Undiagnosed Kids

Crohn's Disease Forum

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No, knee pain has only been the last couple of weeks. Fevers have been since December. Of course, that doesn't address the extreme abdominal pain.
 
Nurse Minnie, I think your doctor has made a good start, but I certainly wouldn't rule out Crohn's without a good workup. Hang in there, it's gonna be a bumpy ride!
 
CarolinAlaska, I was afraid of that. I called the doctor to ask about the tests last week. I am not good at waiting. So, now I have to wait for them to call me back. We have a good ped GI and I have been told she will keep digging until we get to the bottom of this. I just hate that my little one is in so much pain all the time. I will also hate it if she has to be saddled with yet another life-long disease. Asthma and Celiac is enough. I really don't want to add Crohn's too.
 
Hi nurseminnie & welcome. I hope you get some answers ... and I really hope this is all just some temporary reaction to the antibiotics. My son's illness really started getting bad after he had bronchitis & antibiotics too (he also has asthma). I am glad they are doing lots of tests. Good luck and keep us posted.
 
Hi nurseminnie,:ysmile: my girl has asthma and IBD and eos disease. I know, not what you want to hear.:ack:
I hope you child gets help soon and I so glad you have a GI that wants to help.
Hang in there!
HUGS:heart:
 
Thanks!

All the bloodwork came back normal as well as the ultrasound. Waiting to hear what the next step is. Celiac labs are improving.
 
Talked to the doctor. I asked if it could be Crohn's. She said we can't rule it out even though her labs are normal. And, since she has 1 autoimmune disease, she could have another. We talked about all her symptoms again and everything that has been going on.
So, we are doing another endoscopy and a colonoscopy on Monday. She wants to check the gastritis to see if it has healed and to check the celiac in her small intestine. Then she will see what she finds in the colon.
Thanks for listening!
 
Has anyones little ones had an abdominal ultrasound? - is it a useful test?
What do they look for? - mucosal thickening as a sign of inflammation?
Would a 2.5 year old be sedated or expected to lie still?
And why didn't I ask all these questions while I was with the consultant????!

Has anyone's little one been on an elimination diet? how useful\ easy\ difficult\ stressful was it?
 
Ultrasound is easy -just gel on the tummy
My kids have had renal ones .
Moving does not mess up the image too much and if he is still for three seconds - image capture then he can move his arms or legs.
We did elimination diets with DS since age 2 .
Much easier when they are younger.
Just be sure to get a supplement drink from doc to make up for any lost nutrition
 
thanks MLP!
Just worried he won't stay still enough! - he is not good being messed about!!
When you did the elimination diets did they show up things that other allergy type tests didn't? Freddy has had the RAST blood tests for the basic stuff and also the skin patch tests for a few things - and everything shows up negative, going dairy free has helped but he is still having problems so we are thinking of doing the proper elimination diet to try to find out if it's an intolerance to something else - just all sounds a bit scary - the Dr didn't mention any supplement drink - I think I would feel better if he had something like that - I will ask the GP (although I'm not sure they will know much about it!).
Thanks xx
 
Ultrasounds are cool because they lay in a bed and there is a screen where they he and you can see what is going on in his tummy. He may lay there still just because he is distracted by the TV. You may want to bring a hand held electronic toy/cell phone or something to distract him if this isn't enough. Hopefully the tech will be comfortable with kids.
 
DS was free of
Corn wheat oats barley rye eggs milk and soy from birth to age 3.
Plus a few other things . If he ate them severe stomach pains - so allergist had us avoid . He was just sensitive - not allergic

When he started having trouble again at age 7 we tried gluten free then corn free
Then corn gluten oat rye barley soy free
He was on EEN for 9 weeks so free if everything
We tried fodmaps
He was a trouper each time
But none of them made any difference except when he was a toddler .
He is free of all tree nuts due to a true food allergy .
He has reacted in the past and tests positive via rast .

Hope it helps him.
Supplements are highly recommended when eliminating large food groups in little ones
If you not avoiding soy there is bright beginning - soy drink
 
He may squirm a bit during the ultrasound but that will not hurt the testing...it just may take them a little longer. If you are at a place used to kids, I am sure they have tricks. I would bring something to distract him if you can. If you have a portable movie or tv player or a stuffed animal that may help. You can ask him to make his animal still while he stays still when they need him to!

They can see quite a lot and take some accurate measurements as a baseline for the future too. Good luck with the test. It is totally painless!
 
