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*sigh* well I took lil Zach to an allergist today. The allergist found he had allergy cells in his nose smear and when he did the skin test he came out allergic to milk, egg, and peanuts an hes also allergic to dogs. So we get to elliminate milk products egg and peauts from his diet and see how he does. He also gets an x-ray of his head to check his adenoids. I was telling him about it and what he couldn;t eat and he started to get pretty upset lol poor kiddo.

As for the test I'm rather confused. He had a sample test on day which showed an allergy to trees, cats and milk and now this test shows he allergic to dog, egg peanuts and dogs...but not trees or cats? He is only 5 so I guess that may have something to do with it?

I did find it interesting that most of his allergies are food related... I'm a tad out of my element here...


Oh and Saturday night he had a bit of an episode...He had to go poop and while he was going he started saying "ow...ow...ow" then he started to cry. When he was checked on he was saying he had to poop because his back hurt really bad. No blood or mucous though but there was a large amount of stool. After that he was fine until a couple of hours later when he had to go again.
 
Has JJ been seen by a rheumatologist? We've taken Danny for work-ups by GIs, rheumi, allergists, pulmonologists, endocrinologists, neurologists, .... still nothing though.
 
No he hasn't Jeanne, but they may be a great place to start.
I had forgotten that I asked his doc about seeing one before and he requested that we wait. Well, I've waited right ? LOL.
I'm not sure if we have a local pediatric Rheumi but I'll check into it!

Lookatme: I'm sorry about all Zack's allergies ! We are all too familiar with them in my house. It seems between all 3 of my kids and myself we're allergic to everything there is!
It gets crazy trying to keep track sometimes !
Has he had anymore bathroom issues since you posted ? Is this something on going? or it jhas just recently started ? do you think he is a bit constipated and that's why it hurts more ?
Sorry,,Im full of questions and no answers LOL.
 
Hey crohnsmom. Zach has issues with the bathroom he's had them since he was a month old. He scared me half to dealth when he started pooping blood at such a young age. He had several ER tests and it was determined he had trouble digesting milk protiens so he got put on some special formula which didn;t agree with him and he began throwing up constantly. Then he started table food and he was able to keep things down. We decided to give milk anouther go and he had terrible stomache aches and watery sewage like diarrhea(oh that was AWEFUL!) so we switched his milk to lactaid which helped a bunch and we also cut the milk intake down a lot. It helped.

I always suspected something is/was going on just not sure what. He usually tells me his back hurts and that usually lets us know that he has to poop. Saturday was a bad day for him though. He seemed so traumatized. I don't think he's constipated though, he goes almost everyday and he drinks a lot. He seems incurably thirsty. He had anouther incident Sunday though which he started throwing up for no reason. He was watching a movie then said he had a headache and about half an hour later threw up. We gave him a bath gave him some soup then sent him to bed. Poor kiddo...
 
Zack's history sounds remarkably like my middle son Austin's. He too started with bloody stools at around 1 month. He ended up having 2 colonoscopies before he was 4 months old and was treated with prednisone for nearly a year. He was said to have "allergic colitis" and they said he was allergic to milk and soy. So, yep, special formula and then the projectile vomiting ! HORRID ! LOL. He was on that until he was about 10 months old and then I had a "theory". He had never been given MILK so how could they be sure he was allergic to it ?? So I decided to try whole milk with him. It worked like a charm and went off that nasty formula immediately. Now a days (he's 17) he's a bit lactose intolerant but I still wouldn't say he's "allergic".

I hate that we have to sit around and watch our babies in pain and discomfort and try and "guess" whats wrong and try not to over think and assume!
I hope Zack doesn't have anymore vomiting issues on top of everything else..that sounds awful :(
Have you considered taking him to a pediatric GI for testing / scopes now ?
How old is he btw ?
 
Zach is 5 I've talked to his doctor and I talked to my gi and they both tell me to just jeep an eye out and see how he progresses. Last year though he only gained a pound...though he grew a couple of inches. Id like to her him in to a gi just to talk to gum and see what he thinks but I can't with my insurance. I need a referral and that requires a doc which listens to what I have to say. Oh well perhaps after eliminating the foods which we think are causing trouble things will settle for him. At least he's not alone in his allergies though, another boy in his class is allergic to all the things Zach is.
 
Hi Guys

Your talking about problems with milk.

If the problem is lactose remove products high is lactose should help. And after 3 months they are usually be re-introduced and the person will likely have higher tolerance

If the problem is caesin? milk protein. You need to remove caesin in it many forms, caesin is used as filler in many products and goes by many names.

Be very careful removing caesin as if it is an allergy rather an intolence. With allergy after caesin has been remove some people have a much stronger reaction each time they are some in contact with caesin.

Hope this helps
 
Took JJ for his 14 year physical this morning.
The doctor charted his "growth" and said that he is only as tall as an almost average 12 year old! :eek:
His weight however is in the 75%. He started to try and talk to JJ about his weight and I immediately stopped him and said, he just needs to grow! JJ is not "fat" or even "heavy" in my eyes. Yes, he does have some extra weight around his abdominal area; however, the rest of him is quite slim ~ except his face. His face always looks "swollen". Problem is, and I've stated it several times before, he BARELY eats ! The doc did say "it is quite unusual for him to have this extra weight especially since the rest of us are all thin".
So he sent us for a bone age X-ray and I have already taken him and had it done. Quick and easy :)

Sooo....I have been brainstorming and of course researching LOL, and I'm thinking he has Hashimoto's Thyroid Disorder ~ It's an autoimmune thyroid disorder. It would make perfect sense ! He is way short for his age, he is exhausted all of the time, he barely eats yet gains weight, frequent headaches, muscle aches/pains, dry skin, delayed puberty, "the face". (some times he looks like he has a prednisone "moon face") and...dare I say?...a tad bit of depression ? I have just considered this with him to be "overly sensitive". In fact I believe I called him a "drama queen" in one of my earlier posts ? :lol:

I did ask his doctor today if he had ever tested jj's thyroid levels in the past (I couldn't remember off hand) and he said no because we've never had a reason to, until possibly now. I feel like once again that I am leading the doctor instead of the other way around! Oh well...whatever it takes right ! :)

I have already called Arnold Palmer Childrens to make an appointment with a Pediatric Endocrinologist because, even if I am wrong about the Hashimoto's, JJ still needs to have a full work up to see why he isn't developing as he should. They're on lunch break tho so I have to call back in an hour! LOL.
I am sooo hoping that I am right here ~
I mean I have already in my mind accepted that he has "something" autoimmune and I am sad for him for that, but oh my it would be such a blessing in disguise for it NOT to be Crohns ! :)
 
Hi

I have posted tests that rachel had due to be short on the other thread. Check with the males in family at what age they hit puberty. My daughter hit puberty late around 15 but this is not late for my side of family.
 
Thanks Catherine :)

The Endo's secretary called back this evening and he is scheduled to go see the new doctor on March 27th ~ It would have been the 16th but I have to be at Gab's follow up appointment 2 hours in the opposite direction that day. Tis ok tho! I was quite pleased, and surprised, how quickly we got an appointment ~ and they didn't even ask me for a doctors referral! :)
Hopefully, we'll at least be on a new right track on figuring out what's been wrong with my lil guy all this time!
 
