I thought having your tonsils out would help the sickies....

[Mom2J112903]

I never wear "Mommy clothes" when we go to the doc, unless it is a "scoop and run" of course. I just didn't have anything cool weather apprioate. Either it was summer or winter, nothing in-between. I do now though :D Went to Kohl's and found a nice short-sleeved sweater (black) and a new pair of pants. I have a pair of black wedge sandals that I will wear.

 

J ate french fries-he actually ate the *entire* order of them. My child is strange and has almost always been able to keep the things down. Our previous GI could never figure it out, but hey, it is substance. He did complain of his tummy hurting but this is the first "food" he has actually ate in over 24hrs of any substantial amount.

 

His temp was 99.4-99.6 the entire day, it is up to almost 101 now.

 

He finally put on a top this morning but by evening it was off-he wants *nothing* on his stomach.

 

He is starting to cough more and more but he has not been able to take his Asthma meds for 2 days now.

 

When he found out he was going to the "geologist" :tongue_smilie: as he said "that other words is too long" he told Daddy "drive slowly so you do not hurt my belly".

 

In less than 24hrs we should have a plan of action, so it is off to bed (well curlers in the hair first) and then a busy day tommrow. Thank you all again for your kind words, thoughts and prayers.

[Alyce]

I had similar pains etc for months. No body would listen, they kept telling me it was indigestion or GERD. I saw a GI and he did an endoscopy (the tube they put through your throat to look at stomach). He did a test for H. Pylori and it was negative (I have had that too but the symptoms were different). What he found was that my stomach lining was very inflammed and I also had Irritable Bowel Syndrome. The placed me on Prilosec and Bentyl. The Prilosec was for the irritation and the Bentyl for the IBS. It made a huge difference. Vomiting can make this worse so it may take a little while for meds to work. Once I was being treated I had to start a new med for something else and I began vomiting. Went to ER, pain was so bad they had to give me morphine. Once it calmed down I slowly recovered over the next several days. Severe stomache pain in the area you suggest is usually seen as GERD but a GI will know to check for other things like Irritable Bowel Syndrome which also can cause severe abdominal pain. It does not feel like burning, like you see with GERD. It feels more like someone has grabbed your stomach and is squeezing. It sounds like there is more going on here and my first suspect would be within the GI system.

[Mom2J112903]

I had similar pains etc for months. No body would listen, they kept telling me it was indigestion or GERD. I saw a GI and he did an endoscopy (the tube they put through your throat to look at stomach). He did a test for H. Pylori and it was negative (I have had that too but the symptoms were different). What he found was that my stomach lining was very inflammed and I also had Irritable Bowel Syndrome. The placed me on Prilosec and Bentyl. The Prilosec was for the irritation and the Bentyl for the IBS. It made a huge difference. Vomiting can make this worse so it may take a little while for meds to work. Once I was being treated I had to start a new med for something else and I began vomiting. Went to ER, pain was so bad they had to give me morphine. Once it calmed down I slowly recovered over the next several days. Severe stomache pain in the area you suggest is usually seen as GERD but a GI will know to check for other things like Irritable Bowel Syndrome which also can cause severe abdominal pain. It does not feel like burning, like you see with GERD. It feels more like someone has grabbed your stomach and is squeezing. It sounds like there is more going on here and my first suspect would be within the GI system.

 

J has been on Prilosec since June, when the pains were minimal compared to what he is going thru now. He will not even wear a shirt he says that much pressure is too much on his stomach. This should be fun today getting him dressed.

 

He has had four endoscopes and a colonoscopy, none since 2006 however.

 

Last night he had a very hard time falling asleep and then hardly slept. He was awake a lot in pain. Now he is in the shower, again and I am exhausted beyond belief already.

 

Thank you for your sharing your experince, I wish docs would listen to the pt more.

[Chelle in MO]

What about diverticulitis?

 

I hope you get answers very soon!

 

:grouphug:

[ChristusG]

I hope that you get some answers for your son! I just wanted to add that a bad gallbladder doesn't necessarily have to show up on a scan or MRI. Last summer my dad was in severe stomach pain, throwing up, etc. We took him to the ER, where they ran all sorts of tests. They did an ultrasound of his gallbladder, did an MRI, etc. Nothing showed up with regards to his gallbladder. They were ready to send him home just after he ate, but his stomach began hurting again....severely. It was always after he ate. They went in for the gallbladder anyways and turns out, it was bad. That was over a year ago and he hasn't had stomach pains since.

[FaithManor]

Yes, I too have a friend that had exactly J's symptoms and none of her scans and tests indicated gall bladder. She became so severe that she was in and out of the hospital so much in a four month period - vomitting, dehydration, and unbelievable severe pain, that they finally got desperate and did an exploratory surgery. She had a terribly diseased gall bladder and also lesions growing from her appendix out to other organs though the appendix itself appeared healthy. Her appendix and all of the lesions they could find were removed as well as the gall bladder and just in case there was peritoneal infection that they missed, they also kind of "cleansed around in there" and then a round of powerful antibiotics. She has been in great health since then.

 

Faith

[dansamy]

What about ulcerative colitis? We have a couple patients that we see who were diagnosed in childhood. They come in about every 6 weeks for Remicade infusions to keep UC under control. (They are very bad UC patients. Severe cases.)

[Mom2J112903]

The doc was *awesome*!!! He too couldn't believe that the pedi/NP has been brushing us off.

 

His $ is on auto-immune, most likely Chron's-it would explain *everything*. Constant low grade fevers, hip pains, the severe stomach pains, weight loss, cold sores, fluctuating WBC levels and why J gets SOO much better when he is on steriods.

 

He also drew blood for a Thyroid panel, CBCs, Amylase and Lypase levels.

 

We go back in just under a month for an Upper GI series.

 

Sunday J weighed 52lbs at the ER, today he weighed 48lbs. He is literally wasting away. We are to keep a very close eye on his weight, but as long as everything he puts in his mouth (minus greasy french fries and pizza from Whole Foods) causes such severe pain, the weight loss is an unfortunate side effect.

 

So if anyone has any personal experince with Chrons, please share if you do not mind. Feel free to pm me if you do not want to post.

 

Thank you all again for your kind thoughts and prayers.

[Dobela]

Iam so glad you may finally have a real diagnosis! I just want to encourage you. A family at our church had one of their dd diagnosed with Crohns last year. She was 8. They had been thru many struggles like you. Even after starting medication she still was sick a couple of more times, but once it was straightened out she has been the healthiest member of the family and is just thriving.

[WiseOwlKnits]

We're praying for you guys. I'm so sorry to hear that he's still sick.

[dansamy]

Here's a cool table comparing UC and Crohn's. That might help you.

[gracesteacher]

Did they do a lower GI before? Are they going to be able to compare the two scans?

 

My dd is 4 and she has been under weight since she was two months old. She hasnt had a natural bm since she was four months and has horrible stomach pain so bad that have taken her to the ER more times than I care to count.

They are not finding anything on the scans outside of irratation of the lining of the stomach and Nexium helps with some of the pain. She on a good chubby day weighs 30lbs she is 41inches.

 

Have they checked for EE? They looked for that in my daughter and she does not have that we are still on our journey

[Ottakee]

The doc was *awesome*!!! He too couldn't believe that the pedi/NP has been brushing us off.

 

His $ is on auto-immune, most likely Chron's-it would explain *everything*. .

 

WONDERFUL that you found a doctor to take you seriously and realizes that this child is suffering.

 

you might want to start a new thread about Chron's to get even more responses.