We have done elimination diets several times: soy, wheat, dairy, eggs, citrus, nuts, shellfish (the major allergens). Eliminate all possible allergens for 3 weeks, then reintroduce them one at a time. We kept a symptom journal but we never found any real answers. A's symptoms don't seem to correlate with what she eats. And we never used any supplements during the diet.
 
To bad you couldn't get your GI to OK EEN. I know he's not dx yet but 6-8 of pure EN and than re-intro one food group at a time. Yes it would take FOREVER (trust me I'm not trying to think of that yet for Grace, if she's of her feeding tube by 10 I'll be happy)) but it might be easier to figure out. HUGS
 
Thanks everyone!
We had family over today and it was impossible to stop the other kids giving Freddy stuff he shouldn't have (with milk in) let alone if he was on a proper elimination diet - I guess it would only be for a few weeks though!
I think the GI was up for booking the scan straight away but I wanted to try the elimination thing first - intolerences or sensitivities to foods (although difficult) have got to be better than anything else being wrong! He kept saying that with Freddy's symptoms if he was 13 then the GI would be re-scoping etc but since he is 2 and his weight is ok he is not sure, and what with Freddy having had so many ear infections over the past few weeks I just wonder if everything has got a bit muddled - at least that's what I am hoping! - I am going to try out a few basic recipies this week to see how easy they are and if Freddy will eat them!!
 
You really need to put your foot down and stated he does not eat anything except what you give him per his doc.
That way your not the crazy mom.
Fwiw we had to rescope DS to get a dx .
First scope was clean since had had been on a pred burst ( 5 days) over two months
Prior to the scope.
Good luck
 
Amy had lots of ultrasounds at our childrens hospital and they gave her a mini dvd player with a movie of her choice. Worked really well.
 
But MLP - I AM the crazy mom!!!!
to be fair it was my daughter that gave him some bread - I hadn't said to her that he couldnt have it - but it is so easy for it to happen! - my mother didn't help (on purpose) by opening a large box of milk chocolates and handing it round - I really did feel like the crazy mom following him round making sure he didn't accidently get his hands on any!
Poppet's mum - If they had Mr Bean we would be laughing (literally!!) he loves it!! - and on a totally unrelated issue - I spent a short time in and around Calgary and up the Rockies - one of the most amazing places in the world!! - lucky you living there!!!! xx
 
Suzysu
Welcome to my world except if someone accidentally gave DS something - it could be fatal.
So I get the insane mom thing way too much.
Hope the intolerance thing gets figured out for you .
 
Suzysu
It s ok just like a car ride - there are things we put into place for DS to keep him safe. After five years - they are second nature -
Just saying it is very doable and with a little practice things become normal.
 
Hi! Just thought I'd pop in with an update. I am sorry it has taken me so long. I think I about lost my mind with this whole eyes thing. So we took G to the ped opthamologist that day and they did the whole exam again -- dialated, etc. And the doc said NO inflammation and only patchy dryness. WHAAAAAAT!? So I was seriously like SPEECHLESS that this eye doctor was apparently totally wrong. I was relieved so I wanted to just be happy instead of wasting it being mad at the eye doc, so I just has to stop thinking about all of it.

In fact, I stopped the sulfasalazine. I just was like I think I AM losing my mind! And she must BE fine!! But, of course within 3 days she was doubled over herself in pain after eating, and now she's having joint pain again. It has always been mostly her ankles, but now it is sometimes her knee, and today it was her pinky finger. Her finger did look swollen? I don't know. Oh, and her poops are back to flat.

So that's only like a week off meds, so we're going back on. And we see the GI in 2 weeks. So that's the update! Thanks!
 
Hugs I know when ds had to drastically wean off 6-mp for a week before we added allopurinol he became a mess.
Good luck at the Gi appt
Does she see a Rheumo ?
 
It's really hard on us moms. I think that point when we look at our child and totally realize that it's true, that our child does have this awful disease, is one of the darkest scariest times ever. I'm glad you restarted the med. I wish I could give you a big hug.
 
It is scary to realize, and I guess I just had to rove it to myself one more time. Since I don't yet have medical proof. She doesn't see a rheumo. She's had the ankle pain for a long time but it has been so mild I haven't addressed it. I guess if other joints are becoming involved as well then we'll have to see someone?
 
Mom2girls - Danny's joint pain is intermittent and travels to different joints (ankles, knees, fingers, jaw, lower back ...) Even though his eyes bother him a lot ... the eye dr says all look normal. I hope you get some answers and the medicine helps you!
 
