Worried about my child

[eloiseb]

Hello (I'm a new user, so apologies if not posting in the right post / on the right topic)
I wondered if anyone can help explain / reassure as I am worried about my 6 year old son. Background:
- While pregnant I was told from tests and scans that the baby would have severe chromosomal abnormalities but we wanted to continue the pregnancy and refused further testing (proved right by how lucky and blessed we have been by our wonderful son and his relative lack of issues )
- My son was born prematurely at 31 weeks after dramatic emergency and was in hospital for a month, mainly due to inability to control blood sugar levels.
- He is also deaf (not completely) and had hypospadias (operated on at 2 years old), and has intermittent lung problems.
- At the time of birth, the hospital thought he only had 1 kidney (4 scans failed to find the other) but eventually found it as ectopic kidney in his pelvis around his groin in the centre. He was on permanent antibiotics for 6 months but still got 2 UTIs (and another last year).
- All has been well for the last 6 years other than as above.
- Recently, he has had crippling pains in his lower abdomen so he has been seen by paediatric urologist.
- He sent him for ultrasound scan (2 weeks ago) but did not order urine or blood tests (which I thought was strange, but the consultant was about to go on holiday). The consultant then went on holiday the next day and won't be back until 11 September, when we are seeing him (welcome to Spanish hospital in August - and no, there are no colleagues covering for him! ).
I collected the report and scan yesterday. The report (addressed to the doctor not me) says that my son's ectopic kidney looks fine (other than location!), but then about the other "good" one it says (translated from Spanish sorry) "poor cortico-medullary differentiation without identifying normal hyperechogenity of the renal sinus to rule out renal dysplasia or (less probable as not observed bilateral effect) metabolic causes".
Can anyone help explain / reassure and do you think it's ok to wait until 11 Sept when doctor will see this report? Sorry for long post, worried mum!

[wagolynn]

I am no expert, but it sounds as though the displaced kidney is working ok, transplanted patients and many others live happily with just one working kidney.
The other kidneys problems, I think, are likely to have been there for some time and therefore waiting will not make the situation any worse.
I am unsure of the arrangements in Spain, could you see a GP and talk over the contents of the report just to reassure you.
Best wishes to you both.

[eloiseb]

Thank you for your reply, I appreciated it. I took your advice and we saw a GP on Friday, who said almost exactly what you said. He also took some blood to do tests for reassurance. He told us that my son is likely to have a MRI scan of the affected kidney and then we will see from there. He did say that ectopic kidneys are more prone to problems, so it will need monitoring if my son is reliant on that one.

So feeling reassured about waiting until Sept 11 and see from there.

[eloiseb]

Just to update, we saw the doctor yesterday, and he did urine and blood tests on my child which showed some issues (I did not quite understand what, but it included anaemia, some blood and urine results not being in normal ranges etc). He is referring us to a "nephrologist" (horrible word, not sure if it's that in English!) and in the meantime my son has to go to the "nuclear medicine" department on Wednesday and have a "gammagrafia renal" (I couldn't find a translation, but basically he said that they will put a contrasting radioactive liquid in and take pictures and measure the kidneys' function.

I know we have to wait for the results of above (5 days after test), and the doctor assured me that other than the needle (and the difficulty of keeping a fidgety 6 year old still for it!), the scan is nothing to worry about. But this is all unfamiliar, I have a bit of a language barrier (I speak Spanish, but get a bit lost with medical talk), and of course he's my baby and I'm worried.

I'm just sharing / seeking reassurance really, because I have no family here and am feeling a bit lost, alone and worried about my child, and not sure what to expect from here.

[MatthewC]

... in the meantime my son has to go to the "nuclear medicine" department on Wednesday and have a "gammagrafia renal" (I couldn't find a translation, but basically he said that they will put a contrasting radioactive liquid in and take pictures and measure the kidneys' function.

That sounds like a DMSA scan (see http://www.patient.co.uk/health/DMSA-Scan). I had one of those in my work-up as a donor. It's nothing to worry about at all - I think it might be the one that gives you funny (=odd but not unpleasant) sensations in your abdomen.

[eloiseb]

Thank you, that does sound like what the doctor was describing, from what I understood. Just have to get the test done, wait for the results and try not to be over-worried mum in the meantime.......

[wagolynn]

Hi there eloiseb,
It looks as though you are beginning to get things sorted out for your son.

Anaemia: healthy kidneys produce a hormone that controls the production of new red blood cells, without this, new red cells are not produced. This can be treated with EPO, (full name Erythropoietin) if this is the cause of the anaemia, there are other causes, like low iron in the diet but your medical team will sort this out.

Nephrologists: a consultant who specialises in kidneys.

The following websites may help you.
http://www.kidney.org.uk/help/

Best wishes for you both.

[Dixie1]

Hi Eloiseb

It sounds like a very worrying time for you. I have always found things being wrong with my children far more difficult to handle and more worrying than things being wrong with myself. I'm afraid that I don't think anything I can say will stop you worrying, however, I will just say knowledge/equipment/treatment etc etc is so advanced nowadays I am sure your son is in good hands. Whatever the problem is, I'm sure they will get him sorted. Try to put things to the back of your mind between appointments (easier said than done, I know) and deal with things one step at a time. Wishing you the best of luck.

[eloiseb]

Thank you very much for the kind replies, I appreciate them. Yes, I am definitely more worried because it is my child than if it were me - if I could swap I would He is fine though, other than very tired, so hopefully all will be ok, and I just need to carry on as normal until test results... just so much easier said than done

[eloiseb]

Got back from the nuclear medicine department and I have the report for my son after his DMSA scan, but we don't see a doctor for another week or two to discuss it (I'm trying to get an appointment) so I'm back on here, sorry for wibbling on, but I don't know where else to turn. I don't understand most of it- I used google translate (original in Spanish) but now I can't find any sense of what the English means. I know I need to wait to discuss with the doctor and I got parts of it, but these are the relevant bits with google translate if anyone can help with what this might mean, and whether it sounds worrying or not:

Right kidney normal position and normal size but has "areas of lower captation on the calyceal zone" (this was the kidney that the ultrasound scan said had "poor cortico-medullary differentiation).

Left kidney - "appears to be ptotic"... located in pelvis near bladder and of small size... with a "significant area of hipocaptation on the upper pole probably of parenchymal pathology" and "may be interference from bladder activity" (actually, in context, I think the last part is just saying that because his kidney is in front of his bladder, it made the scan harder to interpret).

Meanwhile, I just keep reminding myself that he seems fine, just very tired, but that may be the anaemia.

[Dixie1]

Hi eloiseb

I'm afraid it doesn't mean anything to me! Sorry not to be of any help but good luck when you do see the doctors next. Glad your son seems okay, other than the tiredness.