Hi, I am new to this and was hoping for some advice. My son who recently turned 10 years old, has now been unwell for nearly 15 months. It started with a sore ear and stomach ache and was put down to being viral. Things continued to deteriorate with no appetite, constantly in pain, crying frustration, multiple appointments with the GP’s who thought it was constipation. He eventually got admitted to hospital where they diagnosed him with mesenteric adenitis and ascites. We were informed this was viral and things would improve. They didn’t he continued to suffer with chronic stomach ache, chest pain, headaches, mesenteric adenitis, random swollen nodes and feeling poorly. Multiple GP appointments leading no where, hospital appointments with doctors thinking you’re a hypochondriac. He would cry most days/nights with myself and my husband struggling as parents to understand why no one was helping. It was only after asking our GP to refer us private that we were informed the hospital wanted to see him in Gastro. After attending hospital she then thought he was suffering from a severe glandular fever that had left him with IBS/chronic fatigue. He was put on various medications and things improved from extremely awful to awful and he was at least sleeping a little more at night. Things didn’t get any better and his chronic spikes of stomach pain and chest pain were excruciating. Back up to the hospital for further bloods tests confirmed he tested positive for high ANA/ENA/Centromere antibodies along with anti-cardiolipin and beta-2 glycoproteins. Since summer he has had numerous blood tests, MRI, CT scan, lung function test, eye test, x-ray, ultrasounds, colonoscopy/endoscopy with no further answers. He has spontaneous rashes on his feet/lower legs and they seem to think his small blood vessels are involved and although not enough criteria to diagnose him the consultant thinks he has a disease of the lupus family and has started him on Hydroxychloroquine and he had methylprednisolone infusion 2 weeks ago over 3 days which unfortunately did not provide any relief. He has barely managed school in a year. We are desperate to make him feel better, and are struggling to make sense of everything and it feels like a nightmare we can’t wake up from. His main problem is his chronic stomach pain I wondered if anyone had experienced similar problems and had advice to share with me. Thank you xx
Undiagnosed child : Hi, I am new to this and was... - LUPUS UK
Undiagnosed child
Hi merrie11. My 15 year old granddaughter started with severe stomach pain, at first we all thought it was norovirus as her brother had been unwell also. After he got better she didn’t. She collapsed at school, taken to walk in centre and then told to go to hospital. They thought it was lupus but not specialist, she stayed in blacpool vic for 6 days then transferred to manchester childrens hospital, they immediately diagnosed lupus. She has had 2 rituximab infusions, 3 cyclophosphamide infusions, 2 mri scans, 2 lumbar punctures and a kidney biopsy. The lupus affected her brain and all i can describe it was like having a child with dementia, she has been quite violent at times, but obviously with all the meds she didn’t know what she was doing. Thankfully on the day of her 3 rd infusion she had a light bulb moment, she suddenly started talking and remembering things. She was diagnosed at the start of december 2019 so it’s not been that long. She is now on the mend, still tired a lot. Sorry forgot say at the start, she also had red marks under her eyes which we thought was just sunburn, but these marks have been there since she was little., obviously we now know that this was the sign of lupus. Hope you get your son sorted soon, it’s horrible to see a child suffer, especially when you can do nothing to help them .
Hi Forgot2mention, thanks so much for replying. It’s a horrible place to be in when you can’t really get proper answers and help as to what’s going on. I’m sorry to read how poorly your granddaughter has been what a scare you must have all gotten. I hope now they know what is going on with her she gets all the best care to get her well again. I hope we will also have some further clarity this year and just some relief for his pain xx
If you live near manchester, ask your doctor to refer you, they are absolutely brilliant. When i first joined this site i was given some information about a professor graham hughes who is an expert on lupus. If you click on prof graham hughes you will be able to see lots of information on lupus. Thank you for asking after my granddaughter, she was at manchester yesterday, 8 specialists turned up and couldn’t believe the difference in her since january, and yes it has been a very stressful few weeks Fingers crossed for you that you can get your son well again
Sorry your son is so unwell.
"anti-cardiolipin and beta-2 glycoproteins" could indicate Hughes-syndrome/APS/"Sticky blood".
If you post on the Hughes Syndrome Forum you might get more relevant information.
