Allergies are back!!

so, all has been very quiet from us for quite a while now. Bear has been really well and hasn’t had any issues for months…..well over 12 to be more accurate. He turned 3 the other week and we seem to be having some unexplained allergic reaction in the form of hives and itching. We started a food diary, but there was no obvious food to coincide with the reactions. We also suspected rubber latex, following his birthday, we had a fair few balloons in the house, which he thoroughly enjoyed playing with in every way……some sneaky culling of the balloons after bed time until they all vanished seemed to see a huge reduction in the frequency of the reaction, although it has not solved the problem completely. He is kept comfortable with piriton when required and a calpol plug in vapouriser seems to make him more comfortable at night time when his reaction causes stuffy noses and itchy throats. It has been a while since we have had to deal with allergy related problems, but it all feels so familiar and there’s no panic this time….thinking we are now seasoned professionals now. Good job really,as we are soon to add another little man to our household…..and the same allergies are never far from mind after our experiences with bear.

 

So, arriving in June 2017 will be our little cub. Pregnancy has resurrected several allergies for myself. Lots of itchy skin related problems have seen me give up on all my usual shampoo, conditioner, shower gel, moisturisers and make up. I was feeling pretty sorry for myself, until I discovered something wonderful……child’s farm! Now, I know I probably have mentioned them many a time when talking about bear as I have been a fan for quite some time, but I never thought to use it for myself! I now smell and feel amazing after using all their shower products as well as their moisturiser, even caught my hubby filling up his bath the other day with child farm smelling bubbles, so even he is loving their stuff.

 

this is just a quick update from me today,but hoping to update more regularly with all things bear and cub! Especially as I will soon get to bring our cloth nappies back out of storage since bear potty trained last summer!!!! Excited!

MOOvember!!!

Don’t forget everyone that November is MOOvember….CMPA awareness month! Although Bear is no longer CMPA we will continue to support the cause forever, we are grateful for 20 months of amazing support and care from CMPAsupport and other facebook pages, always somewhere to turn in our hour of need, for advice, or a rant or just some shoulders to cry on, and now in turn, I can offer some advice, a friendly pair of ears and possibly a glimmer of hope to new parents embarking on a CMPA journey! Awareness is vital for the cause…..people are all too aware of how serious nut allergies or other well known allergens can be, so why aren’t people taking CMPA as serious? Some children to suffer anaphylaxis, rash, swelling, and other obvious signs….other children (like Bear) may seem ‘fine’ after consuming some dairy, but hours, days, weeks of painful stomach ache, sickness, diarrhea/constipation, fatigue, etc. a little while after consumption would suggest that that ‘little bit’ that ‘wont harm’ in fact did harm, A LOT!!!! It isn’t those who are neglectful who have to see the results, its mum/dad/carer, who have to listen to the cries, screams and constant grunts…..a little bit of knowledge can go a long way!

If all you do today is tell one new person about CMPA then we are getting a little closer to getting noticed!

CMPA – The final stage has begun!!

So, last night we began the final stage of challenging Bear’s CMPA!

Although Bear has been having yoghurts and cheese for a few weeks now, he has been a little under the weather so we didnt want to give him the added stress of testing the most dairy-est of items….COWS MILK!!

Last night we started by adding 1 oz to 7oz of his formula and he seemed to drink it without a fuss (we were unsure of how he would cope with the taste as well as any possible reaction!) We will up it again slightly in a few days, thinking it may be up to 2 or 3 weeks to switch from his formula to totally cows milk!!

We are keeping everything crossed that Bear can complete this final stage so we can officially remove his CMPA from allergen lists (which will make life easier for his childminder, who has to still check everything and worry about him joining in with baking, etc as he has the allergy, even if I say not to worry!! Also, easier for us as he will be able to join in like ‘normal’ children!!)

Please also remember that November is CMPA awareness month, even if we are CMPA free by then, we will still be trying to spread the awareness to remember the 19 month battle we have faced and to make sure that more people are aware of it so people no longer say the dreaded ‘a little wont harm’ that so many CMPA mummies and daddies hear from people who do not understand the condition properly!!

Greg Wallace – opinions?

as many people may have read, Greg Wallace made some some-what asshole comments recently about allergy sufferers…..he said that they should ring up and give 2 days notice if they want to visit a restaurant, that they cannot expect to turn up and make the whole place change the way they do something just for them…..now, I am not one of these parents who jump down the throat of anything slightly anti-allergy, I don’t take offence to stupidity very easily and don’t feel ‘victimised’ if someone won’t change what they do it suit my child, but this has riled me greatly. With stupid comments coming from such a high profile person in the food industry allergy awareness doesn’t stand a chance….if he had his way I would have to plan every time I wanted to go out for food with my child days in advance, no chance of a last minute treat for him! And for what it is worth Greg, I don’t expect the restaurant to change their ways to suit me, I simply ask to switch mash for chips, or ask to check the ingredients before feeding my child, surely this would be preferred to feeding him incorrectly and have him vomit or have violent, horrendous poos in the middle of a busy restaurant. Think before you spout utter shite Mr Wallace, your actions, unfortunately carry weight….for unknown reasons, after all you got famous by eating food, not actually cooking it!!

