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New awaiting test results

Hi all, my 13 yr old son had an upper and lower GI and now we are waiting for the results of the biopsy's. The only thing that showed up during the test was that he had ulcers in his stomach?

This year it started with a stomach virus? We thought that it might be Celiac's because he is allergic to Wheat and Gluten but the blood test came back neg. Then went to a sinus infection and then to the flu (did test positive for flu B) which we all had. His ped ran tons of blood test and the only thing that has come back abnormal has been his thyroid levels that the Endo said was either do to illness induced or steroid induced (steroid were used along with antibiotics to try and get rid of the sinus infection)? She did find that his Vitamin D level was low 24 (normal is 30 to 74) and put him on Rx Vitamin D. After he finally go over all of that and the joint pain never went away after the flu the ped started thinking that he might have Crohn's. Since he has had a rash on his face, abdominal pain, bloody stool, low grade fever and the joint pain. When we met with the gastro his first thought was Crohn's too.

He doesn't ever get sick until school starts and then he winds up with whatever is going around. Is this normal with Crohn's?

The biopsy results should be back either tomorrow or Thursday and the waiting is killing me. He feels so bad and at this point there isn't much that I can do.

Thanks ~ BsMom
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum. I am sorry that your son is so poorly at the moment. Not sure about picking things up easily... if this only happens when he is at school I would say that is the nature of being in an enviroment where germs are rampant? The other symptoms you have mentioned though can definetly occur with crohns or perhaps even ulcerative colitis. Have the results come through today? When will you next be seeing the doc to discuss things? I think it would be benficial for you to also check into our parents forum as there is lots of advice and support available from people in the same position as you are with worrying about your child. I really hope things can get sorted for him soon, please let us know how things go.
 
Angrybird thanks,

I called the doctors office this morning and the results are in but I am still waiting on a call from the doctor. The waiting and unknowing is driving me crazy, I just want my baby to get to feeling better.
 

Angrybird

Moderator
Location
Hertfordshire
Oh of course you do, I cannot imagine how hard this must be for you as well being the parent. Did they say whether you would get a call back today or tomorrow? Perhaps start just chasing this again in the morning, they need to realise this is important and as the results are in why should you have to keep waiting.
 
When I called the second time today around a hour ago, I told his assistant the he was stil not feeling good and I needed to know what I could give him or what to do. She said that she would send him a msg to call me and was supprised that he hadn't called already? Maybe it will be soon now, I sure hope so.
 
I'm in Dallas so it is 1:53 cst. Not sure how late he works or makes calls but I left my cell # so if I was picking up my older child I would not miss the call. All of this waiting and him being sick has left my tummy in a mess too. I have done the waiting game on my health and waiting on your own answers is much easier than waiting on ones for your child :-(
 

Angrybird

Moderator
Location
Hertfordshire
Perhaps give it an another couple of hours and then perhaps call again. It is definetly easier to wait to hear about your own results compared to that of a loved one.
 
Just got off of the phone with the doctor. Good new he does not have Crohn's or the other IBD or Celiacs. He since everything else looked fine except for the ulcers he thinks that it is IBS. And the ulcers are from excess acid in his stomach. He wants us to continue with the acid reducer two times a day and the Tylenol and Advil until Monday. Then call him on Monday to let him know how he is feeling. There are other medications for the ulcers and IBS but he wants to try this first.
 

Angrybird

Moderator
Location
Hertfordshire
That is great news :hug: I really hope things get sorted on the current treatment plan. Out of interest how long as your son been taking the Tylenol and Advil? Did the doc say what can be done to stop this acid from coming back in the future or will he talk to you about this next week? Please let us know how things progress with this.
 
Angrybird :) Tanks for your support. I'm glad that we got some of it sorted out and thar it is not Crohn's like he thought it was. The Tylenol and Advil has only been since this Monday. The Tylenol for his temp and then the Advil for the joint pain. Alternating each every three hours along with acid reducer to protect his stomach and stop the acid. The IBS & ulcers explains part of the symptoms just not the joint pain and his temp??? Anyway,he wants me to call Monday morning to let him know how my son is doing before we add or change anything else. It also doesn't explain the vitamin D levels being in the tank and his PTSH came back normal.
 

David

Co-Founder
Location
Naples, Florida
Greetings and welcome. Various questions:

1. You said your son was on Advil since Monday. Did the GI tell you to give that to him? Or someone else? And what day was the endoscopy and colonoscopy? AND are you giving him Tylenol and Advil at the same time?

2. While people with IBD are at increased risk of vitamin D deficiency, it's actually an epidemic among the general population. It's also potentially why your son gets sick a lot. You mentioned the ped gave him an RX for vitamin D. What is the IU (dosage) and was it D2 or D3?

3. During the colonoscopy, was the GI able to access the terminal ileum? Have any tests been conducted to check other areas of the small intestine?

4. Where does the GI think the bleeding is coming from?

5. What does the GI think is the source of the fever?

Sorry for all the questions as I know this is a tough time, but I personally wouldn't accept an IBS diagnosis quite yet. Bleeding, fever, weight loss, and persistent severe pain are not symptoms of IBS.
 
Location
NY
Hi BsMom, I hope you son gets relief soon! Has your son had ESR & CRP blood tests done to measure inflammatory markers? Or IBD antibody testing like Prometheus IBD? Since my son has been sick (3 years now and undiagnosed) he does very easily pick up every illness that he comes in contact with. When he tried to attend a few classes in school each Sept, he would consistently get sick every couple of weeks and his chronic symptoms just get way worse then (and stay worse for long time). We try to avoid sick people ... even common colds!
Good luck!
 
