My 17 month old son has Crohn's...

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Bumpkins

Bumpkins

Joined
May 17, 2011
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Hi everyone... I came here to learn more about Crohn's and try to find some answers. My son was diagnosed with Crohn's at 14 months old. He started displaying Crohn's symptoms when I weaned him from breastfeeding at 11 months old.

Now today he is 17 months old and weighs 20.8 pounds. He was born at a healthy 8.10 pounds at birth and today is below the 3rd percentile for weight because of his battle with Crohn's. He has been on 5 ml of Prednisone since 4/28/2011, well over 2 weeks. The Prednisone is not working and he is having side effects from the medication. He is having frequent poops still and not eating hardly at all. He is not sleeping well at night due to the steroids. About a week and a half ago I found a blister on his hip. The blister got huge within a day and turned into a big sore. It went away with antifungal cream. Could a blister be due to the Crohn's?

The only other medications he has been on was Pentasa for a very short time because it made him even more sick. And he takes Zantac daily.

My sons symptoms are distended belly at times. His belly button used to be an innie and now it is an outie because of the bloat. He is very thin and has a poor appetite. He cries often for no reason but I think it's due to stomach pains. He has gas often and frequent bowl movements. He also has white or cream colored poop often. He also projectile vomits without warning or sound whatever is in his stomach and intestines sometimes.

He is being seen by a pediatric GI dr. that diagnosed him because he was referred as faliure to thrive at first.

He has had tons of allergy testing and he has no allergies. He had an endo and colonoscopy. He also had a small bowl study where he drank barium and they x-rayed it going down. They tested him for celiac disease twice. I got a call today from the Dr. office. They said his Prednisone should have started working within 48 hours to releive symptoms. It has now been 19 days on Prednisone. It isn't even good for anyone to be on it that long at a high dose and it has long term side effects. He did not sleep at all last night tossing and turning crying and crying. He is usually the happiest little guy but these past couple weeks he has been crying off and on all day.

Does anyone have any insight or thoughts on my son?? I am very concerned and scared...
 
Hi Bumpkins :)

I just want to say welcome to the forum and glad you're here.
I'm so sorry to hear your son is diagnosed so young. It must be heartbreaking for you.

I have a question for you regarding the projectile vomiting. Does he drink milk or soy or both? My son had an allergy to both when he was a baby and he projectile vomited daily. He was also on prednisone for quite some time as well, so I'm not sure if that is a side affect of the meds with babys ?
I know the prednisone also made my son extremely irritable and he hardly slept at all.

I wish you the best of luck and I'm sure there will be others that come through that may be able to help you much more than I. There are some really kind and loving people on this forum and they have been wonderful to me!
:rosette1:Hang in there mom!
~Tracy~
 
Gosh Bumpkins.....he's so little! Here's my two cents to your sPecific questions.

I wouldn't give up on the prednisone without talking to the doc. My daughter was very I'll at dx and in the hospital getting 40 mg per day via IV and it still took a couple of weeks to see improvement. So if he's taking it orally, it's hard to know how much he's absorbing. Does that make sense?

I would try to get to the doc about the "blister" just to be sure.

As far as the random projectile vomiting. That is a hallmark for us with Claire when she's flaring but I know that's not the case with evey kid. Are you all using Prevacid or anything to protect his stomach while he's onthe steroids. (Sorry - I'm responding on my phone and can't see the original post).

I think Tracy had good suggestions about asking about the formula too.

I know I've probably not helped a bit! But don't let up on the Doc's ofc until you feel things are moving in the right direction. No one knows your baby as well as you do! Please keep us posted.

Hugs,
 
I'm glad you found this forum. My son had projectile vomiting from age 2-3 years daily. He didn't sleep for the first year and had colic and food intolerances!!
I would keep talking to your Doc, there are many options. Brandon was on Prevacid from about 12 months of age and this seemed to help a little.
Keep us posted on how he does.
Trina
 
I appreciate everyone's responses I don't know anyone with a child that has Crohn's so it nice to get insight from others that do.

