Back from hospital - update!

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Suzysu

Suzysu

Joined
Apr 30, 2012
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509
Hi everyone! - thought I would start one last thread with an update.
Freddy constantly screamed so much we had to leave the ward as he was upsetting everyone else, the pre-med helped loads but then 4 of us had to pin him down to gas him for the GA (it was truley horrid).
He has lost 400g since last week - but I guess thats because of all the prep? no one said it was a problem so I suppose it isn't.
He had both scopes and they could see everything fine, on the discharge papers it says ? IBD (not one Dr has ever actually mentioned IBD to me, so thought this was weird). Everything looked normal on the scopes - so I'm guessing that this means he doesn't have IBD? - although again no one explained anything to me, and they all just said we had to wait for the biopsy results in 4 weeks.
From the little the Drs had said to me, I was expecting the scopes to be normal, and thought I would be really relieved, but to be honest I still feel really confused, and just don't really know what is going on. Can I relax because the scopes all looked normal - does this definatly mean he doesn't have IBD? or is there still a chance he could have it? and if everything looks normal why does he have diarrhoea, vomiting, iron deficiency, no weight gain etc etc etc.
I am so rubbish at waiting and just wish I knew what I could do to help my little one.
And thanks to everyone once again for all their support - you are all wonderful people.
 
Suzysu: ARGH! So sorry you don't have definitive answers. Hopefully when you get to see the GI and go over all the results you will have more answers...the waiting is a killer! Were you ever able to change docs? Do biopsies really take 4 weeks?! Yikes!

In the meanwhile, I know you have health issues yourself (did you say IBS/possibly IBD?), have other children and a career. Try to find some time to take care of yourself and get some rest!

Hugs and prayers to you all!
 
Crohnsinct - you are wise indeed!!
Freddy (who is still amusingly wobbly) and I have just come back from a refreshing dog walk (Freddy was obviously all snuggled up in the buggy - I am not that mean!!) - I had time to think and realised that I may not have the answers, but it is much less likely (and maybe totally unlikely) that he has IBD, I guess he doesn't have GERD, the biopsies should totally rule out IBD, will probably rule in or out celiac disease, and may or may not tell me what he has - in the meantime there is no point in worrying about something I have no control over - I am going to enjoy his good days to the max and deal with the bad days when they happen!
I wasn't able to change Dr's as the next nearest is in London and I just can't travel that far (with the other kids etc). I'm sure it doesn't really take 4 weeks for biopsy results that is probably the results time combined with the waiting time to see the Dr.
The hubby, mother in law and mother, have all been telling me I need to take it a bit easier - this week I have had awful tonsilitis and been feeling really rough (which didn't make today easier) - Im sure it and my IBS are all down to stress so I expect they and you are right, I need to worry about things I can't do anything about less and take it a bit easier. My business has taken a back seat since Freddy got worse and is suffering a bit so I should probably concentrate on that a bit too!
Thank you for making me see things a bit ore clearly!!
 
Hi susisu

They will probably have the biopsy results quicker than 4 weeks so maybe ring them in two and see if they are back, if they are clear they will probably tell you over the phone.
Hope the tonsils get better and that freddie is feeling better
 
Aw Hun! So much easier to tell others what they should be doing but glad you are going to take care of yourself:hug:
 
:hug:Here's some of my hugs coming all the way from the USA!
I hope the night will be more restful and your little guy will get better!

:soledance:Farmwife
 
Sorry you are no further forward but it is good that his scopes looked good. Hope you feel better!
 
Thanks again everyone! - Freddy is a bit emotional today but that's to be expected, im sure he will be fully recovered in a few days time! I am of course so glad that it all looked normal, and am looking forward to a bit of a break without hospitals and Dr's (as I think is Freddy!!).
My throat is much better thanks to the antibiotics!!
Sascot - how did your hospital trip go????
 
:dance:I glad your all doing better.
You said that the paper said IBD but his scope came back clear. Is it still possible for him to have IBD? Sorry I'm also new to this world of test.
Farmwife
 
Hi Farmwife!
Sorry I didn't write it all very well - I'm assuming they wrote ?IBD on his paperwork because thats what they were testing him for, and I think that as there were no leisions it means that he doesn't have it - although I think it is possible for someone with IBD to have a clear scope with no leisions if they are not in a flare, and I assume that is why they always take biopsies just to be on the safe side, but I think if there are no leisions it makes IBD very unlikely. I think IBD can sometimes be difficult to diagnose as often the areas most commonly affected (I think terminal ilieum) cannot actually be visualised with the scope (which is why they often do a barium study, MRI etc if they are really worried).
In summary I think a scope can 100% confirm an IBD diagnosis but a normal scope doesn't 100% rule it out although it makes it much, much less likely - However I am not a doctor, or an IBD expert so I could have got that all wrong - I expect some of the other parents on here probably know a lot more about it than me!
I hope you and your little one(s?) have a wonderful weekend!! xx
 
:emot-waycool: Thanks for the reply! My week-end will be spent hiking in hot dry weather with my hubby and kids.:sign0085:
Is it wrong to think if Grace is going to have a flare up NOW would be the time!:eek2::lol:
You also have a good week-end.
:soledance:Farmwife
 
:rof: LMAO...problem with hiking? Then you don't want to know about my Mother's Day hike last weekend. Suffice to say a 5.5 mile hike into the middle of nowhere with a Crohnie not in remission probably wasn't the smartest thing I ever attempted :ybatty: Good thing there wasn't any poison ivy around:lol:
 
I wouldn't rule out Crohn's based on normal scopes and biopsies alone simply because they leave the majority of the small bowel untouched.

