Desperately need help and info on health problem with Cory-Chron's.

[InsaneCdn]

Janet - As you will remember - or be reminded - from many on this board... this isn't the first time that "something" looked like "something else". We've been there done that too, with other dxes. How many ADHD kids, aren't? (from Autism Spectrum Disorders (ASD) to Auditory Processing Disorders (APD)... lots of options).

You do the best you can with what you have at the time... it is all any of us can do.

But... ya. Really back you with getting faster help for that baby of his... the more you know, the sooner you can act!

 

[gcvmom]

I believe it when you say he looks sick! I remember being at Costco with difficult child 1 on a day he was home sick before we knew what was wrong. He was curled up in the bottom of the cart and you'd have thought he had cancer or something -- dark sunken eyes, pale skin, -- people gave me very worried looks when they saw him, asked me if he was o.k., etc. Only added to my hysteria over the situation and frustration over not being able to get a prompt appointment with a specialist anywhere.

 

[susiestar]

I am so GLAD that he has a diagnosis that was done iwth the proper tests!!! It is a bit early to have a conclusive diagnosis, but the hospital he went to is one of the best. I would get copies of not just the reports of the tests but of the actual results - and this includes getting the MRI an ct scans either on cd or printed out (here the mri can be had on cd for about $2 and on film for $5 per film and the mri of my back would be about $50 but I was to take them to the dr and then the dr told me to just not take them back. This is IMPORTANT because the hospital will get rid of files after a certain number of years. We learned this after some pretty crucial films of my back were destroyed.

UNC Chapel Hill is an awesome hospital and they should have a free medical care clinic that will help Cory. Try to get them to look at his spinal stuff because that is probably also something they could help.

Crohn's is autoimmune and it doesn't always mena you can't eat dairy or wheat. Dairy is hard on the digestive system, but there are some things that might help. Cory will need medications to get it under control, and he may or may not always need them. If he doesn't have medicaid he would probably be eligible for it based on this diagnosis. They don't do those tests same day as the ER visit unless he is pretty sick.

Sweetie, PLEASE don't go on that "I ruined his life" kick again. EVER. You did the VERY BEST you could with the tools you had at the time. You did NOT let him go for years with no medical care. You did NOT ignore his health at ANY time. You took him to the doctors that were available and if they couldn't figure it out? Well, how would it be logical that you should be able to figure it out? How many years of medication school and internship and residency and study did YOU go through? Unless that number is pretty darn high, well, not figuring this out is NOT NOT NOT NOT NOT NOT your fault. This is a FACT. It is NOT up for discussion.There is NO way you EVER medically neglected him. You just didn't.

You are NOT God, you are NOT omniscient, you are NOT a Board Certified Gastroenterologist or Immunologist or Rheumatologist, and you are NOT at fault. In the words of Dolly Parton's character in some movie where she gave radio advice, "Get down off the cross, honey. Somebody needs the wood!" You are a very special, wonderful, loving person, but you just don't have that kind of power. Cause if you DO? Cory would have been diagnosis'd on day 2 of his life. It would have taken until day 2 because labor is hard even for the omniscient all powerful people.

Now they can start to figure out what kinds of diet, medication and other changes will begin to let Cory live a more full life. He is still so very young and he will learn how to manage ths and now he will get a much fuller life than if Tony hadn't taken him to the UNC hospital today.

in my opinion today needs to be a day you celebrate (once the diagnosis is confirmed) because today is the beginning of Cory's being able to learn to manage this stuff and have a more full, interesting and productive life!!!!!

He can also now learn to advocate for himself and for McKenzie so that they BOTH get the help they need. How great that he now has some idea about what is going on AND he can have his child tested so that she is able to manage this at an earlier age.

 

[gcvmom]

And Janet, FWIW, difficult child 1 will likely go off his Crohn's medications once we are certain he's finished growing. He had fallen off the charts at the time of his diagnosis, so we wanted to give him every possible chance to catch up with his height by keeping him on the medication. It's possible that when he goes off it in his 20's that he'll be able to stay off for a while. It's also possible that he'll have a relapse, but we won't know until we try.

 

[DammitJanet]

Well I went over to see him and took him some probiotics and soup, green tea and healthy water to drink while I handed him a 9 page handout showing him what was good and not good for him to eat...lol. He just glared at me...lmao. Then uttered the words...oh no...Daddy told you!

Its funny, Tony called Mandy last night to tell her that Cory had a disease and she said...what kind of a disease? A sexually transmitted disease? LOL

That wouldnt even occur to me...not after being with someone for so long. Me, I would be like...omg, is he dying? We see which one of us loves him more...lol.

 

[TerryJ2]

associating the behavior problems that can be associated with celiac that can mimic bipolar and other mental illnesses

I immediately thought this, too.

I know that the relationship between crohns and wheat/dairy is hypothetical or anecdotal, but if he were my son, I would err on the side of caution. In addition, so many IBS cases are hereditary and also related to milk allergies that, that as well could be hereditary. So if everyone in the family cuts out wheat and milk products, you'll all rest a lot easier.

