So pleased to have found this site!!

[emie]

Hi everyone, i rung my dietician today to try and sort all of this MESS out! She has sorted the glycosade out (think that is what it is called!) so i am hoping Tyler doesn't react to that! When i asked about his tests, he never had his LFT's done!!! I was beyond out raged because it was 'forgotten' so will be sorting that asap! GP said she will contact me once they have the specific 'tubes' to test with for us to come in and have it done. Still means waiting yet again and it was his liver function test i was needing/ worrying about the most! Grrr! Also, wondering if you two might know if prawn crackers from a Chinese shop are ok? My partner had got some and asked the Chinese lady if they contained sugar, she was adamant they didn't so he gave a few to Tyler. ( even when i said not to!) Tyler was over the moon and had to tell everyone he was eating crackers, bless him. He now knows he can't have very much ? Anyway, this morning he awoke at half 6 and his bedroom stunk of what i only could describe as 'fried food' sure enough he had, had a really bad bout of diarrhoea!! I mentioned this to the dietitian and she slammed me to the ground! Because i had said if Tyler eats fried food he reacts, well that can only happen to adults apparently! Very confused now!! ? Could fried food have an affect? Or are prawn crackers a no no anyway? I just feel like they are not watching over my son's health enough, not testing enough etc. He has had low blood sugars too often and diarrhoea, but still i get fobbed off with rubbish! I know everyone is waiting for dna results but surely simple tests for c dif, parasites and basic LFT's can be done?!!! Xx

[lucky]

Emie,

I'm going to be blunt.

If your child is ill...

And I mean seriously ill. The kind where you fear he is not stable. The kind that does not have him walking around with mild to moderate energy. The kind where he is mainly laying down, sick -- SICK. The kind where he is drained and looking like his system is barely hanging on (or slowly now on the downside of giving up)...

Go into the doctor's office. Call them. Say you are coming by to pick up the damn blood test requisition and also expecting to have bloods drawn the same day.

At this point, it is irrelevant who lost whatever forms or results. If iron (and other simple blood markers for vitamins etc) have not been done... Have-them-done. If a Liver Function test (LFT) is needed... Have-it-done. If other potential issues (toxins/parasites etc) or C. diff or other not done? Have someone evaluate it's need to see if they should. Chances are, not all these above can be done at once anyway. It may be too much blood taken at once. But liver and general blood work can.

I don't understand the issue.

If you need the liver panel tests (especially) because of current medication, why is this not the GP's priority today?

* IF your son's GP is not proactive, CALL your son's Genetic/Metabolic doctor or leave an urgent message detailing the situation and that you need to have, if nothing else, the Liver Function test -AST/ALT(?)- ASAP because of his meds (and because they were not taken before). Our Gastro specialist usually handled this monitoring. But... barring another avenue, if your GP can't write out a simple blood test form (even for regular iron, vitamins etc) question why... and then tell the GP you'll have to follow up with a specialist. Or go into a hospital. In an ER, there is no waiting months for specialist appts. Patients get the care they need from whatever specialist (within the hospital) and on an urgent care basis. Specialists and tests go to urgent care FIRST as a priority. We've seen this ourselves. And have excused a specialist who has gotten unexpectedly called away to consult on a new patient brought into an ER.

Now.... if your son is fine....

And manageable. And with half speed of regular daily energy. And looking good compared to a healthy child. And laughing (even at times). Then.... maybe things are not as dire as your posts imply. And that's good. It's all about today's safety.

BUT... even so. If your son's meds need liver monitoring and it has not been done, get the paperwork to have it done... and-do-it.


* Who authorized the meds to begin with? That same doctor, THAT day, should have given you a requisition form for follow up blood work. And info for what intervals (and paperwork). Call THAT doctor.

[lucky]

On the topic of food...

If you tell us what recent foods feel safe for your son, maybe we can offer some cooking methods (in detail) to accommodate his needs for today's health.

Sadly, I know what you are saying about the cracker making your son so happy. At some point, my son was the same. It breaks your heart to see how happy a new food can make a child. But if it makes him as happy as if he just got the greatest gift.... please tell the specialist. It will give a clue to the state your son is in.