I dearly hope your little guy doesn't have Crohn's but if they aren't able to supply you with solid answers now and symptoms persist then pursue further testing until you do get the answers you need.

Good luck!

Dusty. xxx
 
Farmwife - I love walking - although my kids are sometimes not so keen (although they are still quite little!) we will probably be going on a mini 'hike' with the dog (assuming it doesn't rain too much!). I guess if Grace was going to have a flare the week of her scope\ tests would be a good time!!

Crohnsinct - sooooooooo many times I think doing something with the kids is a fantastic idea - it is only afterwards I realise that doing something else would have been better!!!!

DustyKat - I hope he doesn't either - he has had an amazing day eaten really well and been so happy, I felt so possitive about everything - tonight I have put him to bed over dozen times, he stops crying when I go in and just wants to cuddle - is he sore somewhere because he is ill or is it just because he's being a difficult 2 year old? I wish he were a bit older and it would be easier to know what is going on! He is certainly very different from my other kids! I would have thought that by child number 3 I would have got the hang of things!! I hope he just gets better I can't bear to put him through anymore tests.

Deep breaths time for more cuddles (and I think some calpol as this has been going on for over 2 hours now!) and to try to get my little man to sleep (again)! I hope everyone has a fantastic and illness free weekend! xx
 
Oh dear, hard to tell if there's something wrong or just his age! My kids were just over 3 yrs old before we had a solid nights sleep. Given that my daughter was born when my son was just over 3, I had 7 years of broken sleep :lol:
Still slightly edgy and overprotective of my sleep - poor kids hate waking me at night :ylol2:
 
My daughter was horrible about sleeping through the night! I think she was 6+ before she started to regularly sleep through! :devil: Ugghh!! I used to tell her that if she woke up, to look outside... if there were no other homes with lights on, that meant it was still time to sleep! :lol: Didn't help me but... maybe give it a shot with yours! And, now, 10++ years later, I am still NOT getting a full nights sleep because now I worry until they are home safely at 1, 2am!! :ybatty:
 
All mine have been horribe sleepers till about a year old then pretty much perfect! (hope Im not jinxing tonight!!).
Poor little Freddy if it's not one thing its another! After a very sleepless night he woke up this morning with pus pouring out of his ear, so off we went to the weekend Dr for antibiotics - at least it wasn't anything serious, and I know I was right to give him so many cuddles (ie he wasn't just being a difficult 2 year old!!).
 
Sascot - I have been reading other posts and see that your little one is not doing so well - I am thinking of him and keeping my fingers crossed he will improve soon.

I just wanted to run a few things past others that have been through the whole scope thing before:

Freddy had been doing wonderfully - like someone swapped him for a normal happy child, with bags of energy, appetite, everything! The hospital phoned on Monday and said his bloods showed he was really 'dry' (very odd expression I assumed they meant dehydrated) but the nurse wouldnt elaborate, I asked how his iron levels were and he said they didnt test them! I asked if there were any other abnoralities other than Freddy being dehydrated and he said no. I am probably being paranoid but I really really got the feeling that I wasn't getting the whole story - the nurse just kept asking if Freddy was ok - Freddy was fine so I said I thought he was doing really well. - Just thought this was all a bit strange.

Before the scopes Freddy would pass 2-3 MASSIVE amounts of disgusting sloppy cow pat like dirrhoea (sorry for the description) per day. Now he is going to the toilet 5-6 times per day and it is pretty much all solid - but not normal solid - like solid dry bits (again often quite large volume) that pass out along with lots of pooey water (again sorry for the description). He has also started to occasionally stop what he is doing half bend over (like kind of stick his bottom out a bit and bend slightly forward), put his hands up to his mouth and let out a cry for about 30 seconds or so.

I don't really want to phone the hospital unless I have to and am not sure if the changes in his poo and the odd crying (he has only done it a few times) is really anything to worry about - he is eating better than usual and has more energy than usual and has put on the weight he lost last week - so on the whole I am really pleased with how he is doing!

I think I just needed to write all this down!!

Hope everyone is ok xx
 
I would sit on things for now hun. He has energy, is gaining weight and is eating so perhaps he is experiencing some pain/discomfort because he is eating so well again and his system is learning to readjust again, bless him.

I would say the bloods reflected the fact that he had not long had bowel prep, it wouldn't be unusual for it to leave a little one on the dry side.

Good luck and may the good times just keep on keeping on!

Dusty. xxx
 
Glad that he is doing better - just enjoy it while he is like that! I agree that he would be a bit dehydrated after having the prep for the scopes.
 
Thanks!
I think I just needed to write it down if you know what I mean - Funnily enough other mum's are not so keen to discuss poo as you guys are!!!!!!!!!!!!!!!!!!!!

I thought that about the bowel prep etc - of course he would be dehydrated - that's why I thought it was strange they phoned as surely you would expect the bloods to be a bit off - I guess they just have to check up on things - If it was serious they would get us back in, and he did say there were no other abnormalities so I guess that means the CRP level was ok - yay!! anyway I am trying to forget about it at the moment!

