We have got ahead of ourself and did not allow more time in between challenges for Curran from the multiple elimination diet. This kid will either react right away or show a delayed gastro blowout in 24 to 48 hours after a food ingestion of a suspected problem food. We have been on this diet for a month and it was supposed to take 17 days. We thought we saw a little glimmer of problem foods with wheat, corn, and soy and chose to move ahead anyway. Today we paid for it in spades. He is wretched. Absolutely wretched. His eyes are so raccoonish that he looks like he was in the ring for 20 rounds again. And lost. His stomach is swollen more than usual, his bowel sounds are trememdous. His breath reeks. His tummy hurts. His behaviour is beyond belief. He actually hit a teacher at daycare today. Not a proud moment for me. I am in shock.

We are going back to basics again. We know that milk is a no-no and corn is a big problem so we will go for 1-2 weeks on this bland awful diet for Curran and then move into other foods again but very slowly. I am going to lose my mind with this soon.

What on earth am I going to do? The daycare is suggesting big time we have him get a psych evalutation. I am going to do it. My ped says no and puts it down to food reactions and GI problems and I know that it is a big part of it but there is a point of understanding behaviour has consequences. I am at a loss. I feel like we are the worlds worst parents in the world and unable to cope with this.

It is like it was creeping up slowly and then WHAM! again.

Either this kid reacts to dairy (for sure), corn (really sure), wheat (possible), soy (really sure) and rice dream (really sure). What the #&#^$*&#&$*# am I supposed to give this kid to eat? Does he have so many intolerances that he can not eat anything other than bland? Does he have some horrid GI issue that has to be addressed? Is it a question of poor parenting and stool holding going on for years and the food reactions are coincidental? I really do not know anymore.


Pardon me whilst I wallow.

That's got to be tough...Poor Guy!

Wouldn't it be easier to do allergy testing then to turn him into Mike Tyson!???

:hug:, Leigh.

First of all, it is not poor parenting. You've "parented" me many times here on IRD (when I was upset about something Em was going through with her health issues) and you do not have poor parenting. Don't even go there. I won't let you! ;)

Poor Curran. Has he had any scopes done?

I think I would go ahead with the psych evaluation, too. One of my students in my classroom had one done and even though nothing was found his parents learned a lot about him and it helped them deal with some of his behaviors. Perhaps it will help the GI doctor understand that his GI issues are affecting his everyday life.

:smt056 What does Bill think?

Oh, Leigh! I am soo sorry to hear you so frustrated!! And, I don't blame you either! Maybe seeing a psych won't be such a bad idea since he is sure to be frustrated and feeling crappy, it may help and they may have some advice. What are you supposed to feed him? Does he see a specialist, I can't remember? What do they suggest aside from those things that you listed? What is out there to feed the little man? :smt056

Sorry Leigh...When I hit reply I didn't realize it was under allergies:doh: Silly me, so I am sure you have had some kind of testing....

Poor little guy....I hope you get his eating, what he can and can't have back on track soon.....

:hug: Leigh. First off, i'm with Amanda on the "Don't even go there" bit about being a poor parent!!! *showing you a knuckle sandwich* :hug:
Also, what Amanda said about the eval. does make sense. Although nothing may be found, you may just learn some things about yer little man there!
It has to be ever so frustrating to keep going backwards with this diet for him but you know that it's important for you AND for Curran that you find these "triggers" that are causing this. I think you are doing the best you can, wait...I KNOW you are! I only can hope that this appt. you've got (months down the road yet, right?) will lift a tremendous amount of weight off your shoulders.
As for what can you give him to eat..:dontknow: I wish I could be of some help but SURELY someone has to help you out there! :(
Wallow all you want because you're allowed to! you give so much advice for us here and every now and then it HAS to be your turn, eh? (Just don't wallow too long cause we need you! LoL j/k) :hug:

Leigh--You are a wonderful, patient, persistant, aggressive, attetive, loving (I could go on) mother, so don't give us any of that crap! We don't buy it! You have been through heck and back with your boys and this horrific diet, but you're doing such a great job at figuring it out. I can't imagine dealing with so many food labels and limitations at one time. You deserve a break! As far as Curran's behavior goes, YOU know him best. If you feel okay doing the evaluation *just to know*, then go ahead with it. But, if you know that his GI issues are the cause, then screw the daycare and don't. Either way, you'll make the right decision, because you know little Curran like no one else. I hope he begins to feel better.