I can so relate Mom2girls !
I try and convince myself all the time that Jj is "fine" and since the tests keep showing that, then it must be true! Then he will be doubled over in stomach pain, or limping because his knee hurts so bad ..:(
It's such a roller coaster to be on ~
I'm happy I have all of you to ride it with me tho !
Hang in there :hug:
 
Momto2girls said:
It is scary to realize, and I guess I just had to rove it to myself one more time. Since I don't yet have medical proof. She doesn't see a rheumo. She's had the ankle pain for a long time but it has been so mild I haven't addressed it. I guess if other joints are becoming involved as well then we'll have to see someone?
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I've been wondering the same thing. Jaedyn isn't hurting now, but has been off and on with an elevated CRP and ESR when she does. We had a peds rheumo referral before the Crohn's was diagnosed, but didn't get a call from them for 6 month. By then she was not having joint pains, so I called back and took a raincheck. I've often wondered if there would have been any benefit from keeping the appt, especially now that she has the Crohn's diagnosis, or whether it would just be chalked up to her Crohn's. The specialists have to fly up here 3-4 times a year and it's hard to get into them. I still have to drive 3 hours to see them. I felt it would be better to give that appt to some kid who needs it more right now.
 
My opinion is every child with crohn's should have a Gi, opthamalogist and Rheumo .
Gi handle all of the gut stuff really well.
The extra intestinal manifestations that come more often than not with kids with crohn's are handled very well by Rheumo ( not just joint pain)
Since they have a lot of experience treating those areas.
Joint pain will come and go but rheumos can help with treatment plan even if that us just water therapy etc...
 
Yep I am starting to think it might be time. I'm just beginning to wonder if we aren't just too keen to all of this so that we are noticing it before the doctors can even do anything about it? But we have her GI appt coming up, her 5 yr check up w new ped and we had to resched allergist due to snow. So all of these spots coming up should shed some light on next steps.
 
So this morning the kuds were playing and Gracie came into our room and she had toilet paper wrapped around her ankle. My husband asked her about it and she said her ankle hurt really bad so she put on a cast. Woah! That actually caught me off guard. Hmmmm...
 
Momto2girls,
Grace has done that same thing. I had to keep a ace bandage handy to wrap up her leg. It did help her but be warned that she still need to exercises it to keep the muscles strong. Most of her joint pain has gone on pred but she struggles a bit with it.
I'm glad to hear about the eye thing. Grace also has a Rheumy and a eye specialist.
 
Thanks everyone. Well, Gracie's "cast" was more for looks then functionality, but it sure did get my attention. And she had a potty accident yesterday which is a tell-tale sign for us she is very constipated/impacted b/c she always has bladder spasms when the colon is full/applying pressure to the bladder. And excema getting really bad again.

I know I shouldn't have taken her off the meds but I am also kind of glad to know what is going on? It is sort of like a fever, if you are always medicating you don't really know what is going on. But I am wondering, if we are going to see the GI on the 13th (next week) do we assume that if she's having symptoms while back on the meds (I know it'll take a few more days for the meds to fully kick in again) that she will NOT need any change in meds, MRE, or even blood work? (I did want to do bloodwork, but will the meds keep anything from showing up?)

I don't want her to suffer, but I don't want the meds to mask what we need to do next -- does that make sense?
 
They often do the tests to see if there is underlying issues that symptoms are not showing anyway. I don't think that the med will mask anything in a week's time. But it may show some improvement if it is working...
 
Momto2girls said:
...
(I did want to do bloodwork, but will the meds keep anything from showing up?)

I don't want her to suffer, but I don't want the meds to mask what we need to do next -- does that make sense?
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You thoughts are good .. I would recommend talking to your doctor. I've read some patients are told to taper off certain meds prior to tests (ie prednisone prior to colonscopy) ... but usually it seems patients stay on the medication and the doctors just note what meds they are on.
 
Scoping within 6-8 weeks of pred will give a false negative.
Trust me btdt within DS
Cchmc will not do a scope unless the child has been off pred for at least 7 weeks to dx .
That is any pred.
 
OK, well, she had a HUGE bm today -- it had black bits in it. I was like a huge mound of oatmeal. I've never seen that much! At least it is coming out I guess? I am sorry for the graphic description!!
 