This isn't all physically damaging. One has to also be careful for psychological damage too. And when illness gets to this level, care needs to be taken.

Food is the first comfort we have in life as a newborn. So, when it gets to the point of not trusting food, or our own body... that can shape him from this point on.

When food is as excitedly revered as a special new gift (toy)... that's a sign for every specialist as to what level the patient is at. And that diet/health needs to be stabilized, soon, to reduce anxiety/worry and regain sense of self (comfort, self confidence etc). You want to raise a child who feels safe. And curious. Not frightened.


* Do you know how to make a dense chicken stock / soup?

- I can detail an inexpensive way if so. It may help to settle his tummy, give liquids and bulk from super moist meat. I know your son is lactose reduced. But can he have wheat? I have a recipe for two kinds of quick noodles that are made in 3min (and cooked in another 4min in soup). One uses egg and flour, the other, egg and Cream of Wheat. Each make soft, tiny little noodles the size of peas. That, along with soft chicken (in soup stock) I think might help a lot.


* Fried foods badly irritate a raw stomach.

- The dietitian should have just warned you, not scolded you. And perhaps that dietitian should also give you recipes... instead of just telling you what not to do.

Let us know how we can help.


Cream of Wheat :: Plain
www.creamofwheat.ca/en/products/

[charlie]

God, how frustrating, but sadly that is how it often goes. As Lucky says, make a complete nuisance of yourself, it is outrageous.

On the topic of the glycoside, have they decided on GSD then? confirmed by tests or suspected still? Its just that if a starch problem is going on then it could make it worse:
Each 60g sachet of Glycosade has an equivalent carbohydrate content to approximately 55g of uncooked cornstarch - See more at: www.vitaflo.co.uk/products/metabolic-disorders/carbohydrate-metabolism/glycogen-storage-disease-gsd/glycosade/#sthash.FhDVbQOb.dpuf

Could overload his starch tolerance? I don't know, don't want to pre-empt diagnosis but you are at such an unstable point in his diagnosis and the diarhea from starch malabsorption is horrible, it stinks and used to burn Megs skin. Then his hydration levels as Lucky has said will get even worse.

Prawn Crackers, I'm afraid I have yet to find any in the UK that are sugar free so steer clear of those.

Lucky: can I have your noodle recipe please, it may be low starch enough for megs to have as I am steering clear of rice for now and the only safe ones are rice ones.

Emie: have you tried cous cous if he is ok with wheat, I am giving more and more to Megs as it is lower starch and so easy to make, she seems to be doing very well having it at lunch with different meats mixed in.

Let me know, and Lucky, where he is with foods that he will eat and maybe we can between us get him on a stable diet. I forget, can he have milk?

Oh, and dietitians, don't even get me started on those, we have been waiting 6 months for even an appointment date but the one we saw 3 years ago was useless, she told me Meg would be ok on bananas when they suspected HFI...... the only reason I want to see one is to get a grip on the starch issue....... Maybe........

Anyway, hang in there, good luck

[charlie]

Emie, how are things going.

I have been having another look at GSD, as I said it was something they looked into for Megs due to her lack of energy, concentration and blanking out but it was negative. But..... I cannot see diarrhea being a symptom in any of them......

www.agsd.org.uk/

[emie]

Hi everyone, sorry for the slow reply! Been quite hectic with a lot of things! Over the last few days Tyler's system has settled right down, he hasn't had low blood sugars for about 5 days now and seems a lot brighter/ more energetic! I was about ready to take to my bed last week! I felt i was having to choose between Tyler having low blood sugars and acid burning diarrhoea (i know the low blood sugars are more dangerous) but as a mother it felt awful knowing that the corn starch would cause him pain and without would cause low blood sugars ?? However, we have changed his super routine and for the last few days it has worked without having to use the glycoside! Yeyy! His stools have calmed down (still loosish) but fab for Tyler! We have had his LFT's done and awaiting results. Still no word of on his DNA results. (so frustrating) My only current concern is this constantly bloated tummy! So many people comment and when you feel his tummy, it is rock solid! It has the 'pregnant' look about it! It starts off flat during the day and as the day goes by it becomes huge! I have mentioned it to his consultants so many times but none of them know why and because it isn't painful for Tyler, they won't look into it ? Anyway, at least everything is a bit more settled and i also sorted Tyler some vitamins! ? Hope everyone else is well?! Xx