Ethan was allergy tested a couple of times and milk or lactose was never an issue. I had him on soy and lactose free for about a month and it didn't make a difference :( Once he started with the Zantac the projectile vomiting has been few and far between. His main problem is not sleeping, stomach pains, gas, and frequent loose stools. He has been on Prednisone for 19 days now. I am trying to be patient with the medication but the Dr. doesn't think it's working either. He said we should have seen some improvement within the first couple days. I also worry about all the side effects now and long term.

You know what is crazy is that I breastfed Ethan until he was 11 months old. After I weaned him is when his symptoms started and it took many tests and many months for him to be diagnosed.
 
Wow Ashley, it's so tough to watch any child suffer but when they're that young, I just can't imagine. I don't have any words of wisdom, I just want to welcome you. I wish you didn't need to be here but I hope you find as much comfort and good advice from the membership here as I have. Hang in there Mom!!
 
Hi Ashley,
I wanted to welcome you too. I know this must be so hard for you with your baby so young. Prednisone made my son feel worse too so we began to taper off after 14 days. We do not have an official dx of Crohn's though. Were your allergy tests done on skin or from blood? I know the blood tests are controversial (too many supposedly false positives). My son showed he was extremely allergic to milk (all milks) on a blood test, but even after taking dairy from his diet completely, he did not feel any better. I hope your baby gets some help real soon!
 
Hi Ashley and :welcome:

I'm so sorry you had to find your way here hun...:( and with your precious baby so young as well.

Unfortunately I can't offer much advice as my children were so much older when diagnosed. You have found a fab place here though for love, laughter, support and knowledge.

When do you see the GI again? If the doc doesn't think the Pred is working then I would be pushing for answers now. I know I'm not telling you anything by saying crying all night isn't normal for your little guy, something has changed and it needs to be sorted.

Good luck and keep us posted on how you and your baby are travelling.

Lots and love and luck, :hug:
Dusty. xxx
 
Thanks everyone! It is so nice to get input.

They actually tested my son for some of his allergies went they took biopsies from his endo and colonoscopy. I know they for sure tested milk from the biopsy and blood. The dr. is more confindent of the results of the biopsy than blood tests.

We will be getting all the results back at the end of the week. I hate waiting... Ethan will see the Dr. the beginning of next week. I love Ethan's GI Dr. he is very caring and he didn't give up on Ethan until he was diagnosed and until he was 100% sure of what he had. Heck I can actually call the office after hours and he will give me a house call back.

We had another rough night. This poor baby cannot sleep well because of his stomach and prednisone. I think that because of Ethan's age (17 months) and weight (20 pounds 8 ounces) they are more limited on what they can give him for meds...
 
I am the sort that wants to not use steroids for my kids, and if so, to use them for a minimum. For the reasons you described. However, our little Isaac, who turns 3 in about a week is around his 100th day of prednisolone (a few days, plus two rounds a few months apart, and the 100 days includes tapering--right now we are tapering off his last round). In our case though, the steroids seems to have a good effect, even if it's not right away. We're hoping this is the last time because we don't want to do it again. Also, in our case--where it is UC and not Crohn's, Isaac is generally healthy.

I'm glad you found the forum and hope that we get an effective treatment soon for your little one.
 
It's been a week and most of Ethan's test results are not back. They wouldn't tell me the results of the ones that were back. So now we wait until Monday. I hate having Ethan on Prednisone for so long and they take their sweet time before they do anything new with him. Ethan had a horrible Crohn's day yesterday. He was pooping most of the day and had a low grade fever :(. I wish this Dr. would hurry up!
 
Ashley, we visited friends last night who have a17 month old daughter. I could not imagine that sweet little girl having a Crohns flair!! Hurry up docs indeed!!
 
Oh man Ashley, I am wishing the days away with you and pushing for Monday to be here ASAP!