Leigh ... I sent an email to you and a good friend of mine whose daughter is allergic to everything under the sun. They eat the most phenomenal meals! Not in any way white and bland, lol!

Thanks. I am looking at this letter from the daycare and I am feeling so bad. I can not believe he hit Wendy. In the face no less.:doh: He says he did it because she was not rubbing his back?! What? That is NOT my kid! She says it is completely out of character for him, too.

He says his tummy is sore again and I can hear the bowel sounds big time. His abdomen is distended again and he looks awful. I KNOW he is in pain and there really is nothing I can do but put him back on the begining part of the diet where he was a great kid 3 days in and until we introduced other foods to see if we get a normal kid again. I was so skeptical of a link between food and his behaviour and yet I know there is a link, but to SO MUCH? He was tested for allergy and the only things that come up are peanut and treenut and a very low RAST to milk.

He has never been scoped. He was diagnosed with GERD at the age of 3.5 years after puking his guts out all over my table and house for over 3 years (often clearing my table entirely). He has had these horrific poops for over 2 years now. Our previous GI NEVER tested him for anything, including any bloodwork. He passed his hands over his stomach and said " He is a stool holder" and instructed us to give him a diet to follow and mineral oil by the bucket. I have done everything that GI said to do and here we are 18 months later with the same problems. I am so very fed up. Our ped has referred us to another GI (at the childrens hospital thankfully) and we see him in May. I have made an appointment with an enviromental allergist and it also falls in May. Not sure I can take this until then. Planning on calling the allergist and BEGGING for a cancellation appointment.

I have to get some vitamins for him as he has nothing really coming from this diet to keep him complete. Tomorrow is rice bread and grapes some sliced chicken (not basted) and rice. Wonderful stuff for a kid who is prone to constipation? How can he be constipated when he blows his colon so often? I have NEVER understood that!:banghead: He blew it on Saturday and actually made it to the toilet on Sunday but it was not pretty to clean off of him. No 4 year old could have wiped that.

My problem lies with the behaviour. It is so bad at times. I know he has a problem and I do really honestly think it is related to his GI issues. At what point do you say "too bad, but you have to learn how to deal with the pain and behave regardless?" I have told him and showed him how to hug himself and yell "I am angry" when he feels like hitting again or if he is really mad or in pain. Let us hope he uses it. What else can I do?

What if my kid is psychotic? I know I brought the parenting into it as I should be able to help him cope with whatever is going on. Maybe I am too lenient and allow the excuse of pain, but it is hard not to when the kid is on the ground writhing around for hours at a time.:banghead:

I feel so bad for him. Bill is very much in shock as I am. He was also livid tonight, not something you see in my extremely even tempered DH. He waited to get calm before addressing Curran and we have talked about the testing. We will go through with it. Again, I do not want to find out that he has some terrible psychological problem we are not addressing and let it go on for years.

Whatever it is we will deal with it but not knowing is killing us. It seems whenever he has anything to eat he is like this and the colon blows start. We actually had a couple of nearly normal poops when he was on bland. They were yellow and light tan but at least I was not cleaning his shoes off.

Thanks again. I am really so very much beside myself tonight.