Check out the Lupus UK website as well. It’s all free we are here to help. Best wishes Kevin
Sorry to hear your son is unwell, sending you my best wishes..
Hope you get some answers soon jx
Thank you Butterfly1964. I am keeping positive that things improve soon xx
Thank you for this Kevin53. Xx
Anti centromere antibodies can be an indication of limited cutaneous systemic sclerosis (scleroderma). I have this, and gastric issues are an extremely common symptom and have caused me a lot of pain due to poor mobility. I'm assuming that he is under a rheumatologist? So sorry to hear about him, it's too young for all of this.
Hi MissusTee, thank you for replying. Yes he is under care of a Rheumatologist, and has been since summer. If you don’t mind me asking did they do much tests to find the involvement of the disease in your stomach? As tests have confirmed he definitely doesn’t have IBD, but there is something wrong. Xx
With this type of scleroderma, the guts are very slow and it can cause small intestinal bacterial overgrowth in the small intestine , which is very painful, so he would need a breath test. . Also the sphincter at the bottom of the oesophagus can be lax resulting in acid in the oesophagus, again very painful, so if this was the case he would need an endoscopy. Furthermore the stomach doesn't always empty properly and this is very painful, it's called gastroparesis and this is very difficult to test for, but it's worth looking into this and seeing if the symptoms match. Best of luck!
Although the endoscopy doesn't always pick up reflux, so it might be worth having a trial of anti acid meds to see if they help?
Thanks for all the information you’ve provided me with, anything we can try to help him is worth speaking to his consultant about. He is on anti acid meds at the moment as he is on daily Aspirin. I’ll have a look into everything you have said later on this evening. It is very much appreciated xxx
I’m so sorry to hear this. We can cope with our own lupus / autoimmune issues but when it’s our children, it’s a completely different kettle of fish.
I would say that, depending on where you live, Manchester does have a Centre of Excellence for lupus but Alder Hey is the Paediatric Centre of Excellence for Lupus.
I have attended LUPUS UK Patient Info Day and heard one of their Paediatric Rheumatologists and a researcher speak. The care and knowledge is incredible.
Like I said, I know it depends where in the UK you are, but at this is a young child with such serious issues, a referral to a specialist Centre should not be turned down.
Here’s a link from the LUPUS UK website, for their C of E.
Best wishes. I hope he gets all the care he needs.
Wendy
Hi Wendy39, thanks for all the information you’ve provided to me. We live in Scotland so are quite a distance from both Manchester and Liverpool, but this wouldn’t stop us if that’s where he would get the best care. I know his consultant has been having contact with Alder Hey and that they regularly discuss the children that are more challenging. I think we are just so desperate for answers and unfortunately this is not always possible and it requires a lot of patience and time before a diagnosis . The most difficult part is being unable to help and explain what’s happening to him when we also don’t really know. It is good to know there are specialist centres for children if we find things are not progressing enough where we currently live. Thanks for your help xx
By the way, even here in Wales with a devolved NHS, children with lupus are treated at St Thomas’ in London. Well those from South Wales are. I believe in North Wales they are referred to Alder Hey. It might be worth asking either the GP or Consultant what the arrangements are for children with lupus in Scotland. One thing is for sure, if you don’t ask, you don’t get.
As you have probably realised from posts here, you have to do a lot of reading and researching yourself with this, so you can almost steer the doctors in the right direction. Patients who are well informed have the better outcomes.
I’m sure LUPUS UK would help, if you can’t find any information in particular that you need, on their website.
My best wishes
Wendy
I know this is so hard for you as a mother. It sounds like your son has symptoms and labs that point to autoimmunity but they cannot be sure where on the continuum he fits. This must be confusing for you. It is important to focus on getting the treatment you need rather than forcing a diagnosis. They are treating your son with pretty major medications without a firm diagnosis. They are clearly concerned.
Pediatric rheumatology is a limited specialty. If there isn’t a pediatric center in your area, you may want to try to get a second opinion where there is more pediatric expertise. Scotland has been known to have good medical schools. If you can get to a teaching hospital, you should have good care.
I worked in an academic pediatric center for many years. If my experience is any guide, pediatricians put egos aside and try to get children the best care possible.
Talk openly with your son’s doctors if you want a second opinion.
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