So I've been thinking a lot about our upcoming rheumo appt and her increasing joint pain and her recent issue with her eyes (whatever that really is) and I'm wondering if she could really have some sort of juvenile arthritis which is why her intestinal inflammation was non-specific and her GI symptoms seem largely unchanged? Eye issues while common w crohn's seem to be more common with JA. Does anyone seem to think that's possible? Also given no weight loss and constipation not D?

I just don't think her joint pain seems so severe? But she has been lolly gagging in bed in the morning which is unlike her?
 
That's true M2G,
(I like how CarolinAlaska or should I saw CA, abbreviated you name. Texting is just killing us.:lol2: KWIM)All the problems you just started Grace has BUT JA is a possibility. I know the AZMOM her DD has both. Maybe she can shed some light for you. I do know that I was thinking Grace had both. Her GP gave us Boswellia (Indian Frankincense) for her to take and....WOW, :eek:hardly any pains even though she still having major issues. Her GP wanted her to have a very specific kind. So if your interested let me know.
 
Fascinated by the success with the boswellia our Arab friends swear by boswellia sacra (from Oman/Yemen). They chew the resin like chewing gum and claim the liquid it releases solves a wide range of digestive problems. They are also incredibly fussy about which boswellia sap they'll consume.
 
Danny's rheumi diagnosed him with juvenile idiopathic arthritis ... but he really thinks it is likely to be from Crohn's.
 
Interesting -- I've never heard of Boswellia. ?? I will have to find out more. : )

Dannysmom -- is he treated separately or in addition to the Crohn's? Or the Crohn's treatment is the Arthritis treatment? I can see how this would get confusing quickly!

FW -- did your Rheumy test Grace for JA?
 
momto2girls? what are your little ones eye symptoms? I think Freddy is starting with eye probs but not 100% sure yet!

FW - a GP prescribing a herbal med!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! WOW I've got to move to the US!! it would be unheard of here!! I use Boswellia loads in my animal work - it's fab! so glad its helping grace too!! xx
 
Suzysu -- Our eye doc said she had keratitis sicca -- basically dry eye caused from inflammation caused from IBD (of course she's not diagnosed...but if she DID have crohn's then crohn's would cause this type of eye problem). So our GI rushed us to the ped opthamologist who said only patchy dryness. BUT, the opthamologist wrote a very generic report back to the GI that lead the GI doc to think she hadn't at known about what the eye doc said!?!?!?!? Even though I showed her the eye doc's report and asked her why they'd both have differing opinoins?? Sooooo, now the GI doc thinks we probably need a 3rd opinion. ACK! Doctors make me crazy.

So long story, she does have some sort of dry eyes going on and may or may not have inflammation, but something is obviously developing.
 
@Mom2girls - Danny did very bad on prednisone ... sysmptoms worsened. This made us very reluctant to try something more aggressive. The rheumi wanted to try Humira (since it is both Crohn's treament and JA treatment)... the GIs would not prescribe Humira themselves without more definitive diagnostic test results, but the GIs were curious if Humira would help. Since Danny has been improving (ever so slowly), we are waiting and seeing ... and not doing any treatment right now.
 
Momto2girls - what signs did she show? -Freddy has slightly red eyes, with some greeny discharge (intermittent gets better or goes away for a week or so then gets worse but never bad enough for me to think conjunctivitis) and sometimes seems very light sensative (crys and covers eyes when lying down for nappy change, same when coming out of a shop\ house into daylight, asks to have curtains closed etc).
Danysmom - I really hope your little guy carrys on improving especially after all he has been through xxxx
 
Does anyones little one have normal poo but still pain (high pitched screaming, holding onto abdo, bending over) just before passing a motion, complaining of sore bottom when passing motion, and at other times, and high pitched screaming when bottom is wiped at nappy change? I can see no redness, swelling, blood, fissures or anything around his bottom.
I just dont understand why when the vomiting and diarrhoea finally seem to be improving his pain almost seems worse :(
 
Suzysu -- Gracie's eyes really only bothered her when she was trying to buckle her seatbelt -- so when she was looking out of the corner of the eye -- and when she would close her eyes to go to bed at night. The eye doctor said that it would be most obvious that there was inflammation during those extreme glances so I guess that makes sense.
 
Suzysu
Freddy could still have inflammation inside his rectum. Perhaps the other areas are healing but the rectum will take a bit longer. I do know Grace has looked normal but also has had pain passing.
 
