Geographic Tongue - I'm back!

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robertsmorcom

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Jan 18, 2011
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well another few months have past since i posted and yes still ongoing, not had blood D since last post but still suffering with tummy/bum pains, alot of knee pains & ulcers over the last few months he's had a 'funny' tongue which a friend of mine said looks like geographic tongue, just wondering if this could be connected? jeez this is a long old battle my LO is 3 1/2 now and still feel like the specialist think we are making it up, so after thoughts again please, thankyou
 
I don't know if there is any connection but my GI told me I had the geographic tongue, same year of my diagnosis. GT are more present when the disease is active too.
 
I was wondering that as he has been having tummy pains again this week his mouth looks awful ulcers on gums & the tongue thing and he's so uncomfortable, seen his Gastro specialist today and they still dont take us seriously, think they wont until he's at an age when he can tell them whats wrong, so frustrating!
thankyou
 
I have read of quite a few members here say they have had geographic tongue when flaring with Crohn's. The mouth ulcers would also fit with that as well and are a very common extra intestinal manifestation of IBD when undiagnosed or diagnosed.

My own children didn't have what I would call geographic tongue but their tongue was certainly coated and noticeably so, my daughter in particular. It remained that way until she gained remission.

Dusty. xxx
 
I'm guessing this term for the tongue pertains to the ulcer/white sore patches on it?? If so...this is what I had when they went in and did my endoscopy in 2010, it was my crohns that broke out from my mouth, tongue,throat and all through my body to my bottom.

I hope they figure it out, I cant imagine how hard it could be on such a young child. Prayers your way!:)
 
We are right there with you! My little guy Rollin (he is 3.5 too) has what looks to me to be geographic tongue at times, with canker sores at other times. And his mouth can hurt so much. The docs don't understand what it is like to have such a little person feel awful. My guy has his own term for it- ”useable". Don't know where it came from but it means he can't eat or his tummy will hurt. And all the docs can do is refer you to someone else or do one test and say come back in 2 months when we get these test results back...

It is heartbreaking to deal with on a daily basis. Here's to finding some answers very soon!

Meredith
 
MereMereS said:
We are right there with you! My little guy Rollin (he is 3.5 too) has what looks to me to be geographic tongue at times, with canker sores at other times. And his mouth can hurt so much. The docs don't understand what it is like to have such a little person feel awful. My guy has his own term for it- ”useable". Don't know where it came from but it means he can't eat or his tummy will hurt. And all the docs can do is refer you to someone else or do one test and say come back in 2 months when we get these test results back...

It is heartbreaking to deal with on a daily basis. Here's to finding some answers very soon!

Meredith
Click to expand...

same here with our son, I know when he's bad as he craves ice lollies and lives on them for days, we are still being passed from one doctor to another, and yes so heartbreaking because you know they are in pain, he tells me he has a 'spikey' bum or my tummy hurts and I just KNOW its true jeez he's going to be 4 in 2 months wot 4yr old says that?? we have a 6yr old too and he is also suffering as LO takes his pain out on him, I feel so desperate some days for answers, thankyou and good luck with your LO
 
wow just noticed its every 3months I post in here so a cycle of symptoms? he is really bad this week, really bad joints struggling with walking and has a 'spikey' bum as he says, one day just one day soon please for an answer to what is causing my little mans pain
 
Hey robertsmorcom,

I'm so sorry to hear that your little guy is still struggling...:hug:

Where are you at with him, doctors and all else wise?

I think some people do cycle. My daughter certainly did and as time went on the cyclic episodes became more frequent.

Are you tracking his symptoms via a diary?

Dusty. xxx
 
Hi Dustykat
We are currently awaiting an appointment for him to be tested for McArdles disease which is a rare muscle disease which my grandfather has so he's Gastro team have put on hold seeing him until this has been done, the only symptom relevant to this disease is his walking problems when having an episode, the tummy pains/ulcers are not connected so frustrating, his CRP levels still high too, just feel like months go by before you see any specialists!arrghh, I do see a cycle with his symptoms and started a diary but flag when he's having a good episode, I do believe you have on here somewhere a diary type thing, do you have the link please? thanks for all your support
 
Sorry to hear about your little man.
My little girl seems to be on a cycle too.
I just wish we could time them better.
Of course, if I could time them, I wouldn't time them at all.
I hope he turns the corner soon.

Farmwife
 
Sorry to hear about your little one. So frustrating when they are so young. Has he had a faecal calprotectin (poo test) done? It measures inflammation and was the only test that came back positive with my son (and the reason he got diagnosed). Apparently if it is really high then it is almost certainly something like Crohns. At least it is a painless test and would maybe make them take notice if inflammation high! I think the results take about 4 weeks to come back. Our paediatrician in Stirling used to be the only one who did it, but now my GP seems to know about it and can offer it as well. Good luck - keep pushing for answers.
 