Good luck! It certainly sounds like you may be onto something! Your kids are lucky to have you for a mom!! :thumleft:
 
DR T MD! :) And I'm not being sarcastic either T! :lol:

I hate that JJ is also having issues but thank god you are onto T, good on you! :medal1: Keep those bloody doctors on their toes!

I too hope JJ doesn't have Crohn's, hell I wish he had a big fat NOTHING but I wish for answers more. ;)

Good luck T!

Thinking of you mate, :heart:
Dusty. xxxxxxxx
 
Good luck Tracy! I hope they figure this out. The first 2 year that Danny has been sick he was also heavy around his mid section and face ... and everything looks swollen, even his hands. (He does not eat much either.) Dan's thyroid was supposedly normal tho. Please keep us posted!!
 
Well after 2 weeks of eliminating foods I haven't seen much of a differance with Zach. His nose is still stuffed up and he's still breathing out of his mouth. He hasn't had any potty issues though which is good(no crying before having to poo or during). I've started giving him vitamins which he enjoys *sigh*I just not sure what else I should do...
 
Ahhh...so glad I have JJ's "history" in this thread ! I am about to leave for his Endocrinology appointment and I was trying to make a list of all of his symptoms for the last 2 years or so. I was having a hard time remembering it all, and then POOF, I remembered this thread and was able to just copy down what I need from here ! :)
Less thinking for me is always a bonus !LOL

Will let you all know what/if we find out today :)

P.S....JJ and I just had an amazing 10 day vacation with just the two of us!! We are both so relaxed; I think it was just what we needed :)
 
Damn, too late to wish you good luck! So how did the appointment go T?

So fab to hear you had a great time! YAY! So happy for you hun. :)

Dusty. x:heart:x:heart:x
 
The appointment was relatively uneventful for the most part, but I''m still glad we went. He said now was the perfect time to start checking into things before JJ's growth was stunted.
He said according to his growth charts sent over by his pediatrician that JJ used to be around the 25 percent for his age group but is now only in the 5th. I have to go and get him a copy of the actual bone age xray because he thinks they may have mis read it. Report says he's about a year behind, but doctor believes it's probably more like 2 plus. Also, whereas JJ's pediatrician has been saying for nearly a year that JJ has "started" puberty but is just going slow, his Endo said that he hasn't started at all, and that's actually even better news in relation to his chances of growing.
So basically we have to go and get a bunch of bloods drawn and wait on those results to come in. If the results look ok, then he wants to just give him a few more months to watch and wait and see if things change at all. If the results are abnormal than he will have us do a 4 hour hormone test, or something like that. ;P
I am just pleased to know that his growth hasn't been stunted yet at all.
I still have no idea whats going on with him to cause these delays, but hopefully something more concrete will show up sooner than later :)
 
Thanks for the update T!

It's so good to hear you have a plan action hun and also fab to know that if there are any issues, hoping there aren't!, then you are at the early end of it. You are doing a damn good Mum! Kudos to you!

Dusty. x:heart:x:heart:x
 
Hi everyone! I posted a couple of months ago about my 10 yo DD who was having tests done to rule out Crohn's. I just wanted to update because it may help others struggling with diagnostic issues. Her GI ruled out Crohn's, Celiac and most other GI issues but my DD was still feeling horrible (constant stomach pain, weight loss, fatigue, insomnia, etc.). She's unable to go to school and was so depressed that we didn't have an answer. The GI doc basically gave up and said it was probably Functional Abdominal Pain. She wanted her to see a therapist and go on anti-depressants. I knew this wasn't right so we went to see a pediatric diagnostician. One look at her records and many questions later, he immediately honed in on a diagnosis of Dysautonomia/POTS. He started asking her all sorts of weird questions I never thought of, and it turned out she was feeling dizzy, light-headed and faint every time she got up. He took her heart rate lying down then standing up and it went from the 80s to 130s! This is the hallmark of POTS (Postural Orthostatic Tachycardia Syndrome). It's a dysfunction of the autonomic nervous system and can cause major stomach problems. Why our GI doc didn't suspect this I'll never know. Anyway, she just started on a med that will increase her blood volume and hopefully help her to feel better. It may be a long road but at least we know what we're dealing with.

I post our story just so others know about this rare illness just in case it may fit your child's symptoms too. Never stop advocating for your child! Good luck to all.
 
Hi Kandjmom,

I'm glad you finally have some answers and hope that her medication will help her as quickly as possible.

Just thought you might be interested in knowing that there is another parent member here who's daughter also has dysautonmia. Member name is imaboveitall - Julie, her daughter is Violet.

All the best to your daughter! :ghug:
 
Kandjmom, yep Violet has POTS also.
HR went from 84 to 128 when going from sitting to standing at doc's office, diastolic BP drops to around 30, it has been so low I cannot get a reading at all.
She has insomnia and sleep disturbance unless she takes her cyproheptadine at bedtime, it also eliminated the a.m. dizziness.

She also has heat intolerance, (overheats very easily), temp dysregulation (temp is often as low as 94 and is usually 95, never higher unless feverish, a fever for her is 98), mottled hands, sweaty palms, hyperhidrosis (has to use the strongest antiperspirant available), pooling of blood in legs, hemifacial flushing (bright red/hot patch on one cheek), exercise intolerance, orthostatic intolerance, olfactory hypersensitivity, migraines, prob more I am forgetting. Feel free to PM if you want to talk more about it. :hug:
 
Thanks for sharing. Is the medicine florinef? Has your daughter had an endocrine workup to check her adrenals?

(I've read quite a lot about POTS over the years, as my older son had this as a symptom of another problem he had. I never did the heart rate check on Danny ... am going to now)

Thanks again. Hope your daughter feels better!
 
Yes, the med is Florinef...just started today so we'll see if it helps. She's also on melatonin for insomnia, which has definitely helped, and Levsin when her GI system is cramping. She hasn't had an endocrine work up yet but all of her other blood tests are normal with the exception of a positive ANA and Sjorgren's (which the rheum said was a false positive).

The heart rate check is pretty easy to do yourself. I found a great heart rate app on my iPhone which I use to keep track of hers at home. A more official way to diagnose is a tilt table, but my DD's heart rate issue was so obvious the doc didn't feel the need to do more testing.
 
V had an endo workup at my request. Her cortisol is always the lowest end of normal or just below.
Endo ruled out Addison's though.
Florinef didn't help Violet, but salt loading does.
Her ANA was neg.
 