[charlie]

Hi Emie, good to hear things are improving for you, you must be shattered. I remember those early days and the mental and physical exhaustion of it all, the not knowing, the tummy problems, the diarrhea...... Meg had a very bloated tummy, luckily I have a photo of it at its worst so I can show anyone new involved in her what it was like and that has been really helpful in getting taken seriously so if you haven't, get some piccies.
I do so hope you get some answers soon, but in the meantime obviously keep doing what you are doing, it seems to be helping, and make sure someone looks after you too, even just for a tiny bit of the day.
What vitamins are you using out of interest?

[emie]

It has been really hard! ? Thank you, it is nice knowing i am not alone! I have showed them pics and they say 'wow that does look bloated' my response is well shouldn't we be looking into it then?!!!!!! So frustrating! His vitamins are the ketovite because they are sugar free xx

[emie]

Also, from your personal experiences what could be causing his bloating? We have excluded celiac but could it be his Colitis?! So frustrating! Seeing the gp tomorrow so will pester her with it again!! X

[lucky]

Hi Emie,

My son also experienced vicious acidic stool that burnt the skin on his inner buttocks. He also had the "Buddha" belly look. Very distended (almost pregnant looking) and very taut (hard). However, all disappeared when he started eating the HFI foods that suited his digestion. And as his system healed over time, it became a rare occurance.

However.... in the early years of investigation (when C diff +++ was also being ruled out) a probiotic digestive product was tested on his system. And with wonderful results.

Probiotics are often recommended for regular digestive issues or illness. But in my son's case, it was used to restore proper gut bacteria balance due to potential antibiotic over use (strep throat). This was before learning about his fructose issues.

So I CAN'T say this approach is HFI safe.
(-As my son is *not* HFI-)

But maybe it's worth exploring it (with drs) as a possible treatment for the bloating, diarrhea, and digestive issues?

There are two brands recommended by our specialists:
* BOTH NEED TO BE CHECKED IF HFI SAFE *

1./
PROBIOTICS :: * Confirm if HFI safe *

* FLORASTOR :: www.florastor.ca

* BIO GAIA :: www.biogaia.com


Florastor ::
- This was a product my son used 7yrs ago. It was very effective and stool corrected promptly.

BioGaia ::
- It has been recently suggested (to us) that this product has even better results than Florastor.


- A year ago, my son's specialist recommended considering (at any time) re-doing another course of probiotic treatment (as a final boost to his now stronger system). Apparently, restoring proper gut bacteria (or boosting it) has also shown to be able to increase tolerance to fructose (among other things) in *non* HFI kids with sensitivities.

Obviously, this can't increase fructose tolerance for those with confirmed HFI (as there is a genetic enzyme deficit). But, as long as it's HFI safe, a healthy gut = healthy person.

Because there are so many on this site with children in digestive distress and -NOT- HFI confirmed, I thought it might be worthy to suggest looking into....

- Also, I believe products as these are now also being suggested by paediatricians as a back-up when antibiotics are used.

Antibiotics work by killing bacteria, but they don't understand good bacteria vs bad.... so they just kill everything in sight. Hence, if they work really well (or far too well) they can throw the gut bacteria way out of balance, leaving not enough good bacteria in the system. These products replenish good bacteria in the gut. However, the best approach (to prevent future gut issue) is to take it while taking antibiotics.

- Many years ago, we were told that one tiny Florastor packet contained a million healthy bacteria. And each packet equalled eating the probiotic equivalent of 100 yogurts (if I remember correctly). But remember, using this type of product (and for how long) should only be evaluated and then guided by medical professionals.


2./
Tight / Bloated tummy
( "Buddha" belly )

- You found a clue.

Although a tight distended belly can have other issues causing it (unhappy liver, severe constipation etc)... It could also be from gas. Lots of gas.

