DD just been diagnosed with possible cyclical neutropenia. Anyone else here got it/had it/advise me please!

[Psychomum5]

DD3, (9yrs) after many years/months of illnesses and differing diagnosis' has finally been DX with what her doctor and I (I have heard metion of it and googling it fitted her symptoms) think is cyclical neutropenia.

I am relieved in a way, as we finally have a name for her, where-as before when she got ill it was always 'I don't why/possible immune deficiancy/she is just bizarre(this from her previous paed)'.

she was born with chicken pox, and by the time she was 2.6yrs she had had pnuemonia 3 times, seizures (epileptic blanking type and febrile), many wee infections, gastro bugs, tonsilitis, ear infections, staph infections in cuts....she was in hospital monthly right up until she had her tonsils out just before her 5th birhday. Her sugars also played up lots, and at one point she was DX diabetic, and then a month later they decided she made too much insuline so she wasn't[confused STILL]......anyhoo.....odd child, alsways ill, and always got anything anyone else got so badly she ended up in hospital!.

she did in fact improve after her tonsils were taken out, and we thought it was those poisoning her that caused all the probs, but seemed not whne about 18mths/2yrs ago she got bad again.

she was then DX with childhood migraine (which we think she still suffers from, but I am now matching into her cyclical illness as she gets them monthly too), but I had noticed that EVERY SINGLE blood test she had were showing up her neutrophils as being low. I then asked her paed, who looked at me strangly and referred me as, in her words, "I am tired looking as DD3 and think I may be missing something because she is quite bizarre".

to be fair, I didn't exactly 'bond' with the paed, so welcomed her referring me, and our new paed is simply great and willing to listen and retest and refer to immuologists etc.

anyhoo.......after 6 blood tests over the last 10mths, all showing as low, they have finally referred her to a haemotologist(sp?) in suthampton, and said that she will soon start with the twice weekly bloods for 2mths while they work out the exact type of neutropenia (they think cyclical but still have to confirm as there is about 5types).
BUT
what then?? does anyone have any experiance and know?
googling it has scared me as it says heightened risk of leukemia (to be fair, she isn't severe so I know she isn't at high risk, but still, seeing it makes you go [eek][argh]IYGWIM)
plus, it also says bone marrow testing (I hope not!), but never really explains treatment etc.

or causes, altho I think personally it all stems down to being born with chicken pox as I caught it too from DD2, as I hadn't been 'lucky' enough to catch it as a child.

soooooo.......anyone here know, or am I again, bizarre(well, DD3 in fact)

I am bizarre.....

bloody knew it!!!!

Aw bless DD3

Bumping for you

thankyou

someone out there must know SOMETHING

surely.

pretty please

You could try 'Contact a Family' here

They are aimed at disabled children and children with rare disorders.

They don't have DS' rare disorder on their list sadly, so you may not be lucky, but they were able to give me loads of information I had not previously seen.

thankyou lots norty

I am feeling less ignored tho, as went on to their 'contact a family' bit, and there are only 10 listed, and only 5 in england.

didn't realise it was quite so rare!

and to be fair, she isn't 'severe' anyhow, well, not anymore so much. we cope at home and taking time off school etc, but I am reluctant to use anti-B's so we are actually doing really good right now as she recovers rather well without them.

gah, was kind of hoping there would be people here that may have heard about it more, or even been thro it.

I'm sorry - I know nothing about the condition Psycho- but I'm glad you have a dx- it just makes somethings fall into place a little. My ds was similar- so many illnesses, no patterns to them etc- finally had a dx 1.5 yrs ago, has helped her move on- can get DLA for a start etc...

Hope someone else knows something.

it is wonderful to finally be able to have a name.....something tangable to look up and learn, about rather than the 'grasping in the dark', that we used to do to try to explain why she got ill to ignorant people when even we didn;t understand why!

SUCH a relief too that the Paed just listened to me, and allowed the testing, rather than fob me off and try to brush it all away like the previous paed did.

if you don't mind my asking eachpeach, what does your DS have?

am bumping for daytime.

am hoping I am not the only mum here that has a child with it.....feeling a bit argh about it all today. Altho this is what I have suspected for a while, and it is nice to be listened to, the reality of it is a bit HMMMMM, what next? IYGWIM. I should have asked really, but I don't think he is the right person to ask, seeing as he is having to refer me.

