the system so it doesn't swing low, high (glucose intervention), then low again. My son always had a hard time with any BS (blood sugar) swing. His body didn't do well having low BS, but did very poorly eating something that made it go high, fast. So he was best kept as even as possible during the day. Proteins and slow releasing (long chain) carbs sustained him to keep his BS as even as possible.

The cornstarch treatment recommended may help greatly with this. The idea is to keep the BS balanced as evenly as possible and especially while the system is taxed (and not balanced long term). AND to teach the body to re-calibrate what normal BS should feel like. If a body memorizes a constantly low BS, it will eventually consider that normal. You don't want that, as instinctual warning signals for needing to eat get screwed up and shorten dramatically.

Normally, I think a person will have a 20-25min cushion time for BS lowering. If one eats, it can take around 10min to correct, leaving a good safety cushion. However, if one's body memorizes a constant low BS as a norm, there may only be, say, a 5min warning. And eating may not correct it in a safe time (because it may take up to 10min to absorb and increase BS). Hence, safety glucose in times like those (for faster absorption and faster BS increase).

But, emergency glucose dosing (while important if necessary) is not a good practice to rely on, permanently, as daily maintenance. Blood sugar swings are hard on the body. So, best to re-train the body to what a normal BS range should be (and how to stay there). That way, BS warning safety signals and timelines also correct to a proper and safe state. Even eating / drinking intervals (and cornstarch supplements if prescribed) work best. Long term.

And this is where BS monitoring helps. We used the glucose meter for a long time to check and confirm low BS suspicions. Later, it was helpful to monitor that the body was positively responding to new diet and chosen eating intervals. When good ranges were consistently seen, we knew the body was responding (and warning signals also re-calibrating for the good). And it was that stage that our son was FINALLY able to learn to self diagnose if his BS was "off". And then we checked to confirm. THAT taught him what BS number ranges went with what feelings. It gave him power to start learning how to self assess... But always with parental oversight.


Our questions were always:

-If I feel grumpy or sad when I shouldn't... let's check BS.
-If I feel tired, shaky (hands/body) or sweaty... let's check.
-Headache or having a hard time concentrating?... check.


Tip:
- In the earlier years, we often played a game of who could guess closer (beforehand) to the BS testing number. Mainly as a distraction to how awful it was having to prick him so often at the beginning. And, I would prick too. Just to make him feel like he wasn't alone (in the inconvenience of pain / bruising). He'd use the meter on me like a doctor in training. And that seemed to bring him great comfort. Yes, we initially went through more testing strips, but it was only for awhile until things settled down and he no longer needed me to also test. It was the least I could do to give him a "buddy system" type comfort he needed. And for him to know he was not alone in it. It made it less scary. And after... we were both known to do a little complaining (to get it out of our system), compare our finger tip bruising... and then... forget about it and happily carry on with our day.


In your son's recent testing:

*Fructose (if tested) may be why you are now seeing such enhanced symptoms. It may have made a very raw system far more raw and unable to balance.


2./
Has Celiac been excluded?

- Earlier, you mentioned your son has Colitis (which may have an underlying cause). And that enzyme testing proved very low lactase enzymes (lactose issues). I would presume an endoscopy was preformed? If so, was Celiac also tested? I ask because many Celiac's have lactose intolerance also as the lactase enzyme is at the top of the villi and sometimes first to be damaged before Celiac diagnosis. Could that be an issue?


3./
Continuing diarrhea:

- At some point, if it as volatile as you explain, there is going to be (or already is) a great risk for dehydration / electrolyte imbalance. Too much fluid is at some point going to be lost. And / OR... chemical imbalance a result. It would also contribute to the pale look you are noticing. Dark circles under the eyes might also be present. But mostly, if an older child or adult can have a bad enough flu to end up in an emergency room needing an iv (to correct ongoing diarrhea and/or vomiting)... so can a young child... and easier... ESPECIALLY if as ill as you describe. And ongoing.


* Was your son on iv for any recent testing?
* Before or after a fructose test (if given)?

* Have your son's specialists considered a correction?
(-to eliminate that as an underlying aggravating factor-)


4./
* How are your son's vitamin counts?