Sascot said:
Sorry to hear about your little one. So frustrating when they are so young. Has he had a faecal calprotectin (poo test) done? It measures inflammation and was the only test that came back positive with my son (and the reason he got diagnosed). Apparently if it is really high then it is almost certainly something like Crohns. At least it is a painless test and would maybe make them take notice if inflammation high! I think the results take about 4 weeks to come back. Our paediatrician in Stirling used to be the only one who did it, but now my GP seems to know about it and can offer it as well. Good luck - keep pushing for answers.
Click to expand...

He has had stool tests about 2yrs ago and last March Endoscopy & colonoscopy the Colonoscopy showed blood/mucus but his speciliast was 'sure' it isnt Crohns and diagnosed IBS arrghhhh! feel like I'm pushing on a daily basis, thankyou for your support
 
Dustykat
We are awaiting an appointment at Great Ormond Street in London (8hours away from us!) but the waiting list is 6-8months as this is the only speciliast for McArdles, I've left messages for his Gastro team again today as he is so poorly, almost like he has ear/chest infecton but no temparature just cold sweats and mouth full of sores, another symptom i've noticed recently is that if the sun is shinning he says his eyes hurt and the whites are reddish (looks like red veins in the white bit) he 'needs' to wear his sunglasses, thanks again for all of your support
 
The eye issues he is having sound very much like uveitis in both description and symptoms.

The tongue, mouth ulcers, joint pain and now eye issues are all extra intestinal manifestations of IBD.

Goodness me, I hope you are able to get solid answers and relief for your little guy and soon! Bless him...:hug:

Dusty. xxx
 
another update...we saw an opthamologist 2 weeks ago and he said looks like allergic reaction but doesnt know what to, Spencer has been having an episode for 6 weeks now, still no bloody D but in so much pain when going for a poo, skin rashes, ulcers in mouth and on genitals, right knee and ankle join pain, saw his gastro specialist last week and they've mentioned Bechets, still awaiting the Great Ormond Street appointment, so in the meantime we are going to see a rheaumatoid speciliast, and the wait goes on! us thought would update as you've been such a support in the past

xxx
 
Sorry to hear about all the suffering your poor boy is going through. I sometimes feel that we are always having to wait and watch our kids suffer. It's amazing just how many kids must be sick to have such long waiting lists in these hospitals. Never thought I would wish that my kids only got normal coughs/colds, but hey such is life. I hope you appointment comes through for Great Ormond Street soon so you can get these problems dealt with properly!!
 
thankyou for your reply, I live in Cornwall and we are in a postcode lottery, our local hospital has no specialist in childrens diseases so we have to travel atleast 3hours to hospital that does, this is our battle our local doesnt want to refer which i'm sure is monetary related....sorry for ranting!lol I would give anything for a normal cold and a quick dose of paracetamol rather than paracetamol/ibuprofen/codeine at regular
intervals dailyy :( our kids just shouldnt suffer like this..thankyou so much again xx
 
Didn't realise how lucky we were up here. I suppose if we lived right up in the north of Scotland we would struggle to do a 3 hour journey to Yorkhill. As it is it is an hour along a motorway which isn't too bad I suppose.
It might be worth asking the big hospital if they could ever send a specialist to your local hospital even twice a year which would cut down your need to drive to them. Our local hospital holds a clinic every 3 months when the specialist from Yorkhill comes to us for one day and all the IBD kids get seen on that day.
Just noticed from your reply that you mentioned ibuprofen - we were told to stay away from ibuprofen if there are any tummy issues. It might be worth avoiding that if you can.
 
re: opthamologist
Get a 2nd opinion! My son has vernal conjunctivitis and it is red vein-ish in the white part of the eye. We treat it with steroids and Zaditor. Eye problems are a common EIM for Crohn's, but sure it's not uveitis. Poor guy! <hug>
 
Sascot said:
Didn't realise how lucky we were up here. I suppose if we lived right up in the north of Scotland we would struggle to do a 3 hour journey to Yorkhill. As it is it is an hour along a motorway which isn't too bad I suppose.
It might be worth asking the big hospital if they could ever send a specialist to your local hospital even twice a year which would cut down your need to drive to them. Our local hospital holds a clinic every 3 months when the specialist from Yorkhill comes to us for one day and all the IBD kids get seen on that day.
Just noticed from your reply that you mentioned ibuprofen - we were told to stay away from ibuprofen if there are any tummy issues. It might be worth avoiding that if you can.
Click to expand...

