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BeckySerenDylan

Posts: 146
From: Suffolk
Registered: 06-Nov-2006

Question about developmental delays being linked to CF??
Posted: 13-Dec-2006 20:52

Reply

Been a bit of a crappy day today.

Dylan had his appointment this morning with the Community Paediatrician, to assess his developmental delays, and the results weren't very nice to hear.

She sat him down and did the normal tests with him, but from the start of the appointment, you could see that things weren't going to go well, as he sat down at the desk for about ten seconds before he was up and getting into mischief.

He pulled the labels out of the filing cabinets and chewed them (I hope they knew what was in those drawers!), climbed up some wooden stairs and retrieved a hidden key from a high windowsill and chewed it, riffled through the filing cabinet next to the doctor's desk and chewed all the blood test forms in it! He also had numerous tantrums, throwing himself on the floor, wailing and headbutting the floor. He also managed to bump himself on the table, so he's got a nice shiner on his cheekbone.

Anyway, the results were -

Comprehension of Language - That of an average 15 month old child
Self Care Skills - 15 month old
Social Development - 15 month old
Speech Development - 18 month old
Physical Development - 3 year old.

So she said, he has problems in quite a lot of areas, and they'll want to re-assess him in 4 months time, to see if he's made any progress, but that he'll probably need help when he starts pre-school and school. She said he will catch up eventually, it'll just take time.

But (and this is the bit I wanted to ask about), she also said that developmental delays are common in children with CF (Not that I've EVER heard that before, and Seren is AHEAD of herself in development, even though she has CF!), and that the delays are partly caused by the amount of time he's been in hospital and been ill in his life, as he's just been too unwell to focus on development.

My friend also told me today that when her son was 10 days old and being treated for suspected meningitis, the doctors told her that iv antibiotics can cause developmental delays, and as Dylan has so far had 13 courses of iv antibiotics from 3 months old to 24 months old, it's likely that if this is true, that has played a part in his delays. He also has 3 daily antibiotics, and he's also just about to finish an extra course of Augmentin, on top of all the normal ones.

Has anyone else heard that iv's can cause developmental delays? I've heard that they can damage the hearing and the kidneys, but never that they might affect a child's development!

Of course he wouldn't be here without the iv antibiotics, so I know he has to have them, but it's still not nice stuff to think about, and it's horrible to hear my worst fears confirmed, that he IS actually about a year behind himself in most areas of communication.

Seren has been a total nightmare today, at the appointment, at the Post Office (where we spent a horrible half hour posting Christmas stuff), in the restaurant, and walking to the soft play place.

She cheered up once we got in the soft play place though, and she and Dylan played nicely, which was good to see, and Dylan even had some Milky Bar there, which he seemed to like, so that was good, seeing as he's lost 0.3kg since 1st December! He was 14 kgs on 1st December, and 13.7kg today, and that was with heavy jeans on!

Anyway, by the time we got home I had had more than enough, and bless him, Adrian did the kids tea and put them to bed for me, so I've just been playing on the Postman Pat website with Dylan for a bit before bed, and I'm now off to wrap presents.

Seren's got her Christmas play in the morning (her Frosty the Snowman costume finally gets it's moment of glory!), so it's going to be a huge rush in the morning, as Dylan's being picked up by the childminder at 8.15, so he's going to have to be up extra early to get all his treatments done, and then we've got the community nurse coming at 8.30 am to do a cough swab on Seren, as she's coughing too at the moment. Then we've got to be at nursery by 9 to get ready for the play, which starts at 10.

Just for once I would like a day where I didn't have to rush!

Anyway, with all that venting out of the way, does anyone have any ideas about the queries??

Becky x

alibozo2

Posts: 13
From: sevenoaks
Registered: 11-Dec-2006

Re: Question about developmental delays being linked to CF??
Posted: 13-Dec-2006 20:59

Reply

Hi this is gonna be quick as kids driving me mad, but just wanted to say Oli was in hospital and quite unwell when he was little and he was slow developing socially his school kept him back a year and so he is in with year 3's when should be in year 4. Has really come on alot over the last couple of years now he can keep up with class work if he is so inclined although half the time he doesn't bother!!

Off to rant at kids!!

maggsmcg

Posts: 60
From: Hemel Hempstead
Registered: 07-Nov-2006

Re: Question about developmental delays being linked to CF??
Posted: 13-Dec-2006 21:35

Reply

I haven't heard of CF being contributory towards developmental delays and I haven't heard of antibiotics having an effect on development either and I surf a lot of web sites. But as he has spent a lot of time ill and in hospital that may well make him a bit on the lazy side when it comes to doing things for himself.