Hi everyone. Still at a loss with doctors, They do not believe my little one has crohns or any other ilness/disease. which i hope not but i believe she has, Deep down you know when there is something wrong with your own child & they just said she is chronically constipated. From the start my little one from birth always had problems with her bowel either been constipated or loose and also with keeping baby milk down. They put her on gaviscon but didnt help, She had tests for dairy & lactose intolarance which came back positive, So she was on neocate till she was 12months old. She was also on movicol from around 12-18 months old. This has never helped her. In the past year she has become really badly constipated and has been in hospital several time from collapsing in pain with her stomach. She is prone to getting urine infections, She was admitted to our local hospital by our paeditrican i dont think he believed movicol, lactoluse or dulcolax had not been helping her, So we spent one week in our local hospital which proved to them medication was not working, They did no tests on her at all then kept her on movicol(which does not help at all) & also dulcolax, Twice more she collapsed & i took her to A&E they started giving her enemas once a week which were so destressing for her. These would get rid of a little bit then back to just staining her pants. So they referred us to a specialist at our childrens hospital..She went into local childrens hospital 5 weeks ago now, She had an x-ray done which showed she was really badly compacted with poo in her bowel. So they admitted her to a ward to de-compact her which they did this by clean prep, She was in hospital 3 days had another x-ray before they discharged her which showed she had some poo left but majority had been cleared out, They told me to keep her on 4 sachets of movicol & 5ml of senna 4 times a day. She had that much clean prep it was coming out till 2 days after we left hospital. She had diorrheoa for 2 week.. Then 2 week after and she started having problems going to the toilet again, I have been giving her all her medication religiously to try and keep her regular so she doesnt block up again, Then they concider looking inside with the camera. (This i am going to demand). Still 5 nearly 6 weeks on she is struggling to go it has been a week since her last decent poo, She is complaining of stomach pain again & it has started to swell up. I have rang the hospital 5times in the past 3weeks to ask for advice all i got was up the medication to 5-6 sachets of movicol(which do not help her in anyway been on this 2years) & senna which is i think griping her. she is 3(just) and is at the age where she doesnt want to do anything she doesnt want too so it is hard getting the amount she was on down her nevermind more. I dont think this is right to be on lots of medication. Im at the end of my tether with it all its making me so upset for her but doctors will not listen at all in there eyes its 'just' constipation i dont think that is just it at all but hey im not the one with degree lol. My second cousin's little girl has just been diagnosed with colitis they said at the hospital they may have the same. I just want to know how people got diagnosed how long it took & what the symptoms are like in children. Sorry for the really long essay lol any info is so much apprecicated
 
Hi Leah,

When the medications haven't been working and you've had repeated trips to the hospital, it's hard to understand why the doctors haven't been more proactive in looking for the cause! Poor thing, it must be so difficult for her and you!

As your cousin's little girl has been diagnosed, is it possible for you to get a referral to her doctor? This doctor will be familiar with the family connection and is, obviously, open to the possibility that the symptoms may be more than just constipation.

Something you might ask your doctor about... when my son was much younger, he would sometimes become constipated. His doctor suggestion glycerin suppositories. They worked amazingly well and quickly (and I don't think they would conflict with her current medications but ASK!). And, while my son didn't like them, he never complained that they were painful. The on/off issue with the constipation lated for about a year to two. Although my son was diagnosed with Crohns last year, at 16 years, I don't think his earlier problem with constipation was related - I think it was him 'holding it in' so he didn't have to stop playing and his diet.

Good luck.
 
Hi thank you tesscorm, I dont understand why not either but they are supposed to know what they are doing. We are back on the 26th april so i will definatly be pushing for more tests and thing, But they dont seem to want to help me. Thanks for writing back apprechiated
 
I haven't updated in a while so thought I would :)

I got a call about JJ's blood results. Here's the interesting part...His pediatrician ordered very similar bloods as the specialist, with a few different ones between the two. Both doctors got results of all bloods. Pediatrician decided all blood work was "normal" and if I wanted to discuss them in detail I could come in for an appointment. Endocrinologist called me personally (not a nurse) and said that his blood work is NOT "normal" ~ not overly abnormal, but still abnormal. :shifty-t:
So JJ is scheduled for a 4 hour growth hormone test on June 22 for further investigation into this issue.
This would be exactly why I decided to take it upon myself, once again, and ignore his pediatrician and take him to the specialist myself !

His symptoms are still basically the same. We have stopped the gluten free diet as we didn't see any "real" improvements ~ I thought it was helping with his stomach aches, but that didn't last. He has been back to regular foods for about 3 weeks now and still feeling the same. Only difference lately is he is losing weight for some reason. I'm not sure if its from eating so little for so long thats finally catching up, or what, but it's a noticeable weight loss. I'm going to try and get him weighed soon, but Im guessing it's nearly 10 pounds or so within the last couple of weeks.
Could this weight loss be a sign that puberty is finally starting ? Any thoughts ? I'd rather think of it as a positive, than think that it's just another sign of possible Crohns. :yfrown:
 
That's interesting about the gluten free diet. We did the same thing for Grace and we thought it did help her stomach pains. Of course, 4 mo. later she had the worse flare up ever and the diet didn't seem to be working any more.
Which is a good thing! Grace loves her cinnamon rolls.:thumleft:

Sorry I don't know much about boy's puberty. I do know my dear mother said when my brother went through it was "when he speaks he goes from
Ms. Piggy to Barry White"!:rof::rof::rof::rof::rof::rof::rof::rof:

:soledance:Farmwife
 
Good luck Tracy!

Have you noticed that he's eating less? I'm wondering if he's having pain while eating or avoiding a 'larger' meal to avoid pain - could be contributing to the weight loss (especially, as you said, it seems be after he stopped the gluten free diet).

I hope you get some answers after the June testing.
 
Hi ladies! We are undiagnosed, too! I am not sure I want a diagnosis, but I'd sure love to know what is going on!? Our main symptoms are constipation and diarrhea, and tummy aches all the time! She also has reflux and food allergies, and overactive bladder that worsens with constipation. Her scope showed inflammation of the ileum and right colon but the GI doc doesn't think it is Crohn's -- or IBD at all? Does anyone have any ideas on what it could be besides IBD? They say it isn't Celiac or EoE -- they don't know what it is?? She's now taking Sulfasalaine on top of everything else. She's not getting better -- she might be getting worse. Anyone??
 
HI Mom,

Has Gracie had any other tests done besides the colonoscopy/upper endoscopy?
Like a Barium xray, CT scan, MRI (MRE), etc?
I wouldn't just accept a diagnosis of HPylori with out further testing, especially since there's inflammation involved.
I think I have asked before but not sure, ~ was the inflammation chronic or acute ?

When she starts to show signs of being impacted do you go to a liquid diet for a day or two to see if that helps any?
 
Hi Crohn's Mom! Let's see -- she has not had ANY of those tests!?!?! What types of things would those help with?? She's had several x-rays to look for constipation -- and that's how we've been able to see the impactions. She's had bloodwork and we've done stool cultures -- so no (other) infections were found.

I've not ever been advised to do a liquid diet for a day or two!? But, I'd love to hear more about that as I'd love to do something to help avoid another "clean out" -- what do you suggest?

The other thing Gracie has is extreme thirst. She's SO thirst ALL of the time but it gets even worse when she's really feeling badly. Don't know what that could be? And random joint pain here and there??

ETA: the inflammation was acute in the ileum and it was cryptitis in the left colon (didn't say acute or chronic) -- the pathology mentioned neutrophils (ot something like that).
 
Well the colonoscopy can only see part of the small intestines, so there's plenty more bowel left that needs to be examined to be sure that she does not have Crohn's. These other tests would help to visualize the remaining bowel and look for other things such as scar tissue, strictures, ulcers, etc.