Good luck for Monday hun and in he meantime I so hope Ethan is having a better day today. If the doc look likes he is still dragging his feet come Monday put the thumb screws on him! If all the results still aren't back tell them they are Ethan's results, thank you very much, and I have right to know what they are and stop P***ing me around! :eek2:

Much love, :Karl:
Dusty. xxxxxxxx
 
Yeah it is horrible that this Dr. is dragging his feet so much... My son is suffering from Crohn's and they take their sweet time and it makes me mad. So far he had an awful weekend. He isn't even acting like himself lately. He is like a little zombie. We went to the zoo and children's museum in Madison, WI today and a Lion was right in front of him (there was glass beween them LOL) and he just sat there didn't even do a thing... Nothing excited him or anything he just sat there. He has little bags under his eyes, his pants are falling off of him, he has bruises everywhere (prednisone side effect), he's not eating well, and he has the poops all the time. I just ticks me off that they are in no hurry to do anything for him. I am going to raise hell with them on Monday for sure. Also should he be seeing a dietician or anything?? Along with his GI Dr.???
 
I got the test results finally after arguing with them and telling them I am going to take him to Madison, WI to get a second opinion. They told me the stool tests were negative and the blood work is normal. So okay then why is my child still sick?? They act like I am making it up... I am so tired of fighting with Dr.'s and my son being sick... Ethan's symptoms are as follows...

Ethan's symptoms started shortly after I weaned him from breastfeeding at about 11 months old.

white or cream colored poop unless something he eats turns it a different color ( if he eats chocolate his poop is brown , if he eats something blue his poop is green, if he eats red sauce his poop is orange etc.

Stool has pieces of whole food in it at times

frequent loose and diarrhea stools 6-10 times a day

Crabby and cries because of stomach pains at night

He vomited every day for about a month every night (everything out of his stomach and intestines until he started Zantac) When he would vomit it would be projectile and he wouldn't make a sound no gagging etc...

Belly distention sometimes

Has a lot of gas

Umbilical hernia that came about same time as the other symptoms

Bruises easily

Ethan sweats excessively when he sleeps.

Isn't gaining weight or growing properly

Not eating well only nibbles at food here and there

Not sleeping well (prednisone side effect)

has bags under his eyes and seems like a zombie he doesn't act like he usually does

Now we drive two and a half hours away for a second opinion and see what they think. My thoughts are what if he was misdiagnosed what if they are mistreating him??
 
As hard as it is Ashley try to focus on the second opinion and getting answers, that's the most important thing right now so put all your energies into that. There will be plenty of time to deal with what has gone on in the past once you have a diagnosis and plan of action. As to the normal results, unfortunately that is not uncommon, I know the frustration that brings because I went through the same thing my daughter...:hug:

It is so hard watching your little one struggle and go through this so continue to fight, yell, scream and tell anyone and everyone that this is NOT normal and you want something done about it now. If need be get a third, fourth and fifth opinion if that is what it takes.

Are you keeping a diary of his symptoms? If not take a look at the one in the forum wiki...

http://www.crohnsforum.com/wiki/Diary-Inclusions

Good luck with the next appointment hun and keep us posted, remember, you are not alone and we will continue to be with you every step of the way.

Much love, :Karl:
Dusty. xxxxxxxx
 
Thank you for the encouragement... I do keep track of his symptoms. I even kept a poop diary for about a month. I'm really starting to think that he may have been misdiagnosed with Crohn's. I got Ethan an appointment at the children's hospital in Madison, WI for this Friday!! THANK GOD!! The lovely nurse that I talked to today took matters into her own hands and made sure the on call GI Dr. reviewed Ethan's records and case I had sent in today. So far the nurse is thinking he has been misdiagnosed and being mistreated... But of course she can't say for sure until the Dr. see's him. Praying they figure out my little man... I guess sometimes you have to listen to your motherly instincts and take matters into your own hands... I have come to realize that you are truly your child's best advocate :)
 
Excellent news about the appointment Ashley! Good luck for Friday hun and I hope you get the answers you need...:hug:

:goodluck::goodluck::goodluck:

Let us know how you go when you get the chance.