(Jumping on the band wagon here about you not being a poor parent) You are the best! And a wonderful "parent" friend to all of us on here.
Your poor, poor baby. That has to be horrible for him. Curious, what does his breath smell like when he has an allergic reaction? Sour??? Just curious.
Hopefully you will get some answers on some "bland" food or SOMETHING.
Good luck, keep your chin up and trudge forward grasshopper!:smt043
{{{HUGS}}}:hug:

Oh, Leigh, :hug: :hug: :hug: :hug: Your in my thoughts tonight, hang in there! He is a good boy, he has alot going on, even if he didn't, things like hitting happen when your a toddler! :smt056

:banghead: :banghead: oh Leigh, I posted then your second post popped up.
Your child is not psyhotic (sp). Please don't beat yourself up.:banghead: I know, easy for me to say. HOpefully you will get some answers with your environmental allergist. Do you want all of us to write a letter and send it to him, maybe they will "squeeze" you in!:smt036
I don't think you are being too leniant and blaming it on the food. You know your child, if this is not his normal behavior, then there has to be SOMETHING!
Hang in there.
{{{HUGS}}} {{{HUGS}}}} {{{HUGS}}}:smt056 :smt056 :smt056

Leigh, I have been following all the posts on this and probably have missed some so if I say something someone else has said, I'm sorry.

Firstly you are a phenomenal mum, most mums wouldn't do this for there child. Sometimes, unfortunately you have to be cruel to be kind.Also your son is in no way psychotic. He has real issues with his bowels and this is leading to his behavior. I know with Parker I was unable to believe that a "little reflux" could cause such terrible characteristics in a child, but I was wrong. On the right meds for his problem my child is a saint. He is totally different.

You will find the same thing.

I know the GI is in May but is there any way you could get in sooner, or is there another GI you could try in the meantime (keep the other appt. just in case) I think that from looking at the whole picture it may be instead of food allergies, the food (could be any food) is upsetting whatever bowel problem he does have. He definitely needs testing. If it is IBS then stress plays a big factor and it sounds like he is also under stress and will actually play a big part in all this.

I know I told you about Parker when they thought he had Chrons Disease, this was picked up by a simple abdo ultrasound. Surely your normal Dr could send you for this kind of test and also blood work? just to get the ball rolling a little. When Parkers ultrasound came back iffy, instead of a 3 month wait for the GI, they got me in in 3 days.

Finally you and your husband are doing a great job at this and seem to be very supportive of each other which is great. Keep it up, there will be an end eventually.

PS Nothing to do with you, but while writing this my older son has been chucking his lunch at his brother thinking it was fun (Parker is encouraging him ) so I sent him to the quiet chair. When I let him off, he gave me a picture and said, this is for you mummy, to stop being grumpy- kids!

Rachel, that is soo funny what Cooper said. *sigh* out of the mouths of babes!

I would have him scoped. I'm starting to believe he has more going on than 'just' allergies and intolerances. Does he puke? I'm assuming his reflux flares w/ the reactions? It might not though. W/ disorders like food protein induced entercolitis syndrome and eosinophilic disorders, more often than not, there are no + allergy tests. I would be more inclined to say he has an EOS disorder than FPIES, but who knows. I would go get him scoped him though, and sooner than later b/c you want his system reacting inside so they can get a good pic. If you do it, might as well put him back on wheat too and check for celiac. I kinda of understand what you're going through so please feel free to pm me anytime! I'm almost jealous you get to do food trials. (How sad am I?!)

Rachel, Curran is a great kid full of love and really funny when he is feeling good. He is a very intelligent child and loves to communicate. When he is feeling lousy he is just your worst nightmare. He is two different children it seems when his tummy pain starts, and unfortunately it is often. When he was on the bland diet to begin with we saw a big change in a few days and received plenty of "happy sharing days" at daycare. They noticed.

Our GI appointment for May has already been bumped from its original Sept date due to ped intervention. GIs are scarce here and average wait time is over 1 year. I have Curran's old GI to go to but he is useless and never has done anything for Curran. He is convinced he is a stool holder and spends 2 minutes with him and then 10 minutes telling me to get him tested for ADHD and give him vats of mineral oil. Even the ped agrees he is not ADHD.

Thanks for sharing what you went through with Parker. It really helps. I have spent most of tonight researching (again) IBD, etc and I am going crosseyed. I really do not know as he has symptoms of it and yet he is tall. Arg.