We had Gracie's 5 year check up today -- it was OK -- I still really like the new ped. She failed her hearing screening? So we go back for a re-test in 5 weeks. She only grew 1.5 inches this year, but the doc thinks it shows she's thriving and isn't worried about it. We talked about the GI visit and about seeing rheumy, which she absolutely thought was necessary at this point. She knows the rheumatologist were seeing and thinks she's for sure the best. It is interesting b/c the rheumy we're going to see just started an amplified pain program for children who maybe go undiagnosed but still have pain -- which is their body percieving a pain as much worse than it is. So maybe that's G? Who knows.

Other than that, we're OK. Her joint pain seems to be worse than her abdominal pain these days.

OH! I forgot to mention that the ped said we should tell the rheumy about anything Gracie has that might be "unique" medically. So I told her about her large cafe au lait spot (only one spot so never been a medical concern, but still it is quite large), and how she has two fused teeth -- they are baby teeth on the bottom that are fused into one, they came in that way -- as a "double-wide" tooth. She had NEVER seen that before and said it must be quite rare -- she was fascinated by it. She said she doesn't know of any rheumy-type significance but to for sure let the specialist know.

So I was curious if any of your kiddos have that type of thing going on?
 
Momto2girls said:
So I've been thinking a lot about our upcoming rheumo appt and her increasing joint pain and her recent issue with her eyes (whatever that really is) and I'm wondering if she could really have some sort of juvenile arthritis which is why her intestinal inflammation was non-specific and her GI symptoms seem largely unchanged? Eye issues while common w crohn's seem to be more common with JA. Does anyone seem to think that's possible? Also given no weight loss and constipation not D?QUOTE]

If she has a motility issue or hirsprungs on top of crohn's, she could still have crohn's w/constipation.
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I know I haven't posted an up date on my daughter in a long time. Due to the concussion I suffered in Sept. I still have not set up her motility study. She still has to take 4 Senekot daily to have a bm. The doc was supposed to call me with a date for the motility study but hasn't. I did manage to leave msgs several times, but haven't heard anything back. My daughter doesn't want to have the motility study done until she finishes her college classes and home school co-op classes. That's fine w/me. Between still recovering from the concussion and dealing with my port line infection and now replacement of port, I can't remember to call the doc anyway. Sigh....:yfaint:
 
Momto2girls said:
So I told her about her large cafe au lait spot (only one spot so never been a medical concern, but still it is quite large), and how she has two fused teeth -- they are baby teeth on the bottom that are fused into one, they came in that way -- as a "double-wide" tooth. She had NEVER seen that before and said it must be quite rare -- she was fascinated by it. She said she doesn't know of any rheumy-type significance but to for sure let the specialist know.

So I was curious if any of your kiddos have that type of thing going on?
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Have you considered takeing Gracie to a dentist that specializes in special needs children? The reason I ask is that there are some dental issues that are particular to certain disorders or illness. Sometimes you can get a diagnosis from a dentist or even an orthodontist.

Also, a dentitst could tell you about when in fetal developement that particular part of the teeth are formed. You can then see if it matches some of the developement of the other organs etc..
 
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Momto2girls said:
Suzysu -- Gracie's eyes really only bothered her when she was trying to buckle her seatbelt -- so when she was looking out of the corner of the eye -- and when she would close her eyes to go to bed at night. The eye doctor said that it would be most obvious that there was inflammation during those extreme glances so I guess that makes sense.
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If she has inflammation in her eyes, bright light can cause pain to the eyes. So can shifting sight from far to near and vice versa. It can also contribute to dry eyes which is also painful and can cause problems with light etc. Even reading text on a very white page can cause eye pain. Seeing a pediatric specialist like at a major hospital would be a good idea. My experience has been that the average opthomologist miss a lot with children. It took taking my son to a majory eye clinic (Wilmar Eye Institute @ Johns Hopkins) to get a correct dx and finally get glasses etc.

I also started seeing the specialist at the same place as my son. It was his pediatric doc that dx my vision issues. I have since been passed onto other docs there who care for the various aspects of my eyes and vision. Currently I see three specialist there for my eyes. If I hadn't taken my son there, I still would have been suffering myself. Sigh...
 
NatureLover -- We did see an opthamologist at our childlren's hosp. and they want to see her every 3 mos now. I haven't been to a special dentist -- her regular dentist said on the x-rays it looked like there were two teeth under there. But, I didn't ask her about what it might mean medically. So I will be curious to see what the rheumatologist thinks.
 
Danny has one cafe au lait spot (about 1inch roundish). My nephew has 2 fused bby teeth in the front of his mouth. He is 19 now with perfect teeth. I think it is a good idea to mention these oddities. Good luck!
 