I have IBS and when I cut out regular milk, and started taking acidophilus b4 ea meal and digestive enzymes after ea meal, I had a 95% improvement. Wish I'd known that 45 yrs ago. Wish my mother and grandmother had known. The reason I use acidophilus--unless I cook the meal from scratch at home--is because despite truth in labeling, there are so many unknown products in foods that it's just not worth it. Best just to make a habit out of it for yourself.

In regard to Cory, it's not going to be any fun to pass those stones--I've heard it's the closest you can come to being in labor. But he will be fine in a few days.
Then you will be able to look at all the test results and talk to the doctors and decide where to go from here.
I have no idea how compliant he will be ... he's much older and hopefully, more mature now, so I will keep my fingers crossed.

It is typical to lose a lot of weight with-Crohns so don't worry about that part. It's startling at first but he'll taper off.

Many hugs.

 

[BusynMember]

Janet...I did not read all the other posts, but my brother has had Crohns since (we figured) about nine years old and I want to assure you it is VERY hard to diagnose. Doctors don't look for it. My brother got a ton of wrong diagnoses and he was sick as a dog. The only reason he even survived to get diagnosed was because he got a full body access at nineteen and was rushed to the University of Chicago HOspital, which had the pioneer of Crohn's Disease on staff and he took my brother's case. 'Crohns is an autoimmune disease, not an allergy of any sort. Also, this is not in any way like IBS (I had that) and does not respond to IBS methods. IBS is not autoimmune...

Understand that even though Ron was diagnosed, he was sick. He is mostly not in remission and has had to take heavy duty drugs all of his life and has had major surgery. I don't think that would have contributed to your son's felonies. My brother is in pain a lot, however he has never broken the law in his life and is a very easygoing person. I really don't think finding out earlier would have changed things that much, so please don't feel bad.

My brother is now 52 and has had to modify his life for his crohns...as in, he used to work a high power job 80 hours a week and the stress kicked up his crohn's so he took an easier teaching job and loves it. He has flare ups from time to time. That's normal. Everyone with Crohn's has a different course. Your son may have a much milder case of it.

But, most of all, I am so concerned that you even mentioned blaming yourself. It is NOT your fault. Not your fault. NOT YOUR FAULT! Get it? I hope your son does well with treatment and keep us posted.

gvc mom--My brother was very slow to grow, gain weight or hit puberty. He looks better now than he did as a child, but he is on some very serious medication.

 

[DammitJanet]

I think I freaked out thinking more of celiac than Chron's when I first head about it and that would have made more of a difference for most of his life. Looking back now in hindsight, I think he probably started this in his late teens to early 20's when he started dropping weight like nobodies business. That is when he started to become almost gaunt looking and his cheeks started looking sunken in, his ribs stick out and his lower back is so bad that he walks with a complete limp. From what I have read, the lower back can be involved along with ankelyzing spondylosis. I just figured all that was due to his surgery and his scoliosis.

I am now doing my best to just start with his family doctor who used to be my family doctor. In fact he is still in the same practice as the one I go to now, I just go to a different satellite office. They will be able to order his records and then send him to our local specialists here in town fast.

I do realize I couldnt have stopped his behavior problems as he got older. My reaction at first was the reaction of if more if he this all his life, and when I thought it was the celiac, if he was treated for that instead of just being thrown on psychiatric drugs from such an early age and treated simply as though he was a behavior problem and sent to all those placements that taught him just more and more bad behaviors, would he have been that much worse as an adult. Almost as if he was a diabetic and treated as a bad child instead of a diabetic and not given insulin instead. What would that outcome have been for a person.

 

[BusynMember]

Celiac disease has nothing to do with Crohns, honest. And it does not in any way affect behavior. The symptoms you listed...son dropping weight and looking gaunt...typical Crohns. And, of course, doctors think of everyhing EXCEPT crohns. I'm glad you have the diagnosis squared away so that your son can start becoming more healthy. Since it hit later than it did with my brother, his outcome should be much better. I certainly wish him a great recovery and fast remission!!!!

 

[susiestar]

I hope he will discuss medications with you and take someone to the dr appts with him, at least at first. It is super easy to get into the appointment and forget your questions or get confused, so having somoene with you is a BIG help. For ANYONE actually, not just Cory.

 

[TerryJ2]

A sexually transmitted disease? LOL

ROFL! Yep, there are diseases, and then, there are diseases.

 

[CrazyinVA]

UGH.. I was caught up with Youngest and grandkids all weekend and am just sitting down to focus here. I'm going to call you later today, Janet.

I haven't read every post here but wanted to say first and foremost: Crohn's affects everyone differently. You can have a mild case, or a severe case. Its symptoms mimic other disesases, and vice versa. It's easy to miss it because of that. It also can go in and out of remission, with "flares" followed by periods of very few symptoms, so it's easy to miss because of that as well. There is absolutely nothing to blame yourself for here. Nothing.

HUGS.

 

[DammitJanet]

Thanks Crazy...I am calming down much more now that I have read up on things. I had really had celiac and chron's mixed up in my mind totally in the beginning though knowing about your daughter didnt make the news any easier. I do know that he will go to the doctor's and will get things taken care off.

Steely...so nice to see you again! Dont worry, Cory doesnt have time to read much these days between taking care of an infant full time and trying to keep a roof over all their heads. Doing construction work is pretty tiring so if he had a chance to sit down and read he would most likely pick up a good mystery.