Non-Ige allergy poem – by Toni Jolin

I read this amazing poem written by Toni Jolin, a lovely fellow CMPA mummy about her thoughts and feelings about the reactions her child has, she wanted to share it with other CMPA mummies via facebook and has kindly let me share it. Sometimes, just because it isn’t a giant obvious rash as is expected with ‘allergic reactions’ it gets dismissed. Her poem sums up most of our experiences perfectly, with a little bit of added humour…..sometimes you just have to laugh otherwise you will cry!! Thank you Toni!!!

Non-Ige allergy poem.

Never did I think I’d know so much about poo.
Is it mucousy, bloody, does it look like glue?

What is this stink and why is it so?
The answer no one seems to know.

Countless visits to the doctors day after day
Only to be told ‘it’s a virus, a bug, it will go away.’

He’s arching his back rolling around in pain.
I’m looking over him hopeless and crying again.

This allergy thing feels like a constant struggle.
My gorgeous baby is even fighting a cuddle.

I just want want someone to understand.
Instead of passing the buck to someone else’s hand.

Or am I going crazy and insane
And perhaps I’m an nhs drain?

But I’m his mummy and I know best.
Even if he is failing every test.

Oops there we go again explosion number 4.
Time to clean up his bum, legs and probably the floor.

I just want to praise and salut all the mummy’s
Who are living with babies with awful tummies.

Winter brings new troubles!!

So, this mornings frost was a very unwelcome sight!! It is so cold, we have already been out to buy a little heater to warm our tiny shop so that bear doesn’t catch a chill. But even before getting out of bed this morning we have been faced with yet another first…..Bears first ever cough and cold!! I hate it.

He stirred at around 4am and was a little distressed so I put him in bed with us for a few extra hours sleep, at 6.30 he woke with a coughing fit and the worst temperature ever…..he felt almost burning to the touch! We gave him some paracetamol and a drink and stripped him off a little and he managed to bring his own temperature down enough to go back to sleep. When we got out of bed at 7.30 his temperature was at 36.8, so was back to being ok (although slightly high for bear). Breakfast was a struggle, coughing fits throughout, followed by toast filled sneezes and subsequent tears. Getting him dressed was also a battle…..not ideal at the best of times but when he is poorly and when it is cold he needs so many more items put on! He is currently on nap number 2 of the day (its only just turned 11am) he normally only has 2 a day. His first nap was lying in my arms, this one is in the carrier….he is being super snugly today.

We also seem to be reacting to the oilatum bath stuff we were trying for bear…..it doesn’t cause any obvious soreness to see but he screams non-stop for the whole of bath time (and bear normally loves the bath) and grabs viciously and constantly at himself. Back to the drawing board on the bath wash now, think we are going to try Aveeno next (was recommended to us by some lovely CMPA mummies), fingers crossed as the box of ‘trial and error’ products is getting full and costing us a fortune!

On the plus side, after a very long trip round my local Morrisons yesterday, I have found yet more food stuff bear can eat. His lunch yesterday (and today) consisted of a slice of fruit loaf buttered, a rice cake with biscoff spread on (his personal favourite), strawberries, blackberries and a few Ritz crackers, followed by a banana milkshake. He also had one of the fruit ‘school bars’ which he enjoyed chewing on massively. Then yesterday nanny did us ham and parsley sauce for dinner (mummies favourite!!) and no one even noticed the parsley sauce was completely dairy free, made with block marge and oat milk (apart from bear of course, but he was over the moon) followed by a delicious tray bake mince pie type pud (mummy had a dried fruit mix instead of mince meat as she doesn’t like it) bear was very happy. I am not sure who is more spoilt by nanny though, bear or mummy! What would we do without her

Please do not forget that we are in the last week of moovember – CMPA awareness month….please keep helping to spread the word.

Making links: waxy ears & CMPA

So, poor little bear has been poorly for just over a week now! I took him to the out of hours Doctors on Saturday morning after a particularly bad night where the doc said that his ears were very inflamed but she didn’t want to prescribe antibiotics until it was a last resort as she was worried about allergic reactions due to him having other allergies. She sent us on our way just to keep regular paracetamol and ibuprofen and lots of mummy cuddles. The rest of the weekend was not easy….he was very restless, poor sleep at night but wanting naps during the day, he did still try to force a smile but he looked grey!