In fact, has anyone heard of Mary Morgan.....she is the hematologist at Southampton hospital that we are being referred to. anyone know of her, had dealings with her?

really is just me then!

ah well, come and reassure me anyhow that we are gonna be fine with this......(I know I will, but saying so is nice all the same)

last ditch shameless bump.

I lied.....another bump.

I refuse to believe that no-one here has heard of this....!

or maybe they haven't......anyone?

I have never heard of it but just posting to say have you tried looking for a yahoogroup for this?

My mother has a very, very obscure auto immune disease (churg strauss syndrome) and the only way to find out anything about it is to look at the yahoogroup where other sufferers post.

She is at theoretically higher risk of leukaemia too but she is nearly 70 so it's a different kettle of fish. Once they got her meds right, she improved vastly so I hope you get some help with the new doc.

no....had not thought of that!

thankyou for your reply, even tho you too have not heard of this.

I feeling as tho it is made up today, as the looks I got at school this morning were all kind of thing......made me feel soooooooooooooooooo much better I have to say.

ah well.....even if no-one has heard, the bumping and replies make me feel better

um, sorry Psycho- I put ds but meant dear sister...

Well she is now 27, and was dx with fybromyalgia (sp?) but to be honest, i don't think its just that.
She had health probs all through childhood, coupled with mental health probs... not a very happy life, but seems to be on an even keel at the moment

lol eachpeach.

thank you for correcting tho, altho sorry to hear about her!

at least tho, for your Dsis, having a DX helps, as it is sure to do with my DD3, once people understand what I am trying to tell them at least!

plus, thankyou for the bump , was getting bored with bumping myself (how the hell do those 'huns' do it???)

am still a wee bit tho at the lack of no-one else here with it. I thought MN was a vast well of all knowledge!!!!

Well- they're a little more brazen than you or I perhaps

I did namechange to EachPeachPearHun for a little while

didn't you say only 100 families in UK? Maybe no-one has come across it before?

A colleague has a son with an extremely rare genetic condition (costello's) and the only way they found other families to share information with was through the paed dealing with them. (I think there were only 8 UK cases). But as so little is known about it, they were all 'test' cases effectively, so the hospital did a lot to keep them all updating each other. They also were taking part in a genetic study (I'm assuming for the rest of his life) to try and help future patients.

Have your other children been tested? (isn't it genetic?)

not as yet, as altho we know that DD3 is neutropenic, and suspect it is cylical, until we go thro the barrage of blood tests etc (and then maybe the bone marrow test), we won't know the exact type......meaning that we can't test the others for it IYGWIM.

one thing I will say tho.......my doctor has always said that whenever any of us get ill (well, me and the children this is), we get ILL.......any time we get a virus or infection, we all seem to suffer twice as bad as anyone else. all rather bizarre in their words really, but true all the same, which may be a clue (?).

plus, DD2 DOES have an immune deficiency (complement level 3), and now I wonder if it isn't this and that they have missed it, as she too gets almost as ill as DD3, and she too spent many times in hospital as a baby/toddler/pre-schooler.

plus, all the others are well known at the hospital, and are all, or have been, under the 'bad' paed.....I am seeing her next week in fact with DS2 (he has a bowel condition), and may shout and scream politely
tell her what is going on and suggest that bloods be done.

(am not going to tell her the results and suggest that she shove it up her arse and smoke it after the way she spoke of DD3 the last time she saw her before referring her, oh no, I won't, even tho I soooooooo want to!)!

I wonder tho, should it turn up, if it comes from me as I too seem to get things badly!

oh god, another way for the 'mother guilt' to trip me up!!!![ironic smile]

You can hardly have any control over the genes you were born with!
Possibly they all have traits of the condition (if thats possible) but dd3 has more then the others?

Bone marrow investigation won't be nice though, so I do really feel for you.

Hi!
Can't really help, just wanted to offer sympathy. My dd was tested for cyclical neutropenia at Southampton though it turned out she doesn't have it. I did google treatments at the time, but have to admit I've forgotten most of it. There were definitely plenty of sites that talked about treatment, from the basic ones of keeping away from infection at the low times of the month, to more active treatments. In the end, I think the verdict was dd's infections were simply the result of exhaustion from the Ehlers Danlos syndrome which she does have (though even there, they dithered for 4 year about the diagnosis- and I think the paed was definitely relieved to see the back of us!).

Bumpin too