Lots a love, :Karl:
Dusty. xxxxxxxx
 
Hi Ashley,

Normal test results remind me of how I got diagnosed with Crohn's. I had diarrhoea, blood in stool and stomach cramps, but my blood and biopsies were ok. It took me a while to come to terms with the fact the docs did not have a clue what was causing my symptoms. Personally, I think I got my Crohn's as a result of an infection, probably viral, but who knows.

I hope they do some more tests, especially for live function and the biliary tract as I don't think they are working properly.

Hugs,
 
Good luck on Friday! I am glad you were able to get an appointment so soon. Would you mind sharing the results of the endo and colonoscopy and imaging that your son had? I hpoe you get some answers and treatment soon!!
 
Thanks for all the LUCK! We need it :)

ARI: I don't think my son's liver is working correctly either... They did do some type of blood test for the liver panel but it all came back normal... I don't know anyone with white or cream colored poop. My son's GI Dr. said that white or cream colored poop is normal!! I said since when!? Thanking God I am getting him a second opinion...

I think there is something up with Ethan's liver for sure... His skin color is very pale and a weird color sometimes too. He sweats like crazy when he sleeps and pee's a lot. He poops 6-10 times a day and poop only has color if something he eats dyes it. He has so many symptoms but some of it seems like liver issues...

DANNYSMOM: When my son had the upper an lower GI scope he was 14 months old. The GI Dr. seen inflammation in his esophagus, stomach, and small intestines. They took a ton of biopsies and all results came back normal with no inflammation or cancer cells. I was very confused and so was the Dr. So we went and had a small bowl test where he drank a ton of barium and they took x-rays of him digesting it. He digested the barium very very slowly (which was unusual) But they didn't see anything significant at that time they said all was normal. Then when the GI Dr. reviewed everything more closely he saw nodules in my sons small intestines.
 
The Dr. was very thorough and went over all of Ethan's records and test results. He said Ethan has had the "million dollar work up". The Dr. is running a Elastace Fecal stool sample test (which Ethan had the poo readily available for that of course). The Elastrace test is to see what level of elactrase is in his stool and assessing pancreatic function. He is being weaned off the prednisone because the Dr. said obviously it's not doing anything good for him. We have to keep a week long food/ poop diary for Ethan. He is not allowed to have any dairy and has to drink EleCare which is like Alimentum formula for children over age 1 in place of milk. Dr. said this will help them rule out a milk allergy and we will go from there. Also no juice (which we rarely give him). We did do this once already taking milk out of his diet and replacing it with soy milk. But this is more strict and has absolutely not even a trace of lactose. We have a follow up appointment June 15th with the Dr. before he goes to Iceland. So it is going to be tough this week because everything has dairy and Ethan loves milk... Ethan is not minding the Elecare so we will see...
 
I was diagnosed recently with Crohn's. They had me on the liquid steroid while I was in the hospital and I did much better, but when they switched me to oral steroids, I got worse. It's like I took a couple steps back. I am still on the pill prednisone and I wake up frequently throughout the night to go to the bathroom and I don't sleep as much as I used to pre-prednisone.

My mother and sister have Celiacs Disease and we think I may have it, too. But nothing showed up when I got tested for it, but I don't eat it because of my mom and sister not eating it. The more you eat it, the more you show chances of seeing an allergy to it. Which I don't eat gluten so the tests turned out negative for me.

I hope this helped and I hope your son starts to feel better!
 
Hope it all goes well for Ethan til the follow-up Ashley!! I know you want answers more than anything!! I hope you get them! Good luck!!
 
Thanks for the update Ashley!

Good luck with the diet hun, I will be thinking about you guys. I hope this doc can provide you with the answers you seek! Sending loads of healing (((hugs))) and (((thoughts))) your way...

