I feel like the plague! So unsure . . .

[AndiGirl]

I have written in this forum a while back regarding my son, Alex. Things improved for a while, and now he's back to have bouts of diarrhea. We are going to go through allergy testing, and probably more stool and blood samples. The doctor is scheduling a gastoenterologist appointment for him. For the parents of young children with Crohn's; do any of these symptoms sound familiar? I have CD, but I didn't develop it until I was a young adult. Little kids with symptoms baffle me. Here are Alex's symptoms: diarrhea (usually after a meal); his poo often smells like vinegar or wine; bloated belly (he is not fat, but his belly is almost always bloated); hunger pangs (he's always hungry).

I recently took Beth to the doctor because I noticed that she has a skin tag near her anus. I was so upset. Anyone with CD or is familiar with the disease, knows that that can be symptom of the disease. I started out breast feeding Beth, and had to quit after three weeks. I thought she was a colicky baby. She screamed a cried a lot after her first week. I noticed that she started drawing her legs up and her stools were hard and pellet like. There was an episode in which there was a little blood in her stool. I was practically in tears at her doctor's appointment. I knew Alex might be suspect, but my baby girl too! They diagnosed her with a milk protein allergy. I had to quit breast feeding her. Being a Crohnie, I'm already limited in what I can eat. If I wanted to continue to breast feed her, I'd need to cut out all forms of dairy. Not wise, as I go off and on Prednisone. She was on Nutramigin Formula. That stuff was expensive and smelled very bad. It seemed to do the trick. After weaning her from the bottle, we re-introduced her to milk. She seems to be handling it okay.

Here's the update. They took a couple of tubes of Beth's blood. The doctor took a picture of her strange skin rash to send to the pediatric GI doctor. The doctor said the skin tag is okay for now. I haven't heard back regarding the blood test, which leads me to believe they sent it to the Prometheus Lab. I'm disappointed that her pediatrician didn't explain things to me. I feel that I am still out in the dark. I'm worried for both my kids. My mother has two (possibly three) children with Crohn's Disease. We were adults when we were diagnosed. I didn't think the disease was so hereditary. I know I don't have a choice, but I don't want it plaguing my kids. Alex is adopted, so this whole situation is even weirder. Alex was adopted from my mother's side of the family. Alex's biological mother is full-blooded Alaska Native. They are some of the healthiest people. His biological father is my cousin. There are no known cases of Crohn's on my mother's side of the family. There are several on my father's side. I know this is lame and whiny sounding but, "Why me?" Sometimes this disease causes me question my quality of life. I sure hope my kids don't have it, but things are quite fishy. To make matters worse, I don't want my kids' pediatrician to think that I'm over zealous regarding the disease, or am trying to give my kids the disorder. Why can't digestion be normal in my house?

 

[Crohn's Mom]

OH Andi you're not lame and whiney ...you're a MOM ! We worry! That's what we do hun.

Has Alex been tested for the milk protein allergy? Or is that just what was assumed from symptoms when you were breastfeeding him?
How long have his symptoms been going on again ?
I remember reading about his problems before...not specifically though.

You mentioned a little blood in Beth's stool once? Was it after the issue of the hard pellet like stools? I was thinking maybe the constipation/straining caused it? Was it a one time issue ? Austin was born with milk protein allergy and his stools were terrible and had a very distinct smell as well; except his was a "blood" smell. I always knew when there would be blood in the diaper before I opened it by the smell. It's weird the things we can pick up on with our babies Scared me crazy, but he was treated with prednisone and changed to a special formula as well and healed up fine. He did have 2 colonoscopies though which confirmed allergic colitis and tears throughout his intestines.

I'm sorry for all the questions and no advice :shifty-t:
hang in there momma! and breath! we're here for you

hugs
~T~

 

[LOSTnut]

Oh my goodness, girl ... I hope everything with the kids will come out fine and you can stop worrying about that particular part ...