First thing monday morning I took him to our regular GP, he didn’t hesitate to give him some antibiotics as it was still very sore in infected. He also questioned why the other doc didn’t give them last time, I explained why she didn’t, regarding his allergies and he reassured me not to worry, there was no increased risk of an allergy just because he was allergic to other things and there was no family history of reactions to antibiotics….we left the surgery happier that although he was still in pain, at least he had something to help him.

For the beginning of the week we could only manage half days at work as bear got very upset and restless towards the afternoon….there is only so much napping he can do in the carrier attached to my chest. The afternoons consisted of an hour long nap, half hour play time followed by 2-3 hours nap, only wanting to be cuddled up on mummy’s chest…..quite obvious he was poorly as he is normally a 2 x 20 minute napper!! On Wednesday bear went to nanny and grandad’s house for the morning to see his cousins and so that mummy could get some work done at the shop, got the text that he was back to his usual terror of a self getting up to all sorts of mischief, quickly followed by “maybe not, he is now asleep”, getting a little used to him just dropping due to exhaustion in the middle of things.

So, that is how our week has gone, but now to the point of my post:

This isn’t the first time we have been to the doctor regarding bears ears…he went through a stage of pulling on them a while back and the doc said that his ears had a bad wax build up. I have noticed that his ears do feel ‘sticky’ and full of wax often, we have had to put oil in them several times to try and combat it. I did read somewhere that children with allergies such as CMPA are prone to wax build up in their ears and subsequent ear infections. It was just something I read in passing so was unsure of the source or credentials of the statement so thought nothing of it. The curiosity got the better of me though and I went on a CMPA support group on facebook to see if any other CMPA parents have noticed the waxy ear problem and also a gooey eye, which bear suffers from daily since birth but the doctors wont do anything about until he is at least 1. I had at least 30 responses, all claiming that their CMPA child has either one or both of the same complaints as bear…many of them noticing a difference between their CMPA child and their non-CMPA children. Surely this is more than a coincidence?? It isn’t just bear I have noticed this on….I, myself, suffered from milk allergies when I was bear’s age, still do now from time to time and my ears are super waxy, to the point I clean them several times a week. This has driven me on to find out if anyone has ever researched it, to see if it is a genuine link between the two or whether it is just one of the worlds big coincidences as many of the facebook responses said that their GP dismissed any such link, unsure whether it was because it is nonsense or because it just isn’t a well known thing….I am inclined to go with the latter based upon the trouble we (and others) have had trying to convince their GP’s their little ones did have CMPA, not just a bad tummy/reflux/sickness bug/lactose intolerance.

Please do keep remembering that it is MOOvember – CPMA awareness month…..if everyone just told 1 friend about CMPA word would get around pretty quickly and it would help all the little CMPA babies and young children be safer in social environments.

Moovember….CMPA awareness month!!

So November is Moovember…..Cows Milk Protein Awareness Month!! The aim is to spread awareness of this very serious allergy. Luckily for us, Bears reaction is some what mild in comparison to some children, but the problem all CMPA parents face is the lack of knowledge and understanding shown by others. It doesn’t take a lot to make our children sick, “one biscuit wont harm”, “I’m sure they can have that, there’s not much dairy in it”….you would be surprised the number of people who forget that cheese, yoghurt, chocolate, etc also contains cows milk protein….let alone the ‘hidden’ dairy in things like cake, biscuits or even if something was fried in butter instead of oil. Restaurants are still particularly stressful, resorting in us always ordering bear a jacket potato with beans (checking 6 times that there is no butter on it!!) as waiting staff or even sometimes the kitchen staff don’t know if things on their menu contain dairy or not. If people knew just how serious that dash of milk or knob of butter could be for a CMPA child they may think twice about it!

People also should be aware of the difference between CMPA and lactose intolerance….apparently easy to confuse the two if you don’t have to deal with them day in, day out. Please, please, stop telling me about the ‘great’ lactofree range of yoghurt, cheese and milk that my son can have, because he CANNOT!!! He is not lactose intolerant, he simply cannot handle the proteins in the milk…..this means NO DAIRY!!

Although all CMPA parents learn to deal with their child’s allergy and it becomes part of daily life it still means endless checking of labels and keeping an eye out for the dreaded ‘new and improved flavour!’ but a greater awareness for all would make our lives that little bit easier when out and about. There is definite need for nursery and school staff to learn about CMPA as I have heard many stories about care not being taken to ensure that a CMPA child receives suitable food…..you would not give a child with a nut allergy food containing nuts, so why give a CMPA child dairy??

This is something that I feel very passionate about so will be wearing my CMPA awareness month ribbon to show my support and trying to spread the word to help all CMPA parents!!