- My son has a hard time with vitamin D. Careful for that as it has some link to electrolytes also becoming unbalanced (leading to metabolic issues... and other important things...). In this area of Canada, it is not part of a regular blood panel. It must be requested separately as an additional add-on to blood testing. It is a nominal extra fee (that is waived if a specialist must monitor it). Regardless of the cost, it should be a mandatory extra one to check -especially in Gastro etc cases-


Have a look online under:

- Dehydration definition -or- dangers of dehydration
- Electrolyte imbalance definition
- Vitamin D deficiency and Electrolyte imbalance


Medicinenet :: Vitamin D Deficency
www.medicinenet.com/script/main/mobileart.asp?articlekey=142902&page=0

Webmd :: Vitamin D Deficiency
www.m.webmd.com/food-recipes/vitamin-d-deficiency

Mercola :: 7 Signs and Symptoms: Vitamin D Deficiency
articles.mercola.com/sites/articles/archive/2014/05/28/vitamin-d-deficiency-signs-symptoms.aspx

Healthline :: Electrolyte Disorders
www.healthline.com/health/electrolyte-disorders#Treatment7

Mayoclinic :: Dehydration
www.mayoclinic.org/diseases-conditions/dehydration/basics/definition/con-20030056


The above links are just samples. Many health issues (temporary or otherwise) share similar symptoms. However, some of the points within each link may bring simple explanation to confusing compounding side issues. And, if signs warrant further consideration and investigation, easy to exclude. Always be cautious of info on the internet (for accuracy) but... as a platform for further research... it is useful.

* If you need more info on vitamins etc and how they relate to an unbalanced system that is under investigation, just private message me. But, be particularly cautious of B12 levels if your son stays on a cracker / toast (or later, pasta) diet for sometime. Meat keeps B12 in balance. And C... If your son is on an HFI diet, he will need it. But too much can also lead to loose stool.


5./
* How far is your son in testing?

- If preliminary testing is done and you are awaiting DNA results for either HFI or FBPase deficiency, I think the earliest emergency turnaround time is 2wks. But realistically, it can take up to 8wks (ours was almost 12wks). So hang on. The whole process takes time.

* Have GSD's (Glycogen Storage Disorders) been ruled out yet? I think you mentioned they were also considering it a possible issue to exclude.


6./
To follow up...


Drinking:

- Lots is good. Extreme is not (due to potentially diluting electrolytes in body). If concerned, ask what amount of hydration (like water) is the norm for your son's size. Or look online as a gauge. It's a calculation based on how much water (fluid) is needed for a person's weight.

Wetting Bed:

- Yes. It is common in young children for a variety of reasons. But... if your son is no longer in diapers, you can consider waking him at night (to go to the bathroom) before you go to bed. However, it has been noticed that fructose irritation on a sensitive system can cause more urinating. We experienced it (as did others on this site) along with occasional night time accidents (at an early age). I think it has something to do with urgency, but being caught in deep sleep (and not easily self waking).

Sweating at night:

- Different than wetting the bed. However, it may be difficult to determine whether urine accounts for all the moisture, or if sweating is also a factor. Perhaps check if upper body, hair or forehead is moist. That could be from sweating (possible hypoglycemia -low BS-). If so, that can confirmed with a BS prick test (glucose monitor).


Hope things are improving now with diet changes and the cornstarch, and today's a better day for your little man.

But if it is not, and your son still fails to show any signs of improvement, please follow up with your son's specialist.

Best,
Lucky

[emie]

Once again thank you for all that information!!! Yes his blood sugars went during the night whilst at the hospital and they had to intervene with both glucose gel and a glucose iv. He was given food and then the fructose to start the fructose challenge. The metabolic team did say the test may not work, due to the intervention and food! But still wanted to go ahead, they have said nothing has showed from his blood but aren't sure how to take it because it obviously wasn't done correct. As well as the fbpase we are also awaiting results for the glycogen too. He was tested for celiac and that came back negative. From his colonoscopy and endoscopy, it was Colitis, low lactase enzymes and acid reflux that was found. We started the corn flour last night and it helped with his blood sugars this morning! Thank you for the information about blood sugar swings, I wasn't aware of any of that!! I am really cutting back as much as possible to try and settle his system because it is so painful for him. I had a friend visit today and while i was changing Tyler she had commented how his poop didn't even smell like poop, just sweet strong acid, not even formed just water. I know his system is going to take time, just because it was sensitive before we even did the challenge! Also, thanks for the information on the hydration, I will look into that too! He does have dark circles around his eyes and has turned really quiet. I can't thank you enough for all the help!!! Xx