A liquid diet would just be similar to a "clean out" for a colonoscopy; minus the dreaded prep. In essence it would help her bowels to rest for a few days without adding any addition solid foods that have no where to go for the moment, and hopefully allowing her to empty more and reducing the pain. Tesscorm knows a lot about EN (enteral nutrition) and could probably recommend some good supplement drinks so that Gracie is still getting some nutrition while not "eating"; such as Boost drinks or Ensure. Hopefully she can jump in here and help recommend something to try :) It does help Gab to do liquids for a bit when she feels "impacted".

I don't really know what to say about the extreme thirst?? Someone help me out here :)

The random joint pain could be an EIM of IBD if she does indeed have Crohn's. There is a subform for EIM's here (extra intestinal manifestations ) so maybe have a look around there as well.

Acute inflammation means that it has basically been a recent thing in her body. Which, could be a "good" thing because it's not "chronic" so hopefully it won't become that way and maybe it really is HPylori causing the problems from a recent infection ? (we can dream right ? :) )

Tess : Yes, JJ is eating very little lately. I do believe it is because of a somewhat unconscious fear of pain when he does eat :( He claims to be hungry, very hungry, and then barely eats. Poor kiddo should be eating me out of house and home at 14 years old; instead he's eating maybe the equivalent of a sandwich a day. :confused2:
 
Momto2girls,
My Gracie has joint pain in her r. knee and lately her left also. She also get's weakness on the right side of her leg. The pain is increasing so I will be giving Tylenol to help. She can go days or weeks without a problem. Not lately though. My doc asked me about if she was thirsty and I said YES. He made sure kidneys were working.
Overwhelming thirst can be a sign of kidney issues.
Farmwife
 
Momto2girls,

EN is certainly something worth looking into! As a treatment for Crohns, it can be as successful as steroids at inducing remission, has NO side effects, has anti-inflammatory properties and provides nutrition in an easily digested formula (allowed bowel rest). It usually requires that the formula replace all foods for a period of time (six weeks for my son) and then regular food is gradually reintroduced. For some reason (perhaps cost and/or patient compliancy), it is not as commonly used in the U.S. as it is elsewhere; in Canada, Europe, etc. it is often the first treatment option for children. However, as I said, it is not easy to eliminate all food for that long a period and, my understanding is that, it is most successful at achieving remission if the Crohns is located in the small intestine.

However, even if used NOT as the sole treatment, it can still help in alleviating symptoms through the bowel rest and provide nutrition. There are a number of formulas available - Modulen, Peptamin, Vivonex (or a similar name???), Boost and Ensure - at least some, if not all, are available without a prescription (although a prescription may help get insurance coverage??). I don't believe that the Boost and Ensure have the exact same formulation as the others (something to with how certain components are broken down???) but some GIs do use these shakes for EN, they are easily available and may taste better (allowing better compliancy).

Look through the Enteral Nutrition subforum under Treatment, there are lots of threads in this forum re En, in particular, one thread was started called Kids on EN (this subforum) which will provide you with more info.

Good luck! :ghug:


Farmwife - Twiggy930 's son was also having leg pain - I'm not sure if they've determined the cause or treatment but, if she sees this, she may be able to offer some suggestions...


Tracy - maybe JJ could try the shakes as well??? Even before Stephen was sick, I sometimes gave my kids the Carnation breakfast shakes (with their breakfast). They used to find them a bit 'thick' (and probably too filling with food), so I used to split one shake between the two of them and dilute it with milk... They assumed it was a 'treat' having chocolate milk for breakfast :)


:)
 
YUM! Carnation Instant Breakfast - Love those!

O was also VERY thirsty prior to dx. Doc said it was because she was dehydrated. Something to do with the inflammation and not absorbing enough fluids? I thought it was just from the diarrhea but he said also not absorbing.
 
Thanks for the AWESOME info...especially about EN -- I figured it was some fancy by prescription only thing! But that's great you can just get it and try it!

Crohn'sMom -- It is interesting b/c Gracie will almost self-regulate to a liquid diet I've noticed -- when she's not feeling well she only wants noodle soup!

Crohnsinct -- Crazy that your daughter was super thirsty as well! OMG, she is always wanting another drink! Which they say constipated kids don't drink enough but that is for sure not the case here.

So Gracie had an xray and she's not constipated or impacted -- yay! But, she had blood in her last two stools. :( What does that mean!?!!?
 
Hey there. Sorry I'm so late getting to this. I have gone back to work :yrolleyes:

My son has had leg pain for about 3 months now. The pain is in the front of his upper thigh in his left leg. It is so bad he has been unable to bear weight on it for 3 months and has been getting around on crutches. We have had an x-ray of it and gone to a pediatric orthopedic surgeon. They didn't find anything wrong with the bone. The GI thinks it is probably Crohn's related and the physio thinks the origin of the pain is the sacroiliac joint in the hip. We have been referred to a pediatric rheumatologist but the appointment (earliest available) is in OCTOBER!!! We have been going to a physiotherapist and doing the exercises they have recommended and have been trying to do some swimming as a way of exercising the leg without too much weight bearing. Unfortunately the last time we went he accidentially kicked the wall of the pool and broke his foot!!! :hallo3: I wish I had more advice about the leg pain. It is one of our biggest problems right now and no one seems to have any solutions.
 
Thanks for the reply Twiggy930
I'm starting to get worried about Grace. When her knee/leg starts to hurt. She can't hardly walk. Her dad twice had to carry her out of a store.
Have you or anyone had a problem with EIM flaring up after a BM.
Grace finally had her BM. Her knee and belly started to act up.
I would think she would feel better after not having a BM for 4 days.

Farmwife
 
Hi everyone. I am new to this forum but it looks like an amazing place to receive advice and support. I think anyone dealing with this is so incredibly brave. Anyway I have a 9 year old daughter Amy who two years ago exactly was admitted to Hospital with an abscess in her small bowel. Luckily it was able to be treated with Antibiotics and 6 weeks of enteral nutrition therapy via NG tube. At the time her GI specialist was convinced she had Crohn's disease. But scopes came back normal (yay) and we went on our merry way. The past two years have been fairly uneventful, just the odd tummy ache.
Well lately she has been dealing with constant tummy pain that was put down to constipation. This is finally clearing up but stomach pain is worse than ever. For some reason it seems to be agony when ever she eats anything, and she is trying not to eat at all. We are 6 weeks dealing with this now and she finds it hard to do most things including bending over, any physical activity and even sleeping. So far she has had an x-ray, ultrasound and various blood tests. The x-ray was the only thing showing the constipation, but the last one showed it to be just about cleared up. She has lost about 6 pounds during this time and is at the point where she screams as soon as the food seems to hit her stomach. Oh and she is always complaining of constant headache, also I was wondering if anyone else had been through anything like this or have any ideas what it could be?:sign0085:
Thanks for listening.
 
Time to go back to gi. My daughter dx with crohn's in January, also had a xray showing constipation. Hope its not crohn but it sounds very like Sarah symptoms prior to dx.
 
We are undiagnosed, but my DD battles constipation with impaction as well. We've had 2-3 xrays showing impaction -- up to every 2 weeks. My daughter is 4 and her scope showed inflammation but no damage to dx Crohn's. But, they started her on sulfasalazine and it seems to have helped the constipation some? At least when we had an x-ray last week she was not constipated. But, the next day she had blood in her stool, so who knows what we are dealing with now?
 