The clue is that your son's stomach is less (or not at all) distended or tight (hard) in the morning (after a long night fasting) but increases during the day. Food or liquid (or both) OR meds can be the culprit. If all foods, liquids and meds are safe (which they might yet not be) ... and all other issues have been excluded (dehydration / electrolyte imbalance, C diff or other +++), then... maybe it's a lack of gut flora (good bacteria) causing the gas (diarrhea etc).

Basically, if the gut flora is unbalanced, the system will struggle in all digestion.


* Is lactose still consumed?

- If so, a child with confirmed issues will produce a lot of gas (and therefore have a taut belly). This would be an additional reason why his tummy would increase in size during the day.


3./
Stool...

Great that it is getting better!

But if it looks more "fluffy" than smooth, then that could also be a sign of lots of gas, too. That, and a fibre issue.... but... one thing at a time.

Good luck at tomorrow's appt.
Looks like your son is doing waaaay better.

BRAVO !!!

Now remember to be kind to yourself also.
Rest and eat.
And smile.

Sounds simple to others, but when your world is still in flux, it can be a challenge.

And... lastly...

Go get a hug from a loved one (partner, son ++).
It fixes all that's stressful in life.

And it feels awesome.

-xo

[charlie]

Emie,

the bloatedness with Meg was gas but also with FM and CSID if the sugars and starch stay in the intestines in the wrong form for too long they draw water into the bowel and this is what causes the gas and excessively watery stools. If Meg hasn't taken her enzymes for starch and has too much, or sneaks the wrong food I can see her tummy bloating almost in front of my eyes, plus the whole of England can hear the gas.....!!!

There is a good tool site called cronometer that Laura pointed me in the direction of. I always forget to write stuff down and it helps with the maths too. www.cronometer.com You can set it up to record fructose, sucrose, starch etc and then key in the amounts of food that he has and it records it for you so you can look back over days to see if there is a pattern. It is American so not all the foods are the same but once you get the hang of it it can be very useful and seems to be pretty accurate too.

Any news yet on anything or are you like us, still waiting for the elusive appointment.

[lucky]

* HYPOGLYCEMIA :: Cartoon Identification Pictures *


Hello all,

* Children's Hospitals often use picture diagrams like this for young children.

* Just explain the meaning of each picture, and your youngster can point to which pictures (if any) match.

* And if your little one is feeling great, he can just flash you an awesome smile and say so.


My recommendation is to make a few copies.
(using this picture -or- google: hypoglycemia cartoon pictures)

1. Keep one in your purse (or car glovebox)
2. One at your son's daycare / preschool
3. One on your fridge

At home, the fridge copy (at your son's eye level) allows (and later reminds) him to learn / identify potential feelings during the day. Over time, as a teaching tool, it helps your little-one develop important self awareness, identification, and proper correction skills.

* Pictures make for an easy form of quick communication for a preschooler / child.

So, diagrams like the below give a sense of power to a child... which is necessary and rightfully deserved. And with input like this, it is far easier to track health, modify diet, and frequency of meals & snacks to compensate. This is especially important in cases of longer fasting times between meals (as they age), increased activity, illness, minor fructose exposure etc ...all of which have potential to cause blood sugar fluctuations.

Identification is the first step to prevent potential undiagnosed or unrealized hypo incidences.

But remember -HFI or not- a body's blood sugar level is best stabilized with even eating intervals.



Note ::
Members can view the attachment (picture) below in full size.
Just sign in...

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[emie]

Hi, isn't it weird how things can change in a matter of a few days?! We gave Tyler porridge for breakfast on Saturday with his own milk to see how he got on.. Well wow! We have gone right back to serious bloating, pumping, acid diarrhoea (three in half an hour this morning!) he has cried all today just about and after many different phone calls we have been fast tracked to Sheffield in the next few days! Thank god! Because they think Tyler has metabolic and gastro issues , they don't actually know what we need to be doing with his diet! I now strongly believe starch is an issue! He has been complaining of leg pain as well which is odd?! Linked?! I have not seen him cry like he has today for a while! He woke at 5 this morning with a 'fluffy' diarrhoea and it's gone on like that all day. I took everything in you both said, which i really really appreciate and explained to his gastro nurses these points i am concerned about etc. Very thankful and big sighs they are fast tracking us to see his consultant! I have my diary's , pictures and mouth ready! I can not and will not see my son go through what he did today again! Thanks for the on going support! Xxx

[emie]

I have also listed both of your points for me to ask about so thank you for that! It might actually help point them in the right direction for once! Also, thanks Lucky for the Hypoglycemia tip - i shall be using that, what a fab idea!! x

[lucky]

Emie,

Remember that many symptoms can be similar in a variety of issues...

