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!

Good idea Janni, and I hope all is very well with your girl?

I think this would be a good place for people to chat who don't necessarily want to start their own thread but would like to check in on others and swap advice.

My DD has wolf-parkinsonn white syndrome, a minorish heart problem caused by a short circuit that gives severe tachycardia. She is currently fairly well controlled on flecainide and manual ways to calm the pulse down if it kicks off, but will probably need surgery at some point to get rid of it for good.

I count my blessings that she only has this and is otherwise fit and well, and can only admire those of you who are constantly in and out of the hospital with the dcs. It is harsh to see them go through it. xxx

Thanks,shrooms. I haven't heard of that condition before. I'm glad they've got it fairly well under control. How old is your DD and do you know when she might need her surgery?

My DD is 3 and is generally OK - she gets a cough/cold every 2-3 months and then has to increase her antibiotics to protect her lungs. We're in that phase now. She's not sleeping too well and I'm spending a fair amount of time at outpatient appointments for various tests, so am feeling a bit drained at the moment.

Special needs is the board for you, however I agree the board name is not great. DS has issues - but not special needs - and the SN board is the best place to post and is sensitive to these children. The SN posts will not appear in the Active Convo's - which is sensible

Thanks for that tip K20 - I'll investigate.

Good stuff Janni, treatments for CF seem to have come some far now especially from a preventative point of view so I think the futures bright.

My dd is 7 and was only diagnosed last year when she started fainting/fitting and we reaslised her pulse could be up to 250 bpm

She may have the surgery in a year or so but it really depends on how well she stays, how the medication affects her (it hasn't really so far) ect.

It is a very simply procedure though and not like open heart surgery or anything so it really would not be too scary!

Hello - my dd has chronic health problems. She has a significant heart defect/disease that was diagnosed late. She had a partial repair but the late diagnosis/post op complications mean she has ongoing problems. She also had a leg length discrepancy caused by a clot for which she's had corrective surgery. We're currently waiting for an appointment for an MRI which may mean she faces further surgery.

I post on the SN board here - you have to check a box to get it to appear in your active convos. I realise that some people don't necessarily feel that their child's problems mean that they have SN or are 'disabled' in anyway (in fact there's a bit of a discussion going on about it in SN at the moment). I've always found the board supportive though and full of good info around getting extra help at school if it's needed or claiming DLA for example.

Shrooms - I'm glad that dd is doing OK. I remember you posting about her before.

Janni - the treadmill of appointments can be really tough can't it?

dd is 14 now so I got through the early years without the likes of online support groups and Mumsnet It was tough sometimes, so I agree - it's good to talk!

MY DS1 has a chest condition, which means that everytime he gets a cough or cold, he ends up unable to get enough oxygen.

He is 3.1 and we manage his condition, but as we do not really have a name for it (transient eposodic wheeze), life can be hard when explaining to people.

It has been discovered recently that non of his imunisations have worked so he is starting a 7 month plan to have all the imunisations again. He will also have an MRI scan too.

He is atypical 99% of the time, we have tried montilucast and becotide. He had really bad side effects to the Montilucast and becotide made no difference althoug we may try again.

He can only have Nebs under supervision in hital as he becomes really tachocardic (300 +), so we tend to treat with oral pred and ventolynn. But we are getting somewhat excessive on the times it can be used.

Janni - We were tested about 11 times for CF until we got a definiative negative (others were always grey area or incuficiant sweat).

I agree that a support area would be great, my sones consition is not life threatening at this time, but I do worry like all mums.

Sometimes it feels wring to winge, as so many people have it so much worse.

DS2 was born with a really small anus, so we have gone through loads of treatment in order to get him to poo , but he is on the road to recovery.

Saggarmaker - thanks for that. I'm still unsure about posting in SN, having looked at the topics being discussed. I'm always being told I shouldn't think of DD as though she has a disability and that she must have as normal a life as possible.

You sound like you've had a tough time with your daughter!

TMH - hi, I've given up a bit on Fly - feel overwhelmed by other things. Your son's symptoms sound similar - every cold goes straight to the chest. Then the extrabiotics cause tummy ache and sometimes
thrush or skin rashes...

Your DS2 has had a tough time of it too! Poo-ing is a major activity for a little one, so when there's a problem you really know about it!. My DD had a bowel blockage and has a short gut, but loves to eat and needs to eat a lot, so there are lots of trips to the loo!

My dd (11) has Joint Hypermobility Syndrome (/possibly Ehlers Danlos III), which is a connective tissue disorder. She has chronic joint pain, her joints are very unstable = frequent falls and accidents, she has a tendency to urine infections, incontinence and chronic constipation (because soft tissue isn't working properly). On a bad day she can't sit up because of lower back and hip pains, on a semi-bad day she needs to use a wheelchair because of ankle or knee pains. And we are always aware that she can collapse and fall at any time- 3 trips to A&E so far this year from falling down the stairs.

Other side effects are that scars heal badly and she gets no effect from local anasthaetics or painkillers. She went through a period of non-stop urine infections, but has got better since she started her new physio; we reckon the constant pain was just wearing her immune system down.