[emie]

Also, i was told 6 months ago his vitamin b was low but other vitamins were doing well. However, that was 6months ago! No one seems to be keeping track of his vitamins! :/ I too check my blood sugars with Tyler to make it feel easier on him. He does do fantastic, bless him! Xx

[lucky]

Emie,

1./
Blood sugar swings:

- What goes up must come down... and what is brought up quickly, will probably come down quickly.

So, if emergency glucose is needed, use it. But low blood sugar will go on a quick swing to "high"... and then probably right back down low with a "bang" -unless- food is also given shortly after.

Even eating and drinking intervals help maintain even BS levels and lessen or avoid the need for emergency glucose administration. But, if needed... err on the side of caution and use (if recommended by your son's specialist). Just try and back it up with some food soon after.

And if you're seeing a need to use it often, there may be an issue with diet or food timeline. Keep doctors informed to optimize health evaluation and stabilization.


2./
Watery diarrhea:

- If stool now looks watery, or clear like urine, you need to inform a doctor.


3./
Quiet (and very sick) child:

- Watch out for a weak cry. If it is no longer robust, it is a sign of a body in distress and increasingly weaker. Inform his doctor.


4./
Is your son's specialist aware of...

* Length and state of ongoing severe diarrhea?
* Didn't they asses severity during recent hospital stay / testing?

If not, they now should... if it is as you describe.


5./
Vitamins:

- Maybe review vitamin counts
- Pale skin (and tired child) is also a sign of anemia
(-Vitamin B is important, but also check if D was actually tested-)


Webmd :: Vitamin B12 Deficiency / Anemia
www.m.webmd.com/a-to-z-guides/tc/vitamin-b12-deficiency-anemia-topic-overview

Medlineplus :: Anemia: B12 Deficiency
www.nlm.nih.gov/medlineplus/ency/article/000574.htm


* Acid in the stomach is needed to absorb B12.

- So, the use of antacid or heartburn type medication (to reduce acid) can therefore put one at risk for deficiency. As can conditions that interfere with absorption (like Celiac, Crohn's). Age is also a factor. Those 50yrs of age and older are naturally at greater risk for deficiency.

- B12 deficiency can also be a factor in incontinence.


Best to be cautious till all vitamin counts stay in healthy ranges, long term. And follow up till they do.

[emie]

Hi, well what a frustrating day!! I have been on the phone constantly to try and get through to someone how concerned i was about Tyler's diarrhoea! But what a waste of time! They even tried to say it was a virus! I do know when it is a viral infection or not! The conversation ended with cutting out the corn flour because that could be causing the even worse stools. I tried to tell them that i thought he was over drinking etc, but all i got back was that this was a good thing and not to worry. I will watch him like hawk over the weekend and any changes i will take him to a & e !! Thanks again for the support! X

[lucky]

Emie,

Just looked into vitamin B.

If your son was deficient in B1 (Thiamine) 6mo ago, it really should have been reassessed by now (or treated and reassessed). Are you aware that a deficiency in B1 (Thiamine) can contribute to ulcerative colitis and ongoing diarrhea? If your son was low 6mo ago, he may be lower now.

* When did your son get the Colitis diagnosis?
* Within the last 6mo?


- Perhaps the B1 deficency is still an issue and contributing to your son's volatile Gastro issues...

Maybe confirm the blood work from 6mo ago, and ask for a reassessment.