I keep reminding myself that he is really happy and to make the most of it (we went to the beach yesterday and the day before!!) I am so loving having my happy normal little family back!! It seems so long since we were able to do normal things. I am just hoping beyond all hope that this time he will stay like this forever and not get worse again.
 
OH, the beach, the sun, happy boy. What a good day for you. :pika:
I don't know what future hold for us. But the good days I think are just a bigger blessing for us, then most people. We don't take them for granted. :rosette2:
I hope all stays well.

Farmwife
 
My heart lept into my mouth when I picked Freddy up from nursery today and saw a mouth ulcer smiling up at me from his lip, plus His carer said although he had been bright and eaten well he had really cried whenever he pooed.:(

We have our GI appointment on 11th June I guess that means they didn't find anything on the biopsies or they would call us in sooner. Maybe he just bit his lip, and maybe as it has been so hot here the last few days he is just a bit dehydrated and constipated and is not used to doing solid poo - who knows.:eek2:
 
Deep breaths Mum, I know, soooooooo much easier said than done! Perhaps the weather is indeed the culprit. Good luck with the appointment! Fingers and everything else crossed that all is well. :)

Dusty. xxx
 
Just wanted to say hi and that I am thinking of you and little Freddy and hoping for answers soon. Hang in there mamma!
 
Freddy has gone from passing 6 BM per day to not having gone at all since Sunday afternoon - I know this is normal for some kids but it is unheard of in Freddy, he is still eating but less the last day or so, he is quite active but did fall asleep this morning (unusual for him to sleep in the morning) and I had to wake him up when we had to leave to go get my daughter from school (3 hours). He has not vomited for nearly 3 weeks (the longest he has ever been).

I have been trying to get him to drink lots, eat lots of fruit (which he loves and I used to not let him have much because of all the diarrhoea! - how things have changed!!), and walk lots - but no poo (yet) - Any suggestions (he won't drink fruit juice or squash).
 
Sorry I have tried to think of a suggestion to help him go to the toilet but it is late and my brain isn't functioning too well - the heat isn't helping my concentration. Hope it resolves itself. You could always ask the pharmacy as they are easier to get to than the doc!
 
:ylol: yes it is late and hot!!
If he doesn't go in the morning I will give him a big squeezy hug, and if that doesn't work I will pop to the chemist, although they are always funny about giving over the counter stuff to anyone under the age of 3 and tell you to go to your Dr!!!!:ybatty:
 
When Stephen was 6-8 years, he'd be constipated every once in a while, his doctor suggested glycerin suppositories. They were a miracle! - one minute he'd be pale, bent over in pain then he'd have his suppository, wait 10-15 minutes and do his poop! Absolutely all the pain was gone! :)

It's not a prescription, however, as you said, sometimes not all is okay for under 3 :(
 
Isn't a trip when these kiddo's learn learn tricks!

Maybe he is holding it because he was having pain when he went? (do I remember you saying he was crying when he went?)...I would only say all the things you are already doing. Lots of water especially if it has been hot there. My Pediatrician recommends Miralax (don't know if you have it there) but with a child as yet undiagnosed I don't know how that would fly.

Gosh 6/11 can't get here fast enough huh? Seems like all of us here are wishing the time away until our next appointments, tests etc...not a normal way to live.

YES! Hug that poor little pumpkin!
 
Hello Suzysu,

I just wanted to day Hi and I know things have been really stressful for you. I hope that it settles down soon. It is very hard when you are not quite sure what is happening. I know I drive myself crazy trying to work thiungs out.

take good care of yourself.
Best wishes for your little one,
LilyRose
 
Oh I just remembered! My two non Crohns kids had chronic constipation and were encopretic (another hmmm here). But I'll be darned, anytime I took them swimming we were running for the bathroom. I don't know if it was all the kicking and splashing about, the relaxation, water pressure on the belly or what but it worked like a charm.
 
After 48 hours we have poo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! and lots of it!! - some of it diarrhoea - most likely all the fruit I have been stuffing into to poor little chap!! He is definatley uncomfie before every BM, but not when he is actually doing it if that makes sense!

Phew panick over!!

Crohnsinct - what is encopretic?

Thanks everyone for the advice - hopefully it wont happen again but if so I think I will pop him along to the GP maybe to get some of the medicines you have suggested, and I am going to mention his odd bowel habits at our GI appointment in June - just in case it has anything to do with anything!!
 
YAY POO:applause: Yes only here we DO applaud poo!

I mentioned miralax and that is available over the counter. When you talk to doc just ask for the dosage. Our doc said it wasn't a drug but rather something that just helps draw water into the gut to keep things moving and said it was basically harmless.

Encopretic is chronic constipation where the kids get impacted with hard poo and the soft stuff leaks out around the hard. My oldest daughter had leakage in her underwear until after she was 12. My youngest up until 5. My oldest was checked out by a pediatric GI and was put on Miralax oh and here is another you can try...mineral oil (mixed in a drink). No further investigation into any IBD's although youngest has had chronic stomach aches. My oldest had such a hard time going that she would get rectal prolapse and I occasionally had to push her rectum back into her body. Perhaps TMI?
 
