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Hello - 19 month old son undiagnosed and I have questions

G

Grahamcakes

Hey there! I just finished reading all of your posts. I believe my 19 month old son has Crohn's. Please I want an update! So many symptoms are the same. Docs are saying he is too young. I don't believe that. Please update.
 
Last edited by a moderator:
Farmwife

Farmwife

Hi Grahamcakes (love the name)
I'm so sorry to hear you think your son has this.
My Grace it five but has suffered since three months old.
She was dx at 3.
Can you tell us some of his symptoms?
Have you been able to do any testing with him?
 
DustyKat

DustyKat

Super Moderator
Hi Grahamcakes and :welcome:

I am so sorry to hear about your little guy. :ghug:

Unfortunately you are right in believing that he is not too young to have IBD. :(

As Farmwife has said, can you please provide with some further details so we are better able to guide and advise you.

Dusty. xxx
 
G

Grahamcakes

Okay, here is his history.

1. Family history throughout having autoimmune disorders, myself included.
2. From the time he was born, he had a hard time staying asleep. By the time he was 3 or 4 months, he would not take afternoon naps and night time bedtime took place around midnight. He just laid there and screamed what sounded like screams of pain. He threw up an hour after feedings and it stunk. He would not do tummy time, and had to be upright all the time. He was on Prilosec until he was 7 months old. Noticed a big difference if a dosage was missed.
3. By the time he was 4 months old he had been on antibiotics twice. The second time I messed up the dosage and gave him almost twice as much prescribed for a week.
4. He was breastfed and started solid food at 6 months. He loved food. Ate everything from roasted sweet potato to steam soft green veggies. Handfuls of broccoli.
5. He had such personality. Laughed. Strangers wanted to hold him.
6. He was in 90% for weight.
7. He had tubes put in his ears at 1 yr old for constant ear infections and fluid not draining from birth. Just after he started to changed. Clingy. Crying a lot. Crying a lot in his sleep. No longer wanted to be held by others or being personal with anyone but me.
8. He started crying when he pooped. He started being constipated. He had black tar poops. He would also have this orange (maybe from sweet potatoes) poop that was mush and smelled horrible, like dead stuff. Then it would be white clay. He would also poop and would bleed. All the ridges of his anus would split and bleed. Then, he started having blood in his poop.
9. He used to eat anything. Then he started crying at meal times. Screaming when he saw foods other than crackers or applesauce.
10. In February or March, he started complaining of pains in his legs. A few weeks later it increased to his arms, along with his legs, then his jaw (normally around knees, elbows, and wrist). Recently, he says the top of his head hurts.
11. A few weeks ago he started complaining something his mouth hurts. Ped. noticed white spots/ ulcers in his mouth. The same time he had his vaccinations. A week later he had an infection at the injection site and required antibiotics.
12. Found out he is allergic to peanuts.
13. Two trips to do blood and stool lab work. Still waiting on some results. Results that have come back are good standing. They did find blood in his stool.
14. He burps and has a lot of gas.
15. I'm assuming passing dried fruit and nuts and greens in his poop is normal.
16. He was at 34 lbs. now he is at 19 lbs. Lost 5 lbs. within the last 6 months.

So I got scared went online and Googled "Vitamin Deficiency in children with mouth sores". I had always heard that it was a vitamin deficiency. It led me to Crohn's disease and Vitamin B12 deficiency. I had mouth ulcers as a child and so does my other child (but not this young). I read all the symptoms, and noticed a lot of similarities with my son. I also read that diagnosing wasn't always helpful. Medications only made it worse. I try to do the natural route. We eat organic or all natural. I hand make most of what we eat. So, Pinterest took me to Kendall Conrad and her daughters story that led me to "Breaking the Vicious Cycle" by Elaine Gottschall. I learned that the medicine prescribed only continued the symptoms. That with Crohn's bacteria in the intestines will feed off what we eat. Starving the bacteria (or virus) out was the answer. Kendall's daughter was 3 yrs old when diagnosed. After strictly following the diet, she is 6 years old now and she is completely restored. She can eat anything and it won't bother her. Although now, after the diet, she likes picking healthy foods. I am currently intrigued by this (and countless others that have said it has changed their life) and got that book today and "Eat Well Feel Well" meals to help manage Crohn's.

So, all of this led me to the Gastroendocrinologist. We went Wednesday. He said he may have had an ulcer with the black tar poops. He prescribed liquid Zantac and Miralax. He wanted him pooping 4-5 times a day. He did a quick finger prick of blood to test for the presence of something to tell if he currently has an ulcer. He didn't.

I feel diagnosing is only confirmation. I am deciding to self diagnose and will try the natural way.