Jennifer, Curran used to puke all the time. He was a puke machine as a baby and toddler and never diagnosed with anything other than "strong gag reflex" which is what I heard for the other two as well. It turns out it was GERD and it was not until Iain hit FTT that we started to diagnose the kids backwards. Curran has weight stalled and fluctuated quite a bit in the past, but never hit FTT.

A lot of times I do see that his reflux is aggrevated. It is harder to tell these days as he now swallows (this is a nice change as far as we are concerned!).

I know he needs to be on the foods he reacts to for any scoping but I can not take another 3 months of this and having the daycare telling me he has to be evaluated. I know he has issues and behaves so badly when in pain. Maybe since they saw him change during the first time we did the diet they will see it again and cut Curran some slack until I can get someone to help him.

He goes for a CF test next week and I will get his bloodwork done then as well. Plus, I still have to get a stool sample yet again. Trick is to get it to the lab right away. The CF test is a formality I think from the ped. I am in no way worried about it.

Scoping or more bloodwork is needed. I do not know where to start. My biggest fear now is that I take a completely normal child to the GI appointment and am told "see ya". Mind you, that would be great but I want to know what we are dealing with since he can not maintain this diet forever.

We will run with this bland diet for 8 days again and then start introductions again, but we will tailor it to suit our needs this time and stall for a few days between intros. I just can not believe everything he eats causes these problems and yet it seems they do. Ack.

Thank you for everything. Any and all enlightenment is most appreciated as I feel suddenly brand new to this again as I did not expect these results.

Emily, his breath reeks sometimes of poop, sometimes it is just like acid, sometimes it is really sour.

Oh, and Rachel that son of yours is so smart to do that picture and give it to you. That is so cute and makes it really hard to stay angry at him, eh?!

Leigh, in your last post you commented on the fact that his breath smells like poop. I had heard of this before and this is actually something that you should tell the Dr. I just gave it a quick search here are some links.


http://www.drkoop.com/ency/93/003058.html

http://health.allrefer.com/health/intestinal-obstruction-info.html

http://health.allrefer.com/health/crohns-disease-info.html

Give them all a good read, they go lower than the ads and go to next pages as well

Basically it isn't a good thing to have and may indicate bowel obstruction- has he had any x-rays to clear this, a normal x-ray should show it? My sister suffered with some bowel problems a couple of years ago and this was one of the things that she had to look for. Also vomiting feces. Does he get a fat and distended belly? Thats a sign of constipation. I know he goes a lot, but if somehing is blocked the poop has to go around and it has to be runny to get out if you know what I mean.

If it is blocked (with poop) have you tried the mineral oil before as your old GI said and what was the result.

Also what symptom is small/tall for IBD?

Sorry just another thing for poor you to look at.

Unfortunatly, the GI won't send you away (unless he is mad) there is definately something going on, he will work it out!

Oh Leigh honey... :hug: :hug: I'm looking out for you.. as who looks out for the mummy..right??
Poor, poor Curran... :-( The little guy must be infintely miserable. I'm sure him hitting the teacher was just "acting out" from pain or miserableness. I hope that there is no long-lasting consequence of that incident....like him being asked to leave or anything.....
I really don't have alot to offer on the advice end... he's been tested for celiac hasn't he?? It's not Chrons is it?? I only ask as his symptoms are very similiar to my cousin, who has this.
Oh hon, you're a FAB Mum so don't ever second guess yourself as a parent. :hug: :hug:
The psych eval. may help you understand how he works as a person and that may in turn help you to guide him with his behaviours. Although you have to admit, with everything going on, he must feel wretched.
DO keep us updated...... :hug: to Curran from me....

Leigh your not a bad parent and your child is not psychotic. I know after discussions with our GI on the subject that he really believes in the link between behaviour and food allergy and its not as simple as they feel bad therefore they act out. Allergies and intolerances are really complex and they have some sort of effect on the nervous system etc.

Its such a difficult area and I know I'm stressed to the hilt simply dealing with a milk protein intolerance. I think your doing such a fantastic job with your boys and you always give such spot on advice to everyone here on the board. I don't know where we would be without you.