OK bad hospital GI doc joke..."Why did Tigger have his head in the toilet?...He was looking for Pooh"
 
:rof::rof:
You guys crack me up!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! At least you can all still laugh about things even though you deal with your little ones being so poorly.
I have put plenty of rectal prolapses back in, in animals, but honestly I think I would freak out if I had to do on my own child! - you guys constantly amaze me on how wonderful you all are.
So is constipation something that goes along with Crohn's? I thought it was just diarrhoea!!:ybatty: Doh!
Thanks once again everyone!!
 
Another yay for poo here too. :ycool: Glad he's managed to go!! Yes from reading alot around the forum, constipation seems just as likely for Crohn's. Of course my lovely boy has neither :lol:
 
So glad he was able to go. The tigger joke made me lol...I repeated it to my 5 year old who is still giggling 5 minutes later!
On a side note, I are eating lunch while reading about poo and think nothing of it...only parents of IBDers! MMMMMmmmm taco salad lol!!
 
So I am wondering if we need to see a psychiatrist rather than a GI!! Maybe I just have a very odd little boy!! I thought I would ask if anyone else has come accross similar behaviour (in an ill or a normal child)?

1) Starts to get clinigy, emotional, upset, crying, for about 20-30 mins then comes up to me for a hug - then used to vomit but now passes wind! or will pass faeces a few minutes later (but seems to have no trouble passing the faeces, which are soeties noral and sometimes not). - Im thinking def abdo pain - often he bends foward slightly and really cries for a minute or so, often he cries and goes 'ow ow ow' but I haven't seen him hurt himself.

2) Sucks stones, tries to eat soil, leaves, sticks, iron levels in september were 3 (should be 8) with a low PCV etc, March iron was 5 and PCV etc were normal although right at the lower limit) - I think he does not look as pale as he did, and his levels are improved but the picca (eating odd things) seems worse.

3) Seems hungry - constantly asking for food, but then chews it and spits it out or eats a small amount then leaves it, then 2 minutes later asks for food again - After he has done this a few times I tell him he has to wait a while for his dinner etc - If I don't watch him he will go to the kitchen bin and start to go through it - a few times I have caught him about to eat mouldy food.

4) Obsessed with certain types of food ie baked beans - eats just the beans on his plate and nouthing else (my kids don't get seconds unless they eat everything) then tries (very forceably) to take the beans from my other kids plates.

Has anyone had this behaviour in a child that is not ill - I mean could he just be a bit strange?

I am trying to prepare myself for our appointment On the 11th when I think they will say 'he's fine go away' - and while things have dramatically changed for the better (compared to Feb-May and other periods last year, when we had constant diarrhoea, vomiting, mouth ulcers, bleeding from skin around anus, occ blood in faeces, no weight gain or growth) I am still worried that he is not quite normal especially about this abdo pain before BM, and odd eating habits - which I feel are really not normal but don't know if I am looking too much into things if you know what I mean.

You guys help me to see things much clearer so any thoughts are appreciated!!
 
OK, I can give you the experience that I had with my Gracie. Others might be different.

1- Yes, she was very clingy. Same thing as you boy in every way.

2- I have no idea! My son did that once. He was trying to be a worm.:lol2:

3-Hungry, hungry, hungry. Following me begging for food. Put it in front of her she takes one or two bites and thats it.
I have the same rule; eat every thing on your plate.
BUT... given her health problems, I now have saltines or some kind of cracker that she can have during a meal if she doesn't want the food. That way if she does eat the crackers, I know she might be being picky about her food. Or the crackers are just easier on her belly.
But at least she has something. Some time the flare is so bad she won't eat anything.


Sorry have to stop. My kids or using pop bottles for bats. My boy just said Sorry mom. Have to go investigate.:eek2:
 
Hi Suzy,

I don't know about all of your questions but, I would imagine that the clingy, crying before gas or BMs and the hunger but then not eating are probably responses to some pain??? Perhaps try offering some of those shakes (Boost, Ensure, etc.) that he can have between meals - if he is actually hungry, they will give him some nutrition but may be easier to digest??

And, for the food obsession - I think a lot of kids go through this... when each of my kids were 2-3 years old, they both went through a stage when they chose to eat (almost) NOTHING except macaroni and cheese or fettucini alfredo! And, as my kids are only 1 year apart, I had 2-3 years of this straight! The only variety was whether it was homemade or packaged! OMG, I was so absolutely sick of cooking, seeing, smelling these two meals... :lol: Don't remember what ended the obsessions. (I think I succumbed to McDonalds just to add some variety! :rof:)

Farmwife - too funny! Hope the "sorry mom" was nothing too serious!
 
:rof::rof::rof::rof:
Farmwife - your life and mine seem very similar (only I don't live on a farm - I just wish I did!!) - My computer sessions are nearly always cut short by some distant bang followed by crying\ 'muuuummmmmmmmmmmy'! etc etc!!
Gracie and Freddy seem to have a few similar symptoms - interesting! I hope we can find out what is wrong with them and how to help - I just wish Freddy was a little older and able to communicate a little better I'm sure it would make things a bit easier!

Tesscorm - I think it is pain related as well - a good idea about the shakes, tomorrow I will pop to the pharmacy and see what they have - I want him to learn to eat food though and not become dependant on snacking etc (which he is at the moment). My others have gone through periods of eating inanimate objects and odd food obsessions - its just Freddy's seem so much more extreame - could well just be him rather than any illness as such.