MedlinePlus :: B1 (Thiamine)
www.nlm.nih.gov/medlineplus/druginfo/natural/965.html

[emie]

Wow, i never knew that! His diagnoses was at the,same time his vitamin results came through too!!! I am so shocked to why they never bother about his vitamin levels! I asked if they checked his iron and when she looked, there was nothing there! (not been done!) They thought due to his pale skin/ dark circles it maybe due to low iron, but haven't bothered to do it/ re take! I will request testing next week! I despise phoning his consultants/ dietitians because i come away feeling like a fussy mother! I have always fought to be heard by Drs and still struggle now! I am only 22 and look a lot younger!! It has been a major downfall for myself for never been taken seriously! 'your a first time mum' etc. Last year i had a dr tell me i was stupid to think Tyler had Colitis.. He was diagnosed this year by Sheffield hospital, which is at the other side of the country for us. I always knew something was wrong and decided to look further a field for help. So glad i did or god knows what Tyler would be like now! However, i still do get brush offs from time to time when they really have no idea on which way to go. X

[lucky]

Hi Emie,

You are a young mum, aren't you... Congrats!!!

Just remember that age has no relation to instinctual "mommy radar". And no one is to let you feel inexperienced because of it.

You are a mom like any older mom.
You do the same for your child on a daily basis as all other moms.
There is no difference.

A responsible, caring and/or concerned parent is without age barrier.

And I would be right pissed if my/your age was considered a factor on being taken seriously.

For goodness sake, if a child has an issue (temporary or not)... a child has an issue needing resolution. That's why we go for help. Help from those (like doctors) more experienced and able to decipher what is normal, and what is not in child health / development. That's why we have doctors. And that's why when doctors don't have an answer they refer to specialists. To take things seriously... and get answers.

Regardless of age of parent. Sometimes %@$# happens with kids.

And what, medical issues are only reserved for children of older parents? Because age of parent somehow = experience?

Pfffft.... no. Experience = experience.


And, sometimes... kids come with "surprises"
And experience must be gained at lightning speed.

So continue to be as strong as you seem.
Stay open to what doctors question or request.
But, if something seems wrong...
Be the polite parent that also gets heard.

And forget about narrow minded or intimidating people.


A happy, content child is a thriving child. But, when a child is anything but... there is a reason. And it needs to be investigated.

I was very close to your age when our oldest had issues in infancy. Dear God was that child a roller coaster ride. Who's prepared for anything like that? -regardless of age-. NO ONE. But... you lean on those you can, get really serious quickly, and continue to learn what's needed (by doctors) to bring your child back to health. Just like you are doing. And clearly doing REALLY well if your son is on specialists' radar. BRAVO.

You learn that when you need to be strong, you are.
Truthfully, though... there is usually no other choice.

What you (like the rest of us) learn by the end of this journey, is that a mother's love knows no bounds... and you will observe and/or learn whatever you must to restore health to your child.

Don't let anyone initially asses your child's situation by your youthfulness. They work for the patient. Your child is the patient. Your age is irrelevant to symptoms seen in your child. The symptoms are either there, or not. Healthy or not. Whether genetic issues (and in metabolic distress) or simple illness. Or even "off" vitamin counts...

But for today... if he is sick, he is sick. And if diarrhea has ravaged his system, it needs to be swiftly corrected before things have a potential of getting very dangerous.

That being said.... hang on, honey. The hard stuff with drs is over.
You're doing a great job.

The simple fact that some of these metabolic tests have been done, and others pending, shows that your son's situation is now being taken very seriously. And the timeline for answers will get better and faster. You're almost there.

In these situations, there is a nasty tangle of medical stuff that needs to be addressed and assessed, one by one. One section at a time. Honestly, answers are often only found through elimination. And it takes time.

Goodness... there were so many times I was beyond emotionally exhausted and at wits end with fear and frustration. Frustration that everything took so long. And fear for our child's declining health.

And I didn't sleep till life calmed down.

What I learned was to try and keep my head clear. If clues or patterns showed, I would ask if doctors had guidance. Did they want/need anything specific from us to help the process along? Were we missing things that maybe we saw but didn't understand enough to mention? Did they want us to try this, try that, or look for certain things? How could we help them? How could we help our son, better? What did they need from us?

So we listened, did what they asked, logged info daily, and later reported back. If we saw patterns we told them. If not, we told them. Exclusion by this process... which led to clues on what tests needed to be done... if for no other reason than to exclude certain paths of investigation.