But...
You mentioned seeing a new symptom -- leg pain --


Dehydration / Electrolyte Symptoms:

* Leg pain / muscle pain *

- Also may notice knuckle cracking sounds in small / large joints

These above (and others) can be signs of dehydration / electrolyte imbalance (in an already ill child that has experienced a fair share of digestive issues and diarrhea). Please mention this to your son's specialist to exclude.


Also watch out for some potentially sneaky signs...

1. Light headedness (when going from sitting to standing).

- In a 2yr old he may just stand, pause a moment, shake his head to "shake it off" and then go about his business. You can ask if he got dizzy / woozy or if eyes got blurry or he didn't see for a moment.


2. Tender scalp (soft spot)

3. Heart palpitations and/or occassional sharp heart pain

- A 2yr old may just touch his chest an say "owwwweee" or in the case of a sharp pain, may look shocked and then cry from it.


4. Seizures

5. Faster or irregular breathing (I saw during sleep)

6. Slightly warmer skin or flushed looking cheeks

7. Tiredness

8. Gastro / digestive issues

9. Dry mouth / dry inner nose / scabs on inside of nose / bleeding nose / scabs on side of mouth (outside edge of upper/lower lips)

- Scabs on edge/corner of lips can also be a sign of acidic saliva pooling (irritating tender tissue) or vitamin deficiency.

- It takes a tremendous amount of fluid to keep proper moisture (humidity) in the mucos membrane areas.


* The above are just samples of symptoms. Please look further into Dehydration / Electrolyte dangers and symptoms if the previous links (earlier in this thread) didn't mention all possible symptoms fully. Your son needs to be assessed. Please mention the symptoms you have noticed till now... and also new and confusing things recently seen. Like with this recent leg pain, you may be seeing other clues and not yet realizing their potential significance.

My son had all the above issues. All were corrected by iv re-hydration. It was the first important step to his health permanently improving / stabilizing.

[lucky]

Emie,

I know you've been making calls to expedite testing, but has your son recently been seen by any doctor to be visually re-assessed? A lot of clues can be seen visually by a doctor (along with your new observations). Much can be missed just by phone consult -or- by just vainly trying to explain issues to a nurse over the phone (who, for you, seems to decide next testing steps).

Glad you've been fast tracked.
Hopefully your son is seen very soon (as in days).

If not, he needs to be visually (not by phone) assessed by a doctor (for an appointment) in the interim. That's important so that everyone knows his current state of health. And if it is worse than they have logged, the new assessment may even get him into priority testing sooner. I only say this as our "priority testing" still had a month wait for a bed. What they forgot to tell me is if my son increasingly got worse in the interim waiting time (which he did) I probably would have been far safer to bring him into a doctor's office or ER for re-assessment. And then if warranted, he would have priority status *immediately* and no wait time for specialty testing.

Obviously, this would only happen in very serious health cases, though...

[emie]

Hi, Tyler has been really poorly today. He has cried (weak) cry all day, just laid on me, and was shaking all over. I thought it might have been a virus, but he has been building up to this for days! I was told to check his sugars after his meal ( which was hfi safe!) and his sugars were at 4.2 :/ - i was told to check them due to his shaking etc. I took him to the gp this morning and because he had no temp and no visible signs i was told to 'see how he got on' By tonight his cheeks were flushed (i noticed you mentioned about that) and was really weak. He has settled now and will take him to the hospital rather than gp in the morning if he is no better. His stools aren't any worse, still fluffy in nature and very acidic smelling. When Tyler is poorly he always coped with it amazingly, no matter what it is! Sort of just gets on with it !!! But these last two days, not really seen him that weak and upset before! He didn't stop crying for hours at one point. I felt frustrated because he still wasn't at that 'critical' stage and mu gp wasn't any help. I wont be crap if he is still bad tomorrow! Sheffield have been informed and are organising both the gastro and metabolic teams to come together for his app, thank god! Always feels like when we treat one, we affect the other! One positive was the gp couldn't feel/ see any abnormalities..but Tyler's issues have never been 'visible' . Thanks Lucky for that info, i have been pushing for him to drink plenty etc! I will push for an IV if he gets admitted! Xx