I just can't get over the fact that your GI has done NOTHING for the poor guy other than touching his tummy!!! :shock: :shock: :shock:
I know you well enough to know that in May (unless you get in sooner) you will DEMAND further testing of SOME SORT!
If he's a saint when he's on bland foods, then you've got to know it's something food related. Someone said it best...you know your child...and if you see it's only food that triggers this "behavior" then let's figure out what's going on with his gastro system. On the other hand, Sarah did say that an eval. may help you better understand how he works as a person which, in turn, will help you guide him w/his behaviours. <sigh> This is lousy and again, I'm really sorry that this is happening to you guys. You deserve a break!

Just catching up on posts this morning and felt my heart drop when I saw this thread. Leigh... you ARE a great parent!!! Please don't doubt that... not for one second! You keep trying and trying and trying to find any answer that will help your little guys - only good parents do that. I don't have anything helpful to add, but I think and pray for you often.

Oh, Leigh--I'm sending you, first and foremost, some really big hugs! :smt056 :smt056

Secondly, you are NOT a bad mother! Bad mothers don't worry this much over their children, put their lives into total upheaval in order to find out the root cause of their children's issues or seek counsel and support from others in similar situations.

Thirdly, IMO, I would try to hold off as long as possible on the psych. eval--I don't know how things are in Canada; however, here, the evaluator usually doesn't give credence to dietary difficulties as a cause for poor behavior. I'd be afraid that Curran might be misdiagnosed (and therefore labeled forever)...all because of some dietary issues.

Is his teacher someone you can sit down and have a heart-to-heart with? Would she be willing to listen to you and come up with a plan that doesn't involve a psych. eval at the present time? If the diet doesn't work, then, by all means, go ahead and have him eval'd...I've just seen too many kids misdiagnosed/unfairly labeled when their issues were caused by external factors.

I agree with you Mary, about the being "labeled" bit. It's such a tough choice to make. But, if it's a psychologist (not psychiatrist) evalutaion, s/he can't diagnose anyway... well, at least, that's how it works here. They can only suggest how to manage behaviours. (Is that how it works over there??)

Didn't think of that, that is a very good point, Mary.

Big hugs to you and your family Leigh :hug: . It has to be so frustrating to try and get things in order and see what he can tolerate. Don't beat yourself up you are a great mom and try everything that is in your will to help Curran.
About his behavior, if he is in pain all the time I understand his outburst and things he does. When I'm in pain I get aggrevated easily too and snap at people. I just hope that this little man will get a break soon.

Leigh ... did you get heidi's email? just send her all the info you've already posted here. paste it into an email.

I threw myself on the mercy of the allergist office and they listened. Our original appointment in May is now Feb. 28th.

It still seems like an eternity away.

That's great, Leigh! :iconbigg:

Leigh do you have one in May as well for the GI or is it the same one?

Either way good news to get something started sooner! Not long to wait now.

The GI is still in May. This allergist was originally in May as well. I called and thought "hey I have nothing to lose" and they listened. She said I sounded stressed.:laughing: Maybe a tad.

They are with great compassion there. It was terrific that they bumped him up so very far. I just finished filling out all the questionnaire and will add sheets of other history to it as well and take it over tomorrow.

My greatest fear is that nothing will come of any of this. Isn't that insane? If this GI tells me that he is "a good height and a good weight and what more do I want?" someone is going to get hurt. I know people who have gone to this allergist and he is apparently very good at listening. Good. I have quite a lot to say.

Off to read the links you provided below. Thanks. You are all the very best. :hug:

Leigh, even if he is good height and weight, your sons bowels are not good and he is in pain. Before I go to a Drs now I get a bit aprehensive cause I generally have it worked out and I am afraid they go- no we aren't going to do that and just dismiss it. I can tell you, every time I have gone prepared there has been no dissmissing- you will be the same.

Glad that you got him in sooner, hopefully you will have some answers soon. :hug:

So pleased the allergist fitted you in sooner, really hope they find some answers for you.