Reality is that the hardest hurdle is at the beginning. Doctors have to go from a broad spectrum of all the common childhood issues / illnesses and eliminate those. Then narrow a search... then again... then again. And only then are you referred up the chain to a higher specialist - who then repeats that process within his/her specialty field... to either find something or not through more assessment and again... testing. And when cleared from that dept... perhaps you are sent to another... for the process to repeat once again.

Simple things like following up on previously tested issues (vitamin counts) accidentally may get missed. Or, a specialist may not even be aware of one outstanding (if tests aren't forwarded / shared with each other). Or... simply... one may think another specialist already handled it. AND... no one did.

Our son ended up in years of general and paediatric observation and testing... before the serious hospital stuff. But, by the time he was referred to higher specialists in a Children's Hospital, everything went rather quickly. And almost urgently.

First, were Hydrogen Breath tests for fructose, lactose, and later glucose (not for blood sugar but for SIBO -small intestinal bacterial overgrowth-).

Then, to Gastro, Genetics, and even later Mitochondrial and Neurology. And later, Exercise Medicine (when totally healed and regaining endurance). From DNA testing for HFI, FBPase deficency, cursory GSD testing, blood tests for soooooo many things (including Celiac and far beyond), to a Fasting Challenge, Fructose Challenge, and Protein Challenge.

And then... Mitochondrial testing (thigh muscle biopsy and skin biopsy to ensure issues were not originating from a cellular level).

And in between those... testing the lungs (asthma from earlier pneumonia), heart (chest pain), brain (2 seizures) etc because of worsening symptoms (-however, those last two now seem as symptoms derived from dehydration / electrolyte imbalance).

There was strategy in all of this as specialists knocked off one issue after another, but the waiting times for DNA tests were the worst as we had to wait for results in order to know how to proceed... It felt like a very long, lonely uphill battle.

So I understand exactly where you are right now. And how emotionally and physically drained you must feel. We all do on this board. But, actually, you're most of the way through this journey (even if it doesn't feel like it). Things will improve soon. But first.... first you need to get your son's stool corrected. For safety. Pronto.


So....
* Only if your son is BETTER or more stable than yesterday *

What I suggest for you is to go have a nice bath / shower / steam. Have a good cry to let all the stress out. It'll be really good for you. Life with a child should not have this much confusion, stress, and medical uncertainty. The pressure on you (and at your age) must be absolutely overwhelming at times.

As a parent, you should only have to worry about regular things and just be tired from a long day of being a mommy. And your son should be happy, healthy, comfortable... and at the very most... mischievous at this age. That's it. That's parenting a 2yr old. Not the rest of this crap.

So as long as your child is stable,
Go take care of yourself tonight.
Have a sleep.
And tomorrow....

Take your son in to the hospital for review. If nothing else but to evaluate (and possibly iv correct) this horrendous ongoing diarrhea.


BUT...

* IF your son is as BAD or worse than what you posted yesterday, forget getting a good night sleep. Just go into the ER. You'll get results. And rest easier knowing he's in good hands with emergency room drs. *


Don't know if this will help, but we were always told --if ever needing to go to the ER-- to mention that our son was under investigation for potential metabolic disorders. No kidding. Once you spit that out in the emergency room (and calmly detail the name of his specialists and what genetic testing results you are awaiting)... your son will undoubtedly be seen within minutes.

Perhaps just explain that you are concerned after additional recent testing (fructose) that his stool can not be stabilized and you very much worry about dehydration / electrolyte imbalance (at the very least) as he was already bad before and now far worse (and also quiet and -lethargic(?)-) after the latest testing.

* Plus, mention his new trial diet restrictions and medications (*confirm if fructose free and not just sucrose "sugar" free).

And... that, upon reflection, recently realized that your son had blood work taken 6mo ago that showed some irregularities like vitamin B deficiency. But it was never followed up on by doctors. Most likely, an oversight. But it may still need correcting.

However, after looking into it on Friday, unfortunately you also learned that iron was not tested either at the time (even though you thought it was because of anemia concerns). So, this now makes you uncertain as to how comprehensive that blood test was 6mo ago, and if any of your son's new specialists are aware there may be a missed issue. Until today, you (wrongly) thought his blood (including iron) tests were ok. And your son's specialists may also be under that same impression (and you'll will have to later follow up with them to confirm if this is the case...)