:hug::hug::hug::hug::hug::hug::hug::hug:

Much love, :Karl:
Dusty. xxxxxxxx
 
My son, 16 yrs, was very recently diagnosed with Crohn's (posted his background on the My Story thread), but he's on a treatment that is apparently quite common in Europe and is considered a more 'innovative' treatment in Canada (apparently rarely offered in the US???). He is not on any 'drugs' but is on a 6-week nutritional liquid diet. Apparently the results are comparable (or close) to steroid therapy but without the side-effects (other than life style). He inserts an NG tube nightly, feeds for 10 hours - during the day he is allowed only clear fluids.

As my son was only diagnosed 3 weeks ago, I have very little experience or background to share and I do not know of anyone else who has had this treatment. So far, he has had no further symptoms, has gained approx 7 pounds, has been back at school, back to playing hockey, football, etc.

It's been difficult to 'not eat' - he's taken to watching the Food Network channel (not sure why he's torturing himself!! LOL) but, he has handled it relatively well.

The formula he takes nightly is called Tolorex and is made by Nestle.

Perhaps something to ask your doctor about... And I would love to hear from anyone else who has heard of this.
 
Ethan's diet of no dairy is going okay. His poops have decreased a bit but he won't drink the formula called Elecare they want him to have. He is drinking almond milk instead. Tomorrow we go back to the specialist to see what they think. He threw up last night and has been having frequent stools yesterday and today :( So I think no dairy helped a bit but not enough...
 
Oh Ashley, I'm so sorry to hear that Ethan is still having problems...:(. Good luck with appointment tomorrow hun, keep us posted!

Hi Tesscorm!

If you go to the Diet and Exercise forum you will find loads about the elemental diet. Stacks of people here have been on it at one time or other, I think the majority have it as oral though, drinking about 6-8 supplements like Ensure Plus a day. I wonder why they chose to do it via NG? Does he have oral or oesophageal issues?

Dusty. xxx
 
UPDATE: We had a follow up appointment with the second opinion Dr. at the Children's hospital. The Dr. agreed the no milk and dairy didn't do a bit of difference with his poops and vomiting. He had 2 solid poops and the rest diarrhea with 3 weeks no dairy or milk. The Dr. said we wait and see what happens in a month and then re-evaluate. Right now he says Ethan has toddlers diarrhea. I was pissed! Ethan has now lost a couple ounces he went from 20 pounds and 14 ounces 3 weeks ago now to 20 pounds and 12 ounces. Weighed on the same scale at second opinion Dr.'s On his other Dr.'s scale Ethan would weigh 20 pounds and 6 ounces. He has been weighed on that scale since birth so I go by that one. Either way he has lost weight. Having 4-6 on average diarrhea diapers a day and puking 1-2 times a week in the evening. He is below the 2nd percentile now :( The second opinion Dr. pretty much ignored the 1st Dr.'s findings on Crohn's. He said kids and babies don't get Crohn's which is BS. So since the milk thing didn't work and this Dr. is a D Bag. I will be talking to his pediatrician and his 1st GI Dr. So DR #1 performed all the tests and findings pointed to Crohn's but Prednisone did not work and he was on it for a month. Dr. #2 Toddler's Diarrhea and just wait it out approach for a month while my kids is losing weight and puking and shitting all the time.... I am so beyond frustrated....Kids with toddlers diarrhea symptoms... Toddler's diarrhea If your child has multiple loose bowel movements per day, perhaps containing undigested foods or mucus and foul-smelling stool, he may have what doctors call toddler's diarrhea. There's no discernible cause, except perhaps the addition of new foods or other change in diet. Your toddler will continue to gain weight and grow normally, soon outgrowing this condition. Ethan is severely under weight puking and having 4-6 on average loose stools a day. And vomiting. I don't know what to do....
 
