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any hope? #283699 11/04/19 01:03 PM
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momchrisgr Offline OP
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hello everyone.
i need some help...i have a son, 10 years old. Last April, he went up from his bed in the morning having a great pain ih his left heel. We were not very worried since this had also happened back in 2016, when he was 6 years old. It had lasted 3 months and then it went away by its own, doing nothing. The Orthopediatric had told us Sever' s desease.
Now, the left heel does not stop, it pains so much. Last July, I noticed that he had three pitted nails. Last August one nail was destructed.
He was on naprosine for six weeks (during august) it did not help. The MRI showed apophysitis in the left heel.
crp normal, ANA positive, (but then tested again after two months ANA negative)
Last month, he went to school and he complained that when he runs (he never runs because of the heel ) and stops suddenly he feels pain in the neck. The reumatology recommented a new MRI in spine and neck. We had the MRI and the orthopediatric told us that it seemed ok. It was ok...but... After 20 lines of normal things, there was the following "Presence of small amound of liquid in pyelo". The orhopediatric says that reumatologist should see it.
Today, i also took more test results: positive blood in the stool result and high calprotectin (310)
Tomorrow I have an appointment with the reumatologist.
Forget to say that ten ten days ago, after a party, he also felt pain in the left knee. enthesitis or osgood-schlatter desease...
God help us, sorry for my english...i am shivering....
He asked me today if he can take more often naprosine... he wants to play basketball....

worse than cancer?... maybe....
we are greeks....

Re: any hope? [Re: momchrisgr] #283715 11/07/19 01:58 AM
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WhiteCell Offline
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1) Blood in stool stop Naprosyn immediately. Let his MD know.

2) Pediatric Rheumatologist (Where are you located?)

As scary as this can be, you will want to be the one who is strong for him. Montior your stress levels and use breathing to control your fear and anxiety. Good breath in exhale for 10 seconds. You will notice the difference.

A lot of this depends upon your location, your insurance and your access to a major pediatric center.

This forum can help you.

Last edited by WhiteCell; 11/07/19 03:51 AM.

Diagnosed AS 2001.
Started Remicade 2002 - 5mg/kg every 7 weeks.
Right Eye Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Cardiac Stent to RCA 9/2020

ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
Re: any hope? [Re: momchrisgr] #283716 11/07/19 05:21 AM
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momchrisgr Offline OP
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I am so sorry for what i said.... so so sorry!!
cancer is worse and i am ok with spondylitis..(why not me???) i am trying to erase my previous message, but i cannot, it is too late. I am so so sorry.
We went to reymatologist last Tuesday. He asked me to repeat calprotectin test, it is high. If it remains, I go to gastroenterologist, it is probably Crohn s disease...Otherwise, if calprotectin levels slow down, we start sulfasalasine for spondylitis.
But, he cought a flu after the hospital and now we don t take the blood test (to test calprotectin), we wait.
MRI for spine ann neck was found ok.
Thanks for your answer.

yesterday, he was in great mood, he was walking from bed to kitchen and back and you could hear "CRACKS" from his joints. He had burst into laughter with his sister...
athens...

Re: any hope? [Re: momchrisgr] #283717 11/07/19 12:45 PM
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WhiteCell Offline
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Remicade was created for Crohns Disease. I will help us if you are able to respond to my own and other questions which may come to you.


Diagnosed AS 2001.
Started Remicade 2002 - 5mg/kg every 7 weeks.
Right Eye Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Cardiac Stent to RCA 9/2020

ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
Re: any hope? [Re: momchrisgr] #283749 11/12/19 12:40 PM
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momchrisgr Offline OP
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He is HLB27 negative.

But what difference does it make..? I cannot understand, why all doctors ask to do the test of HLB27, completely useless...
So many people who are HLB27 negative have the disease...


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