This is my first post, Its in regards to my daughter first diagnosed in 2003 when she was two with orofacialgranulamotosis, 2011 diagnosed with coeliacs and chrons.
The ofg is allergies to cinnamons and benzoates which is in everything from food to toiletries The ofg can also create underlying probs within the glands, when she starts to gets stressed or has eaten something she shouldn't her lips which are very thin start getting to bigger and can sometimes just about touch her nose,crustations form in the corner of her mouth like cold sores and ulcers start appearing inside her mouth and the gums change in colour and can start to deteriote rapidly, her tongue has swelled that bad she couldn't talk properly and was admitted to hospital, the latest one was her eyes ,her left eye had this growth just appear over night and she was struggling to see or handle the light that took 3 months to clear up and numerous weekly hospital visits and meds and looking like a pirate as she called herself, thats just the basics of what her ofg is capable of.
I find stress is a major trigger for her which is hard to control at any given time if you aren't the cause of the stress,I have gone back to old school with her in her foods as in all natural no processed the rule I applied to her is DON'T EAT OR DRINK WHAT YOU CAN'T SEE.(for her it means if you didn't see how they made it or don't know how they got the end result then you shouldn't be eating it)But it doesn't help when you have people who think they know better and decide to give her the foods shes not allowed as one of the comments was, you only live once your mum doesn't need to know...but alas she reacted to it so yepmI knew, which came from an absolute ignorant person.

In all she has a really everthing I get her is high grade non processed good meat and vege, she forgets about all the probs til the...you are so dainty,why are you so skinny etc etc.We went shopping for her uniform and for her pe gear she had to get a size 4 shorts and the lady was like you need to eat more cause you are so skinny my daughter weighs 27kgs and is very tall.

I haven't been able to source anyone who has OFG for extra support here in nz, when she was first diagnosed I was told she is the only one in NZ who has this as starship checked their records back 25 years and I even put it through the national data base of alot of other support groups but nothing surfaced, I am finding that our medical specialists just google everything about this one in particular so why am I paying them if they just google it,what bothers me the most with some of the medical profession keep referring to the statistics of most illnesses,

When she had the endoscopy done I was allowed to be present,part of me wished I wasn't because what I seen was hard for me to see, her whole insides were inflammed and ulcers everywhere and she never showed that pain that she mustve been feeling, at the time as a Mum before going in there I already felt in my heart she had both but also wanted to have the benefit of the doubt side to me,the endo spec was looking only to confirm coeliacs.....while the specialists was doing the procedure she said your daughters has chrons and coeliacs....but upon my daughters specialist talking to the actual endo specialist he convinced her that perhaps becuase of the gluten we had to feed her for 3 wks, that may have exaserbated the result to looking like chrons.
Her specialist was struggling with the fact that she could possibly have coeliacs and chrons together he said its highly unlikely, this is after two positive through the roof stool test where she hit over the 500 mark on the second one prior to the endo procedure, I explained to her specialist just because one child doesnt get it doesnt mean another child couldn't get both, hes judging things by the statistics.I explained to him I thought it highly likely given that ofg is a masking disease for chrons.I wish they would treat people as they are which to me is everyone in their own way is unique and don't react the same way as others to foods and meds we all react different so quit referring to statistics that didn't include the patient thay are talking to at the time.

It pisses me off to no end that 2 weeks prior to the endo they had the results of the first original stool test but because my daughters specialist was away and things weren't communicated the results weren't given to the hospital as they could have done both test while she was under the first time.

So we retest again end of november test one, and dec test two after being g free and same result so now its colonoscopy which they will be doing this month.

Then its the dietician!!!!!they can tell me what she cant eat for the gfree whichis great but it goes against the ofg menu ,she actually didn't even look into my dughters history prior to the appointment and they wonder why I'm getting brassed off.

Don't get me wrong I don't want my daughter to have this but I do want the answers sooner rather than later, upon our last meeting in Nov my daughters specialist said another specialist would be interested in seeing her because of her multiple illnesses, I said as long as my daughters not going to be someones gunea pig and can actually help.

I'm positive some of the parents and even people with illnesses can relate to me saying after each appoinment I swear I need anger management lol.

Any advice on the chrons side will be greatly appreciated as I stated above I know everyones food symptoms affects will be different but I keep a watchful eye on my daughter for all her reactions and then of course that food is eliminated it would be just great to have a bit more known knowledge from others who actually experience chrons.

Apologies for going on and on just fustrated is all.

First off, Big hugs What a huge amount to be dealing with for both your daughter and you.

I know how frustrated I get with the specialists myself and I have only Crohns so I sympathise. What would you like to know about Crohns specifically that would be helpful and I will answer best I can

Hi there Roscoe

Thank you for the big hugs.Apologies for not replying to you sooner, I don't get here to regular. Basically I think with the chrons..What I would like to know is.. Are there definite specific foods that I should be avoiding with her or can try to see if they need to be eliminated from her diet?

