So pleased to have found this site!!

[charlie]

Hi Emie, sorry you are going thru a bad spell again, but good news Sheffield are fast tracking him. The only way we got answers for a lot of things is I ended up going to the doctors every time she showed a reaction in the end and luckily one day it was a locum who saw us and he said she was quite clearly showing mild allergic reaction and to give her piriton - this was to artificial sweeteners and a few other things, but it took a long time for them to build up the picture....
Hope he feels better soon.

[lucky]

Emie,

How are things going today... any better?

[emie]

Just a very quick up date!
Tyler has been off all week and on Tuesday came out in a rash alover his body with red/purple blisters on the heels of his feet! He has wet nappies but not that sweet and they smell very sickly sweet. Just been to the hospital and because he is more alert they are admitting him tomorrow because Drs have no idea what is going on. They thought it was viral, but never seen this before! These purple/red bumps are very painful for him too. He is better to be faire, just irritable and nit eating very well. Just like myself and the Drs said tonight, how long do we keep saying ' will leave it another day and see how he is!' x

[emie]

Bumps/ spots not blisters! Thanks for support everyone. Will look through messages in more detail! I always take on board what you say and mention to his health care providers x

[emie]

Sorry for the poor spelling! Typing to quick! His nappies are wet, but not that wet. He is alert now and more active but everyone is concerned about this rash and purple bumps in his feet. I thought he was well enough to wait until the morning and also we had no transport to get to the main hospital tonight (car failed m.o.t!) typical!! I was advised if he did worsen in anyway to just ring an ambulance. X

[lucky]

Hi Emie,

Oooooooooooooooooh. Wow.

If your son is being admitted tomorrow, you are in good hands. Finally.


Has anyone ruled out :: ROSEOLA ::

If that's what it is...
It's also known as "Baby Measles"

All my kids had it. It's not too uncommon.
Usually it's the fever that causes worry, spots signal it's end.

And some get way more spots / bumps than others...

Two of my three kids got it BAD. Each were within 8mo-2yrs old when they got it (but had it separately as each reached that age range).

LOL... Those spots / bumps were all over. ALL OVER. If there was skin, there were spots / bumps. Everywhere... including awkward areas like inner side of ear, nose, bottoms of feet (and even toes) for 5-7 days.

The 8mo old had an unnervingly high fever for 3 days leading up to it (and ended up under observation the last night in an ER for it) the other two, mild-moderate fever. And in the latter two, they were initially just thought to be under the weather... till the spots broke out.

Some kids have spots that last for hours only.... most have spots / bumps that last a couple days-ish. All 3 of my kids had it for 5-7 days. The two that had the most spots / bumps didn't even have the highest (or longest) fever leading up to it.

So... in our case, two showed mild-moderate fever, one, high fever. Only the mild-moderate fevered children showed the worst spots / bumps outbreak (which lasted a full 7 days). Go figure. Kids. They can worry the hell out of you.

Oh yeah... they were pretty times. Bumpy spots everywhere. We didn't go out. It really looked that fierce.

But don't worry, if it really is Roseola, once the spots / bumps disappear, beautiful baby skin is again revealed. Like nothing ever happened.

Other than your nerves being shot over the stress and chaos.

And all felt way better (almost completely fine, actually) by the time the fever broke and the spots appeared. Just take care for those with compromised immune systems as that can complicate any illness.

Have a Google look (and also check images) to see if anything looks familiar. It is relatively common till age 2yr (some site even to 3yrs of age).

Hopefully that's what you're seeing and the worst is over.
And maybe it also explains your son's added poor health leading up to this.

Good luck tomorrow.
Try and rest a little.

* Adults can be exposed also, but if so, most likely will only show mild flu-ish like symptoms and fatigue -if anything at all.

[lucky]

Just saw your post.
Sorry I responded not first seeing yours.

Yes. If things get worse -for whatever reason- don't hesitate to call an ambulance.

You can now be rest assured that it is NOW officially what you were told to do. By an ER doctor. So no one you come across later will dare to question anything from this point on.

It is a great help that your son's ER Dr gave you health perimeters to work within. If worse, do this... if same... still come in to be admitted in the morning. THAT is helpful to a parent. That's what is needed to remove a parent's hesitation and self doubt. Simple powerful instructions.

Watch over your little one tonight.
One stitch worse and make the call.

When your son is admitted tomorrow, I'm sure a battery of tests will exclude everything imaginable to insure his safety. Try not to worry. The collective group of brain power will figure this puzzle out and get your little man back to health... permanently. And I'm sure they'll quickly eliminate allergic reaction possibilities along with autoimmune ones etc... Poor little guy has had a rough go for too long. Time for some answers.

His tiny body continues to shout louder and louder for attention.
He's got theirs now.

I will be thinking good, safe thoughts for you guys tonight.
And best of health and safety till he is in the specialists' hands.

((HUGS))

[lucky]

Oh dear...

Just re-read your post but missed that the red spots / bumps are painful...

I don't remember Roseola being painful.
Mind you, there were bumps... and those couldn't have been some kinda wonderful either...