I am sure he will catch up once he starts nursery school or school.

When Shelby has been in hospital - as she has for nearly three weeks just recently, she becomes very lazy at doing things for herself and we have to find ways of persuading her to start doing things again. This happens every time - we have to start all over again with the independence thing. It takes a good week or more, especially trying to get her to fall asleep on her own, in her own bed, in her own room.

meggy

Posts: 30
From: The South
Registered: 06-Nov-2006

Re: Question about developmental delays being linked to CF??
Posted: 13-Dec-2006 23:18

Reply

Sorry you've had such a grotty day! Joel had a few tantrums at his annual review on monday, and tried using the phones, opening all the cupboards, stealing the Doctor's stethoscope etc - it's very wearing isn't it.

I'm guessing, but I suspect Dylans delays are linked to being unwell, not to CF, or IVs etc.( I never heard of IVs causing delay either) When we got Joel at 20 months he too was quite delayed in a few areas. He could barely walk, and was quite unco-ordinated, couldn't feed himself at all, had no speech. The first year of his life had been in and out of hospital, and it seems as if, like Dylan, he had been just concentrating on staying alive.

After he turned 1 he started to get stronger. Now he is basically well most of the time he has caught up on most of his milestones, and at 3 he is more or less where he should be - perhaps he can't run as fast as some kids, but that's about it! His communications skills are way ahead, now.

meggy

Tamariki

Posts: 54
Registered: 08-Nov-2006

Re: Question about developmental delays being linked to CF??
Posted: 13-Dec-2006 23:51

Reply

Becky,
Sorry it has not been a good one. My first thing to say is ask for him to be refered to the speech and language development service.Dont wait and see how things go - act now.
I do believe there is truth in that when the body spends its time trying to get better then everything else is put on hold.

My son without cf didn't/couldn't speak until he was 3. 2 years on he has fantastic sentence structure but admittedly it is not clear but he is getting there.Has speech therepy every week.

My other son with Cf has a huge spectrum of issues. Never has it been suggested it is to do with CF.

Boys are so different to girls, although it is hard try not to copmpare them. Boys do get there in their own time but developmentally lots of them are way behind the girls. Thats why the term ' average' in tests is massive.
T.

BeckySerenDylan

Posts: 146
From: Suffolk
Registered: 06-Nov-2006

Re: Question about developmental delays being linked to CF??
Posted: 14-Dec-2006 11:15

Reply

He has already been referred for speech therapy, he has his first appointment on Monday, so I've not had to push for a referral or anything, which is a relief.

Thank you for your answers, at least I feel a little bit less alone!

Becky x

Diamond

Posts: 10
From: Monmouthshire
Registered: 23-Nov-2006

Re: Question about developmental delays being linked to CF??
Posted: 14-Dec-2006 12:00

Reply

Hi Becky

After a 22 year career in Learning disability services I have never heard of CF or antibiotics being a cause. I would definately ask for a second opinion. Children can react to strange environments so maybe behaviour was due to this. Long stays in hospital may have an effect but not dramatically so.
Dont ignore the issue completely as if there is a problem there is so much support and help available. Ask for a second opinion and talk it through with your GP.
I have a 16 year old daughter with CF and an 8 year old boy non CF . He was definately the worst for tantrums but settled down when he got to junior school.

All the best to you.

BeckySerenDylan

Posts: 146
From: Suffolk
Registered: 06-Nov-2006

Re: Question about developmental delays being linked to CF??
Posted: 14-Dec-2006 13:33

Reply

I don't think we really need a second opinion, as I've been saying since he was about six months old that he was developing differently to Seren, so this is no shock to me, and I had guessed before the diagnosis that he is about a year behind himself.

He's been assessed by the SALT as well, and has his first therapy appointment for it on Monday, and his nursery are already giving him special consideration, making sure they make plenty of eye contact with him, reading books with him, talking lots to him, etc, as they have noticed this developing over time, and first mentioned his problems at around 18 months old. He's now 27 months old.

His CF Consultant also noticed his reluctance to communicate and wanted him referred through the Health Visitor to the community paediatrician to assess his development, which is what happened yesterday.

So I've already got a lot of opinions, and they're all basically the same, that he is struggling with his development, and I do think that a lot of it is down to his long periods of illness, as when he's that ill, he just isn't interested in progressing and developing, he just wants to get through it and feel well again.

You can notice the difference when he has a relatively 'healthy' spell, as his development has a little jump.

