HELP!

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My lb has eczema, he always had and I knew when I was pregnant he was going to have it. I have it and and so does my little brother (4). This is something I have dealt with all my life and I know how to manage it.

For nearly two years I have fought tooth and nail to get a referral to a dermatologist, and over these two years various referrals have been 'made'. No health professional is listening to me and they keep accusing me of not putting creams on him. My old HV used to ring the docs to make sure I had made appointments and threatened me with social services if his skin didn't clear up. How is that fair when it's something I have no control over.

My new HV is lovely and has experience with skin conditions, however two weeks ago she taught me a new bath time routine which has worked very well up until a few days ago when unfortunately he took an allergic reaction to something. Because of this my HV feels like she has no choice but to get in touch with SS.
Of course my first reaction was to cry and clutch my son for dear life. She tried to calm me down and say she is only doing it for a bit of extra support for me. I just need people to listen! I had my son when I was 19 and health professionals think I am stupid and don't know what I'm doing. I have more experience with this than many of them.
I'm scared my son will be taken off me because they won't listen and they don't believe I'm trying my hardest with him. I feel like I've failed as a mother and I'm afraid now to go to his appointments incase I leave without him. This whole thing is driving me crazy and I cry a lot because of it. Also apparently I didn't pick up a script for my child for three months! I know that is not possible, I may be forgetful but I am not neglectful, there has clearly been a mistake somewhere down the line but of course noone believes me. I'm really starting to feel paranoid and I don't know what rights I have. Can anyone help me please!

Have you actually seem a dermatologist?

No not yet. This is my point, I've been told over the last few years countless times he has been referred but he never has. Now I'm left in the lurch looking like a bad mother.

Poor you OP, this sounds like an awful situation for you. How old is your DS? I can't believe they want to refer you to SS. What support could a SW offer with eczema fgs? You need to see a dermatologist and I bet an allergy test would be a good idea too. My DS, 14 months, had eczema as a young baby and he also has allergies. I removed cows milk from his diet (he's breastfed anyway) and his eczema completely cleared up. Could you try that? I wouldn't broadcast it to HV, GP, SW though... but try tweaking his diet, wheat can also be a trigger. And get him drinking lots of fluids, plenty of water helps my DS with his asthma and allergies, sounds crazy but if he'd dehydrated it really affects him.

You have my sympathy because when my DS was suffering with his eczema, he was about 5/6 months. We took him to the GP for a bad cough and he started lecturing us on putting cream on DS (he had a little eczema on his cheeks), saying 'don't let it get too bad). Actually, the times he has had bad eczema, those thick greasy creams make it worse as the skin is unable to heal properly.

But now his skin is beautiful and that's purely from removing milk. Actually he has a little hives today after eating egg, he has a mild sensitivity to that. It's all related isn't it? Allergies, eczema, asthma.

I also give my DS vitamins, especially cod liver oil which is good
for the skin. And water, apparently water is a powerful natural antihistamine, and allergies trigger the eczema so if your son is even mildly dehydrated - that could set off an allergic reaction which sets off his eczema, it's a viscious cycle.

Sorry, maybe I haven't helped, but I really have little faith in modern medicine after my own experiences with my DS and his various health complaints. I think you are being treated terribly and hopefully a SW will help you, they may even push for a referral to a consultant on your behalf.

SS do not want to take your son away from you, they want to ensure that you are supported and have a full understanding of how to treat your son. Yes you have many years of experience, that must be terrible for you, but where is the harm of taking on board what the HCPs are saying? If you are struggling to get a referral, having a social worker on side may speed things along. How do you know he had an allergic reaction? did you take him to the doctor? It reads to me, and please correct me if i am wrong, that you are trying to self manage this? you must take your DS to the doctor you suspect an allergic reaction. You are not a bad mother, and they don't think that, but please accept their offers of help - why wouldnt you do that?

She shouldn't have to fight to see a consultant. My DS is younger than hers and he only had one moderate allergic reaction which led to a consultant appointment. SS should not have to be involved in such a referral, a GP can do it.