I am quite strict about things and this always worked well with the other 2, I don't want to be strict with Freddy if he is ill, but I don't want to let him get into bad habits if he is just being strange!! Maybe I was just lucky with the other 2!!!!

Thanks so much as always!
 
Funny you mentioned 'snacking'... Stephen wasn't diagnosed until he was 16 and I don't believe he showed symptoms earlier. However, he has always been picky and, with my newfound knowledge, I realize he always preferred low residue/fibre foods and he has always 'grazed' rather than having large meals. Certainly eats larger meals now :), but even at 11, 12, 13 years old, he would eat 1/4 of a potato and one or two chicken wings and say he was full (and this was the typical size meal for him) BUT soon after dinner would be grabbing a cheese string or a granola bar and then always had a bowl of cereal before bed. I just try to keep 'healthier' snacks available for him - I make mini quiches and freeze them (in a minute, he can microwave one or two) or tortilla bread and salsa. But, ironically, my daughter is the opposite! And, when they were younger, she would have two servings of dinner and would THEN be asking to eat what Stephen was refusing to eat! Our dinner conversation consisted of "Stephen, you need to eat more", "Emily, no you can't have his; you've had enough!":ybatty:
 
Tesscorm - that is very interesting - I am almost embarrassed when my little girl (who is skinny as anything) comes home from a playdate and the mum goes 'um you meant what you said about her eating a lot'!!!! both my 2 older ones will eat for England and then 30mins later 'Im hungry, what can I eat'?!! and my little girl literally will not touch fruit or veg (grrrrrrrrrrr!!).
Maybe I need to go down the healthy snack route with freddy he does like fruit but I wonder if high fiber makes him worse - I love the mini quiche idea - I am rubbish at pastry though I will have to see if they do pre-prepared mini cases - or I suppose I could just make a big one cut it into squares then freeze it or something - great idea!!!!
 
:lol: I buy the frozen quiche shells! I've never even attempted to make those! :)
 
Ha!Ha! - you should have kept quiet - I was seriously impressed!!!!!! (but now I will know to look in the frozen section!!!!
 
No Julia Child or Martha Stewart here! :rof: Hmmm, maybe that's why my kids chose to eat only mac and cheese for years! :lol:
 
Tesscorm - believe me when I say I am NOT a good cook!! - I have actually wondered if all Freddy's problems are down to my awful cooking!!!! - especially when my others start complaining that their 'tummy's hurt'!!!!

Also I have remembered another really odd thing he does:

5) Hits his head like he is really angry with it, and does the same thing with his eyes - rubs and rubs then gets really cross - really seems like a pain thing - Actually I think I may take him to the Dr just to check his eyes and ears are ok.

They are so gonna put me on some kind of munchausen's list (if they haven't already!)

I have been scaring myself on the internet about Picca - it is often seen in autistic or mentally retarded people - obviously we all think our children are genius's and although he's always been a little slow to reach his targets he has got there in the end and seems too 'bright' and 'stimulated' to have something going on with his head.

I just wish he was ok
 
I would say he is experiencing pain/gripes before he actually goes to the toilet hence the crying and being clingy.

I'm not sure about the pica but this coupled with his grazing and preference for certain types of foods may be his innate response to what his body needs.

I would take Freddy's lead at this point in time. It certainly seems that small frequent meals and/or grazing are suiting him better than say 3 large meals a day. As you say, try and keep it healthy but I wouldn't worry about the grazing or try and change it.

As Tess has said about her Stephen, my son also had very specific dietary preferences and as it turned out they were essentially what made a low residue diet. Did his body know something we didn't? It would certainly seem so!

Dusty. xxx
 
They are so gonna put me on some kind of munchausen's list (if they haven't already!)
[/QUOTE]

:rof: You would have plenty of company that's for sure.

As for all you awful cooks...I can share my recipe for pasta and boiled chicken if you would like:lol:
 
Aha!! The environmental factor researchers have not accounted for - parental cooking skills! :rof:
 
Now, now children.
Cooking is fun!!!!!!
You can't weigh as much as me and not love to cook!

Farmwife
 
:eek:
we have had a rubbish day:thumbdown:
Freddy has been clingy, VERY emotional to the point that he has been lying on the floor sobbing but then hitting and kicking and screaming at anyone who comes near him - I thought he was being naughty and having a really bad tantrum - eventually in desparation I gave him some calpol as I had tried everything else and it was going on for so long (hours) - 15-20mins later he was a different boy - then I felt like the worst mother in the world for getting cross with him and thinking he was being naughty when he was actually probably in pain:eek:
The calpol worked for about an hour then started to wear off, he has been coming up to me crying and wanting hugs everytime he has passed wind or faeces, Then this afternoon just as things were getting really bad again he vomited up everything he has eaten today - this is the first time he has vomited in over 3 weeks. I feel so depressed.
on the plus side he is very chirpy now he has vomited and nearly all the vomit went on the change mat me and him so I don't have a carpet to scrub!!!!
This has all not been helped by my oldest who is NEVER ill saying she had a headache and needed a lie down to sleep this afternoon (she really is never never ill), and now it hurts when she wee's - I am forcing fluids into her in the hope that we don't end up at the emergency Dr's for the 3rd weekend in a row!!!!
Sorry I just needed to get that all out - I feel better now:ymad:
 
You should always find the silver lining in everything!
Your carpet was spared. What a good and considerate boy.:thumleft:
Grace cried and fitted today.
All because a block fell in front of her.:eek:
She's not feeling well either.
I hope your little man starts to feel better.
When is your appointment?
They can't come fast enough.
As my dear old Grandpa use to say,
"hang in there, what's coming around the corner could be far worse".
I miss that man.




