8 y/o son undiagnosed.

[kandy]

Not sure if this is the right place for this. I'm new . My name is Kandys, and my son with the problems is Xavier. He just turned 8 in Dec. It all started when he was a toddler going back and forth from constipation to d. Potty training was awful because he had accidents everyday. He has had all kinds of tests done including a rectal biopsy with no answers. It's gotten better though because it doesn't happen all the time now. He's 4'6 and 90lbs so he's big for his age(not fat just big), and his only other symptom really is stomach pain and nausea. It comes and goes for a few months at a time. Like it flared up from Sept to mid-Dec, was fine from then until a week ago. He's had 3 accidents at school since then. I got a call though on Fri morning from CPS that his school nurse turned me in because she doesn't think I've done enough so I took him to the children's hospital er just to appease them. Even the doctor in the er was at a loss for what to do since we've done everything that I know of. They did an xray, and he was constipated. The doctor said that he probably doesn't get the sensation that he needs to go so that explains the accidents. They put him on Miralax and probiotics AGAIN, and he has a checkup on the 30th with a new ped. I'm just at a loss at what I should do next. Do I ask for another GI since the last one didn't help much? Any advice would be really appreciated. Thanks in advance!

 

[DustyKat]

Hi Kandys and :welcome:

I'm so sorry to hear about your boy. :hug:

Since you still have no answers then I would definitely be seeking further GI opinions. It is just too heartbreaking for a child to be suffering this, particularly when he is having accidents at school.

What tests has he had done in the past?
Has he had scopes done, what blood, imaging and faecal tests has he had done.

Have you seen the school about the nurse? In view of the fact that you have already sought treatment about your son's condition then her actions are way out of line. Whatever happened to discussing it with you first. Grrrrrrrrrr

Dusty. xxx

 

[kandy]

Thank you!

He's had blood and stool samples taken for celiac's and food allergies when he was 3. He tested negative for celiac's and food allergies, but he is limited to 2 dairy a day and has an intolerance to soy. Then again at about 6, and at that time he also had a rectal biopsy. They wouldn't do any more testing than the because that one came in normal. I didn't know anything about any other testing at the time.

I think the nurse's main reason for calling is because I hadn't shared any of that information with her just because I didn't think it was any of her business. She's not exactly the most intelligent person I know, and we've had issues before with my older daughter's seasonal asthma. She had never heard of it before my daughter started there apparently. I think I'm going to write a nice little letter to the school board about her when I'm not so mad about it anymore.

 

[kandy]

I was thinking that there was more they could do. Thankfully I'm going through a different medical group now so hopefully I'll be able to get them to do more.

 

[DustyKat]

Bump.

 

[izzi'smom]

I am sorry for what you are going through...I would also seek a second opinion...I would want a diagnosis just so I could research it and see what can be done. It has been a few years so I would push with his pediatrician to either run tests or send you to someone that will!! Good luck!

 

[imaboveitall]

It could be IBS not IBD.
But definitely investigate further testing. Get to a pedi GI.

 

[Mom2oneboy]

I don't have anymore to add....I agree with the ladies above. Sorry your son is not feeling up to par and I hope you can get some answers soon. Sometimes as mothers we have to be pushy with the doctors and that may mean you have to say, "My son is still not feeling well and we need to move to the next level of testing asap."

Keep us posted!
Shelley

 

[kandy]

A majority of the ped specialists are connected to the same children's hospital here so it's not exactly easy to push them to do anything or to get a second opinion. I had to take my now 3 year old to a hospital in a different city to get him checked out for seizures when he was 2 months old because the neurologist from the one in our city said 2 month old don't have seizures. It would be really nice if I could just get an answer the first time.

 

[Dexky]

Thank goodness he's managed to grow so well, but if he's having d/const. for three months at a time, something is not right. I hope it's not an IBD, but someone needs to give you an answer and a plan. Good luck and welcome Kandys!

 

[Johnnysmom]

My son was on Miralax for years and it can cause accidents. The biggest indicator for us was when he started loosing weight. He has always been very tall too but went from 101lbs at his 8 year to 97lbs at his 9 year check up and 95lbs at his 10 year check up. I let it go too long. Kids should gain weight or at the very least stay the same weight and stay in basically the same percentile range.
Our pediatrician sent us to an endocrinologist to look at growth issues. We were referred very quickly to G.I. once they found protein in his stool. The protein in his stool showed he had inflammation and was not absorbing his food. The stool test was simple, cheap, non-evasive and pointed us in the right direction. Maybe ask your new Ped about one?