David, Hi. The GI had me alternate the Advil and Tylenol three hours in between each dose (not together). The endoscopy and colonoscopy was done this Monday morning.

The vitamin D is (without looking) D3 and it is 10,000 IU weekly for six weeks from our Endocrinologist. This was his first time with the Endo when his thyroid levels dropped during ? Sinus infection ? that is when we found the low D levels. The Endo checked him for all of the thyroid problems under the sun since I had thyroid cancer and thyroid problems run on my husbands side of the family and makes your child more susceptible to Hashi's. All of his Endo stuff came back fine aside from D.

As for the bleeding and the terminal ileum. At first he thought that it was from Crohn's but, all of the tests and pictures came back normal. They did get to the terminal ileum and he said that it looked fine. The bleeding could be from the ulcers but, I am starting to think that it was from my son taking Naperlan for the joint pain he did not have any bleeding before that and has not had any since he stopped taking it?

At this point the GI is not sure about the source of the fever since all of the tests came back normal. I am going to call the Pedi today and see what she thinks about all of this by now she should have the results of the endoscopy and colonoscopy.

After all of that do you have any ideas? They have tested him for just about everything and only the vitamin D has come back low. Whatever this is and knowing he has tummy issues both upper and lower, I am going to get him to follow a GI diet and avoid wheat and gluten.
 
dannysmom ~ LOL you sound like us, I keep telling my son that I am going to find him a plastic bubble to put him in. As for the tests, they did an ANA and something else to check for inflammation which came back negative. It has been this way for us for about three years too. It all started after he got Shingles and then after that his immune system has been shot.
 
I haven't read all your replies yet but advil (non steroidal anti inflammatorys) can cause all those symptoms and stomach ulcers if it doesnt agree with your son. They are a great medicine but must be used with caution.
 
I haven't read all your replies yet but advil (non steroidal anti inflammatorys) can cause all those symptoms and stomach ulcers if it doesnt agree with your son. They are a great medicine but must be used with caution.
chelseajohn ~ I wonder then if some or all of this started/aggravated when he was given Naprelan? They put him on the Naprelan because of the joint pain then when he had the bloody stool we took him off of it and have not had another bloody stool since??? The GI told me to only give him the Advil while his joints are still hurting along with Omeprazole twice a day.
 
Location
NY
NSAIDs can defintely cause GI problems. The first few months Danny was ill, I gave him Aleve for joint pain, feverish symptoms, and headaches. I haven't used it since ... and am not sure if it helped contribute to his GI problems or not.

I am sorry your son has had symptoms for about 3 years too! Fatigue is Danny's worse symptom .. and the constant abdominal pain is only about a 5-6 on a pain scale (although shooting way up w/ bowel movements). He was never bad enough for us to take him to the ER, but is just not good enough to live normally. The GI said that he sometimes sees teenage boys with symptoms like Danny, and they are a mystery, but several times the boys simply got better after a few years and went on with a normal life. That is his hope for Danny - while he does support us trying to figure things out and treat him along the way.
 
Location
NY
dannysmom ~ LOL you sound like us, I keep telling my son that I am going to find him a plastic bubble to put him in. As for the tests, they did an ANA and something else to check for inflammation which came back negative. It has been this way for us for about three years too. It all started after he got Shingles and then after that his immune system has been shot.
Are they sure that the shingles is in remission or does your son continue to take the antiviral meds? Herpes-family viruses are nasty! My older son and I have a lot of trouble keeping Herpes Simplex I in remission and need to take acyclovir often. (spread thought our mouths, nose, face & even my son's cranial nerves) Whenever it starts to flare, I am totally exhausted ... I am soooo thankful for acyclovir!
 
Are they sure that the shingles is in remission or does your son continue to take the antiviral meds? Herpes-family viruses are nasty! My older son and I have a lot of trouble keeping Herpes Simplex I in remission and need to take acyclovir often. (spread thought our mouths, nose, face & even my son's cranial nerves) Whenever it starts to flare, I am totally exhausted ... I am soooo thankful for acyclovir!
At this point I am not sure about anything. The shingles were three years ago and seemed to go away but who knows... I will ask the Pedi and the GI see what they think.
 
NSAIDs can defintely cause GI problems. The first few months Danny was ill, I gave him Aleve for joint pain, feverish symptoms, and headaches. I haven't used it since ... and am not sure if it helped contribute to his GI problems or not.

I am sorry your son has had symptoms for about 3 years too! Fatigue is Danny's worse symptom .. and the constant abdominal pain is only about a 5-6 on a pain scale (although shooting way up w/ bowel movements). He was never bad enough for us to take him to the ER, but is just not good enough to live normally. The GI said that he sometimes sees teenage boys with symptoms like Danny, and they are a mystery, but several times the boys simply got better after a few years and went on with a normal life. That is his hope for Danny - while he does support us trying to figure things out and treat him along the way.
:hug: Same here with the fatigue and abdominal pain. I told him that if I could waive a magic wand, stick a band-aid or take all of his symptoms myself that I would. I just keep telling him that we will get this figured out and get him to feeling better.
 

DustyKat

Super Moderator
Hi BsMom, :bigwave:

You have already been given great info so I can't really add to it. I would like to send you loads of luck and wishes and hope that you get solid answers for your boy very soon.

Pop by this thread in the parent's forum and see if you can relate to anything there...

http://www.crohnsforum.com/showthread.php?t=18372

Welcome aboard!

Dusty. xxx
 
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