Oh Ashley ... this sure does stink! I am so sorry and feel for you. Your poor little baby sound so similar to my son (although Danny does gain weight somehow) - I have not figured anything out to make my son feel better either. Did you get the fecal elastase test back yet? My son's was normal (466) but he is starting a few week trial of pancreatic enzymes anyway.
 
The fecal elastase test was in normal range they said... Ethan has to go to his pediatrician on friday for shots and I will ask her what she thinks too. Then back to his 1st GI dr. on Monday because he thinks the second opinion Dr. is full of crap. Ethan doesn't even drink juice. That is what cause toddler's diarreah most of the time and kids with it are normal weight and thrive... etc. I know that's not what it going on with Ethan.
I will update when I talk to the pedi friday... How is your sons trial of pancreatic enzymes going?
 
Just was reading through your post and i am so sorry you have to go through this with him:( we live in Europe and my daughter gets treated here in Germany, we were able to get her diagnosed within a week by the german doctors so that was great, but i know the struggles one has to go through with the doctors to get the answer you are looking for and a good treatment plan going. I am sorry i cannot be of much help as my daughter was 14 when diagnosed, but from the symptoms i see it very well could be crohn's or something different. One thing i might suggest is seeing if they can give him the prednisone through an IV outlet, then if the intestine isnt absorbing it right(the same case with my daughter) it will be absorbed by the body, she got much better as soon as she stopped taking it orally as it wasnt doing anything, then when her intestine was healed a bit, they put her back on oral and its working for her:) so maybe its something you can try;) best of luck and stayy strooong!!
 
You are right! I never thought of that. If he isn't absorbing nutrients maybe the whole month of prednisone wasn't being absorbed by his body. I will mention this to the dr. that diagnosed him with Crohns. We are going back to seeing him since the other Dr. has no clue what he is doing. Thank YOU!
 
no problem;) glad i could help, and just incase the doctor suggests a bigger dose of pred since its through an IV that's normal, because its just passing through the body, i know its definitely not going to be this high but my daughter had to get 1,000 mg of prednisone for three days through her body they call it pulse treatment here in germany;) but again good luck and i hope your little one feels better
 
Good luck today Ashley! From the sound of it, I'd say you are doing exactly the right thing!! Trust your gut and see the doc you trust!
 
Yeah it just freaks me out because i feel as though Dr.'s are letting Ethan waste away. He weighed 8 pounds 10 ounces at birth and at 18 months now weighs 20 pounds 12 ounces on one scale and 20 pounds 6 ounces on another. I worry about the long term effects on Ethan being a year old on steroids and not gaining weight. He isn't as tall as he should be either. He was 22 inches at birth and now 32.5 inches tall. I just want him to live a normal healthy life...
 
I really hope they find a soulution for him soon, you sound like a fantastic mother and i am sure you won't rest until something is done about this:) 3rd and 4th opinions are also good if you don't trust the doc you are seeing now. god knows how many doctors i had to go through to find the right one, stay strong and please keep us updated. best of luck to you both
 
I hear ya Ashley! :hug:

Sarah was much older then Ethan when diagnosed but I also watched her fading away before my eyes. It is just awful as you sit and wait for answers and all the while you feel so helpless and heartbroken.

Good luck hun with your appointment today and on Monday. I so hope you get some solid answers soon and your little guy gets relief and you too Mum!

:hang:

Dusty. xxx
 
Maybe Ethan's story being on the news will make a Dr. open his eyes and offer to help and have some other ideas. So glad the news station contacted us to do a story about Ethan and Crohn's awareness...
 
wow that's great Bumpkins, i hope the perfect doctor for you will be watching and give you a call with a soulution to your son, keep us updated and gooood luuck!
 
Hi Ashley,

I hope you find some answers SOON! I'm sure you'll get some feedback and, hopefully, some useful contacts from the news story! There's a service called Best Doctors which is sort of a 'second opinion'-type service. Their website is bestdoctors.com. The description on their site is below. I have never used them but had them suggested to me if I was considering getting a second opinion... From what I've read, I believe for the most part, they review all your tests, results, diagnosis, etc. to date and determine their own diagnosis (they may request addtional testing). Has anyone has ever heard of them or used their services?