Poppets mom - It could be that she does, in fact, have Crohns (as her GI initially suspected) and that the antibiotics and EN put her into remission (or close enough to be mainly symptom-free) for the last couple of years and she is now having a flare. I would go back to the GI for tests.

Twiggy - so sorry to hear about your son's foot! As if it weren't enough that his leg is still hurting, now he has to deal with a broken foot. :( Has the physio helped at all with his leg pain?
 
Hi, I agree with Tesscorm.
My 3 yr. old Grace is undiagnosed. About a year ago she went through a 4mo. period of NO symptoms. Ya!!!! We thought she was cured of what had been ailing her since she was 6mo. old. However, it came back worse!
So your DD in could be in a flare up. I've learned here that "normal test" don't always show the truth. Keep PUSHING"


Farmwife
 
Thanks for your replies Catherine,Tesscorm,momto2girls and farmwife. Just heard from the GI clinic, and they can squeeze her in for an appointment tomorrow:ybiggrin: Really hoping they can come up with something for this poor miserable little girl. I hate it when tests come back normal but you just know something is really wrong. I have the feeling they'll try to give us the catchall IBS diagnonsis.:boring:
Farmwife do they plan to run more tests on your little one? I certainly hope so. mom to 2 girls blood in stool isn't always a cause for concern but is definitely worth getting checked out. Apart from constipation is your daughter having other issues? Good luck to anyone dealing with this crap, (haha) I know as a parent how worrying it is.:wink:
 
Poppets Mum -- You know, we started with tummy issues with Gracie about 1.5 years ago -- she was doubled over in pain -- the very first time I thought it might be her appendix!? Then after a while I started to notice a pattern of the pain with potty accidents, and we had her tested for UTIs -- and she was fine. She had frequency but she her blood sugars were (mostly) fine as well. So we went to urology and then nephrology and found out it was constipation causing her bladder spasms and we sorted that out with miralax, and some dietary restrictions. But, over time it got worse, and now she's more severely constipated even with meds, constant tummy aches, lethargy and D. She wasn't sleeping at all until we started the prevacid which has helped! We have a lot of IBD in our family history and so the GI doc scoped and found inflammation in the ileum and left colon but said it wasn't Crohn's. Also, she has H. Pylori/Gastritis but I am still unclear on how that effects this whole thing.

We go for a follow up tomorrow morning. B/c the bleeding has stopped I think I might opt for no further testing for now and see how she does, but I still want to hear what they have to say.
 
SO since we are as of yet undiagnosed, and our follow-up appt is tomorrow -- our first appt since our scope -- what would you all recommend I ask for? I know Dusty mentioned MRI, CT Scan, Ultrasound? Should I re-do her bloodwork from early April? Or is it too soon for anything to have changed? I will be talking to them about switching docs, so maybe some of this stuff can wait for the new doc?

You all have been so helpful! I just want to make sure I ask for the right things when I go in.
 
Momto2girls: since she had inflammation on scope I would want blood drawn again to check inflammation markers...maybe stool tests for inflammation as well. Just a few quick thoughts. Hopefully the experts can chime in here.
 
Thanks crohnsinct -- as far as you know, inflammation markers can change over the course of two months? It kind of threw me off when the doc said she was calling in blood tests "even though everything was normal in early April."
 
Hmmm I am no expert in kids as yet undiagnosed but O's numbers changed significantly(docs words not mine...he doesn't readily share numbers..would have to if I asked but I rather like not knowing...just the facts) over 6 weeks while on Remicade so if your daughter had inflammation and maybe has IBD I would guess that inflammation can change. Plus if it goes down that would be comforting to know.

Good Luck!
 
I would definitely have the bloods redone. Depending on what is happening they have the capacity to change very quickly either in response to disease/infection and so on or in response to treatment.

Dusty. xxx
 
So we did have bloodwork done and we have the supplies for more stool cultures. So we'll see what they say? We are switching docs and we see our new doc at the end of the month. So whew, at least that is behind us. She said bloodwork would be in today or tomorrow so I'll keep you all posted!
 
Oh I'm sorry you still haven't heard. I hate that. Grr.

I sure hope I do too. We talked a lot about the problems we've been having with communications and she asked me to tell her manager about it -- they've had several families dissatisfied with it all. So at least I am not the only one!
 
I guess I'll post this question here.
Grace had BAD knee pain that woke her up last night.:(
I was wondering if any of your children have or had knee pain that would come on suddenly, last a couple minutes and then leave for a couple minutes, then come a couple minute, then leave for a couple minute and on and on and on....
It reminds me of her abdominal pains. However it's in her knees no where else.
:hug:Farmwife
 
I think Freddy gets a similar pain in his hip - comes and goes - seems bad when he has it (screaming etc). Referred pain maybe? I don't know? Did you mention her joint pain to her GI? maybe you could ask when they phone you tomorrow? Hope she has a better night tonight xx
 
Sarah use to complain of knee pain. It wasn't there all the time, more of a come and go thing. I put it down to "growing pains"! Ha, how wrong was I! :yfaint:

Dusty. xxx
 
I know this is probably totally unrelated, but Gracie's had a really sore belly button -- it is red and swollen under the belly button and seems very painful for her. She's woken up the past two nights. I just thought since you all seem medically knowledgable maybe you'd know what it is?
 
With it being red and swollen infection springs to mind. Is there any smell or discharge?

Dusty. xxx
 
Dusty -- there isn't any smell or discharge at this point. I thought infection, too...like maybe a mix of dirt and sunscreen and chlorine or whatever from the pool? But, it is REALLY bothering her? I'll see how it looks this morning and might need to take her in? Hmmm...
 
If it is no better I would have it seen to particularly as it is bothering her. It could be either a fungal or bacterial infection but either way they should be able to give you something to clear it up.

Good luck and let us know how you get on.

Dusty. :hug:
 
Thanks! :) I think I will call later this morning and see if the nurse thinks there is something over-the-counter that will work or if they need to see her?
 
I won't make this long, but my 9 year old son has had "issues" since he was a baby. Nothing serious, nothing to point directly to IBD, but having it myself I watch things closer.

Past couple of years we've had a few episodes of tummy issues, he never says it is his stomach, it's always his waist. He says the pain is like someone stabbing him in the waist (he always points to his belly button area).

He goes to the bathroom frequently, I know that he has bouts of diarrhea but he won't discuss his bathroom habits with me. I have even heard him whimpering or almost crying through the door but when I ask if he's okay he always says he's fine. I've asked him about blood but he says he's never had any.

A few days ago he had a really bad bathroom experience, he actually called me in there. He was bent over on the toilet, crying and shaking, sweating and in so much pain I felt like going crazy. I gave him a cold washcloth, some tylenol and hated that there wasn't anything else I could do. He laid down on his bed in the fetal position just crying until he felt sick. He threw up, a lot but the stomach pain stayed for at least another 45 minutes.

After it was all over, he told me he was fine, he didn't need to go to the doctor. I know that he is deathly afraid of shots, needles, and anything to do with the hospital, partly because of my experiences and a few (non tummy related) of his own.

