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Struggling with practicalities of 12 m.o. & almost 4 y.o.

(50 Posts)
AngelDog Tue 29-Oct-13 12:10:14

Can anyone give me some tips on coping with the practicalities of life with two little ones?

I have a 12 m.o. and 3.10 y.o. I have (undiagnosed) chronic fatigue and find the practicalities of life very difficult. My boys and I have some complicated health problems which make things harder eg all our food needs cooking from scratch and takes a really long time to prepare.

Most of my spare time is taken up by researching our health issues and trying to find people to help us since the NHS doesn't deal with our problems as an identified 'package' of issues.

I am finding it really difficult to cope with the basics of food prep, laundry, keeping on top of basic organisation in the house.

I am very, very tired and rarely get to bed before 1am as there's just so much to do. The baby doesn't nap well - never for more than 40 mins and usually only in the sling, and then only if we're staying at home. He's in the horrible phase where 2 naps are too many and 1 isn't enough. He usually doesn't get to bed till 9pm or so due to a late second nap. DS1 is at home with me full time - nursery is not an option for various reasons.

My parents come & help for an afternoon a week, and my PIL come every week or two, but it is only limited help as I don't really get any extra time - though it does give the boys more attention and proper playing time. DH helps as much as he can but when he's home a lot of his time is spent with the boys as I don't get to give them much time or attention during the week.

We do get out of the house to the park for a short while most days, but we simply can't manage to get out to any groups. We have a couple of friends with similar aged children who each come over every week or two but apart from that I don't get much company. We spend a lot of time doing the shopping.

Any advice on how to handle the practical side of life?

ImNotCute Thu 31-Oct-13 21:54:01

Oops, sorry, posted too soon.... Spending hours on complicated food prep.

I googled the term you used "natural food chemicals" as I work in medical research but it all sounded quite unfamiliar to me. The list of symptoms for this intolerance is so long and varied, I hope you are absolutely sure all the extra effort is needed? I would strongly advise getting a 2nd opinion. It is a little worrying that the type of sites you're researching on seem to encourage you not to trust your own gp/ dietician. Actually the nhs is usually pretty good.

I hope the concerns people have expressed don't upset you/ make you feel defensive. Having kids of a similar age I can imagine how hard this is for you and I'm genuinely concerned for you all.

SoftSheen Sat 02-Nov-13 10:40:14

Hope you are all right OP brew

AngelDog Sat 02-Nov-13 21:51:54

Sorry to disappear - DS2 has been out of sorts and harder work than usual. Thank you for all the comments and suggestions. smile

Our food problems are real ones and are symptomatic of underlying issues. Our reactions to foods vary but include diarrhoea, reflux, eczema, and behavioural/neurological problems (eg DS1 starts biting himself, hitting people, destroying things within minutes of eating lots of foods). He also has 10 food allergies though they're different and we see the allergy clinic for those.

The woman we've been consulting with isn't a medical professional, but the tests are recognised medical ones and we've taken the results to our GP who is really supportive, and is aware of the generalities of what we're doing with supplements.

By his own admission he has been struggling to know where to refer us since (as he says) there is nowhere in the NHS which deals with the package of problems we have. Part of the problem is that lots of this is quite new science, only just starting to be researched in the US and not widely known about except in specialist fields that deal with problems which we don't actually have. The support groups for it are all based online and most people in them are struggling to educate their doctors about the details, especially since new information is being learnt all the time.

We've just got an appointment for DS1 at Great Ormond Street though, so hopefully that will be a step forward on the health front - and they may have some better ideas as to who would be helpful for me to consult with.

Food intolerances are better understood in Australia - anyone interested could have a look at the Food Intolerance Network website which is about some of the things we have problems with.

I've been trying to get DS2 to have just one nap, but it's mostly meant he wakes right up an hour after I put him to bed and he's then wide awake till about half past ten which has been even harder work.

I do think I need to do more to get food prepared the night before so I don't have to do so much in the daytime.

I definitely need to do online shopping, though some things I can't get from supermarkets eg we have to buy meat within a day or two of it arriving at the butcher's shop or we can't tolerate it.

CurlyhairedAssassin Sat 02-Nov-13 23:18:53

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Sunnysummer Sat 02-Nov-13 23:39:53

You sound like you are doing an amazing job to hold your family together under all of these stressors and responsibolities.

Like a number of previous posters, I am concerned about how anyone could continue to cope with all of this, and in particular about the advice you are being given. It is fantastic that you have a referral to Great Ormond St to get to the bottom of these things, because it sounds like some of your medical issues might have got mixed in with some red herrings, and the doctors will be able to get to the bottom of what's definitely causing the problems.

In your googling, have you ever come across health anxiety and vulnerable child syndrome? Both can be outcomes of dealing with parenthood and in particular parenthood of an ill child - we start to see them as uniquely vulnerable and it can end up severely restricting life for the family and for the child.

I would really push your GP for help and for diagnosis - for example, a diagnosis of ME (or another issue causing this) would also help you to access a lot more support. Have you been able to make your GP aware of all the challenges you are facing? Perhaps you could print out this thread to help explain clearly, it's easy to get flustered or sidetracked when there is so much on your plate and perhaps your GP has never had a full picture of all of your challenges. If your GP continues to say they cannot help then you may want to see another.