Your information is forwarded to a team of specialists who are affiliated with the renowned Harvard Medical School in Boston. Through exhaustive research, this team will help make sure that no stone is left unturned, to help ensure that your diagnosis is correct and that the recommended treatment is the best.

Based on those findings, a detailed report is sent back to you and your doctor. Your Member Advocate will call to explain the diagnosis, recommended treatment and what your options are.


Good luck!!!!!
 
Tesscorm said:
Hi Ashley,

I hope you find some answers SOON! I'm sure you'll get some feedback and, hopefully, some useful contacts from the news story! There's a service called Best Doctors which is sort of a 'second opinion'-type service. Their website is bestdoctors.com. The description on their site is below. I have never used them but had them suggested to me if I was considering getting a second opinion... From what I've read, I believe for the most part, they review all your tests, results, diagnosis, etc. to date and determine their own diagnosis (they may request addtional testing). Has anyone has ever heard of them or used their services?


Your information is forwarded to a team of specialists who are affiliated with the renowned Harvard Medical School in Boston. Through exhaustive research, this team will help make sure that no stone is left unturned, to help ensure that your diagnosis is correct and that the recommended treatment is the best.

Based on those findings, a detailed report is sent back to you and your doctor. Your Member Advocate will call to explain the diagnosis, recommended treatment and what your options are.


Good luck!!!!!
Click to expand...

I will look into this... Great info!! Thank you Thank you!!!!
 
dannysmom said:
The enzymes did not seem to have any effect. Danny took them for 2 weeks.

How's Ethan doing?
Click to expand...

Ethan is going to start a medication that is used for dumpling syndrome soon. They think that his stomach may be emptying way too fast. Because we all know with Crohn's can come other issues. He is too young to do the actual test to diagnose a dumping syndrome. He would have to eat a hot dog and lay there for an hour while they watch him digest it. But he is 19 months so thats impossible. Also thinking about trying a light antibiotic to see if it will help some...
 
Poor Ethan

Well he is older now of course, I was wondering how he was doing and if they had found a diagnosis so far. I have a son that is eighteen months old and currently undiagnosed, however he had a lot of the same problems as your Ethan except the vomiting. They have been looking at a diagnosis of hirschsprungs for him which is rare at his age but is being considered because of the results from the Barium enema xray. Have you ever looked into this, I think you should. Logan has diarrhea or loose stools up to six times a day, bloating, weight loss. He was born at 10lbs 10 oz and at 18 months is now only 25.6 lbs, he has weighed that since he was 12 months. There is definitely malabsorption going on which is consistent with crohns and why I am here. I hope things are better for you and I look forward to a response from you
 
Lost and confused....

Ethan is now almost 28 months old. He weighs 24 pounds and 4 ounces. He recently seen his 3rd opinion GI Dr. Who said everything is normal... biopsies, tests, etc. Except he has a zig zag abnormality in his duodenum (like a kinked hose) that could have been causing vomiting.

I don't know if I posted this or not in the thread. But last November he seen genetics and he has a complete duplication. It is called 16p13.11. I have the same duplication but am unaffected because my extra copy doesn't work. But our oldest daughter who looks like Ethan's twin also has the same duplication and she is having some issues related to it.

He recently had his tonsils and adenoids removed because of his horrible sleep apnea. It made him stop snoring. But the apnea is not 100 % gone.

He just got out of the hospital last Friday after spending a couple of days in the hospital with RSV and pneumonia.

Overall, he is still having diarrhea up to 10 X a times a day. He hasn't vomited in over a month now. XXing my fingers that with him growing and being a bit older that the stomach abnormality stretched enough to stop the vomiting. He is still very underweight but is growing. We have him on probiotics once a day that we put into a cup of whole milk and carnation instant breakfast.