So I've heard of sores inside of the mouth, but has anyone ever had a sore on the chin before? I know, I know, it is ridiculous. But I can't help but wonder about everything with her now! :ybatty:

Last week Gracie had a friend over to play -- they were basically watching my older daughter play Wii -- so nothing physical, etc. I came downstairs and gave them a snack -- oreos -- and Gracie's face got kind of messy with cookie crumbs, and I remember thinking her chin looked red but she has food allergies so she's always getting red from something (even though oreos are generally safe for her). We walked her friend home, and at some point that afternoon her chin ended up looking like a little rug burn. Like a scrape, but pretty much perfectly round. It scabbed up by the next day. And the day after that we went swimming and it almost looked like a blister by then -- and it sort of popped and fell off. Now it looks a little bloody and re-scabbing.

I have asked her (everyone has asked her!) what happened and all she will say is she has no idea! I really don't think she scrapped herself!?! And it is way worse than you could do by just scratching it yourself.

Anyone!? It is so strange!?
 
Could it be impetigo? C got that on his chin when he was really young and it followed the same pattern, rug burn look, scab, then due to drooling(really young) scab came off and it had this blistery sore look, the cycle repeated til a visit to the ped for some type of cream.
 
Oh goodness, ya think!? Yuck! We were of course at the ped on Friday but didn't even ask b/c I didn't realize how weird it was at the time.

I know FW! I am sure all of the docs in the metro area are ready to commit me!
 
Because C was still at the drooling age I just thought it was a scrape or something that was raw from the drooling. Could be it, google a pic and see if it might fit. Whatever it is I hope it heals quickly!
 
DS gets raised "things" ( arms face hands etc)
Not sure if they blister since he scratches and picks etc..
We have prescription abx cream to avoid cellulitis
No one know what or why .....
 
What meds has anyone tried when their little one has pain before passing a motion? I have upped Freddy's senna back up to 5mls twice daily, but this hasn't helped, his motions are normal but with lots of mucus and he was sick last night - would buscopan help? anything else??
 
Not sure?
Have you tried spraying warm water on the area before hand to help relax the area?
As you know Grace is on Miralax STILL even on EN. She no longer has pains down there but still needs Miralax.
 
The pains start about an hour before he goes, and I think the actual passing of the motion is ok it's just the lead up to it. Today he cried non-stop for a whole hour before he pooed, wouldn't or couldn't sit down in the buggy but said his tummy hurt and he wanted to sleep so I put the buggy seat down flat and he laid on it with his bottom in the air crying till he got home, then everything got worse till he pooed even though I gave him paracetamol and a wheat bag for his tummy.
I called the GP to ask if there was anything we could give him or anything else we could do and she was so dismissive and said that there was no medication licenced for a child of his age and there was nouthing he could have until he was 6!!!! - I nearly burst into tears!! - I know he is not in constant pain but surely so be in so much pain so frequently is not right? I should video him or something I suppose but It's not really something I think of until after the pain has passed.
How is Grace? I've been totally useless and not kept upto date with how everyone is getting on. xxxx
 
Grace is..well....she's.....fine. :yrolleyes:

Have you changed GP's before?

I'll check back later. :ghug:
Off to find the perfect Easter dress for my niece.
It will be a all day epic adventure.:yfaint:
 
FW - I know very well what 'fine' means! - I hope you are all coping ok - have fun on you epic shopping adventure!! xx
 
I'm so sorry Suzy -- that sounds miserable for him!! And the stool is soft, correct? Does a little vaseline help? Or maybe a warm bath, like FW was saying? I've changed Pediatricians, let's just say, a FEW times. :)
 
Well, a friend came by yesterday and we were talking about Gracie and she said her little sister had all of the same stuff growing up -- granted, they are like 60 years old now, so that was a long time ago -- but they never could figure out what it was. Until she was in her 20s and diagnosed with Lupus. LUPUS!? Now I'm freaking out about Lupus. Oh lordy...
 
Ya, lupus was brought up for Grace. Also brace yourself for MS possibilities.
I love the guessing don't you.:yfaint:

Why can't people say...oh I knew someone that had those symptoms and she's healthy and hasn't been sick in 30 some years.
 
Dude. Really? Lupus? And I do remember the ms thing for you. Somehow I can read about this stuff all day long. What's wrong with me? And when it gets to be over my head I'm just mad I didn't do to medical school! Ha!
 