I hope you can get some answers from them! It's so frustrating when nothing happens there. Be prepared for the SPT and RAST and then if nothing from those, be prepared to ask about patch testing at maybe your followup appt. That's the only test we got + on for Evan, soy, pea, and wheat. He only tested for 5 things though which I thought was odd, so I'm thinking of getting yet another allergist and having him tested for more stuff. Hugs!

I went to see my ped today with him as I wanted to know what she thought of having him get a psychological assessment done. I am very worried about them not taking food issues into mind and that he will be labelled something he is not for life. She does not think it needs to be done and still feels he is a normal 4 year old and that his behaviour is pain linked. She has seen him at his worst as well so I trust her opinion. Today I asked her if he is ADHD and I am blind to it. No was her answer. She asked all about the diet and wonders about nutrition. I said the same thing is bugging me as it is so very restrictive. She wants us to keep on the bland until we see "normal stools". After 2.5 years of chernobyl poop I am not sure I will be able to identify it when and if it happens. I asked if it takes longer than 2 weeks what do I do and I am to go back to her.

I told her about cheating on her and going to the environmental allergist. She was not so impressed. She views it as unorthodox allergy testing and feels it will be of no use. I told her that we have dealt with this for so very long that I am looking for anything that can help. She says to see where it takes us but she does not reccommend it. Since one main reason I want this testing done is to find out where on earth I go for a diet when he seems to react to everything she told me she was going to refer us to a dietician. Wow. I am to call our old dietician we had assigned to us when Iain was under the home care and see if we can get her again. I did not see that coming but am very grateful as I found her to be a good help to us with Iain.

One thing she did say is that whatever it is she does not feel it is a horrible thing or progressing as he is not losing weight. I agree and have kind of did my armchair analysis and scratched off some horrid diseases as a possibility as a result. When I mentioned IBS she says she does not think a child so young would be diagnosed with it. A lot of it does fit for Curran. I do not know. He is still so very much in pain and gets sick all the time. SHe mentioned something about bloodwork and disorders and how his bloodwork shows some possibility but I am so tired I can not recall what all she said. It will pop into my head after I log off likely! lol

Altogether far too much fun. He is actually better today and daycare was happy. Not estatic, but better. He ate paint today. Chowing right down on it. What on earth would cause him to do that at the age of 4? Anyway, it looked like he had pink lipstick on when I took him to the ped.

I don't think I'd write off IBS at this point, Leigh. Have you looked into how they diagnose IBS? He'll be seeing a GI again soon right? Maybe they'd have some better ideas. The only thing you can do is your best with Curran until he gets in to see a good GI. Just FYI, I had a friend who had terrible bowel issues from when she was a small child and didn't get diagnosed with IBS by a GI by description when she was 22. She would horribly, horribly constipated, have stomach cramps to the point of dropping her, then a horribly painful "blowout" as you termed it for lack of a better word. Stress made it worse. She was not allergic to any foods, but was told to reduce the amount fat in her diet and to reduce dairy products to the bare minimum. It made her so crabby and still does. I feel so bad for Curran that he has had little relief from even a very restricitive diet. I hope you can get answers soon.

HURRAY! That the allergist got you in so quickly. That is WONDERFUL! I am so happy for you!
Paint? Maybe he has found what he can eat! LOL:laughing:
Anyway, just wanted to say that I am soooo soooo glad that you got into the allergist. Just about 2 1/2 weeks away.
:hug: :hug: :hug: :hug:

Did you ask him why he ate paint? The first thing that came to mind was pica, where you are craving things like that b/c of minerals lacking in your own system. That would make to me say more malabsorption issues as just b/c he's on a bland diet, doesn't mean it's void of nutrition. Do you think you could get some Neocate or EO28 for him (that's the juice box kind)? No matter what he was or was not eating, this would be close to complete nutriton for him. I also thought of lead based paint having a slightly minty taste. Have you had his lead levels tested lately?

Jennifer, I never thought of that! I just thought it was a kid eating paint, because kids do things that we don't want them to do!!!
I forgot about the weird things that people crave when they are lacking something. Definetly something to check on!:smt036