That's for your help ladies. I just needed some reassurance that it's okay if I see a sw. I'm not trying to manage this myself purely because it's not possible....but I have found the creams that help him. I always know when he has taken a reaction because his face breaks out every time. Some of you ladies seem to be having similar experiences to me. I take him to the doctor when his skin is bad for help and I get lectured for not creaming him. When in actually there because he has taken a reaction and I need something stronger to help. Too many conflicting opinions between my doc and my HV and tbf I'm more inclined to trust me HV on this one. Thank you again ladies, I'm more calm about letting ss into my home. I will always be suspicious but at least I'm cooperating

I know you said that referrals are said to be made but nothing arrives, but wondering of they have and the appointments haven't made it to you. Missing health appointments might explain the SS referral. I can't see why SS would be involved for a child with a skin condition, and certainly if that's all it is they are likely to bounce it back.
I would strongly suggest you ask to see a copy of the referral the HV has made, because I'm betting she has put more than "mum struggling to manage kids skin condition"

Go back to see GP again and say that you want a referral to a paed consultant, that is where my son was referred and the con was brilliant.

Be polite but insistent with GP, say that it has got so bad that the HV is referring to SS so it must warrant a referral to a specialist before SS, once referral is made chase up with relevant dept a few weeks later to make sure they have received it.

I assume you have steriod cream for him, be careful with the thick creams as the one my son had originally was actually making it worse.

Mark on your calendar when you should be picking up prescriptions, then pick those up like clockwork.

I also used to put another layer of cream on DS just before we got to the doctors or in the waiting room, and they always used to comment on how well mosturisied his skin was, of course I put loads on at home as well.

In the end all the consultant did was give me a different cream (dermol) and a strong steriod cream, he told me to put the steriod on until his skin cleared, took about 2 weeks, then we started afresh with healthy skin and he never got as bad again.

Lastly do make sure you following the GP advice, you may have had eczema for years but treatment may have moved on or your son may need different treatment to you.

Reading this a bit more

I've been told over the last few years countless times he has been referred but he never has.

Why did you not chase this up, do they have your correct address?

Check with practice manager whether referrals were actually sent out, ask her to chase up if not, then check with relevant dept at hospital to see if they have received letter, if not check with them which address they would need letter to go to, then go back to practice manager ask her to resend.

Double check they all have your address correct.

If he has been referred you must follow-up and make sure you have the appointment date.

Ask HV to clarify exactly why she is referring to SS.

I was also going to suggest the chasing up that porthcurnick suggests. It is strange if you have been referred to other agencies and not received an appointment - but it does happen?

Also, try not to be defensive when you see any of them - difficult I know if you feel yo are not getting anywhere!

Keep a record of every phone call and conversation, who you spoke to, wha was discussed including what they recommended.

Keep a record of when you apply creamy and wha you applied. Keep all empty packets of cream to show that you are applying it.

If Ss do get involved, see them as a support for you and ask them to help you.

Thank ladies. The HV told me that a few referrals had got 'lost' and it is quite common even though they had my correct address. She is having her own suspicions about my doctor considering he only actually made the referral in may after I had complained to her the
Length of time it had taken. She is very on my side with this however I am very suspicious as to why she is getting in touch with SS. She told me that not putting cream on him can be classed as neglect. Any mother who has a child with eczema knows how bloody awkward it is and I don't enjoy seeing my son in pain nor do I enjoy the sleepless nights because he won't stop scratching. Cutting out dairy, no more biscuits and I'm keeping a food diary. Got my repeat script to repeat itself every two weeks whether I need the stuff or not, at least I have it. I realise I was probably being childish so after all this advise I have decided to document every thing I do and bring someone else with me to my ds appointments as proof of either the docs short comings or mine if I fail. Im going to ask for copies of every appointment letter/referral or anything that mentions my ds. I shall be calm and collected because at the end of the day it's for my sons well-being

Good for you.

Excellent idea to take someone else with you. Time to buy a big folder to take paperwork everywhere with you and show them all how organised and focused on your ds you are.

Best of luck x

OP - I suggest that you write to your GP, formally requesting a referral. Then send the letter recorded delivery and keep a copy. As others have said - start a file, and keep all correspondence in it.

I would also start keeping a diary (buy a desktop appointment one), noting when you are applying creams, what appointments you have had or requested and any telephone conversations with professionals and any other measures you are using to tackle DS's eczema (eg cutting out dairy). Also, note when you have filled prescriptions for creams as this will be further evidence that you are following the doctor's advice.

My heart goes out to you. I know how awful it is managing severe eczema - even without social services involvement.

Oh - and join the National Eczema Society. There are dozens of families as severely affected as you there, and it will make you feel less alone.

Good luck and keep us posted!