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Original poster

Does your child have a chronic health problem?

98 replies

Janni · 22/04/2008 22:36

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!

OP posts:
Blu · 23/04/2008 13:32

There is an allergies board for allergies, and a SEN board for special needs to do with learning. I am aware that there has been discussion about G&T being SEN or not...though as a SEN, G&T has it's own board.

Psychomum5 · 23/04/2008 13:33

TMH (am shortening it).

no, my DD2 never got bacterial stuff as much either......was always more viral and the virus's just hit her harder than other kiddies would have IYGWIM.

she did however get measles tho before they managed to catch up with her vaccinations which did effect her chest, but otherwise she was fine !

oh, and rubella......I did still have her re-vaccinated against MMR tho as she was 3 by then and I felt I would much rather know for sure that she was covered than risk and assume that the illnesses had covered her and then found otherswise....especially as she had the HIB vaccine, still got HIB, and then STILL wasn;t covered from it.

the extra vaccines DID take tho as I said

ChocolateRockingHorse · 23/04/2008 13:33

Precisely Yurt. That is exactly what I meant below in my support of the idea.

I would use both.

cory · 23/04/2008 13:35

Oh, Psychomum, cyclical neutropaenia is hard; dd was tested for that last year, but in the end it was ruled out. I am so sorry for your dd.

Saggermaker, thanks for the suggestion about appealing for DLA. We might try later on, but atm are busy appealing for her secondary school placement, and getting ready to appeal for transport to secondary school

Janni, in a funny way it's almost got easier over the years, as dd can take more responsibility for physio etc. than she did. Also, she doesn't seem to be blaming me quite so much these days. But I expect there will be hard patches during her teens.

oiFoiF · 23/04/2008 13:37

you knwo the new heel prick test for CF, does it just test for the most common strain of CF? do you know CRH?

Saggarmakersbottomknocker · 23/04/2008 13:39

Absolutely Blu. I post on SN and have never been made to feel that it was in the wrong place.

Anyway - I think we should put aside the who posts where malarky and get on with offering support.

Ali - I think a bronch is probably the way to go as things don't seem to be improving now ds is bigger.

It's hard when you don't have a diagnosis - or have one but having it makes the future uncertain .

Fio - can I have quiche? How's dd, anymore seizures?

ChocolateRockingHorse · 23/04/2008 13:40

It tests for all 12 known genes to the best of my knowledge Fio. It was a long time coming so it bloody needs to be doing the job properly!!

Saggarmakersbottomknocker · 23/04/2008 13:41

Cory - we didn't manage to get secondary school transport but at least the mobility part of the DLA helps towards the petrol costs.

Hope the secondary appeal goes well.

Psychomum5 · 23/04/2008 13:51

cory.....we still don;t know that it is that. we have just finished her run of blood tests (last week in fact), and I am now waiting to hear back from the hospital about who I now get sent to.....depending on what they think.

problem is now, my GP isn;t certian. we have had the results back and I have graphed them to see the pattern, but her nuetrophils look like a 'mountain range' rather than steady with a huge dip.

IE.....she goes from 2.9 down to 1.3 over a two week period, back up to 2.9 and then down to 1.3 again.

there IS something slearly up with her neutrophil count, as below 2.0 is classed as low, below 1.5 is classed as neutropenic (by defination) but still.......should be higher for longer and then dipping for a week. GP says the 'right graph' is 4.5 (eg) for 3wks then down to 1.0 (eg) for 1wk. DD3 doesn;t fit therefore.

arghhhhh.....we get a DX (possible), and then they state 'bizarre' again (her first paed called her that)

cory · 23/04/2008 14:04

Oh, that's horrible, Psychomum, that stage when they just tell you that your dc's body isn't doing what it should, but they can't tell you why. Lots of big hugs!

Saggermaker- I can't drive (health issues of my own) so petrol money wouldn't help.

Psychomum5 · 23/04/2008 14:10

thankyou cory.....tis just so frustrating all this. We have had it now since she was born (she was born with chicken pox) and she is now 9, so you can imagine the tears and rages I have had!

Saggarmakersbottomknocker · 23/04/2008 14:11

Ah! Hope you get the transport then too.

We've had a spell of teenage rebellion but things are back on the straight and narrow for the moment.

K20 · 23/04/2008 14:17

Maybe SN board should be renamed to Disability Living. Then we have no negative labels and all would post happily there. If this board is too fragmented it would cause cliques not prevent them. I suspect OP that you don't want your dd labelled as having SN hence objecting to posting on that board.

sarah293 · 23/04/2008 15:46

This reply has been deleted

Message withdrawn

TheMadHouse · 23/04/2008 15:54

Can we let Janni explain herself please - this seems to have turned into something very different that it was mean to be.

people have took this and seem to want to cause a rift for their own reasons

paperchain · 23/04/2008 16:00

I have only skimmed this thread as I am about to go ont he school run, but my DS1 has chornic health problems and DS2 has had them in the past, but thankfully at the moment I am not sure he fits into the category. I dont care whether the thread is in health or sn, it would be nice to talk to people who have some understanding of the long term issues of caring for these children.

PCx

yurt1 · 23/04/2008 16:05

I think janni made perfect sense (in case that didn't come across).

Original poster
Janni · 23/04/2008 16:21

Hi, back from school pick up.

Sorry - didn't mean to offend or upset anyone by starting this thread. When I looked at topics that had been posted on SN, many of them seemed to be about autism and other neurological problems and I assumed that's what the SN board was for.

I'm a bit fragile at the moment so not really up to working out where to go with this thread - happy to read what others think.

OP posts:
Original poster
Janni · 23/04/2008 16:21

Hi, back from school pick up.

Sorry - didn't mean to offend or upset anyone by starting this thread. When I looked at topics that had been posted on SN, many of them seemed to be about autism and other neurological problems and I assumed that's what the SN board was for.

I'm a bit fragile at the moment so not really up to working out where to go with this thread - happy to read what others think.

OP posts:
Original poster
Janni · 23/04/2008 16:21

Hi, back from school pick up.

Sorry - didn't mean to offend or upset anyone by starting this thread. When I looked at topics that had been posted on SN, many of them seemed to be about autism and other neurological problems and I assumed that's what the SN board was for.

I'm a bit fragile at the moment so not really up to working out where to go with this thread - happy to read what others think.

OP posts:
Psychomum5 · 23/04/2008 16:23

you're back from school then janni??!

Original poster
Janni · 23/04/2008 16:23

Whoops x 3

OP posts:
ChocolateRockingHorse · 23/04/2008 16:30

Janni I really don't think you need to "explain yourself". Agree with Yurt, you made perfect sense and you your OP was a perfectly reasonable subject for discussion.

sarah293 · 23/04/2008 16:32

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Message withdrawn

Blu · 23/04/2008 16:36

agree with ChocRock.

There do happen to be lots of parents of children with ASD etc - but also plenty of others crop up. So don't feel you can't post there Janni - but as Yurt says, the main thing is that Mums can find each other and your suggestion was perfectly practical / valid.

Sorry to hear you are feeling fragile.

That is definitley something that would find much empathy in SN.