Farmwife
 
OMG - does she fit often? is she on meds? I hope tomorrow is better for both of our families xx
 
No. She's always been good.
One of our big sayings in this house is...
their's no excuse for bad behavior.
The kids know and understand it.
She's on antibiotics for the UTI.
She just threw up.
I'm up a creek with out a paddle.
I don't get it.:yfaint:
If you want, you can grab an oar and start paddling.
I need all the help I can get.

Farmwife

How's your little one now.
 
If she has fitted today and has never done so before - can you get her to a emergency Dr or ER? (im not sure what time it is with you) or call your primary care physician - or the GI nurse for advice? is she urinating ok? I am paddling as fast as I can and thinking of you loads while doing so xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 
:eek:WOW, slow down your about to go over the waterfall.:eek:

I'm sorry. I should have worded it different.
Does she fit. YES!!! Usual only when she's sick.
I'm use to it. She's been "off" for 2.5 years.
She's good natured when she's well.
Yes, I know an ER visit MIGHT be in the future.
I'm just hoping and praying that she'll go pooh, she'll feel better and
I'll wake up from the horrible dream. :shifty-t:
So now if you don't mind,
I have to get back to paddling against the current.:sign0085:

Farmwife
 
Can your ped prescribe you some miralax??

Per our GI DS is allowed to not "go" 3 days then we are to call since it could be an obstruction or cause his prolapsed to get worse.
He is on a daily dose of miralax - we just up the dose.

Or could you call the nurse down state to get advice on how much miralax to use on her??


IF she vomits any more please call your ped/GI for advice or take her to the ER since she has not had a BM.

not a doc but you need to talk to yours about this soon:ghug:
 
Have you try the old treatment for consiption, prune juice. Health nurse where in live suggest it for babies and young children.
 
Well at this point I know little Gracie has gone poo like a good little girl but am wondering how Freddy is doing...poor dear heart something is definitely bothering him...remind me of your next appointment date...

Gracie's date is Thursday right?
 
Freddy is still emotional but not as bad as yesterday, no more vomiting (yet) but diarrhoea (no blood yay!), not eating a huge amount and definatly lower energy levels - appointment Monday 11th (looks like I will have to take the older ones with me which will add to the stress and not help me concentrate!!). Hopefully this is just a little blip!!
 
More vomit this evening, more diarrhoea throughout the day, hardly ate anything, looked rubbish this morning - ran around all afternoon and joined in with a sports day - I can't work this little one out!!!! If I was his age, ate the amount he ate, vomited the amounts he vomits and had the diarrhoea he has - I'm fairly certain I would be lying semi-concious in bed!!!! bless him!
 
:hug: for your LO.

I know Ds had/has chronic vomiting as part of his crohn's since his stomach is affected. before dx he did the same thing- look bad- puke- then go on playing.
Rinse repeat.
Can you get any supplemental formula in him- I now he is young so compliance could be a problem.

Not sure of what you can "GET" at the store in the UK but before we were dx kids boost /resource breeze worked well for DS to at least keep some weight on him or keep him from losing so fast.
You can always ordered directly from the manufacturer.


WE have since switched to peptamen jr. since it is suppose to be easier to absorb and he has malabsorption issue.

How does your GI plan to help?
 
Well that does seem rather confusing!! At least he managed to join in the sports day - hope he had fun. Hope the vomiting, etc stops for him!
 
Sascot - he really did have a great time! - it was lovely to watch (although slightly exhausting running around after him!!). This morning he woke up covered in diarrhoea and was very unhappy - calpol seems to have helped, it took him half an hour to eat some cereal but he did eat some so thats good.
MLP - I have been wondering about supplemental formula, Im not sure what I can get without a prescription, and I think I will ask the GI about it next week - at least maybe he can suggest a type or give us a prescription for it. Im not sure if he would drink it - He will only drink milk or water, especially after the prep for the colonoscopy he will not touch anything else but i guess the formula is milky type stuff so maybe he would take it. I think he needs something as at the moment he is living on small amounts of mashed potato, baked beans and bananas!!!!
I hope all your little ones are doing ok. xx
 
Suzysu: I am so sorry that Andrew isn't feeling better. I am glad he rallied for a bit though. Kids are truly amazing. O often has moments of looking good when toilet and bloods show differently. Wish I could be more like them.

I am praying that your appointment on the 11th gets you closer to some answers and solutions and that Andrew gets some relief!
 
Now your speaking my language.

Ok, three things to try.
1-prune juice can work. For Grace it doesn't work
2- Juice and water. You've tried that. But keep it up.
3- Glycerin suppositories.

Is he straining to go. Is he uncomfortable. Does he act in pain?
If not watch him just like I had to watch Grace for 4 days.