I don't want to be a crazy mom, demanding all sorts of tests because I have Crohn's but I am really getting concerned. His "issues" seem to be following the same sort of pattern that my disease did, small flares I hid during childhood, up to when it got out of control in middle school when I was being bullied and under a lot of stress for a little girl.

Should I just visit with the pediatrician, explain everything and ask for bloodwork? I feel like a really bad mom, I haven't had current bloods on him in several years because of the needle anxiety.

Does anyone understand? I really really don't want my son to be sick. But I will die inside if he is having issues and I'm standing by doing nothing because I want it to be nothing. I feel like I am driving myself crazy. I know it isn't my fault, but I can handle having Crohn's. I don't think I could watch my son go through even half of what I've been through. I don't know how you amazing parents do it.

Help!
 
SarahAnne,
I do have some experience with this type of situation. If you read an earlier post by me on this thread (#93), you will read that my son had some problems at the same age and that he was also needle phobic.

I was not forceful enough earlier on in getting the diagnosis and treatment that he needed because medical friends and family kept saying, "oh he's fine, just skinny...eats cake at our house, etc." He would also soon forget the pain and symptoms as soon as an episode passed. When asked at the doctors if he had any pain he would reply, "No", even though he was writhing in pain on the couch the whole day before! :ybatty:

We used an Emla creme and some Ativan to finally get some blood results that would support how ill he was. I am sure glad that we did. That is what finally got us the help.

I sure hope that your child does not have a chronic illness, but I would encourage you to get the investigations done that you think that he needs. You and he have every right to have the medical staff prove to you that it is not an IBD, and then, if it is not, for them to help figure out how to help him.

Although my son has been healthy since that time and plays lots of sports, he is still very thin and I watch him like a hawk if he complains of any 'tummy' or fatigue issues. I am sure that it is like this for anyone with these types of problems in their family.

:goodluck:
 
happy ~ Thanks for the reassuring words. My son does not fit the "typical" (haha, I know right) look for a child with IBD. He is a little shorter than average, as I am and his father is. He is also built like his natural father, kind of stocky. He definitely isn't thin, he's not fat either.

I wondered about the blood work. I asked my mom (used to be an RN before she had to stop working b/c of her fibro), and she said that they probably wouldn't give him anything to calm him, but they might use lidocaine to numb the area. I'm convinced he will have a panic attack if he even sees a needle.

He has a pretty decent appetite, but he is also very picky and funny about food. He eats pizza, but he doesn't care much for the sauce or spaghetti sauce as it "burns" his mouth. He drinks a LOT of milk. He would probably down a gallon a day if I didn't set restrictions on it.

Thanks again. I'm going to set up an appointment with the pediatrician. We only have one pediatric gastro in my town, he is very hard to get an appointment with but I imagine the peds office could arrange it if it is necessary later. We saw him once in emergency a few years back when my son swallowed a quarter and we had to have the damn stuck thing removed by endoscopy. I am desperately hoping that this is all nothing. I am trying to forget all of the random, small things that happened when he was a baby that I keep trying to make connections to my Crohn's.

I feel like my mind is in a whirlwind. I guess it doesn't help that this is all happening as am I just starting a small course of prednisone. When it rains it pours.
 
SarahAnne, It is natural that you are concerned and a bit anxious. I can also tell you from my own experience that the anxiety about it only makes it worse and makes the doctors focus on you and your anxiety (ie. worried mom about non-sick child) rather than on the possibility that your child may in fact be ill. So take some time to think about the worst "what if" scenerios and then calm yourself and be matter-of-fact with the medical people. They will take you more seriously this way and you will save your energy rather than spending it on the worrying. I know that this is not easy to do. :hug:
 
Hi SarahAnne,
Welcome to the forum.:hug:
My little Farm girl Grace is three and were going through the process of her being diagnosed. Her symptoms go all the way back to 6mo. old. We've been dealing with her pains for a long time. I know what you mean about not waiting to seem crazy about what their going through. For years I listen to my doc and others tell me their hopefully grow out of it. Believe me I had hoped they were right. Sadly her symptoms got worse and more numerous till I had enough. Imagen trying to tell a three year old why she's getting poke with a needle by a stranger. So far she's taken it like a trooper. Last time she didn't even cry. I was proud. I wanted to cry but I didn't. I'm with you son I dislike needles.
You know whats normal for you son. You know more than most about the dangers of untreated crohn's. You know what your young man needs. If he is or gets to the place that you and or he has has enough you'll now it. However their is a stool sample test that can be preformed to measure inflammation. That's easy enough. No needles.
I do hope he gets well. You found the right place. Plenty of parents here have been in you place. Welcome again to the forum.
Farmwife
 
SarahAnne - I really feel for you and know what it is like constantly worrying about your child and not knowing what to do - My now nearly 2 year old has had chronic vomiting and diarrhoea since a few months after starting solid food, he has had periods of weight loss followed by gain and because of this the Drs were unwilling to do much, even when he developed iron deficiency anaemia, mouth ulcers, blood in faeces and bleeding round his bottom. I worried like you that it may be something serious but also I didnt want to put him through lots of tests if he didnt need it.
In the end he had all the tests including endoscopy and colonoscopy - I cant pretend it wasnt awful - it was - all the tests came back ok - and I thought I would feel bad for putting him through it all - but I am glad I did it as now we know it is nouthing too serious we can concentrate on getting him better and on with the rest of our lives. If all the tests had come back possitive it would have been terrible but at least he would be in a better position to get the treatment that he might need.
I feel I am rambling now!!!! - I just wanted to say I know how you feel - good luck - I will be thinking of you and your boy xxxx
 
SarahAnne: I definitely feel for you. I can't imagine what it must be like watching your child and suspecting he has IBD when you yourself know first hand the pain and suffering involved. You are 100% right in bringing him in and having him looled at and tested. Even if it isn't IBD it is something and the poor thing should get relief. Farmwife had an excellant suggestion with the stool testing. Maybe just do that first although I am sure the ped will want to do a whole panel.

I am sorry you and your son are having to deal with this. Excellant advice from Happy also. Good luck and keep us posted!
 
SarahAnne, my son and husband both have Crohn's and it is really amazing to me they are in the same location, have the same symptoms during attacks. While it is certainly hard to have a child with Crohn's you want to fix it but you can't. I think for my son who has certainly seen his father go through some Crohn's related stuff. He was really scared at first (he was dx at 10y.o.) but really looked to his father as a role model and how he handled things. Now when he is not feeling well, he knows he has someone really close who understands.
We were of course terrified of him having Crohn's before his diagnosis but at the same time there was not a lot of the waiting and ruling out various other things before diagnosing him. Once I explained his symptoms to the doctor, tummy pains, bowel movement issues, tired, weight loss. They tested him first for Crohns. I would say at the time he was terrified and hated needles and the first blood draw was awful I hate to say as he was so dehydrated and upset. I think he just about squeezed my hand off. It has certainly gotten easier especially after that first year where they were doing blood work every 4-6 weeks.
I'm kinda rambling here so I will get to the point I was trying to make... The sooner you get him tested the sooner they can figure out what is going on and make him feel better. I'm sorry you are going through this and wish no one had to.
 