But, because your son is ill today, still... If possible, you would appreciate if your son's blood work could be fully assessed to know if he now has some imbalance (electrolyte, dehydration, vitamin or mineral deficiency) in his blood, currently, that may also help explain some of his long term ill health / paleness, and ongoing (and lately even more severe) gastro state. Because, if you can just get his stool balanced, then perhaps the current new diet will work and be easier to properly evaluate.

* The reason :: If the stomach or bowels can't handle anything, at all... then new diet can't also be properly tested, either. Because no food works. It just irritates. So, if oral hydration to correct doesn't work, iv correction may be necessary.

* Mention :: With all recent Metabolic / Gastro testing in different depts, you also now realize doctors have not since followed up with you if any correction or retesting was necessary. And that's on the vitamin B alone. But you will also really need to know iron, as that was accidentally not even originally tested. And that concerns you. (If vitamin B12 -because of antacid meds- and vitamin D are not added to the new blood test, ask if they can be).

And now, whether currently ill from a virus (or from fructose testing), vitamin / mineral deficiency, potential genetic issues, colitis, or food intolerance -- you are no longer comfortable with his health at this state and feel you may need help from doctors to stabilize him (his stool). And if possible, to re-evaluate his health and blood counts as of today (in the ER) to ensure his safety. In case it shows he is actually in some type of metabolic distress you are unaware of (or simply very ill with a virus).

Any labs collected (blood, urine) may also later give specialists a glimpse of how your son's body is reacting today, under stress of illness. Ask to have copies (of ER tests taken) sent to your son's specialists. All of the specialists -- so everyone has updated info (if they aren't already doing that every time you see a different doctor in a different department).

* Simply put.... Diarrhea is not normal. And not safe if this extreme -and- ongoing.

That should help in admissions.
Be polite though.

If you bring him in to the ER, it may be the best thing for him. Ask if they would be kind enough to check his blood and vitamin counts along with whatever is normally checked. And tell them how long he has been this ill with extreme diarrhea. You may be used to loose stool as a norm, but it may cause concern for the attending physician. If they hear what you've told us on this site, I'd be shocked if the ER didn't take the situation seriously and check everything. That's what they do in the ER. Triage and assessment. Because if you go in there and they miss something or choose not to take a situation seriously, the legal ramifications would be terrible if something were to happen afterward.

Sometimes a new set of eyes makes a big difference.
So go. And bring all your son's current meds with you.

If you find yourself nervous tonight... go as soon as you're able. Listen to your mommy radar. Err on the side of caution.

-xo

[lucky]

Emie,

Just remembered...
Before understanding my son's issues with fructose:

When my son was young, he also had to be tested for other peripheral issues to try and explain diarrhea, acidic digestive system (needing antacid meds), and unwell health. In that timeframe, he was also often ill (strep) and needing antibiotics.

Doctors tested for:

* "toxins and parasites"
* C. difficile

In our case, C. difficile (C diff) was mainly tested because of the antibiotic use. The concern was that our son's gut bacteria could have been stripped by the antibiotics, and if so... may have been the actual underlying cause of his ongoing Gastro issues at the time. Neither were issues in the end.

But, C. difficile was a concern that needed to be eliminated as it can be picked up other ways, too.

Risks = antibiotic use, Hospital visits, hygiene (stool)...

Do you know if your son's been tested?


Here's some info:

MedicineNet :: C. difficile - Get the Common Facts
www.medicinenet.com/script/main/mobileart.asp?articlekey=317

Phac :: C. difficile (-Clostridium Difficile Colitis-)
www.phac-aspc.gc.ca/id-mi/cdiff-eng.php

LabtestsOnline :: C. difficile Toxin testing
labtestsonline.org/understanding/analytes/cdiff/tab/test/

[charlie]

Hmmm, Emie, if the diarhea has got worse since starting cornstarch it againg could be pointing to a starch enzyme deficiency. Have you had any answers yet from Sheffield?