Farmwife
 
No vomiting today - but the volume of diarrhoea has managed to give him nappy rash on his thighs from it all running down his legs (even though I changed and bathed him each time as soon as I knew he'd been). He now has a very odd rash on his tummy - he had exactly the same rash when he got really ill in feb-april. I have googled it but can't find a similar picture. No sign of mouth ulcers or any of the other horrid things he had last time. My daughter said she had a sore tummy today so maybe there is a bug going round - fingers crossed!
 
tiny red raised dots coming together to form larger areas - not heat rash, chicken pox, measels, or anything else I have seen either on my other children or on the internet, it doesn't seem to be itchy or bothering him - just odd!! I heard Gracie didn't have a good day yesterday - I hope today is better for you guys xx
 
Thanks Farmwife! - could be guttate psoriasis, Its not bothering him so I will monitor it for now! Hows Gracie today? any better?xx
 
Hope his tummy is feeling better. Maybe if it is just a bug then it could be just a viral rash. Funny story (just popped into my head at the word virus) - before Andrew was diagnosed we had quite a few visits to the docs. One day we sat in the waiting room and Andrew turns to me and says "want to bet they say it's a virus?". Well 10 minutes later the doc looks him over and says to him "there's nothing I can give you, it's just a virus". Well you should have seen the 2 of us trying not to burst out laughing - didn't think the doc would appreciate the humour! :)
 
Thanks again guys!
Sascot - your virus story - so typical - I could tell you a good one about Freddy but it would take too long!!!! I wonder sometimes if someone went to the GP missing an arm or a leg weather they might just turn round and go 'meh, probably just a virus' - I once went when I had pneumonia the GP gave me a long talk about coughing and how it was a viscious cycle blah blah blah then said 'well I suppose I should listen to your chest' and actually seemed very cross when she realised I was actually very ill!!!!

Thanks Dusty the spots are raised so I don't think it is petechiae (otherwise I would freak out!!!!). I think it might be fading a little so thats good - maybe just viral (except it never totally went away from last time - in that the raised area of skin was still mostly there just normal skin colour - weird!!).
Ok new symptom - the nappy rash has gone (although he still has the diarrhoea) - He keeps putting his hand sort of between his legs and bending his knees and moaning a little - like it's uncomfie, I change his nappy (no poo just wee), and he still does it with the new nappy on - I can't see any fissures, lumps or bumps? I guess it's another thing to add to the list - Ive said it before - I just wish he were that little bit older and able to communicate so I could try and work out what is actually going on!

I think I worked out why he got worse again! (I had thought maybe a virus as my little girl kept saying she had a sore tummy but she never developed V or D). I never used to give him grapes as it seemed to make things worse - the morning of the day he first vomited he ate grapes at a party we were at and I noticed grapes in the vomit and diarrhoea at first. He seems to have stopped vomiting but still has the diarrhoea, and is not eating as much as he had been - still the effect of the grapes? He has had one lot of dark red blood in diarrhoea(a couple of days ago) but the rest is kind of greeny brown, still got tummy pain and still really emotional, and still sucking on stones!!!! He sleeps about 14 hours out of every 24 (11 at night and 3 in the day - except today as he pooed at 5.30am!), but is really quite active when he's awake all be it very emotional!
Right I think I had better shut up now and get back to my massive list of jobs I have to do!!!!
 
Boy I feel for you girls with little ones who can't talk or who have limited ability to really explain what they are feeling:ghug:

I know you said you had to wait four weeks to see doc...do you have an appointment all set? Another June date to add to the list?

I also feel for you girls without dx. I don't know how you do it. I find it hard to wait for results from blood tests and my daughter is doing rather well, has a dx and a treatment plan. I will keep praying for answers for you all!

Yes now back to balancing my checkbook!
 
Our GI appointment is on Monday (eek!).
I have a GP appointment on Saturday to check out his ear\eye\general head pain! It may be (although unlikely) that the consultant has sent to biopsy results to the GP so I may find out more then - would be great if he had then I could be more prepared for Monday.

Back to the list again!! :)
 
Suzy, both my kids had reactions to nickel when they were very young (up until 3, 4, 5 years???). Children's clothing often have metal (nickel) 'snaps' in place of buttons... these snaps would cause pink/red, raised rashes wherever they touched skin (belly - undershirts, thighs - onesies that snapped up between legs, neck - tops that snapped up at back of neck, etc.). A few days of a hydrocortisone lotion cleared it up...

(Even recently, at 16/17 years, my daughter had a horrible rash which we think was a reaction to nickel getting into her bloodstream from an old belt buckle.)
 
I thought I would write everything down in preparation for our GI and biopsy results appointment tomorrow, as Dr's and this one inparticular make me very nervous I thought I would print a copy and hand it to the receptionist and ask that the consultant read it before he see's us - it is over 2 pages long!! - I don't want to not tell the consultant anything but I also not want to look like a raving looney - any advice?
 
Is what you wrote a symptom log? If so, yes I would go ahead and do that. Could only help and well if he thinks you are looney so be it. It is amazing how many seemingly unimportant or unrelated things really matter to these docs.

And as for forgetting things....I forgot to tell our GI in the hospital that my daughter was colic as an infant and taken off milk. When the resident offered Liv milk I said Oh no she doesn't drink milk since they thought she was allergic and was colic...That's not in the chart..um duh I forgot...that's really relevant...so I would prefer to look like a loon than an irresponsible, forgetful, stupid mother...oops here comes my guilt.

If what you wrote were questions I would hold those in my hand until they shared results and opinions etc and then fire away.

Good Luck!!!!!
 