Hey SarahAnne,

I wholeheartedly agree with all that has been said above.

When Matt showed one week of very, very mild symptoms I was in two minds about taking him to the doctor. I thought I was having the biggest over reaction of the century but there was something niggling at the back of my mind and I can honestly say I didn't even have Crohn's on my mind, or did I??
Anyway i saw his GP and asked if he could do a request for bloods including ESR and CRP. His CRP was raised and within two weeks he had his diagnosis.

To say my head was spinning would be an understatement! After the dust had settled I thought about how all this had come about and I think I did what I did out of fear. The fear of him going undiagnosed like Sarah was obviously playing on my mind so much that I feared not knowing more than I did hearing my fears confirmed. I think you may be at this point too hun...

I really really don't want my son to be sick. But I will die inside if he is having issues and I'm standing by doing nothing because I want it to be nothing.
Click to expand...

...that says it all. God knows it is heartbreaking enough to hear the words Crohn's Disease but the guilt of doing nothing will leave a scar that never heals.

My son has always hated needles and anything to do with doctors, hospitals, anything! It sounds bloody awful when I write it down or say it out loud but after Sarah was diagnosed and seeing all she went through I use to sometimes think to myself...if one of children had to have this awful disease then thank goodness it's Sarah because she can handle it. Well then it was Matt's turn and he stepped up to the plate in a way I never thought possible. Boy did I underestimate him! :lol:

I hope more than anything that your boy doesn't have IBD but if he does won't he have the best darn advocate he possibly can with such a wise, caring and understanding Mum in his corner. :)

Dusty. :heart:
 
ARRRRRRRRRRRRRRRRRRRGGGGGGGGGGGGGGGGGGGGGGGG:ymad::ymad:
Sorry just had to get that out!!
I think most of you know Freddy's story so I won't repeat it!
After last Monday's fantastic GI appointment I have been on a high, Freddy was eating really well, pain getting less, poo bright orange and slimey but less frequent - and not as diarrhoea like as normal - YAY!
Now we are bareley eating at all - back to throwing food on the floor as if angry with it, (or alternatively throwing it at the dog as that is apparently more amusing). Being very emotional and clingy - needing mountains of hugs and cuddles. And the diarrhoea is way worse (started after a dark pink\maroon BM). - no vomiting (yet) though so I suppose that's good!!
I just don't know what to do I know he is not seriously ill but he is obviously not normal - I hate the thought that he is in discomfort and pain - I just want him to be better and be able to lead a normal life:(
There rant over!!
Sorry everyone!!
 
Suzy: Sorry but I think throwing food at the dog is pretty funny too:ylol2:

Is he still on the senna? Maybe now that you got him regular the senna needs to be decreased and that is why the D? Dark pink/marron? That sounds like it could be blood BUT Freddy has always pooped the colors of the rainbow so might be nothing. Maybe give the GI a ring to see what to do about the senna.

I really hope his refusing to eat is just his review of your cooking.
 
:tongue::tongue::tongue::tongue:

I will have you know that I have made 2 batches of honey fairy cakes and they have all been gobbled up! (although not by Freddy) and my first 'breadmaker' loaf of bread is just in the breadmaker now (ok so I suppose that doesn't really count as me cooking it).
The dog enjoys having food thrown at her - at least she appreciates my cooking!! (although she does also seem to enjoy licking vomit up off the floor as well so I'm not sure we can really base much on her sense of taste!).
I wondered about blood too but as you say he does seem to produce multicouloured stools!! - good point about the senna having done its job! the GI said it should take a couple of weeks so maybe I will wait it out for the next week (unless he gets worse) and then reassess the situation. The only thing that is bothering me slightly is if the senna has done its job why is he starting to be clingy and emotional again - I suppose it could just be that he is feeling out of sorts or that the senna is causing a bit of discomfort.

Who knows!!

Thanks
 
What's wrong with YOU Crohnsinct!!!!:voodoo:
You kick poor Suzysu why she down!!!:(
And what if her food is so bad that it could make every living soul sick.:stinks:
She would feel bad.:kiss:
Now don't you feel horrible!!!!:tongue:
:rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof:

:ylol2:Sorry Suzysu you really do deserve better friends then the two of us.:hug:


Farmwife
 
I'm just glad I am able to provide a constant source of amusement for the two of you!!:shifty:
How is Grace today? Hope she is doing alright :heart:
 
Don't you worry Suzy, my kids (Crohn's aside) have grown up just fine with my cooking and yours will too! :lol:

For all we know, Crohnsinct and Farmwife are all talk! :lol: After all, we haven't actually seen or tasted their cooking... hmmm!

But, I hope Freddy's feeling better soon and that it is just his body adjusting to the Senna :ghug:
 
Would love to stay online and quip back and forth with you ah hem ladies but I have to go make 20 candy leis for my little one's end of the year party. I may not impress in the kitchen but when it comes to crafts look out...you do know Martha Stewart came from CT...where do you think she gets all her ideas?
 
:ymad:
The GI nurse just called, Freddy had a high potassium level and because his phosphorus level was high at the previous sample (oh but at this sample they didn't think to re-test it!!!!) he has to go back in to have a whole load more blood tests next week. My very helpful MIL has been saying all along that all his problems are to do with how many bananas he eats - and now she says his high potassium is down to this too (I know bananas are high in potassium) It would bre REALLY annoying if she were right!! - Does anyone know how many bananas is too many for a 2 year old?? - he really does love them and sometimes it is all I can get him to eat.
Sorry to be moaning yet again - I know most of you have far greater worries than me.
 
Sorry Suzy, have no idea re the bananas :( But, how many does he eat? I would think it would be difficult to truly eat TOO many bananas???

(On the off chance that it is the bananas... OMG, don't tell your MIL!! :ybatty:)

:D
 
Really not sure if I am doing the right thing here, but Amy's GI has offered to do a colonoscopy/Endoscopy, although he is totally convinced she has IBS. At the time I agreed to it, because I am really hoping that he finds something to explain this constant tummy pain that is instantly fixable. I really don't want it to be Crohn's but I also don't want it to be ibs as what I've read on it so far, it can be miserable with no pain relievers or much of anything can be done for it. Anyway Amy doesn't want to do it as she still remembers the last one, plus it can't be done until the first week of school in September:ymad: Meanwhile she just keeps getting worse. Still barely eating,tired a lot,backache,dizziness and headache.Does anybody elses child have these symptoms? As I have said before, so far all blood tests and ultrasound have come back completely normal so I am second guessing myself on whether to go ahead with the scopes.:confused2:
 
Hi Poppet's mum

I really am no expert but given her previous history of a bowel abcess, and her current signs i guess further tests are needed - I don't know her medical history but maybe she has scarring, adhesions or a stricture from the previous abcess? - Im sure your GI knows best but maybe ask if a MRI would tell more? I don't think a scope can visualise the whole intestine so maybe they missed the inflammed bit last time - maybe she needs a pill cam? If you just go with the IBS dx would you totally accept it? or everytime she got worse would a tiny part of you be questioning the diagnosis? I don't think there is an easy answer and I know how hard it is to watch your child struggle, and in the same way how difficult it is to put them through any kind of medical procedure. Thinking of you loads :ghug:
 
Hi poppets mom

I would go ahead with the scopes. My son's symptoms included weight loss, loss of appetite, tiredness, fever, pale, backaches, night sweats, canker sores and diarrhea. The symptoms weren't constant, they would come and go, sometimes all would be present, sometimes just a few... His GP ran a number of tests (now, I'm not sure all of what she was ruling out - hepatitis, mono, parasites, etc.) and all came back normal (except iron levels). Even our first trip to emergency, with more tests and ultrasounds, all came back normal (or just 'minor' indications of inflammation). When we finally took him to our children's hospital's emergency, he was admitted and by that time his CRP and sed rate were elevated (not sure if his GP ever checked these???). However, there are many members/children who's inflammation markers (CRP, Sed Rate) are normal even while the inflammation is active.