Suzysu, so sorry your little one is struggling so much with his BMs. That is so sad! When my daughter struggled with BMs (not my crohn's dd), it helped to rub her back and tummy. It also helped when I gave her bran flakes (she loved them). You've probably tried a bunch of diet changes... going gluten free helped my crohny the most.
 
Suzy - I am sorry that the dr cannot give you a medication to help our son. Have you tried warm heating pads? I've read some forum members use them. They even come in stuffed animal form. (just google stuffed animal heating pad)
 
Suzy
So sorry that was DS for a long time. Can you get back to a GI to at least get a flex sig scope?
WHen DS's rectum and later sigmoid was inflamed nothing pain wise would help.:yrolleyes:

FWIW rectal inflammation will NOT show up in normal blood work and fecal caloprotectin wont pick it up either since its at the very end. ( Nice I know).:ymad:

:ghug:
 
Good luck Momto2girls !

Suzysu , my nephew does that very same thing when he needs to poo. (he's not a crohnnie that we know of) It is so sad to watch tho ! I don't know that he is "diagnosed" with anything, I just know that he has to take Mirilax consistently every day to help with the pain. You may have said already, but I'm not sure if you have tried that ? :hug:
 
She's fine! No arthritis! No rheumy concerns. Woo hoo! Super relieved. Geez my mind has been running away with me lately!
 
Hi everyone - sorry Ive not been on in a while - I normally get emails when a thread im subscribed to gets a post but I haven't been getting them - I just assumed everyone was doing really well!!!!
So my question today is how does everyone cope when their little one is in pain and there is nouthing you can do about it?
Today Freddy's pain was building up all day - he couldn't sit down in the buggy on the way to school pick up and had to crouch on his feet in the seat, then during my older children's swimming lesson he was screaming (proper screaming) owww and sore mummy (even though I had already given him paracetamol) ended up not letting anyone touch him and sobbing in the corner (cue comments and looks from other parents). He is dairy and wheat free, and low sugar home cooked (except this luchtime we were out with friends and had an unhealthy treat - coincidence??). His bad pains last 2-4 hours so I know they will end but I just don't know how to deal with it - when he is bad paracetamol, wheat bags or distraction just dont help, when I wipe his bottom at a nappy change its like I am using sandpaper and by the end we are both in tears! - is there a nappy cream you can get with lidocaine or something in it?
The GP says there is nothing that can be done
I have a medical herbalist coming to see him on Friday and out next GI app is a week on Friday - the diarrhoea is back but no blood - if he had rectal probs would there not be blood?
 
Poor Freddy and poor mama. Any barrier cream is better than nothing. When Jae's bum was bad when she had rotovirus I actually used Silvadene cream (made for burns). Hopefully someone else has more recent experience with this as I have not had to deal with that for 12+ years, thankfully. I know from personal experience how miserable a sore bum can be though and I feel for him. Personally when my bum is bad, the only thing that relieves it is a shower... Jae's Crohn's has never shown blood, but she doesn't have rectal disease. I'm sorry Little Freddy is still suffering. I know there are lots of us out there trying to cope with dealing with littles who are suffering. You may want to post on the Parents and Carer's Support group... (Look in my sidebar).
 
we use calmospetine but per derm anything with plain zinc oxide will work plus lots of "air" when ever possible.
since he is in nappies
can he sleep at night on an open diaper?
You can roll a towel or get a "doughnut" for him to sit on to take the pressure off his bottom. ( rectal prolapse trick)
for pain that won't go away BTDT- lots of hugs- back rubs. I would let him "play" doc with his stuffed animals and see if he can fix them when they have pain -maybe he has an idea of what would "help".

there is also a stomach massage - counter clockwise which can "help" a little - follow his cues-
we also got a tens unit- which took the edge off.- not pain away.

what meds has the gi given and what do they say about this constant pain??
 
I tried the 'air' thing and put him in pants this afternoon - cue moping up wee all afternoon!! He still couldn't sit down this morning but seemed much more perky this afternoon - quite happy playing with his cars (when not weeing all over the floor!!).
MLP - Normally tummy wheat bags, or rubs, plus paracetamol plus distraction does the trick with his pain but I think sometimes when its low down nouthing helps, he can't walk, sit, if I pick him up it hurts so often we just stand (well I crouch) and hug! He is on no pain meds - our GP said 'it's just colick, he can't have buscopan until he is 6' - In other words - man up!!
I love the playing Dr's with his toys idea! and I think carolin suggested a shower - he is not keen on the shower and we don't have a bath but thinking about it maybe I could fill a large basin or trug with water and he could sit in that for a bit - I think it's worth a go!!
Thanks guys!! xx
 
Sending loads of love and squishy hugs to you and little guy Suzysu...:ghug:

Calmoseptine is a very good cream for nappy rash. Alternating with something like Ungvita is also helpful. I'm not sure that either of those is available in the UK though but there should be something equivalent.