In the meantime I would strongly suggest diverting some of the funds for the private practitioner towards a cleaner and getting the ironing done for you. Perhaps you also have family who can come and help out? You are trying so hard and clearly loving so much, but noone should have to deal with all this alone. thanks

SteamWisher Sun 03-Nov-13 06:55:57

I think Angel, people are struggling because it is unheard of here and you've talked about non medical practitioners which immediately makes people sceptical.

I've seen you on sleep boards previously and know that you've had trouble with sleep so something isn't working.

But again I'd be wary of going down this road - its killing you from what I can see. I remember when dd was at her worst sleep wise, I cut out all foods (BFing) except rice, turkey and sweetcorn hmm as I was convinced at one point she reacted to everything. Her sleep was atrocious. I used to watch for cause and effect and see it when it wasn't really there. It meant I didn't actually tackle her sleep once she got a bit older as convinced myself it was impossible.

I think you need to make some changes - your DH needs to pull his weight because if his wife and kids are suffering then quite frankly spending time with the kids instead of doing housework is not enough. Get a cleaner in, get your ds into preschool (you didn't explain why not?) and take some life back!

SteamWisher Sun 03-Nov-13 06:56:50

*I will add that dd was intolerant to some foods and still is but not as much as I has convinced myself.

TiredFeet Sun 03-Nov-13 07:20:49

I feel exhausted just reading about your day. My son has multiple severe allergies and some intolerances/ eczema and I have an auto immune disorder that causes chronic fatigue and no way do I have the time or inclination to do an hours research a night. I am quite worried about how you have overwhelmed yourself with this. Is the research really necessary? Could your dh do it for you and ease the burden? Could your son go to pre school and take his own food in?

TiredFeet Sun 03-Nov-13 07:33:35

Also, I agree with whoever posted that actually the nhs is pretty good, not so much gp's but if you are seeing paediatricians/dietitians then they are very clued up about allergies/intolerances. You really shouldn't need to be doing all this research. And I think any one would have chronic fatigue symptoms on only a few hours sleep a night.

LovesBeingHereAgain Sun 03-Nov-13 07:45:23

If you can prepare and freeze for tge next day then you should be doing larger batches in one go.

Are you sure your GP is understanding and not just fibbing you off?

You cannot stay up that late everynight it is doing you harm, research sleep deprivation!

Your dh doesn't seem to feature much is he supportive/aware of everything/pulling his weight?

JeanSeberg Sun 03-Nov-13 07:52:21

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comewinewithmoi Sun 03-Nov-13 07:58:37

I don't get. It op. sorry.

ZenNudist Sun 03-Nov-13 08:24:46

Op mumsnet like to help but your problems are very specialist. To outsiders in the limited explanation you can do on mn it sounds as if you are suffering from mental health issues, which affects your care of your children.

You are clearly suffering & your life has become unbearable. Things should be so much easier. I can't tell if you have a genuine food issue or are seeing problems where there are none. Certainly you need to be honest with your doctors about what you up to not just in terms of some generalities But also in terms of the toll it is taking on your life.

Please seriously consider if the 'cures' you have found through 'new science' are doing more harm for you & your children than good.

AngelDog Sun 03-Nov-13 08:47:23

Curlyhairedassassin, protein foods (especially meats/fish) have chemicals called amines (eg histamine) which build up in the food between slaughter & eating. Some people's bodies have difficulty breaking them down.

You can read about them in these peer-reviewed scientific papers:

Control of Biogenic Amines in Food—Existing and Emerging Approaches


Thank you for reading carefully. smile

HoleyGhost Sun 03-Nov-13 09:34:09

Please, please explain all of this in detail to your gp or another gp or your hv.

What does your dh think of all this?

CurlyhairedAssassin Sun 03-Nov-13 09:38:20

I'm sorry, OP, I shouldn't have been so dismissive perhaps, and instead replied in the way some others have. To ME, this all sounds excessive, hence you are coming across as a hypochondriac. I'm sorry if you feel this is genuinely not the case and we are dismissing valid concerns.

But I don't recall reading about exactly WHAT these symtoms you and the children are experiencing are? I know you mentioned about one of the children biting himself and hitting after certain foods - have others witnessed this? What food is it? Can you be certain it is not just a coincidence and it is all down to typical toddler behaviour/ill-considered behaviour management on your part?

What are your exact symptoms? For what foods? When did it all start and who was the first person you consulted about it?

Please find time to try and explain as you are going to come across disbelieving people like us in life when you start telling them this stuff as it is all so extreme.

CurlyhairedAssassin Sun 03-Nov-13 09:52:30

Ok. I have had a quick scan through the top article you mention. It refers mainly to it being a problem in subsistence populations which do not have adequate temperature control of meat and fish, hence allowing these histamines to build up. I'm not sure where you live but I'm pretty sure that if you are in a westernised country that any meat or fish you will consume will have been adequately chilled by law, to prevent this chemical build up which you are saying you have an intolerance to.