Hope you will get some clarifying answers soon! :hug:

 

[Ktomakin]

Hello,

I hope all the tests go well and you get some answers soon! And like T said we are mommy's and you don't sound whiny or lame, we have to worry for our kids, sometimes they are so young they have no idea what's going on.
My 4 year old son was diagnosed with Crohn's Oct 2010 (we don't have Crohn's or any other gasterological diseases in our family) and has a skin tag on his anus, that gets very inflamed when he is having a flare up, but has decreased now since he is in remission, but the Dr's are not worried about it at all. He does have the same stinky poop, hunger pangs, and bloated belly, he also gets all sorts of weird rashes. We were actually just told to take him to a dermatologist and and allergist. As for the hard pebble poops with a small amount of blood, I have seen this a several times (used to work in child care and have changed thousands of poopy diapers) not sure if it is something to worry about if it was a one time thing and could have been just hard for her to get those pebbles out. But if it is happening often, there could be something wrong? I hope this helps a little, and hope your little ones feel better soon
Kacie

 

[AndiGirl]

Thanks for all the support and kind words. Scott and I adopted Alex when he was about a day and a half old. His biological mother breast fed him her colostrum. I guess they call that, "Liquid Gold," because it is so good for the baby. He was never breast fed after that. He was formula fed with regular formula. He didn't appear to have any troubles with milk until he was about 13 month old. He was diagnosed as lactose intolerant.

Beth on the other hand was breast fed for about three weeks. She was weaned to regular formula and things had progressively gotten worse. She screamed a lot, getting her to sleep was terrible. She had the hard pellet like poo and some blood. I think it was because of the straining. At one month, she was diagnosed with a milk protein allergy and was switched to Nutramagin formula. She was also diagnosed with GER (gastro-esophageal reflux). Oh great! That makes two of us with reflux problems. We had her sleeping in a bassinet at first, but found that with her reflux she slept better with her head elevated a little. Sometimes she'd sleep in her bouncy chair. Scott and I bought her a snuggle nest. Those are wonderful! It's a soft little box-like bed for the baby. You can place it in between daddy and mommy. We have a king sized bed, so it worked out just fine. It has a cushion with a small incline (that helped with the reflux); a safety strap; and music and womb like sounds. After the change of formula and bedding, she became a different baby. She was calm and sweet. Sadly, she is having strange skin rashes, and has the skin tag by her anus.

We have appointments on the horizon, so hopefully we'll get answers, or even a clean bill of health.

 

[DustyKat]

Oh Andi, my heart goes out to you hun...:hug:

As you know, my kids weren't young when they developed Crohns so I can't help with that...

I hear you on the questions though mate. They are the same ones I asked myself and still do! You are doing the right thing in pursuing this hun. You need to know one way or the other and no doctor worth a pinch a salt would question your concerns or motives. I don't want your kids to have Crohns either but if you have a gut feeling run with it, it is far worse to hide your head in the sand.

Thinking of you Andi and sending you and your little 'un's all the love and luck in the world... :hug::hug::hug:

Much love, :Karl:
Dusty. xxxxxxxx

 

[AndiGirl]

Thanks Dusty! If anyone understands, it would be a parent with a child that has CD. You are a strong mom to be able to handle two. Your two are blessed to have such a loving and proactive mom. Hats off to all parents of Crohnies. Even though I was diagnosed as an adult, I know my mother had a very hard time watching and hearing about my suffering. Sometimes I think the younger patients take things better than some of us older ones.

 

[Dexky]

Sometimes I think the younger patients take things better than some of us older ones.

I guarantee you that is true!! Kids don't care what the docs call it, they have the expectation that the parents and the docs will fix the problem. Their minds don't tend to interfere with their recovery the way ours do! We could all learn from kids when it comes to our medical needs. On the other hand, that same truth also means if your child hurts a lot, something is probably wrong! I hope it isn't serious Andi but don't let anyone tell you you are over-reacting. You aren't!