[emie]

Hi everyone, sorry for the slow reply had,an awful few days! First, we were told to take Tyler off the corn flour to see if it helped his horrendous diarrhoea, which it did! But low blood sugars returned. I have learnt Tyler's ideal sugar is 5.2. Anything lower than 4.4 he is very symptomatic! I know 4.4 isn't classed as low but his cry is 'weak' and he wobbles when standing! All weekend we had readings from 3.3, 3.8 and 4! He then came down with the stomach virus! One word = nightmare!!!! After all that, i rung the gp desperate for the prescription the dietitian promised (glycoside?!) but because my dietitian wasn't available we didn't know what dosage to be giving Tyler! It is now Tuesday evening and i still haven't had a call back to find this information out! To make matters worse, my gp informed me she had rung the lab at Sheffield to find out Tyler's liver results (he needs watching because of his medication) they had told her they have no blood counts for Tyler and they need doing asap! But when i had spoken to the metabolic nurse she was reading results to me, showing very little so far. (either the lab is wrong - which i highly doubt! Or they were reading old results from May?!!) Either way i am disgusted and out raged with this mix up! Only my son's health their playing with?!!! Finally, i too came down with the stomach virus.. So all in all thumbs down at the moment! Thanks for the replies Lucky and Charlie! I think starch is an issue too :/ That message you wrote brought tears to my eyes Lucky, thank you!! I have never had any support or true understanding.. Until now! So thank you!! Xx

[emie]

Also - he has never been tested for c dif or parasites ! :/ x

[charlie]

Oh Emie, you hang in there, I hope you feel better soon, bugs are always harder when they have other things going on and then you go down with them because you are so knackered...... Been there, got that T shirt. Doesn't help you now, but that does improve as they get older.

I can so empathise with hospital cock ups, when Meg had her HFI gene test they lost the blood, then they lost the results and were going to take more blood until I used my common sense and rang the other hospital and they had them.......

I am just so sorry your little one is suffering so much I hope he picks up. Whenever Meg is poorly our go to food is always chicken, when she was little I would roast a good quality (not these cheap budget chickens as they are injected with sugar water......) and roast them, use the stock for gravy, liquidise some of the meat in it for chicken mush then boil the carcass for more stock. If his blood sugar is affected then feed him little and often every few hours.

Now, you take care of yourself too, you need to be peak performance to cope with this so make sure you eat well too. Hope you all feel better soon and get some answers.


Does he have bacon, eggs, there is a lot you can do with those and chicken.

[emie]

Thanks Charlie, i will be phoning 2moro to see what the hell has happened with these bloods! We are still hanging in there, you sort of get use to it don't you. Just hate seeing him more ill etc. Yeh he loves chicken and bacon, not so keen on eggs, but eats small amounts. He has been eating a lot of chicken and plain rice recently which has helped! His stools were a little more settled today. To anybody else his stools would seem bad but for Tyler they are much better! We have just laid on the sofa today reading books, he has been looking after me today the little star he is! X

[lucky]

Emie...

Wowwwwwww....
Just no other word applies.

So, the blood test results recently quoted "may" have been stale (outdated) results from last May? If so... THAT'S-NOT-GOOD. Especially when your son is on medication that requires liver monitoring. AND unwell. AND lately, with a distended (bloated) tummy.

I hope you can get into the doctor's office soon and retake blood work to accurately guarantee his most current state. Be prepared, that may now be necessary as your son's blood counts may have *again* changed even within the last few weeks (since this "lost" blood work). Hope this gets resolved soon.

The reason I mentioned full blood testing (including vitamins, toxins/parasites, C dif etc) is that without excluding other possible and more "simplier" issues, sometimes, little can be resolved for today's current health. It takes awhile for metabolic results to come in, and in that time -and with an unbalanced, ill child- much has a potential to slide even more in health.

C diff may actually be an important one to consider excluding, as your son has been in and out of the hospital often -and- with a recent endoscopy/colonoscopy. Any admission and or procedure can increase an exposure to it. And although your son has Colitis, this also seems to cause some type of Colitis too.

CSID :: would be a very reasonable issue to address.
(-Charlie is very wise-)

* Is your son's General Practctioner (GP) following up with you tomorrow re: blood work?

* Did your son's GP at least examine him today?
(-Or... did you only just discuss over the phone?-)


You are among many here who care...

Try and rest when you can.
(( HUGS ))