[lucky]

Emie,

Take him in to be assessed.

Regardless of whatever else is going on, dehydration / electrolyte imbalance needs to be properly assessed. Your child is showing you that he is in pain. He is in distress. He needs to be listened to FAR more than another giving you hesitation...

My reasoning at this point is :: If you screamed in pain... you would not have lasted nearly as long as your child has been asked to. The difference? Adults know their own threshold for needing help... a child is someone we are constantly trying to subjectively assess. And an adult can get into a car and drive themselves to get help from a doctor. A child cannot. He is totally dependent on you hitting YOUR threshold for his wellbeing.

People (and doctors) sometimes need to soul search on how long a child realistically can wait. If one Dr refers to another, then another, then another... sometimes people forget realistically how long a child has had to wait in pain / discomfort with no other recourse but to build more tolerance or slowly become more quiet and weak from exhaustion.

If a child had a rip-roaring ear infection in the middle of the night and screaming to the extent that the neighbourhood could hear... there would be no second guessing going into an ER for help and antibiotics. But a child like yours.... sometimes is quietly left to possibly wait and get more weak. Clearly unintentionally... but sometimes things get missed even by the medical profession. It happens.. just like in any profession. Sometimes there are too many chefs in a kitchen and everyone thinks someone else is strictly monitoring an ill child (that may be declining in health). And yet... no one is monitoring...

It's the system. By the time you get to your state with mommy worry, It's "All or nothing... I'm going to the ER. I can't wait any longer." That's the threshold that sometimes prompt doctors for new triage assessment.

My steadfast thoughts as a parent of 23yrs is... if I couldn't last that long, neither should my child. And I would rather err on the side of caution to get my child assessed than grieve the possibility of why I did not. If I am wrong, I would rather be embarrassed for my worry... BUT... then be able to sleep at night.

Realistically though, this is not beyond the realm of reasonable parenting to get a second look from an ER doctor (who has ALL the iv and testing labs ++ at hand) to exclude dehydration / electrolytes issues at least. If you're wrong and he's stable... I'd be surprised as he is so acidic (even though he has meds) and is in pain. But... if he is in great need... the hospital is the safest place for him to be. And you were a warrior for being your child's strongest advocate. It's not like this just started and you're over reacting. This is LONG ongoing and now potentially dangerous. At least find out he is not in a dangerous state.

-xo

[lucky]

Emie,

Just had a look at "shaking" symptoms...

It can also be a sign of dehydration (among other).

The GP asked you to take your son's BS. But was it also mentioned that if adrenaline raises BS it can also cause shakiness? So the shakiness may have also come from adrenaline trying to pump up a previously lower BS? Maybe it's worth verifying?

Although this article mainly focuses on reasons for anxiety, it does reference that anxiety is a trigger to many things. And whether life anxiety, or health anxiety... everything is connected.

Also, it mentions that shaking (tremors) can also signify vitamin deficiency.

And another article (sorry... I lost it somewhere in Google-land) mentioned that shaking (being cold) can also have something to do with a dehydrated body's fluid volume decreasing and not being able to keep body temp properly regulated.

Maybe worth further investigation and/or consideration?

www.calmclinic.com/anxiety/symptoms/tremors

[lucky]

Emie,

Your son's BS only hit 4.2 right after eating?
It should have gone higher, initially.

1st thought :: How low was it before, then???
2nd thought :: Did he eat enough?

3rd :: Did you perhaps recheck BS later in intervals?

If it happens again, you may want to. For safety.
But regardless... This all needs to be mentioned to a doctor.