AIBU for wanting doctors to take my worries more seriously

[Desmondo2016]

Brief history.

DS diagnosed with Alopecia Areata aged 10. Blood work all clear apart from low iron stores, but just within 'normal' limits. DS also has halo moles all over torso and neck. DS also lost all his toenails and fingernails. Dermatology referral, nothing worrying found, assumed to be stress related (No known stress factors in life). Had about 50% hair loss over next few months. Hair grew back over the next year and for 2 years or so was nearly normal, just a very small patch of hairloss.

Hair loss began again age 13. Eyebrows and most eyelashes too now, complete Hair loss on head this time. Fingernails not too bad, toe nails look awful and fungussy. General health is ok/normal. Bloods run again, nothing out of the ordinary other than still has low but within normal iron stores.

Other things to mention. Thyroid issues on paternal side. MS in paternal grandfather.
Additionally, DS was an anti Kell antibodies baby and had 4 transfusions in the womb and 2 after birth.

My own GP thinks I need to just accept the alopecia is 'one of those random things' but AIBU for feeling there may be something else going on. I know other kids suffer far worse health issues but this is really worrying me. Happy to be told I'm being over anxious but all the associated symptoms I have mentioned just make me feel the doctors should be taking it more seriously from a health, not a Hair loss, point of view.

Are there any doctors on here who have any thoughts, or posters with experience?

I'm so sorry to read this. No advice from a hair loss side of things but i do have a lot of health issues and I didn't give up I saw 7 different doctors and moaned until someone listened now things are getting done and yes things have been found. One time I was in hospital I was crying hiding under my sheet I didn't realise my consultant was watching me. Eventually he tapped me and we had a chat next thing I'm in a side room things are getting done quicker more things are getting done. I chatted to the nurse that evening she said.
"The wheel that squeaks the loudest gets oiled first" I'm rambling but my point being.
Ask another doctor. Keep asking until you're heard.

I agree - the NHS is a nightmare at times for just brushing things under the rug so you have to keep fighting and I would get angry too - consider complaining about the lack of meaningful action and don't stop until you get some answers. The fact is that what is happening to your DS is NOT normal and to say 'Oh his x levels are within normal ranges' and fob you off isn't bloody good enough! If one thing isn't the problem, then find out what IS the problem. No 10 or 13-year-old kid should be losing his hair FGS and if he is then something is going on. Start making a big fuss OP until you get to the bottom of this.

Can you afford to book a private consultation? Might be worth it for peace of mind.

There is no good treatment for alopecia. I'm not really sure what you're after? It has been diagnosed by a dermatologist as alopecia. Nothing works well to make it grow back quicker. 50:50 it will be back in a year.
Sometimes it is just one of those things. Obviously if there is anything else concerning you eg he is not growing or developing as he should then go back to the doctor.

I know you have discounted the stress but actually school years can be very stressful for children and I would look again at this.

(Doctor)

I haven't discounted the stress at all! I merely said there were no known stressers (other than of course, life itself)

I guess what I most want is someone with enough knowledge to consider the links between the facts, in particular his start to life with the antibody/transfusion issues. But unfortunately I guess this is a little too rare for any connections to have been made between Kell babies and issues later in life.

It sounds as though there's something going on and they're not joining the dots. Could you afford a private consultation?

Whilst I completely understand you are worried but alopecia is something that happens and it's not linked to anything more sinister. The dr is right that it can be one of those things.

As a parent it's our job to look out for our kids, and you are entitled to request a second opinion but if a dermatologist has run all the checks eg bloods and nothing else is untoward what do you want them to do?

Presumably you've mentioned your concerns and the history to your GP?

Also, what would you like them to do? Is it something specific eg run some specific tests, or do you just want them to do "something" (which it sounds like they have already). Have you requested these tests?

I mean this nicely - but just because you didn't get the answer you want (not sure what that actually is though) it doesn't mean they aren't taking you seriously.

You can go and see a different GP if you'd like to.

What would "taking you seriously" look like?
Your ds has been seen and examined, he has seen a consultant, he has had a diagnosis, he has had full blood work up twice.
He has alopecia, which is not nice for him, but unfortunately is one of those random things.
From what you describe his alopecia is following quite a common disease course. I. E. It comes and goes and then can often start again.
All the symptoms you describe are related to alopecia.
Unless there are other symptoms I don't know what it is you think the doctors are not doing or considering.
And even if there is a link between kell antibodies and later life alopecia (I don't know of one) it won't change the alopecia.

I guess I'm just worried on lots of fronts. His AA is aggressive with the loss of nails and the halo moles (likely to be linked so I've been told ie the body attacking itself). The history of MS, and the old wives tail that it skips a generation. The antibody issues, the fact he had such severe in vitro anaemia and as a newborn. Just worried that the alopecia isnt truly stand alone, as it is in so many cases, and wondering if symptoms will worsen as he gets older.

Just a mum worrying.

GP here - i think it would be worth a thyroid check - not really due to the family history but more because its an easy thing to just rule out -but I'm sure they would have done this at baseline anyway? There isn't any link with alopecia and MS and nothing further that could be done there.

Regarding the haemolytic disease - again no specific link with alopecia that I'm aware of - but what would you actually like the doctors to do about it? not at all meaning to sound antagonistic - what i mean is its always worth considering what specific question / concerns you have and asking directly?

sorry x posted with isleepinahedge - thats exactly what i meant. I understand you're feeling worried, but wanting the doctors to do 'something' - do you mean there is a specific test that hasn't been done, or do you just want them to take away your anxiety? as that may not be possible in this reference.

i think its natural and understandable to be worried - but i think all the issues are being muddled together. Any parent could worry about MS for example if they've seen a love one go thru it, but thats not at all related to the AA.

Anti-Kell antibodies are not going to cause alopecia, can't comment on the rest. I assume what happened is that you have antibodies against K (the most common antibody to have in the Kell system, "Kell" itself is not an antibody - it's a group of many similar ones), your DS was K+. This meant during your pregnancy your antibodies crossed the placenta and attacked his blood so he needed transfusions. After he was born the antibodies you made no longer have a way of crossing into him as they are in YOUR blood and you are no longer connected via the placenta any more. So your son doesn't have anti-K in him any more, you do, so the presence of any irregular blood group antibodies is not related to any symptoms he's experiencing because he's not the one that has the antibodies. Regardless, even if he had irregular blood group antibodies they are antibodies against blood groups that he doesn't have, not against himself so they don't cause disease within the individual, they only react against blood transfusions if the individual is given blood from another person who does have that blood group.