Thanks!! - it is a symptom log (with a couple of questions at the end) - I have managed to get it down to just under 2 pages so I will look slightly less loony like! - I just know what I am like even if I took it in to remind me I would be to scared to look at it and then forget a load of stuff - if he reads it first then at least he will know the whole story!! As you say sometimes something small may mean a lot.
This guy already thinks I am a nutcase anyway so at least I won't be disappointing him!!!!
 
Definately worth letting him read it (2 pages or not!). Rather be thought of as a loony than sit worrying that you've forgotten something. Think my doc sees me coming and rolls his eyes :yrolleyes:. Wonder whether some just wish their patients mums would just say yes to whatever they're told :lol:. Good luck for the appointment.
 
I'm patiently waiting :)yfrown:) on how it went.
I still haven't heard ANYTHING about my Grace's test results.
Farmwife
 
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I know right?! And she is 6 hours ahead! Well probably burning dinner now so best we let her post after everything is cleaned up.
 
:D:D:D:D
Guys! guys! guys!
you should know what hospitals are like - just because you have an appointment at 2pm doesn't mean you get seen then! after that we had to wait for bloods to be taken and then the hospital pharmacy (don't get me started on that!!), then had to pick the other kids up from my (by now very long suffering) friends house, then had to get home in rush hour traffic and biblical rain - and I will have you know I managed to re-heat sheppherds pie in the microwave just fine!!!!!!!!!!!!!!!

SO we saw a different paediatric GI, who was LOVELY!!

SO Freddy has put on 200g AND grown over 2cm!!

SO his biopsies came back clear :dance::dance::dance::dance:

SO the GI has put him back on senna, which is right where we started a year ago (it didn't work then even at a high dose) :ymad::ymad::ymad::ymad:

He says that Freddy is getting backed up and that is what is causing all the vomiting, diarrhoea, abdo pain - Im not sure where the mouth ulcers, bleeding round bottom, blood in poo, sores at the corner of his mouth, rashes fit in with that but to be fair he hasn't had any of those since he was really poorly earlier this year and maybe it was just all coincidence or had totally benign origins (fingers crossed). For now I am happy that he has gained weight and maybe now he is bigger the senna will be able to do its job? I also have to put him on a low residue diet (which I hate - white bread, all that unhealthy stuff!!). I will try whatever they suggest!! A tiny bit of me would'nt be surprised if the symptoms we had earlier this year resurfaced at some point, but for now I am happy that we are not suspicious of any nasties!

Can I still be a part of this forum? I find the diet stuff really helpful - and where would you guys be without me to laugh at??!!!!
 
Certainly hoping you aren't planning on going anywhere!!! :)

And am so glad of Freddy's results! You must feel like a huge weight has lifted! :banana: Hopefully, the senna and low residue diet will do the trick! I so hope so!!! :) :)
 
Well let me start by saying, I'm glad your GI is "lovely".
However, I've been "back up" and I know other people that have been "back up" and I or them have yet to have "bleeding round bottom" or "blood in poo" and or sores or rashes. THANK GOD. That just seems off to me. I guess until they can see something on blood test or other testing, this will have to do.
As far as staying around.
:kiss:
You and I shall be friends to the bitter end.:pillowfight:
I'm still hoping to make a good cook out of you.:shifty:
My homemade pastry shells are to die for!

:heart:Farmwife:heart:
 
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I am so glad the biopsies are clear!!! Although a little confused as to why the low residue diet for backing up as I have always heard more fiber but I am not a doc so I will defer. At least hubby will be glad you are staying out of the high priced markets for awhile.

Go ahead try to get out of the club...every time you think you are out we drag you back in (said in my best Al Pacino impersonation!). But truly hope you have no other reason to belong here other than culinary creativity!
 
:ghug:
AWWWWWWWWWWWWWWWWWW you guys!! Thanks for letting me stay! I honestly don't know how I would have survived the last few months without you!!

It doesn't all quite make sense to me either - I am kicking myself for not asking where it would all fit and also about his CRP and ESR levels as they had been quite high - I am such a wally - They didn't test his iron levels at his last blood test :ywow: So he had to have another one today :( and I think he tested for other stuff as well but I was so stressed about Freddy not getting too upset I forgot to look at the form :blush: (Freddy is too young for counting but we did try pointing out ears, eyes, etc on his teddy, and i also talked to him about the blood sample first - It was still awful but I think it was slightly better than last time).

I am a teeny tiny bit freaked out by researching a healthy low residue diet as none of the websites that I have looked at have mentioned it for constipation and all of them talk about inflammation, crohn's or UC etc. - but I am ignoring the feeling at the moment and am more than happy in the safe little bubble that I am in at the moment!!:wink:
 
I don't know a lot about low residue diets other than Stephen was put on one for a few days prior to his colonoscopy... but, I believe low residue food is also easier to digest. Did the GI suggest a specific time period for the low residue diet? Perhaps he is trying to allow Freddy's GI system to 'rest' a bit and heal??? It's certainly not a diet you can/want to be on forever but, for a while, I'm sure he'll be fine. Is there a follow-up apptmt scheduled?
 
Oh yeah! Stay in the bubble. I ventured out one day to read the label on Boost and Ensure...third ingredient was high fructose corn syrup...couldn't pronounce 99% of the others. Seriously, when you child is acutely ill the first priority is getting them better even if it does mean white bread and Fruit Loops! You can work on the rest later. Keep us posted! We love poop!
 

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