So, do these symptoms sound like anything you are going through? I know many of your children started light in the symptoms and then grew terrible, and others started out bad and only got worse. Please let me know. I am a worried mom.

Thanks ladies!
 
Farmwife

Farmwife

Thanks for sharing that info.
Your little guys sounds a lot like my dear Grace.:hug:

Did the GI mention a scope?
The only issue with self diagnosing is you don't know for sure what it could be.
Take my daughter for instance. I've always felt it was Ibd however after scopes we were shocked when they told us she had eosinophlic gastro intestinal disease EGID's for short. Ibd and egid's are treated differently, so knowing was important. Now after the second scopes it looks like Ibd too.:(

Also we were homeopathic at first. I'm glad we took this path but it didn't work and my dear child was suffering and her quality of life was very poor.
I guess it hit me that this disease is not curable, that's why it's a chronic disease.:(
After the scope Grace went on a full liquid diet to let her gut rest, we wanted to avoid steroids but it didn't work out and she ended up doing a round of steroids and we got our girl back. YA!!! We kept her on the full liquid diet called EEN (I'll link it at the bottom of this post). Then she started ldn, it's a drug with very little side effects but hasn't been openly endorsed by most GI's yet. Yet again that didn't work and my girl was dx with moderate to severe juvenile arthritis, so right then and there we started methotrexate and a few weeks late humira.
Grace is coming back to the girl she should be. She still medically fragile but we hope she'll be in remission soon.

I told you all that because if I've learned anything is keep an open mind to treatments. Yes they have side effects that scare me but the chances of those happening are very slim and for me it comes down to quality of life and doing my best to keeping her intestines from destroying themselves and her needing surgery.

We also have a great diet section in the parents forum and one in the diet and fitness forum. I think diet can be very beneficial and hope to hear good updates about his progress.

Hugs

About EEN

http://www.crohnsforum.com/showthread.php?t=23607

About ldn
http://www.crohnsforum.com/showthread.php?t=31142

Diet Section in the regular forum
http://www.crohnsforum.com/forumdisplay.php?f=17

Diet Section in the parents forum

http://www.crohnsforum.com/forumdisplay.php?f=268

I hope you don't think I'm being critical, I'm not.
Again I'm glad we went the natural route. At least I know we tried to the point of going broke.
Grace is still tube fed and had more food allergies then I care to mention but we as a family do the clean eating diet. We love it and it's super easy and I can tell it helps me.

Hugs, keep us posted.
 
my little penguin

my little penguin

Moderator
Staff member
Going by your post and what happened:
You need to know most childhood crohn's needs to be diagnosised by a pediatric Gi .
This can only be done by a combination of scopes , imaging studies and bloodwork.
You can not self dx even a Gi needs the right combination of tests to be sure.
The right dx can give you the right meds for your kid.
The Internet is full of people /horror stories since most people if things were going well life would be too busy and they wouldn't be here.

Crohn's in children tends to have a severe course so when you have the right med your kiddo is like other kids except they can swallow pills and don't flinch at blood draws.
Keep in mind all Gi dx take a while since many overlap and kids can be complicated.

I only say this because like Farmwife -we thought DS had something else since the symtpoms on paper fit.
They fit so well the Gi was talking treatment plans with us prior to the scope to confirm the disease .
Scope one we thought Eosinophillic esophagitis ( EOE).
It was an upper scope only - not the disease - normal

Year and half later
Gi again thought eosinophilic colitis ( allergic colitis )...
Treatment plans etc ...
Upper and lower scope
Things looked normal but biopsies confirmed crohn's .

Each of these diseases has a different treatment
But DS fit them very well at the time on paper .

You can get a second opinOn
The top three pediatric Gi centers in the us are
Chop
Bch
Cchmc

Give them a call they can do a record review first to see if its worth your time .
 
G

Grahamcakes

(Sorry for the short post. I typed out a long reply only to have the session log out. ARRGG!)

Thank you ladies so much for your wisdom and honesty. I really appreciate it.

Let me further explain. The GI doctor concluded that my son probably had an ulcer. He prescribed liquid Zantac and Miralax to regulate his acid and his poops. He wants to see him in 6 weeks unless blood is still in stool. I don't think this is over. I think that there is more to his symptoms. Crohn's or not, something is wrong. We are still waiting on some lab work to come back. But my motherly instincts feel it has to do with his stomach and intestines. Something is out of balance. Right now all I can do to help is try a Crohn's and digestive disorder diet until further notice.

So, what symptoms did your children start off with? What did the doctor's do? Is there anything you would have done differently?

Thanks!!
 
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