 

[golanv]

AndiGirl,
You are not whiny...here's a great place to get it all out! I wish I had sought support when my son was diagnosed. The last research I have read doesn't really have a handle on the hereditary portion. The propensity for the disease seems to be inheredited but what are the triggers?? I hope your babies soon find relief.
My son had multiple rashes as an infant and it was always considered some type of allergy. He was always hungry and had an enormous appetite. The dr just thought he had a high metabolic rate. One doctor thought he had worms. of course, I never thought about Crohn's then. Part of it is getting a good team of doctors who communicate with each other. Also, never hold back on asking questions. Write questions down as you think about them and have them ready for the appt. Write down eating and other habits and maybe you will see a pattern. I know this is time consuming so it may be easier to record them.
Good luck and I will be thinking of you.

 

[AndiGirl]

Thanks again everyone! We are waiting for Alex's GI appointment. His appetite is out of control, and he's not an overweight child. Scott and I are watching his proportions as he doesn't seem to know when to stop. He'd eat as long as we let him. His pooh is dreadful smelling. Changing is blowouts is not an easy thing. Even though, I am a Crohnie and can relate to the urgency and volume for that matter; I often still want to gag. His bloated belly was a big tip off to my mother (who was an RN) that he has some sort of digestive problem. I am still looking out for triggers as we wait for his appointment.

 

[DustyKat]

Oh the poor wee love...still thinking about you and your little 'uns Andi...:hug:

Do you know when the appointment is?

Much love, :Karl:
Dusty. xxxxxxxx

 

[AndiGirl]

The pediatrician says we should be able to get in, in early August. Thanks again, Dusty. Hugs to you.:hug:

 

[DustyKat]

Keep us posted hun!

Dusty. :wub:

 

[Dexky]

Andi, I know your main concerns are for Alex now, but was anything revealed by Beth's bloods?

 

[Crohn's Mom]

I'm glad he's able to get in to an appointment quickly. Now you momma need to remember to breath and relax until then! (easier said than done I know )
We're here for you !

big hugs,
~T~

 

[AndiGirl]

Beth has an upcoming appointment, so hopefully I'll get a complete run-down of her tests. She is getting more of the strange rashes. Ugh! One day at a time.

 

[DustyKat]

:hang: Mum! You are doing a fab job mate and are a wonderful advocate for your little 'uns...:hug:

Much love, :Karl:
Dusty. xxxxxxxx

 

[madasins mommy]

HI! your sons belly bloating, his pooh and out of control eating sounds like my daughter! i wish you the best with him and even if the drs say hes to young dont stop fighting

 

[AndiGirl]

Thank you Kelley! I am still learning to deal with my fears when it comes to my children. As a Crohnie, I feel that I have come to terms with the idea that my digestion will never be quite normal and I may need to go under the knife. To me, having to possibly face this with a child is very scary and unsettling.

Did your daughter's pooh stink like vinegar? I find that disturbing because to me poop should smell gross like pooh, and not like a food item.

 

[lookame]

Hey Andie's I was reading through your orginal post and read what sounded to be a lot like Zach. He was born and I breastfed he held everything down and was a very calm baby until he turned exactly a month old. One the very day he turned one month he started pooping blood. His stool was soft and sort of runny like diarreah the first diaper had spots of blood then streaks and so on. They ran a test determined it was blood and sent me to the emergency room. After many x-rays they came back and said it's milk protein and he went on allementum and that made him vomet uncontrollably. He still gained weight fine so his doc just said put some rice cereal in his bottles and he still vometted. He didn't calm down until he started table foods and even now he vomets. I didn;t know I had crohns brewing in me at the time or else I would have pressed for more tests. I'm unsatisfied that I keep getting the brush off. Sometimes Zach will go weeks of vometting and if I call his doc I get "we don't treat vometting".

I know it's frustraiting but keep your head up. It could just be a fluke but as we crohnies know...when something isn;t right...it's not right lol. Keeping you and your youngins in my thoughts and prayers