He has recently started to make far more eye contact, and he will now smile at us to get a smile in return, which is a total first, and he will instigate conversation by pointing things out (which started in the last month). So some small progress has been made, but not enough to alter his development scores yet, which is why they want to see him again in 4 months.

Becky x

Tamariki

Posts: 54
Registered: 08-Nov-2006

Re: Question about developmental delays being linked to CF??
Posted: 14-Dec-2006 16:38

Reply

sounds to me Becky that dylan has got a fab chance with so many people looking out for him.
Take care
T.

sunseasand

Posts: 74
Registered: 10-Nov-2006

Re: Question about developmental delays being linked to CF??
Posted: 14-Dec-2006 17:13

Reply

Hi Becky, I have never heard that cf can cause development problems also. My son was extremely ill for the first six months of his life, so ill that he mainly slept through that period. This would mean all his PIES skills would have been affected, but this was not from cf but from generally being unwell, like any unwell baby/child.But by one years old he was remarkable and showed a lot of signs that he was advanced for his age, mainly his intellectual development. All through infants and juniors he was in top group settings and eventually he went into his local Grammar school. With the speech problems becky I have heard that not to give them dummies after 6 months and get them on solids from 3 months as the chewing actually helps their development of speech. If he has been unwell a lot in his life it may be that he has slept more and social groups like playgroup etc may have been missed more. Good on you that you are getting things sorted out, the early the better as they say. from sunseasand.

BeckySerenDylan

Posts: 146
From: Suffolk
Registered: 06-Nov-2006

Re: Question about developmental delays being linked to CF??
Posted: 14-Dec-2006 19:06

Reply

Dylan's never used a dummy, and started solids on the recommendation of his dietician at 4 months, so I don't think we made any mistakes there, but I do think the time spent ill hasn't helped, as this year he has spent 18 days in hospital, and that doesn't include day ward attendances, and the weeks and weeks he's spent ill at home with chest infection after chest infection, or an asthma attack.

Becky x

cupcake

Posts: 141
From: england
Registered: 02-Mar-2004

Re: Question about developmental delays being linked to CF??
Posted: 15-Dec-2006 13:57

Reply

Hi Becky, sorry to hear Dylans been struggling with things, although it sounds like he is being looked after very well and is getting the best help so will hopefully start to catch up really soon.

I haven't heard of a link between CF or IV's and development delays. BUT, our consultant ALWAYS makes a point of checking my daughters development and until I read this post I never thought anything of it. When she was younger she would do all the usual checks like does she follow with her eyes and watch things, could she roll over, sit up, walk, talk etc... I also remember her asking how many words we thought she was able to say, and was she starting to string sentences together. Maybe there is a link I don't know, but now that I'm thinking about it her DR has always kept a close eye on her development - so maybe there is something in it. She also had quite a few courses of IV's as a baby and was treated for meningitis before being diagnosed.

It could just be that while Dylan's been so ill he hasn't been able to keep up as well as he should have. Hopefully with the extra help he'll be catching up with the others in no time.

Take care and hugs to you all
Susie

SarahE

Posts: 24
From: Kent
Registered: 06-Nov-2006

Re: Question about developmental delays being linked to CF??
Posted: 15-Dec-2006 17:27

Reply

Hi Becky

Haven't heard of the development/CF issue before but just wanted to send big hugs your way as you have had so much on your plate recently. I bet Dylan catches up before you know it

Take care
Sarah
xxx

tj

Posts: 33
From: Manchester
Registered: 06-Nov-2006

Re: Question about developmental delays being linked to CF??
Posted: 16-Dec-2006 13:04

Reply

Hi Becky,

I know you have been worried about this for a while and am glad your on the road to getting it sorted.

Joe had terrible weigh gaining trouble for a long time and was seriously behind in his physical development rather than speech. He has caught up considerably however, we still notice he is far more cautious than other children of his age and isn't as advanced in this area of development as perhaps he could be.

Our consultant has commented on this fact and keeps a continuous eye on Joe's development and when he is in for IV's our consultant and other doctors do tend to ask how his development is going.

I wouldn't say whether it is directly linked with cf/IV's or if its just down to his body being too busy fighting illnesses, but I hope Dylan gets a good patch and that his speech therapy will help him come on in leaps and bounds.

Sending you a much needed hug for being a wonderful mum,

tinekaxxxx

BeckySerenDylan

Posts: 146
From: Suffolk
Registered: 06-Nov-2006

Re: Question about developmental delays being linked to CF??
Posted: 16-Dec-2006 14:17

Reply

Awww, thanks hun. Can't say I often feel like a wonderful mum, if ever, but the hugs are MUCH appreciated.

Becky x