How about :: HIVES ::

One daughter used to get hives. Those started as itchy (tiny and pointy like pimples) then relatively quickly went to prickly, then, to slightly fluid filled (more rounder bumps but still small) ... and quite painful.

I'm sure that tomorrow they will also exclude any type of potential allergic reaction.

But, in case it is an unsuspected allergic reaction... for tonight especially, be cautious to not let anything progress to a worsening state (as allergic reactions can potentially quickly slide to worse).

And, especially if an allergy hasn't already been excluded.

And take care for his breathing and sleeping comfort tonight.
You'll want him to look and sound safe.

-xo

[charlie]

Good luck, Emie, poor little chap, yes, the minute worried call an ambulance, don't be afraid to be a nuisance or needy, at least if they see him at his worse, than recovering they are more likely to act. You make as much nuisance of yourself to get some answers.

These photos are of my little one aged about 2 when she was at her worst, sorry its a photo of a photo so not terribly clear but she broke out in spots, they insisted were cluster chickenpox, then impetigo but it didn't clear for ages, about 3 months I think, stopped when I took her off sugar and fruit. They now think was a reaction to the sugars. Her skin is now beautiful and unblemished.

]
Thinking of you. Big e-hugs from us.

Charlie

[emie]

Hi everyone, will read through your posts when i can (properly) i have limited internet access at the moment. Just to let you know, Tyler's spots are peteachiea !!xx

[lucky]

Emie,

Very relieved to know the Drs have at least pinpointed what the spots/bumps are.

I have never heard of :: PETECHIAE ::

So I had a Google look...

Poor dear...
I sincerely hope all is on the road to improvement and that your little one is well watched over in the hospital. Hope you now get the full medical support your son deserves and the answers you seek.

And to your son...
Take care, little man.
Rest and heal.
xox oxo xox

Message me publicly or privately anytime if you would like to talk.

But please rest anytime you are able.
You will need your health and energy.

Best,
-All of us on this board.

[lucky]

Emie,

How's your little one...

[emie]

Hi, sorry not been in touch. We are having a really really hard time. Tyler hasn't slept through the night in the last two weeks. He wakes screaming and after falling back to sleep , goes onto wake every 5-10 minutes all through the night!! I am so exhausted and extreamly upset at what happened at our last app! Firstly, they have taken his bloods (but that was it!) and then at Sheffield that was an absolutes waste of a long journey! We saw a different consultant and basically she was awful! The dietitian couldn't even get over how rude she was! She said, Tyler is fine because he has gained lots of weight (to me, it is all bloat because he looks so puffed out but barely eats much, how is it possible!?) I also heard the dreaded words of Sometimes you never find the answers!' she even tried to tell me i was over reacting about his loose stools and he needed to go up in nappy size! I said , it was down to the bloating because on a morning you could wrap a nappy round him twice! At the local a&e as soon as i mentioned we were under the care of sheff hosp awaiting dna results, they dismissed us and said they didn't want to 'interfere' with what sheff were doing!!! I have never felt this alone, upset and loosing the will! I have lost the fight in me at the moment! (probably due to lack of sleep!) still waiting for all results but the gastro side of things have basically washed their hands of us! Sheffield hospital was my last hope too! I am hoping we get answers through the metabolic side of things now! Tyler has become so miserable and clingy now , i don't even recognize him ? He is so tired from the lack of sleep too. Could it be a 'toddler' phase , or his issues!? I have no one to ask and no support from Drs now. ? spent the last two weeks in tears just about and snapping at Tyler because i have no idea on how to help anymore! X

[charlie]

Oh Emie, my heart goes out to you because I know exactly how you feel, I have so been there. The arrogance of some doctors is unbelievable. I send you a massive understanding, been there, got that T shirt e-hug.

However, somewhere, out there is a doctor who will understand and will help you, you just have to find them. I have been extremely lucky that our General Paediatrician is open minded, understanding and has listened, and never judged. The departments in London have been varied but the metabolic specialist was an arrogant, patronising ****, and I left every appointment totally dejected and deomoralised, however the neurologist was very open, honest but couldn't find an answer for us.

So, they have written you off, in effect saying there is nothing seriously wrong with your child so this is where you step up, something I wish I had done years earlier than I did and would have saved myself years of sleepless nights.

You are an intelligent, perceptive mother, or come over that way, otherwise you would not have found this board and asked the sensible questions you have if you weren't, therefore you have enough common sense to find a way forwards yourself and trust your instincts and certainly we will help you on that journey.

This is what I did, I trolled round appointment after appointment from the age of 18 months, she had test after test and they came up with possible ideas, then the results said NO, so we tried something else. They then decided it was HFI, but the gene test said no, the breath test said Fructose Malabsorption but her intolerance to that diet said NO. Age 8 Someone else pointed me in the direction of CSID and it made the most sense out of everything I had read and they did some tests (badly) which said not sure so I took the initiative and started the diet and found some enzymes to supplement and within a week the response to the changes I had made said YES. I then went back to the gastro team and said "Look, I did this as you couldn't come up with answers, I appreciate it is unusual but it works, can we move forwards with it". Luckily they said yes and that is where we are now, still tweaking but life has massively improved. Looking back to how I was, which is where you are now and that is why I posted the photos of Meg, which I will remove in a couple of days as they are a little explicit to protect her, but what I haven't got is a photo of me, drained, exhausted trying to function on about 4 hours sleep night after night, month after month from when she was 6 months old to when we finally turned a corner this January aged 11.