Are there specific symptoms with chrons when you are having an onset of the pain that would be indifferent to the ones with gluten?

Is there anything extra that helps alleviate the pain that accompanies chrons?.

I have to say one of the most frustrating things about Crohns is that it is so different for everyone. Meds are trial and error, Food is trial and error and what might work for one person doesnt neccessarily work for the next

This is no help to you I know For me personally I started a food diary and used that to pin down what didnt agree with me and what I was ok to eat - For the most part. The thing that people dont understand with Crohns is that one day you can eat something and be fine the next time you eat it it could potentially make you sick. Another moment I know. It really is the most frustrating disease. So if DD doesnt have a food diary I would start one of those and also by eliminating the obvious; Spicy food, carbonated drinks, too much sugar, white wheats and dairy. Anything with skin, pips, seeds or pith is not great for Crohns and they can aggrevate the ulcerations. In saying all of this if DD is and has been fine on any of these things then leave them in her diet and just concentrate on anything that you think may be causing more pain/discomfort.

Im not gluten or lactose intolerant where some Crohns sufferers may be so I cant help with that. The 1st symptoms I experience when Im starting to flare are more frequent toilet stops and the pain/gas. Symptom wise if I am flaring badly I am terribly bloated/gassy, blood in stools, very frequent toilet stops not to mention losing weight, low appetite and abdo pain. At my worst I could not get out of bed, except for the bathroom. I have ileocolic Crohns - the very bottom of the large intestine so my pain etc is centred around there and my lower abdo.

Pain wise apart from tramadol when hospitilised I have never taken anything for the pain - Anti inflammatorys are a no no and panadol etc just doent cut the mustard - Im unable to take codine but know that this can somtimes help. To be honest if I am finding myself in alot of pain I take Prednsione (steroid) but I dont recommend this unless your fully aware of any and all side effects.

The only thing apart from pregnancy and subsequent Breastfeeding (Def not an option for everyone I know) that has kept my diesase at bay is Infliximab (remicade) infusions which I had 6 weekly over the course of 8 months, I fell pregnant not long after my last one so I am still well

I hope that helps a little bit, if there is anything else I can help with dont hesitate to ask. I hope you and your daughter are able to get on top of this

Yep we keep a food diary and yes fully agree what works for others doesn't aways for the rest. She had dietician today and it was excellent to finally hear the words you have gained 1.2kg in the past 3 months so that was a bonus.

She gets prednisone for the ofg when that starts its reaction, but if I'm able to keep the stresses at bay I can usually keep her drug free as the prednisone is usually 20mg a day which is alot I think, for her.

The blood in stool was my first trigger for her and when she was checked there was no fissure no haemmoroid by gp, so i said maybe you should check her for chrons because the ofg is a masking disease for chrons but they felt it would be unecessary as she had a colonoscopy when she was 4, even though my daughter and I had said and mentioned a few times about blood in the stool app her spec didn't hear that,but when she got under massive stress last year that stress sure showed itself in her health it was like the body just atttacks itself.

Everything you are telling me is very helpfull indeed.She doesn't get to have anything carbonated as thats in the benzoate catergory,thers so much food ,cosmetics,drinks,dairy that have the benzoates and even cinnamon for example one of the g free yoghurts had chilli powder in it.

Now that shes getting into puberty and the fact that some of the manufacturing companies are changing the ingredients in things I really have to look at everything.

So now its find a new toothpaste,soap,shampoo,sunscreen and anything else in the personal hygene area that my soon to be 11 yr old needs and I have been looking and it seems to be that perhaps the goats milk products are the ones i will have to go to for the ofg and they aren't cheap at all not that it matters I just want her to stay as healthy as she can.

So Thank you for everything you are sharing with me and its good to be able to chat with someone about it as it helps me release the stress to.

Hi Coopsville
I hope you are receiving the Child Disability Allowance to help with all the extra costs?
Also the Dietician can give you a prescription for some things available at the chemist (Ensure food supplements etc) which may be of help financially too. I think you may be able to get extra financial assistance for special foods too.
Worth checking it out.

I agree with you, stress is a huge factor in flareups. My son, 15yrs (diagnosed with crohns 5 years ago) is settled for now(touch wood).He is having fortnightly Humira injections which have made a significant difference to his life. He is also taking Mercaptopurine tablets which he was switched to when we complained about the azathioprine making him nauseous. The nausea was instantly gone when he changed to Mercaptopurine, and it's just as good.
Other posts have said to split the azathioprine dose to morning and night to help with the nausea. It may be worth a shot.