We've been turned down for disability benefit, mobility benefit, transport to school and transfer to a secondary school with disabled access.

cory - did you appeal your DLA? We had to go to appeal for dd some years ago but we were successful.

Janni - yes 'normality' of the day to day stuff is worth striving for. That said, daily meds/physio and hospital stays rather put a spanner in the works sometimes don't they?

My DS(4) has di-georges syndrome, which is a chromosome abnormality. He has a suppressed immune system, frequent chest and ear infections that can often have him hospitalised, he also has a sub mucus cleft palate, and hypermoblile joints. He has had five operations in the last eighteen months for various things, hernia, tonsills, etc.

We are however very lucky as over ninety percent of children born with this also have chronic heart conditions and thankfully he escaped this bit.

With regard to the SN board it is very difficult sometimes to know where to post. The majority of his problems are definately medical but they in turn impact on his general development, ie speech delay etc but I have only ever had great advice and support.

I know what you mean about hospital appointments because di-georges has such a wide spectrum of problems we see so many consultants! We generally average one hospital appointment a week plus speech therapy, hearing services etc.

DS has got ongoing chest problems requiring lots of medication and we have spent lots of time in hospital.
He also suffers with severe (anaphylatic) allergies.

Ds had an initial diagnosis of brittle asthma but after another stay in hospital this is starting to be questioned.

Ds needs prednisolone every two weeks and has had many courses or abs. Last winter he was on permenent antibiotics this did help but didn't stop the need for the steriods.

Sometimes is just nice to have a vent to other parents in similar situations.

Feeling a bit down about it all at the minute as nobody seems to have any answers

Hi KerryMum

No he hasn't been tested since the heel prick test.

I'm really at a loss the doctor said they need to have a rethink because they thought that he would be showing some improvement now he's 3.5

He is actually getting worse not better they just seem to be adding more medication.

Janni- come back and fly, just chat, you dont have to fly - Ive missed ya.

What I find hard is explaining to people, as he is fine one minute and then really poorly the next. I will not treat him any differently. If things dont get better, then the consultant said that it will be blood tests and gentics.

ali - it does seem odd with those symptoms that he hasn't been tested for CF, even just to rule it out. Poor little thing. This may sound wierd, but does he taste salty as this can be in indicator for CF.

Thanks TMH - I'm all over the rest of MN and that's enough for me atm

I understand what you mean about unpredictability and how it's hard to plan or really start anything for yourself. I have two older kids and I don't want them to resent the little one, so try to give them attention...

Yesterday DDs consultant told me she had a heart murmur and will need to be referred for cardiac tests. She's also got other liver/abdo scans coming up..
When I heard about the heart murmur all I could think was 'Great! More tests! More hanging around in outpatients occupying a lively three year old!! That's the sort of thing that can grind you down, I find.

Caz-caz - that's a lot of time in hospital!
I'm only there every couple of months.

Cory - your poor girl. It must be hard as they get older and you can't control things in the same way as when they're little.

Do they cover CH in the heel prick test now, as they didnt with my two. Any way my consultant toild me that they are finding veriants of CF all the time, which is why we might go down the gentic route

Janni, you are so right. Hanging around waiting for the appointments trying to occupy a small child is no joke, and I have often felt at the end of my tether with it. I just tell myself now that it's the same for everybody in the childrens outpatients clinics.

DS2 has to go in for a sleep study, (possible sleep apnea) soon and I am dreading it, not because he is having anything invasive but I don't know how I will get him to sleep in a place that he associates with pain and distress.

He was tested for CF as a seven month old and whilst it came back negative his resp consultant wants to look at the exact results again. Dare not ask why at the moment.

Themadhouse, we were in a similar position to you as in not having a diagnosis, but genetics held the key and we finally got a diagnosis in December when he was 4. Whilst it has thrown a whole new perspective on life, ie; he will not grow out of it etc, I do feel better equiped to deal with it.

On a positive note he has recently learnt to peddle his bike, something we had been told he may not be able to do, I could watch him all day on his bike!

There seem to be loads of CF parents on here now! Or maybe some of us are under new or newish names.

My nearly 16 year old DS has CF, diagnosed at five and a half weeks old.

I post on SN because I also have a DS2 with severe disability/complex needs and I have to say I don't really see CF in as SN, in the same way as DS2's or most of the children of parents who use the SN board, never have done and DS1 most certainly does not think he has SNs (apart from a "special need to eat the best food in the house at all times" )

Rightly or wrong "SN" is most commonly, I think, used to describe people who are neurologically atypical in some way.

I think a "chronic illness" thread is a nice idea. It doesn't stop parents posting on SN if they would like.

I dont understand why cystic fibrosis etc would not fit into the special needs topic. the area is there for evryone who has a child with additional needs, be it educational or health related

Apparently it is included in the heel prick in this area.

Not really sure to go from here.
I asked the doctor if it was an immune problem as he can't seem to fight illnesses off himself but he said he thinks his immune system is to reactive

We saw the consultant early march and since then he's had abs once and three courses of prednisolone