Do not give her nsaids (i.e. ibuprofen, etc.) for her backaches as they will aggravate intestinal inflammation (my son has been told Tylenol only and he uses Tiger Balm ointment to help his backache).

You can also ask her GI re Enternal Nutrition (EN) - regardless of IBD or IBS, EN for a time period may help alleviate some of her symptoms as it is very easily digested, provides bowel rest, is anti-inflammatory, will provide her with her necessary nutrition and has absolutely no side effects (and, if it is Crohns and dependent on location, has a comparable success rate at inducing remission as steroids). However, compliancy is a bit difficult as the usual course of treatment is approx. 6 weeks with formula only (no food). But, in Amy's case, as you do not have a diagnosis yet, perhaps just a week or two will just help to alleviate symptoms.

I'm sorry she's struggling now and, as a parent, it's so heartbreaking to see them suffering and not be able to help! :ghug: I hope some of this info is helpful...

Good luck!
 
Suzy: Too many bananas? Is there such a thing? You are lucky your MIL is pointing to the bananas and not your cooking and I am not kidding here my MIL is convinced my cooking poisoned her son and gave him type 2 diabetes because he didn't have it when she cooked for him...um he left your house at 21!

Poppet: I don't have much to add but just so you have a full committee vote I vote scopes. But that is me...I wouldn't rest until I knew something for sure..either she has IBD or not and then we could move on. Of I didn't have them do it, I would always wonder.
 
I'm sure the banana thing is her way of blaming my cooking - I'm sure if I raised him on good kosher chicken soup like her boys he would be fine ;) The best quote was from my husband 'well he never had any problems before you started feeding him solids' - if that is not a direct way of saying my cooking is rubbish I don't know what is!!!!
He eats 1-2 bananas per day - maybe that is too much for a small boy, maybe I will cut him down a bit just in case - its just we have already cut out so many things he likes - I may as well just take him to macdonalds every meal time at this rate - we will be feeding him nothing healthy soon!!
 
Oh no! You already started solids before age 5?!:eek: There's your problem right there. What parenting manual are you reading?

I would be shocked if the doc said 1-2 bananas are too much for a child. Now if they are constipated maybe cut down a bit but certainly they wouldn't tell you that many bananas are not healthy.

I would be equally shocked to hear of a MIL who doesn't blame all of thir son or grandchildren's problems (physical, emotional or financial) on the daughter in law. I know they are out there..I just haven't met them.

It is clear you are an amazing mom doing everything in your power to try to find out what is happening to Freddy (was I really just nice to you?) so don't let the turkeys get you down. You keep fighting the good fight and tell her and any other noise makers to hush up...we got your back girlfriend.
 
Thanks so much for your replies ladies. Your advice is invaluable and has made me feel much better about my decision. I just talked to her dietician today, who said she is quite interested to see what the scopes will show. Amy did do 6 weeks of Enteral nutrition by NG tube with nothing other than water. 2 years ago. Now she won't even look at the stuff, but Dietician said she will talk to GI doc, as she feels and so do I that her bowels really need a rest. Just trying to think of a really good bribe to make her go for it.lol Have the feeling she would go for something big like a pony.
 
hi poppets mom,

just curious , did the EN help Amy when she tried it ?
Maybe if she noticed a big difference with it, and remembers how good she felt, that will help her be more open to trying it again on a trial basis ?

Best of luck !
 
Crohn's mom, the EN worked really well and I believe, helped us to avoid Prednisone. I would totally recommend it. If anyone ever wants to know our experience with it feel free to ask. I tried to get Amy to remember how good she felt on it, but I think I will have to pick a better moment and try again, as she was having several pains last night and was not in the mood to discuss anything. The dietician has suggested the social worker try having a chat with her. I think she will be earning her money big time on that one. Ha Ha. For right now we are gonna try Gluten free and see how that goes. Your daughter is beautiful by the way.
 
Anyone tried slippery elm powder? It is supposed to help GIT problems. Freddy has had a bad few days and yesterday and today instead of giving him calpol when he was bad I mixed this powder with a little milk, he took it ok and maybe it is just coincidence but it did seem to ease things a little and seemed to give him a burst of energy (a little too much if truth be told!!). He still has bad diarrhoea with bloody mucus so it hasn't made a difference with that (yet) - just wondered if anyone else had tried it and weather they gave it regularly or just when there were problems?
 
My little one is 3years old she has had constipation from a baby when she got to 1& a half it got worse, I was sent home with movicol which didnt help her went back and forth 10+ times they kept giving me movicol for her and then lactoluse and others like it but didnt help. I wasnt happy with the local doctors or paeditrician at the hospital so i move to another hospital they did the same put her on movicol i told them it didnt work but no one would listen. After another year & half of back and forth to hospital she was admitted for a week to try all different medication including enemas which didnt work just caused her a lot of distress this was because the doctor didnt believe me that medication was not working, They realised how bad she was and referred her to the childrens hospital, She was given an x-ray she was so badly blocked up it was above her ribs she was that full of poo so they admitted her in the childrens hospital where she had klean-prep fed through a tube in her nose, That un blocked most of it but not all 4 weeks later she was back for another klean-prep she was put on movicol (Yet again!!) liquid parafin and senna this hasnt helped at her she keeps blocking up finally i have been listend too & she is in for rectal biopys & camera on the 18th july to find out what is going on, They think it may be crohns but i was told it is so hard to detect it could be years for a diognosis. hirschsprung's disease has also been mentioned. I was wondering if anyone else has had problems like this with there children and also if there is anywhere i can get help with nappies she has constant leakage and going through 10+ nappies a day & i really cant afford to be going though this many
 
Sorry to hear of your problems Leah. Although not as bad we are going through something similar with my daughter. It has become quite the experiment to see what I can give her to make her go:voodoo: she takes 17 grams of lax a day every day but I find I very often have to adjust that dose to more's We also tried Enema's but I think she developed a fissure as she screamed when the liquid went in and told me it was really stinging, and yes there has been problems with leakage. I think there may be a product out there that is like a nappy liner, would a few of those help maybe? Sometimes getting a Crohn's diagnosis is very tricky because of its skip pattern. It seems like you can have a ton of the symptoms and still have a negative test. We are being told she will likely have ibs but I really have my doubts. Will have to see what the scopes say. Anyway just wanted to let you know you are not alone and maybe other people will have some suggestions.:cool2:
 

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