Sitz baths are also good. A bowl will work just as well or even a larger sink like a laundry tub.

Thinking of you both! :heart:

Dusty. xxx

PS. If you can't source good alternative creams I would happily send you a tube of each to see if they help. Just PM me. :)
 
I'm so glad I found this forum! First of all, ALL of you are in my prayers for what you're dealing with. Would love to have your insight on my daughters situation.

At 8, after a year of no growing and a lifetime of tummy troubles (constipation and constant stomach aches) she was found to be severely anemic and required a blood transfusion. We did this at Hopkins where they also scoped her and found evidence that was "murky but suggested Celiac" plus she has one of the two genetic markers.

Went gluten free and her belly improved unless she got "glutenized" then she'd be violently ill.

3 years later her iron levels were bottomed out so I pulled her out of school to homeschool, carefully watched her food intake and got her pretty healthy and well. A year ago after fighting a virus and not getting well her hemoglobin was dangerously low. We met with a hematologist at Hopkins and began weekly IV iron infusions (she can't tolerate oral iron supplements.) This appeared to be a miracle cure. She blossomed, had a ton of energy and just felt great. She decided in September she wanted to go to high school with her friends and life was good.

IN October she started feeling tired and picking up every virus around school. Lo and behold her iron levels had bottomed out AGAIN. So we started another round of IV iron therapy in January. Except this time the fabulous results didn't come. She got the stomach flu in mid-February and basically never recovered.

We saw the GI team at Hopkins almost 2 weeks ago. The dr. is hoping that she has an undetected bacterial infection and recommended an antibiotic and probiotics with the request to call her in two weeks and if unchanged we'll start looking at doing another scope. So, first antibiotic just made her worse (flagyl), and yesterday the nurse called in a prescription for Cipro. Still no improvement.

Her symptoms - constant pain, mostly lower abdomen, with occasional sharp "stabbing" pain in left abdomen, frequent bowel movements ranging from watery diarrhea to yellow, mushy ick (probably going about 10 times a day, as opposed to her old normal of 2 times a day.) She also reports frequent lower back pain and knee pain. I would never have connected the knee pain but was floored at the number of you that shared the knee pain symptom. She's also got almost constant nausea.

In addition to being gluten-free I've removed all dairy, corn and soy from her diet, but it's made no difference. It currently seems like each day she gets just a little worse than the day before.

As for family history, my mom has Crohn's and I was diagnosed with irritable bowel years ago (though it mostly disappeared when I went gluten-free.)

Any insight, suggestions and support would be much appreciated. This is so frustrating! We've presently missed the last 3 weeks of school and my hubby is ALL over my case for not pushing her more to get to class. It's kind of hard when she's either doubled over in pain or can't get out of the bathroom.

Thanks in advance!
 
No advice from me as I think your much further down the path than we are. Just wanting to say welcome and express my support. So how long is it before you get in touch with the doctor again? I hate the waits between appointments when things don't seem to be working (or feel like there going worse), it's just awful trying to keep your head above water.
 
Thanks for the welcome! My doc is pretty accessible via email so I emailed her this morning and asked if there is anything we can do for the pain. Tums is it. Which is doing nothing. SIGH...Aside from that I'm supposed to report to her next Tuesday at which point we'll decide if the antibiotic treatment worked or if we need to do the scopes.
 
Have they at least done imaging ??
I am surprised they are waiting to scope...
Any stool tests prior to starting the abx?
I would look to DuPont or CHOP for a second opinion Gi ASAP.
She has been suffering way too long.
Second set of eyes doesn't hurt and may even help .
DS has been given numerous types of drugs to help with abdominal pain even when they thought it was "just Ibs " in nature prior to crohn's dx.
Never has anyone just said take tums ...

Hugs
 
My daughter was given Hyoscyamine for IBS-like symptoms (stomach cramps, diarrhea, headaches, etc.). It did not help her but it was worth a try. Her GI also mentioned trying Neurontin if her pain continues. I definitely think there are more options for pain besides Tums, but I would also be wanting to get to the root of the problem if I were you. Be persistent!
 

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