So worried about my son

[Mandrose]

My 28 year year old son had a bad throat & ear infection at the beginning of April. Antiobiotics sorted out the infection but he continued to feel very poorly. After a blood test his GP sent him straight to A&E with a creatinine level of 190 & egfr of 37. He was admitted & given IV fluid for dehydration & referred to the renal clinic.

To cut a long story short his creatinine remains between 180-190, a kidney scan didn't show anything & he is booked in for a biopsy next Wednesday

The most worrying thing is how Ill he has been, since this time.

Exhausted & sleeps a lot

Nausea almost constantly (he has vomited a handful of times, which is always violent)

Headache - this is one of my main worries. It changes all the time, a few weeks ago he had stabbing pains all over his head which would developed into a searing pain which would last for a few mins each time. It's still always in the background but has now become a pain in the back of the neck (mostly on the left side) which creates a bad headache where he needs to lay down in a dark room. He has a problem with bright light, so we spend most of our day with the curtains shut so it's comfortable for him.

Tender scalp & forehed - this can be severe where he can't even bear his head on a pillow.

Loss of appetite - he has always been obese but it is now a struggle for him to eat, although he does force himself at least twice a day & sometimes manages a slice of toast at lunchtime too.

The most recent development is a tremor in his hands, it was just occasional a couple of weeks ago but has now become almost constant.

He does seem to have got slightly better over the last few days but I think that is partly because neither he or I can remember him healthy. Any energy used he goes pale, feels faint, breathless & has to sit down.

We keep being told his creatinine level isn't high enough to give him symptoms, so it's all a frustrating mystery at the moment.

As he is epileptic he has had a brain scan & MRI, both didn't show anything.

As he lives in London I had to bring him home with me mid April, as he's not able to look after himself at the mo. The journey to & from London (approx 2 hours) is almost unmanageable & we've had to stay overnight for the last few times as it makes him so poorly. All blood tests have been negative/normal except for the creatinine, so the consultants are scratching there heads! They did think it was AKI but as the creatinine remains stable they are considering CKD (although a blood test 2 years ago showed normal levels)

Apologies for the long post, I'm not expecting anyone to give me answers but I hope you understand when I say I had to get it off my chest!

Thank you for listening & if anyone does have any suggestions I would be very greatful.

Mandrose

[jaykay777]

I'm sorry you and your son are going through this. Fortunately, you seem to have a good understanding of symptoms and tests. I suggest making notes about these in a notebook or computer, along with questions you may want to ask your son's health care providers. It may help you to refer to the notes and show them to your son's healthcare providers as you seek answers for him.

[Mandrose in reply to jaykay777]

Thank you so much for your reply. I am indeed writing notes & have been since the first clinic but I must admit finding questions to ask is difficult. The consultants just keep,saying his creatinine isn't high enough to give him these symptoms, so the biopsy is needed first. We're trying to keep positive as at least the day is getting closer 🙂

[karools16]

Mandrose, I am not usually on this forum, but like to read some of the posts, occasionally. I am sorry you are going through this difficult time with your son. One sentence stands out for me...the one about his tender scalp and forehead, and not being able to put his head on a pillow. That is how, 12 years ago, my GCA... Giant cell arteritis, started, and needs to be seen to , immediately. I don't wish to alarm you, but untreated GCA CAN lead to blindness if not seen to immediately. A visit to an Opthalmologist and Rheumatologist would put your mind at rest.

[jaykay777 in reply to karools16]

karools16 -- Thank you for telling us about GCA. I have some intermittent symptoms in my scalp, but not the forehead. A previous doctor said my scalp was in spasm. I will check with my ophthalmologist.