My son also suffers from skin problems like your daughter. Initially he had cracked skin like cold sores on the corners of his mouth which would never heal. Dry skin on his face, sores in his mouth like ulcers, split and weeping skin behind his ears, cracked skin round the sides of his nose and very red dry hands. He still suffers with these things, sometimes its okay but sometimes its full on. No rhyme or reason for it. We have a couple of creams from the skin specialist now after trying hydrocortisone cream for years. The doctors say its from Crohns and/or could be side effects from the meds.

The size issue is so frustrating isn't it! Comments from shop assistants are still embarrassing for him. He is short for his age and wore size 10 for several years as he couldn't keep any extra weight on. He didn't grow in height either!People can be very rude in front of him too! Originally people thought he had anorexia because he couldn't eat. I imagine you experience the same thing.

Having OFG and Crohns must be a huge extra stress for you both. Food choices will be dictated to by the OFG first then the Crohns. For Crohns, my son has found that if he isn't feeling well food can play havoc, but the same foods can have no bad effect when he is feeling well! So like Roscoe says everybody is completely different. We haven't kept a food diary, to be honest I've just been glad when he could eat something, anything! The doctors and dieticians didn't want to restrict his diet as the focus was on trying to get some weight on and some growth happening. Obviously your situation is completely different and hats off to you for the great job you're doing!

Dealing with the "Specialists" has been challenging, frustrating, and yes there's been lots of times when I've been pissed off with the lack of knowledge or action or communication as well.

I hope things settle down a bit for you guys, this site is great for sharing stories and helped us out in the early stages too.
All the best to you both.

Hi coopsville, and here !

Never apologise for going on and on with frustration. If you can't do it here with people who are on a similar journey, where can you ?

I read your first post and just wanted to say hugs hon. You really have been through the mill

Like njb, I too have a son with Crohn's. Dx Nov 2010, he had had symptoms since the Feb (2010). Ileo-caecal resection July 2011.

The 'tail is still wagging the dog' for us, but I have to keep faith that we will get there.

Hang in there coopsville. We are here for you

Hello there

In answer to your question her CDA was cancelled last year near the start apparently her illness is not disturbing my schedule enough, yet they had been paying it since she was 5, and I even had to fight winz then to get that, They the panel of two doctors who must be very advanced in OFG and the occupational therapist made this decision.
I would put their names here if I could remember them basically they said the CDA is for the caregiver more than it is for the child which absolutey brassed me off...I said to them you mean to say you put me through the hoops of getting all her medical info and doctor and chemist visits just to tell me the money is to help me because of the changes I make in my life to work within her health. I was so angry .

The money side I can handle, its the bloody ignorant panel of docs that winz puts you in front of, her specialist is $120 a hit, her foods for coeliacs are definitely pricey..I went shopping the other day to get her ofg safe products deoderants and soaps etc making sure no benzoates were in them including suntan was 6 items $108.00.

I will however go back there to winz to see if they think perhaps she may qualify again or not, They put you through the mill for the $84 a fn payment.

My daughter went into hosp friday last week she was in complete pain and I couldn't do anything for her as a parent you feel so helpless , after 25 mins the pain started calming down to a 7 as my girl described, but we waited in the hospital for two hours before she was seen, the doc there said her colon was in spasms and that not to give her red meat until they do the next procedure in april.

Those symptoms you descibe with your son are so close to my girls symptoms,At first they quarantined her and thought perhaps Kawasakis desease and I son't know what that is,but it was the dentist at the hospital who ordered the tests for ofg as he thought it would be highly unlikely but they did the biopsies under anaesthetic and from there it
was diagnosed as ofg.

You are very correct about the food order ofg first,coeliacs and chrons combined, sometimes I forget but the good thing is my daughteris learning to double check the g free foods as alot of the foods are very processed.

Thank you Njb for your post its appreciated its handy to know I don't need anger management and that I'm behaving normal.

Thank you

I will keep hanging in there.I think I'm doing a great job hiding the stress until missy comes up and goes "Mum what are you worried about? and I answer nothing at all..Then she goes "Mum you always said nothing means something...

Well that blows the theory of the childs not listening to me lol

I agree we all have to keep faith that we will all get there and our children will be strong.

Hi coopsville,

I'm so sorry your daughter, you and your family are going through this.

I just wanted to comment on the CDA. There is a couple of topics on qualifying for CDA in the allergy forum (at the top of the forum list). You'll need to search for it under advanced search.

Basically the cost cannot be mentioned at the hearing or when you fill in the forms. The main thing you need to prove to them is that your daughter's condition requires more care and input than a healthy child of her age. And by the sounds of it that is definitely case. Allergy mums have had success having the CDA approved if they list the time it takes to cook, shop (read ingredients), apply cream/give meds, worry involved in everyday normal situations etc. Anyway if you have the energy to reapply that's the avenue to take to get it - and I guess every bit helps.

You sound very caring and loving and your daughter is very lucky to have you. Stay strong and don't forget to look after yourself too