Now, it may not be HFI, it may not be FM, it may not be CSID, but it certainly sounds like something in that area. We are more than happy to help build up a diet plan to help you, although obviously we are doing this as "Parents with Experience" not medics and you must keep in touch with your doctors too, if only to keep in the system. I will PM you my email address too as that may be easier to keep in touch quickly, I am sure you will get there, please don't let them intimidate you into giving up for your sons sake. You are right, there is something wrong. Some things may be just being a toddler but alot isn't. You will just have to take an unorthodox route to find your answers.

Just re-read your post, I had the sometimes we never find an answer...... And Meg has always been tall and good weight so never labelled failure to thrive, look at her and you wouldn't pick her out as the kid with food problems, but that is because I manage it so well.

Sooooo, best foot forwards, lets get you moving towards a solution and get you some sleep.

[lucky]

Emie,

Well... this is unfortunate.
Temporary setback. That's all...

Ok. Let's try and figure some things out.

1./
* How is your son's stool now?

- I'm wondering if the past (recent) fructose testing really upset his system. Many have reported especially acute symptoms for 3-4wks afterward. I think it's due to an already fructose poisoned and worn out system being taxed further. Just too much on a delicate and already raw tummy.

* How did they explain the diarrhoea?
* Has no one even done a stool test to analyze?


2./
* Has any blood work come back?
(-even for iron, vitamins....etc-)


3./
* What is your son eating / drinking?
* What could he eat before. What now?


4./
* Are you SURE the meds your son is taking are safe?

- If your son's belly is not as distended (and better) by morning, food and/or meds might be starting the cycle again. And if meds are taken everyday... that's everyday full dosing on a raw system... if not safe.


5./
* When does sleeping cycle get disrupted?

- If you have time, try to decipher eating times during the day and night and how long after problems tend to show. You may find a pattern in timing and length of trouble.


6./

* Did the ER drs literally tell you he looks good?
* Even after a physical exam / and your review of issues?


7./
* Do you have family to help out or advise?
(-on regular baby/toddler stuff or what looks "off" from a 'seasoned' parent's perspective?)


8./
* Is your partner (or friends or family) able to step in a little so you can rest and get a break?


9./
* Does the Metabolic team know you are struggling (and recently in the ER)? Can you ask for aid from them, their dietitician or your GP?


10./
* Blood sugar ... stable?
* Energy level ... is he even mildly active at times?


Try not to feel defeated. There are clues, it'll just take longer to do more strategic deciphering. Often the biggest hurdle is the time needed to collect patterns to clues, and to see if, over time, issues improve or stay. But all this takes time. Especially when a diagnosis doesn't come quickly.

But if your son was ok'd by the ER drs, then at least he is deemed "safe". Absolutely not optimum by any means, but at least he's not in a life threatening situation - today.

Keep on top of the follow up with DNA testing, etc... and if gastro issues aren't resolved soon... you'll have to press the Gastro dept for further aid to stabilize.

A child should not be screening in pain. Or permanently on stomach meds to try to neutralize the acid from offending foods not yet identified... Or... have loose stools and low energy.

Your son is at the age where he should be playing hard. Then sleeping hard. And eating in between. No one involved should dismiss you or him till he is thriving. The meds are only a temporary fix to an unknown problem. Or a med to help heal in the interim. It should not be a life long crutch... Or one that is not even fully effective anyway.

If this is the case, it means the problem is not yet identified and the doctors' jobs are not done.

Yes, sometimes there are currently no answers to mysterious issues. BUT... regardless of being able to properly title a diagnosis, it is still the doctors' responsibility to help you get your son to a stable and thriving condition. Optimum success is health stabilization. Not a label. Although honestly, that is also very much appreciated. If for no other reason but to know how serious the situation, and general parameters to safely stay within.

Emie...
Let us know what stage of food and sleep chaos you and your son are in and maybe we on the board can start suggesting very very basic starter foods. I'm thinking very easily digested first stage foods and work up from there. Even chicken or turkey bone soup would greatly help. There are so many vitamins and minerals in it. And along with some meat.... it would be extremely healthy and easily digestable for a sensitive tummy. And, you can't tell me you couldn't need a health boost yourself. You've got to be running on fumes, too...

There are ways to make it (and other foods) at a VERY low cost. And VERY little effort. Which is important as you are a young mom who doesn't have all the time in the world to get fancy with expensive or time consuming food prep.

* What's the deal on starch, milk (lactose free), eggs... Ok?
* Does your son like any type of noodles?

I'm thinking of food ideas...
Let us know what help you need to start with, and we'll go from there.

-Lucky