Does your child have a chronic health problem?

[Janni]

Is there a spot on MN for parents to support each other with this? I don't think it fits into the SN topic.

I have a DD with cystic fibrosis and I know there are others on here, as well as parents of children with eg Crohn's, asthma, renal probs., heart probs., diabetes etc

I would like to be able to chat about the trials and tribulations of this aspect of parenting, with others in a similar situation and wonder whether any other MNers would find this helpful.

Feedback please!

Oh dear. Wasn't meaning it in a "clique" way Really would rather not be part of either.

It's more the fact of what I said below.. "SN" is generally taken to mean not NT. Am I wrong? And I suppose I sort of categorise it that way a bit in my mind, perhaps wrongly (?) because I have children in both categories.

there is no quiche

Have I indvertantly offended you again Fio? (A la pram-gate! )

Mumsnet is a bloody minefield even after all these years. When I am to be meek, mild and thoughtful, I offend people. When I am aiming to be bloody well offensive, people laugh! (Or ignore me.. which is more usual! )

i am not offended
there is another thread in sn aswell going on about the same, i think anyway

Sigh. I could murder a quiche. My calorie counting plan is going swimming.. one week in.. lost 3 lbs, 2 cm off each (enormous) thigh, 1 cm off waist, 4cm off hips!

But quiches = no go!

Ali - Havbe they took blood and tested specific antibobies. we just had this done they all came back really low, so he is having his MMR, Hib, tetnus and the adult pnumo (21 strains rather than 7). They do not know why they have not took.

Thay also tested his imunogloblins and something else, which came back high, which means he may have an alalgy or could just be down to the fact I have a nut allargy.

We may try the becotyde again. We will wait nad see we are back next month. We are keen to cut down his realiance on the pred.

I too was told that he could grow out of it, but it isnt happening. We are lucky in that our good friends understand what a nightmare he is on steriods and so much ventolynn when he is having an episode - he is so hyper

I would feel that a health related SN topic may be more adaptable for some parents.

I have DD2 with CL3 immune deficiancy (low complements which effect the way she fights illnesses etc. she is fine 99% of the time, but when she starts to get ill she needs prednisolone for her asthma as that flares up quickly when she is ill, and anitbiotics has she then starts getting tonsilitus and other 'minor' infections)(oh, and she is severely dyslexic and has auditory processing disorder and weak eye muscles too!)

DD3 is currently under investigation for cyclical neutropania, which no-one has even heard of and is hard to explain beyond it being a blood/immunity disorder. she also suffers from childhood migraines and allergies and asthma, so is quite complex and yet not ill all the time (or even in need of any constant care unless on her 'cyclic weeks'). by the time she was 3, she had had pnuemonia 3 times, (plus another 33 admittences to hospital), and other nasty virus's which would not affect other kiddies neccessarily yet with her she gets ill much more so.

DS2 has bowel dismobility disorder, chronic constipation and IBS, PLUS the school has thrown up their suspicions for ADD and dylexia.

arghhhh

I don;t feel as tho I 'qualify' enough to be on SN, as the ladies there seem so much more 'in need' of advice and help than me IYGWIM. I often feel as tho they would think of me as a 'pretender' (oh, you have nothing to fret about....live *our lves for a day and then^ you'll understand stress).

Now, I KNOW that that is nowhere near the truth, and feel sorry for thinking it (as it is more my issue than others) but still....I do wonder if I would be wasting peoples time by posting.

Oh parameters scharamaters! I cannot be arsed with all of that! I thought you wanted to be able to post on SN Kerry (about you children with allergies, right?!) not have someone tell you that you can't!!

Or are you spoiling for a fight?

Swimmingly My calorie counting in going swimmingly!!

Strangely, I feel uncharacteristically (SP?! What is wrong with me?!) live and let live about the issue.. I think people should post where the hell they like! I have never seen anyone hounded off the SN board with "BE OFF WITH YOU! YOU CHILD'S CHRONIC ILLNESS DOES NOT FIT OUR CRITERIA!!" ringing in their ears, have you??!

no-one is banned from the sn section and its not for a particular type of mother either (trying to word this not so clumsily but cant) I unluckily have experience of chronis illness and developmental disabilities so would try to help out with advice if I could but would try and help with the tea and CAKe also if necessary

anyway i feel a bit paranopid atm

Well ditto I guess Fio And MN makes me bloody paranoid!! I don't know why I come here!

They have done blood test reguarding allergies and ige levels.

Last time at the hospital there was alot of talk about different tests including lung function tests and a bronchoscopy(sp) and different medication to try but nothing came of it and we don't go back till May.

I just feel something needs to be done he's on Ventolin Seritide Atrovent and montelukast and they have added Flixotide this week. It just seems alot of medication that doesn't seem to be helping.

oh....themadhouse...

My DD2 had none of her vaccinations work and needed redoing again.

they only discovered it when she came down with HIB after she had her vaccination for it. they were confused so tested her, and lo, no vaccines had taken!

she was re-vaccinated over the course of a year with different types of the same vaccines and she is now covered (oh, and she also had a couple extra.....pnuemovax and something else).

she is 11 now and altho she knows she has some health issues, she lives a normal life otherwise.

plus.....I have been vaccinated against chicken pox (long story) as has DD3......we still are not immune, so I think I have a freak gene passed on!!!

Did they do the specific antibodies though - it takes about 8 weeks to get the results back.

We have discussed a broncosocpy with the consultant and will leave it untill he has his MRI.

We are lucky in that we trialed each medication, so know the atroivent didnt work, the monteluxast caused nightmares, essesive thirst, rage and general hyperness.

It is hard not having a name. I also find it hard that if you look at him with just his pants on you can see the recession in his ribs

kerrymum can you please behave yourself

Ladies - Please let Janni speak for herself and not fall out over this. Please

Thanks Pycho - I know that it does happen, we are doing the full range, it explains why he does get a lot of viral things. He doesnt get bacterial stuff really

DS has leg issues and I post on SN - so many of the issues to do with getting support through the health, welfare benefits or education systems are shared in common, I have never seen anyone being 'exclusive' on the SN board (remember there is a SEN board under 'education' too - SN deals with all the other aspects of being a prent to a child with persistent or permanent needs / conditions - I would have thought that CF fitted right in on SN!

Sometimes I dither about whether my threads about DS's forthcoming bone-lengthening are 'health' or 'SN', but I don't think anyone is going to tell me off if I get it wrong, and the issues that come up are generally in tune with the knowledge pool in SN.

What makes any board effective is posters with relevant experience to your own.

No no specific antibodies blood test

I might go in May demanding some answers.

The staff in A&E know him well and he recognises some of them

I asked the consultant if the inhalors are working and his answer was that he can't risk stopping them becaudse he doesn't know what will happen

"I think parameters need to be set."

What for every section of the board?

Special needs is a group of people chatting. Not a mafia. Not a formal support group. Not a charitable organisation.

If you post and a question isn't answered it probably suggests that you're posting in the wrong section of the board because not enough 'relevant' people who are able to offer help/advice/support are reading your question. It doesn't suggest that people are making value judgments.

If I saw a question about CF or allergies or immune related issues in SN I wouldn't answer it because I wouldn't open the thread. I know nothing about it. I would open the one next to it about DLA, or the one next to it about PECS. I wouldn't expect someone dealing with CF to give3 me advice on PECS.

If having a chronic health section makes it easier for people facing the same sort of issues to 'find' each other on a busy board then it sounds like a good idea. BUt there's no value attached to that comment- just a practical one.