I am starting to think that you are perhaps seeing things which just aren't there, OP.

Incidentally, the article mentions that even with chilling foods a very small amount of these chemicals may be still present. It also mentions that antidepressants can make it more difficult for some people to tolerate these chemicals. So I was wondering if you are on antidepressants, if you GENUINELY feel there is a problem with this.

ilovemountains Sun 03-Nov-13 10:34:51

Have you tried to get your oldest into a pre school? You can provide the food. Presumably he will be starting school next year, a pre school might be excellent for him, particularly as it sounds like he doesn't get to socialise or play much. That would free up a lot of your time.

SoftSheen Sun 03-Nov-13 10:50:05

Could you buy the meat fresh, and then freeze it in portions so that you can take out a new one each day? That way you could visit the butcher just once every week or two.

But I really do think that you should push hard to be referred to an NHS dietician, in addition to the other practitioner you are seeing. A qualified dietician will be able to help make sure that your children's diets are properly balanced and suited to their needs, at such an important time in their development.

I am not medically qualified (probably no-one on this thread is), but it seems obvious to me that making sure everyone's nutritional needs are well met, and that everyone gets a decent amount of sleep, can only have a positive effect on health, whatever the underlying issues.

Good Luck smile

AngelDog Sun 03-Nov-13 11:05:50

Thank you for all the ideas. We are going to continue to follow things up with the NHS. I should perhaps have explained that the reason we were pursuing an alternative route to investigating all of this is that the NHS have been trying to work out why DS1 reacts to foods for the last 2.5 years, but without any progress so far. Thanks to the people we've been consulting with and the research I've done he is now able to eat a number of foods he would previously refuse because they were making him ill. His diet is broader now than for much of his life because he self-limited what he ate (because of the intolerances, though we didn't realise that for a long time).

The team he has been referred to at GOSH include dieticians and nutritionists so we will have advice from them.

Friends and family have described the change in his behaviour since working on this as 'miraculous' and people are always commenting to me about how good it is that his long-standing really bad facial eczema has cleared up so I'm pretty confident it's not just my imagination.

Thanks again for all the suggestions; I'm going to go and get on with sorting out the baby now. smile

Sunnysummer Sun 03-Nov-13 11:16:56

OP I really hope that some of the less supportive messages on this post don't lead you to dismiss all of us.

None of us can fully understand the complex challenges that you and your family are facing without specialist expertise and more detail than we can get on a forum posting. However I do have some experience in this area and very, very strongly urge you to really pursue this with your doctors.

I would suggest making a full list of the issues you have identified for each family member, along with all the current treatments you require including supplements, dietary changes and treatments by all practitioners (traditional and alternative), plus a sample schedule to communicate the daily time you are spending to meet all these requirements.

If you present this to your GP (or possible a new and more active GP) and the doctors at Great Ormond St it will really help them understand the magnitude of what you are going through. It will take some time, but is worth sacrificing a few hours of research for, as it will be even more helpful in getting the support you need.

With more official diagnoses for all of you - whatever they turn out to be - you and your family should become eligible to access more practical and medical support. With extra help you will be able to spend some extra time playing with your children rather than working nonstop to put food on the table, and with greater confidence in diagnoses you will be able to catch up on sleep instead of having to research late into the night.

thanks for you holding it all together in the meantime, and for your family too, you clearly have it very hard right now. Can your family take over cooking for a day or two while you take the time to play with the DCs and catch up with your DH? I bet you all miss one another. Unmumsnetty hugs. ((()))

CurlyhairedAssassin Sun 03-Nov-13 11:24:20

Thanks for having the patience to explain your situation more fully. Sounds very complicated so I guess even if the thread should revert back to its original intentions of suggesting advice to cope with the practicalities of life with young kids then it would be difficult to offer any suggestions that might work for your unique situation.

I hope you find a resolution to your problems soon.

NorthernShores Sun 03-Nov-13 11:25:33

I have ME and there I absolutely no way I'd be able to research in the evenings and stay up until 1. There is also no test for ME (you say you've been tested?). There is criteria a consultant will look at before diagnosing you and locally send you to a clinic. They will absolutely recommend good sleep hygiene - going to bed at the same time each night (not 1 !) and getting up at a regular time.
We were also recommended a normal balanced diet. My worry for you is that extreme tiredness can exasperate depression or other mental ill health and might ad triggering anxiety.

I would definitely get your older one into a pre school. You can prepare the lunch or not stay for lunch. I know where I was so exhausted I was desperate for my oldest to go so they got some time to safely play with others regularly even if I wasn't up to taking her to the park or friends that day.

NorthernShores Sun 03-Nov-13 11:28:42

Oh and what sunnysummer says is fantastic advice too. Have a full list of what you are doing and why when you go in and include what you have been recommended and why from alternative, mainstream and your internet searches. It will help them to see the bigger picture.

Good luck - hope you find it useful and that they can help with the diet. Please make sleep a priority.

SteamWisher Sun 03-Nov-13 14:24:53

Good luck OP. it sounds horrific - an incredible strain on you. Sorry for my earlier posts being unhelpful. Please do look after yourself a bit more though!

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