[Mandrose in reply to karools16]

Thank you for replying karools. I've already replied to you once but I think I forgot to submit, as I can't seem to find it! Apologies if I'm repeating myself! I had never heard of GCA until last November when I was admitted to hospital with the symptoms. I was very lucky as the tests including a biopsy proved negative, altho I was diagnosed with polymyalgia but treatment is going well. I was told that I was a bit "young" for GCA, so altho Mikes symptoms seemed relevant (even the A&E doctor contemplated it), his age makes it even more unlikely thank goodness. He has had numerous tests as well & nothing is showing up so far. Thank you for the information though, as it could have been something else to investigate x

[Zazzel]

Sounds like a very trying time for you and your son. Im glad you tested for brain tumors with the MRI and ruled that out. I'm guessing you will need a variety of tests to rule out other possible issues. This a a very remote possibility, but depending on how long he has been off the antibiotics, it could be an intolerant reaction to them.

I have multiple food, drug and environmental intolerances as well as allergies, however, the intolerances show up several days later and not immediately like the allergies do. I get most of the symptoms you described to varying degrees and they can last up to a week until the item has cleared from my system. If anything in his environment changed during his time of illness when his immune system was down, there could also be a reaction. For instance, I was living in a house that had mold and all of my intolerances increased. I became very ill and it took a long time to resolve it.

Keep pushing the doctors for testing until you discover what it is. I have been through so many tests in my life with no answers for many years while feeling lousy. Finally at age 46 with the help of some great holistic doctors I have unraveled my health issues and now feel much better.

I hope you find answers soon.

Many blessings to you and your son.

[Mandrose in reply to Zazzel]

Apologies zazzel, it seems I forgot to submit your reply too! He was on Amoxicillin for 5 days & originally they thought he had AKI because of it but seem to have ruled it out now as that was weeks ago & his creatinine is still stable.

The surgeon doing the biopsy called him today & was very nice. He's reassured that the biopsy will give a way forward & hopefully a diagnosis. It's been mentioned the kidney problem could be a secondary & there could be a primary issue causing it. I'll be pushing for as many referrals as necessary to get him well as he is a shadow of the man he was a few months back 🙁

We will get the results on 16/6, so we just need to be patient a little longer x

[rabbit01]

Mandrose, Sorry to hear about you son and I hope that the biopsy helps pin point the problem. I must say that I am convinced that the antibiotics (Amoxicillin 500mg 3 times a day for 5 days) I was prescribed for a chest infection two and a half years ago when I was 48 are the cause of my CKD. I never had any health issues before taking these tablets and now I have only 16% kidney function and like your son I am tired all the time and have nausea (mostly in the mornings) and get breathless and have a poor appetite. I too had a kidney scan and it showed nothing but I did not opt for the biopsy. There is no history of kidney problems in my family and my blood pressure is normal. And like your son all my blood results are perfect apart from urea and creatinine. As I say I am convinced it was the antibiotics. I do hope he starts to get better soon. Stay in touch and let us know how he is doing.

[Mandrose in reply to rabbit01]

Crikey Rabbit01, Your symptoms do sound like my son! Do you also have headaches & bad hand tremors? I must admit he didn't consider not having a biopsy, as he is so desperate to get back to work & normal life. Hopefully it will give the answers & treatment can begin!

[rabbit01 in reply to Mandrose]

No I have not had any headaches or hand tremors so on those points we differ.

[toeragthecat21]

hi ...it must be very worrying..all i can advise is pay to see an all round specialist..where you can get answers...

or just walk into A andE ..and push for action...all the best to you..chris

[Mandrose]

Hi everyone, apologies for not updating you all sooner! We went to London on the Tuesday for Mike to have his blood tests ready for the biopsy the following morning. When we arrived on Wednesday, the surgeon called us in to say he was shocked to find his kidney function has suddenly improved! EGFR that had been stable for 6weeks at 36 was now 60> & his creatinine that ranged from 180-190 was now down to 120. The biopsy didn't go ahead & he is going to see the renal team tomorrow. He is feeling better in himself, although still tired with a headache above his left ear coming & going. His hand tremors are still bad but the surgeon said his body had been in trauma for some time, so weakness etc is to be expected. It now looks like he had AKI, that took a while to stabilise. I couldn't be happier & the scared look has left his eyes 😄 He's hoping the improvements continue quickly, so he go home to London & back to work, which he is missing like crazy! Thank you everyone for being so kind to the hysterical mother I became! X