We have tried so many things to get him to gain...The new GI Dr. says he doesn't believe Ethan has Crohn's. But he may have a motility issue where he is digesting things way to fast. So they are going to start him on Imodium 2 x a day to see if it will slow him down. They cannot do a test for this because he is too young. If it slows him down it will tell them that was the problem.

The new GI dr. is really pushing for Ethan to have an MRI of his brain. He thinks that may help him in diagnosing which is scary. So we will do that on April 30th.

So I am left unsure on what to do. 1st Dr. says Crohn's Disease for sure! 2nd Dr. says Toddler's diarrhea even though he wasn't drinking juice, and 3rd Dr. says he has no clue yet.

Hope I didn't overwhelm you guys with INFO. but I am so lost and confused...
 
So sorry

I am so sorry things are so tough for you and I know it hurts to see him suffer, but you will get through this, :( Although I have to say it is disheartening and I am saying many prayers for you. Logan goes in on the 20th and has to be put under to do a biopsy, it's scary and I will be on the same track as you if they don't find anything so I am praying. I am praying for you and Ethan as well. Again I am so sorry, Are you seeing top specialists if not I would look into that as well. Logan is being seen at Pitt Memorial one of the top hospitals in North Carolina and I thinks this helps me a little with the fact that he is being seen at a teaching hospital and I am more confident with the answers I get, however the not knowing feeling is still there at any rate. So Sorry again!!!
 
I am so sorry that your little boy and you are going through this :( Maybe they will be able to get some good answers and get him to feeling better. I really feel for you, I cannot imagine my little girl having Crohn's or so many problems so young.

lots of big hugs and warm thoughts to you.
 
He was seen at the top 2 children's hospitals in the state of Wisconsin. In the future he will either go to UNC in North Carolina. Or to the Children's Hospital in Cincinnati Ohio. I talked to his ped the other day at his follow up appointment from being hospitalized. I asked her which of the 3 GI Dr.'s do we believe??? She said that now that he is getting older we should start to find some answers. She said that when they are so young it's hard to diagnose things sometimes. I am just not happy with that answer...
 
Thanks for the update Bumpkins. :hug:

Oh my, I hope you are able get some solid answers soon for your boy, bless him. :ghug:

If you don't mind me asking hun, what does the duplication cause and why are they doing an MRI of his brain?

Good luck!

Dusty. xxx
 
Duplication info. and speech delay...

Duplication 16p13.11 Behavior problems (ADHD, Autism, ADD), Heart problems, Kidney problems, GI issues. This is what I found out through a mom who has 2 kids with the duplication. When our geneticist in WI told us he had the duplication. They told us... he has this but we don't know anything about it. We were the first to be put into the data base in WI to have the duplication. There are about 11 cases at UNC Children's Hospital North Carolina, so that's where I got all my medical information through the mother of 2.

The MRI is something thing that he has never had done. The Dr. said because the duplication and his speech delay etc. He wants to make sure nothing is being missed there.

I forgot to add to the update that Birth to 3 evaluated Ethan in January at 25 months old and his speech/expressive language was at a 17 month old level. But his receptive language (what he understands) was at a 3 year old level. No apraxia either so that's good. He has improved drastically he is getting close to his appropriate age for speech.
 
Hope you closer to answers. Has he been checked for UTI. My middle also did not grow normally. She double her birth weight at 13 months. But I sure you would have had low grade infection ruled out by now. Only asked as my daughter was only dx after she hospitalise with a kidney infection at two and half.
 
Ethan has had every test they could possibly do with him. Besides a CT scan and and MRI. So we shall see if the MRI of his brain will help out or not. I appreciate everyone's input. You never know when the Dr. 's could miss something so simple...
 
Hey Ashley, I'm just curious how they manage a toddler in an MRI machine?? Strap them down? Put them to sleep?

Good luck!
 
They will have to actually lightly sedate him because theres no way he would hold still otherwise. We need all the luck we can get. I'm kinda nervous because they have never looked at his brain...
 

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