AnonyMouse_11396 Posted July 4, 2012 Share Posted July 4, 2012 Hi wise ones, i have searched but am unable to locate a discussion recently regarding this condition. We have just been notified of a child joining us in September. We have arranged a home visit and organising a health practitioner to also be there to advise us and complete a care plan. Can anyone suggest useful websites, practical do's and don'ts. Thank you in anticipation of any replies. Link to comment Share on other sites More sharing options...
Guest Posted July 4, 2012 Share Posted July 4, 2012 (edited) Bearing in mind what you have said in your post regarding the care plan etc I would say to listen carefully to the parent because she will be the font of all knowledge I suspect, regarding her child. My sister in law has CF and it is a grim disease, but for some where it is managed carefully it can mean a fairly normal life for long periods of time. The input from parents though is huge. I expect you will need to be flexible regarding attendance etc because of appointments and physio and my sister in law has to try and steer clear of crowded spaces and folks with full on colds and flu because she is so susceptible to all of these things but they would affect her much more severely. Bearing in mind the haven for germs that nursery is, mum will need to talk to you about this too! I think the Cystic Fibrosis Trust is a good place to look for info online. Just google it! Good luck for your visit Edited July 4, 2012 by Scarlettangel Link to comment Share on other sites More sharing options...
AnonyMouse_8282 Posted July 4, 2012 Share Posted July 4, 2012 It was the one about water butts. There was a good website- but the name escapes me at the mo, but I'm sure others will have good current one to recomend. x Link to comment Share on other sites More sharing options...
AnonyMouse_11396 Posted July 4, 2012 Author Share Posted July 4, 2012 Thank you for the useful website. Yes thats the one water butts. :1b Link to comment Share on other sites More sharing options...
AnonyMouse_11653 Posted July 5, 2012 Share Posted July 5, 2012 Hi Fredbear It was the discussion about water butts, and it was me as we have a child at present with CF. We had a visit from the CF nurse before the child started which was obviously very useful, but as previously mentioned the parents should provide you with all you need to know. It will depend if medication is needed, we had to provide mum a list with all the foods we had at snack, mum then worked out how many capsules of medication would be needed. Once you have the information you need it isn't a problem, the water butt discussion was to do with standing water and the spores of bacteria released. Our little man is off to school in September and has had a great time with all his friends at Pre-School!! Kris Link to comment Share on other sites More sharing options...
AnonyMouse_11396 Posted July 5, 2012 Author Share Posted July 5, 2012 Thanks Kristina, glad to hear your little one has had such a lovely time. Link to comment Share on other sites More sharing options...
AnonyMouse_2157 Posted July 5, 2012 Share Posted July 5, 2012 We had a little girl with CF two years ago. I would reiterate everything said above re listening to parents and nurse specialists - staff training/awareness would also be good along with any other adults involved such as lunchtime sups' if you have them. Water butts and particularly the water tray need special attention as does any standing water as mentioned above. Our little girl had to have kreons (Sp?) as part of her snack- she had half a capsule which we sprinkled on a bit of heinz smoothies that her mum provided us with. Other kids were fine about this and took it all in their stride :-) Link to comment Share on other sites More sharing options...
AnonyMouse_30128 Posted July 5, 2012 Share Posted July 5, 2012 We have had two siblings with CF . At pre-school they have both been well . They do not have the cough and so their lungs were pretty ok. The little chap with us at present was very ill at birth and had a couple of major ops, he still has the scars to prove it. They also have Creon tablets (which contain the enzyme to break down fat) they need a specified amount per x grams of fat. Their mum always supplies us with a small pot of puree and we can put a 1/4 1/2 or full pill on depending on amount of fat consumed. Fortunately we only do snacks and so it is easy to sort out but his sisters school send the menus to their mum and she works out the fat content for them They need to have their medication after food and it must be given within 20 minutes If i do cookery i will work out how much fat per portion and tell mum at the door. We follow all the usual administering medicine guidelines and we stick the rest of the pill to the top of the puree pot so that Mum has a secondary check on how much we have given. A pot of medication is always kept at pre-school (oh and i'll post the reply from the EHO i got today on the water butt topic) Link to comment Share on other sites More sharing options...
AnonyMouse_11396 Posted July 5, 2012 Author Share Posted July 5, 2012 Thank you so much. Yes mum has already advised about the meds needed after snack.. Will wait to have home visit now, set care plan up and cascade all necessary information to staff team. :1b Link to comment Share on other sites More sharing options...
AnonyMouse_39602 Posted July 5, 2012 Share Posted July 5, 2012 Hi Fredbear, just to add my experience with CF , we have had a child with this condition attending for the last 18 months- I have only been at setting for 7 months . on strating his CF nurse came to setting to explain condition and need for medication when having foods containing fat. We have in place a photo and details of food with which he will need medication. Mum brings Creon granules in each morning checks menu ( i used to email her 6 weeks so she could put amount next to each) menu can be subject to change so in that case would either let her know when dropping off or call her as she is working parent.We have more fruit now so no need for medication then.the member of staff responsible for snack that day adminsters meds so no confusion and then signs relevant paperwork which parent signs on collection. It is important to understand that although the majority take after food our child has to have his before - this is a very individual thing depending on reaction to fat enzymes. I checked Cf site for information - as reiterated before it is stagnant water ( puddles ) that must not be played in and also things like hay as it has been wet and dried and can contain the phenomes that are dangerous ( we use this to enhance play ). If in doubt i always check and mum has always been impressed and confident with our approach. he stays to lunch and mum puts a sticker on lunch box stating how many sprinkles although now he has progressed onto capsules and will be going to school September. As part of our transition we visit school once a month for lunch and again mum knows menu beforhand and we communicate any possible changes. We are fortunate that one of the MDA at school has a grandchild with CF so therefore is experienced to give when he starts fulltime. We also carry antibac gel and always ensure he is first to wash hands after outdoor play. Hope this all helps x I just made sure to research as much as possible He has good attendance Link to comment Share on other sites More sharing options...
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