We see his Gastro team from Bristols Childrens hospital every 3 months at our local hospital, its the inbetween part thats the problem, when he's having an episode we take him to the hospital and no-one can really help except pass it on to the Bristol team! very frustrating, we was told last year not to give ibuprofen but last week cause he was so bad told to dose him every 3 hours with all three meds arrrghhh thankyou for your reply
 
Jenn said:
re: opthamologist
Get a 2nd opinion! My son has vernal conjunctivitis and it is red vein-ish in the white part of the eye. We treat it with steroids and Zaditor. Eye problems are a common EIM for Crohn's, but sure it's not uveitis. Poor guy! <hug>
Click to expand...

Thats how i explain it to the hospital, the whites of his eyes have reid veins, he hates sunlight in his eyes and he complains they hurt along with headaches, opthamologist just said looks like an allergy but i am going to get second opinion, thankyou
 
Thanks for the update robertsmorcom.

I'm sorry to hear that Spencer is still suffering with so may symptoms, poor love...:hug:

Behcet's certainly does fit many of his symptoms. Does he fit the ethnic profile normally associated with it?

Good luck! I hope you have solid very soon!

Dusty. xxx
 
atlast he is having a good day!! woohoo!

I dont know if i mentioned before last year around May/June after his colonoscopy we saw an Immunologist who was swaying towards Periodic Fever Syndrome (the inherited one) as i have meditteranean on my side of family but as Spencer wasnt 'spiking' temparatures they decided against taking further, Bechets has been mentioned on the last two appointments he's had, tho if I'm right there isnt actually a way of definate diagnosis? we are pinning our hopes on rheumatoid people now as been told by lots of people they are the best when joints are involved,
thanks again Dustykat and everyone else
xxxx
 
Yay for good days! :):):)

You are correct, there is no definitive way of diagnosing Behcet's. It is disease/syndrome of exclusion, so rule out other causes that match his symptoms before settling on Behcet's. Rheumy's are generally very good when it comes to joints and it is not uncommon for them to have hit on a diagnosis where others have failed, I personally believe it because they often have a more holistic approach.

Dusty. xxx
 
so the Rhemi appointment is next 22nd October, boy I cant wait, little man been having a bad episode again, another question for you all..I'm getting his notes ready for next week and read through his laparoscopy discharge results he had done last March any thoughts greatly appreciated...

Diagnostic Laparoscopy was done for whole small and large intestines from the DJ flexure to the sigmoid colon. No abnormalities was detected unless enlarged lacteals. No Meckels diverticulum, no duplication cysts and no vascular malformations seen.

the bit I want to no about is the 'unless enlarged lacteals' !!!

oh and we have our Great Ormond Street appointment 3rd December
 
Sorry - no idea what that means either. Just wanted to wish you luck for the appointments, let us know how it goes!
 
Lacteals are a type of lymphatic vessels in the intestine: (The second function of the lymphatic system is the absorption of fats and fat-soluble vitamins from the digestive system and the subsequent transport of these substances to the venous circulation. The mucosa that lines the small intestine is covered with fingerlike projections called villi. There are blood capillaries and special lymph capillaries, called lacteals, in the center of each villus. The blood capillaries absorb most nutrients, but the fats and fat-soluble vitamins are absorbed by the lacteals. The lymph in the lacteals has a milky appearance due to its high fat content and is called chyle.)

The pathology wording is odd-- does unless=except? does enlarged =dilated?
maybe and maybe not...

From what I can tell from a quick internet search, dilated lacteals can be "of little consequence", but are rarely associated with malabsorption, occurring as a congenital abnormality or secondary to another issue (including Crohn's). I suspect the pathologist would have said more if s/he thought there was an abnormality creating symptoms, but definitely ask the doctor for clarification.
 
the wording is what threw me, not a conclusive line I thought, I googled it too and the Crohns link came up yet again as it always does :( spoke with a lady at Crohns UK and she it can be quite normal for the first lots of scopes to say not Crohns but people go onto have i.

I will bring it up with his specialist next week, I will keep you updated thankyou
 
I have nothing further add but wanted to wish you well with the appointments and hope they provide you with solid answers. Good luck!

PS. Yes strange wording indeed! To me unless = except.

Dusty. xxx
 
wow been a bit longer this time since I've posted!

so we had our Great Ormond street appointment early december, speciliasts doesnt think McArdles so wants to do MRI scan because of tummy/joint problems, awaiting appointment which should hopefully be early February..always a waiting game with our poorly ones :(
 
Waiting is the pits! :voodoo:

I hope they schedule the appointment sooner rather than later. Good luck!

Dusty. xxx
 
Sorry to hear you're having to wait again! Hope it goes well and you can get some answers.
 

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