Trials: time to give it up

I'm on a journey to get my baby better. I'm following a path, except I can't see which way to go, I'm being guided. Some parts of my journey have been straight forward and I've been able to see clearly the route I was to take. Other parts have been like shortcuts that have been rough to go through, but enabled me to go the right way more quickly than another route.
Now I find myself stuck, as if I've encountered dense fog that blocks my vision. I know I'm on the right path, but I don't know what to do next.
I misinterpreted this as silence, but after a conversation with my wise sister yesterday I now recognise that i need to wait. I have to carry on doing what I know to be right with my baby ... And then wait.
I don't know what I'm waiting for, but I don't need to know. I just need to know that this the right thing to do.

As you could probably guess from my last post I had reached a point where I can go no further. There was nothing else I could do. I saw my Perrin practitioner (for my health). Whilst she gave me a much needed massage I poured out my worries and cried all my tears out, she told me that I had to 'give it up'. Don't do any more research, and focus that attention on myself. She also recommended a nutritionist who specialises in these conditions and said I should let someone who knows take over. It all made a lot of sense to me, yet I didn't feel excited as I usually do when I think I've found a solution. I mulled over it for a day or so, and couldn't fathom why I didn't feel anything. I still don't know why. I don't feel like this is the next step for us, although I would love to 'give it up' to someone who knows.

I am going to 'give it up' though. I'm going to stop researching and trying to find solutions, for now. I'm going to carry on the low allergen diet for myself and baby. I'm going to continue giving him a low dose of omeprazole. I shall continue to ease his pain and help him sleep in anyway that is possible. But I will no longer spend hours researching and stressing about what I can do. I will wait to see what my next step is. I will 'give it up' to someone who knows .. The Lord.

Struggling to put the puzzle together.

You know what? I'm tired! I'm tired of having to do this by myself. I'm tired of spending my waking hours trying to work out how to ease my baby's pain. I'm tired of eating a restricted diet for it not to solve all the problem. I'm tired of endless trips to medical appointments and me having to tell them what the next step is. I want someone to tell me what the problem is and how I can help him. I'm tired of trying to give him a milk that tastes like poo. I don't blame him for not wanting it. I'm tired of the relentless sleepless nights. I'm tired.
I want to give up. I want to say 'I've done my best, I've tried, I'm stuck now.'

But I can't. If I don't, who will? We've got to be nearly there. We've figured out he has allergies/intolerances. What's the last piece to the puzzle?

Neocate update : eww

I greatly underestimated the awful taste of Neocate. Yuk, it tastes like rotten sprouts! Like a good mum I took a sip first .... And have refused to ever put it in my mouth again. Unfortunately, that's the only option for my son, other than breast milk. He was willing to try it, he thought the bottle was a novelty, but refused any further sips. I sneakily put it in his 4 grain cereal this morning. Yesterday he wolfed down the cereal that I made with cool boiled water, today he took one mouthful then refused anymore. I cleaned out the bowl and made a fresh batch just with water, which he refused to open his mouth for.
Oh dear! Think we might have a struggle on our hands. I've done more searching and discovered that dieticians and doctors have suggested to other mums to use strawberry nesquik to try and disguise the taste, so I'm definitely giving that a go. But can it disguise the awful taste? Do strawberries taste nice with sprouts?
I remember once, somebody on Facebook made a negative comment on another mum they'd seen at a playgroup who let their child drink chocolate milk from a bottle. I'm only a second time mum, but I think nothing now of doing things other mums would look down on me for. I'd let him drink strawberry milk forever if it meant he'd be fully cured! Since my son's reactions to food have gone, he has become more settled. He can go two hours without waking now and even slept on his front at one point last night. His skin has cleared up nicely and the doctor remarked on how his stomach felt more settled and less bloated. He's pooed everyday and is VERY rarely sick. If we could just crack the silent reflux then I think his sleep would not be disturbed. Neocate might be the answer.


On another note, I took my toddler to his first hearing test yesterday. He has no problems with his hearing, but the health visitor wanted to rule it out as he doesn't say quite a few sounds when he talks. It was lovely to spend some on on one time with him. It doesn't happen often now, but it wasn't that long ago when it used to be just me and him when daddy was at work. I absolutely love his company. He's great fun to be around and well behaved. The health visitor asked if we were going to take him to nursery early, but I just can't bear to part with him till I have to. He's kept my sanity these past few months!

Feeding baby: time for a change?

In my purse I have a prescription for a formula that will be suitable for my multiple food protein intolerant baby. It's called Neocate and to buy it without prescription it costs £30-40 per 400g tin. Not a lot of GP's will prescribe it due to the cost, and I was prepared to go into my GP with my guns blazing in order to get this prescription for my baby. As it turned out, no guns were needed. My GP wrote the prescription without batting an eyelid and told me how to order repeat prescriptions if this is successful. What a blessing!

So now I have the prescription and the daunting task of making the transition lies ahead. I wanted the formula because although we've seen improvements since I've gone dairy, wheat, egg, nut, fish, tomato, citrus fruit free, my baby is still unsettled in his sleep and still has silent reflux. His diet is so basic that it can't be a reaction to his diet, so it must be mine. My health has deteriorated too, and breast feeding is taxing on my energies. I could really do without this added drain on my health as well as the freedom to allow other people to care for my baby.
Now I've got the formula all my hesitations are surfacing. I will miss feeding him. It's been a wonderful bonding time for us both and I have enjoyed the closeness very much. I worry that it will distress my baby, but I plan on making the change gradually so as not to distress him too much. And then there's the apparently awful taste of the stuff. I'm not quite sure how I'm going tackle that one!

My dream is to have a happy and content baby that sleeps well (for his sake as well as my own). Maybe the fire of my hope that we'll get there isn't burning bright right now, but it is still there flickering, gaining strength as we jump each hurdle.

The new path - allergies/intolerances

Finding solutions to a problem is rarely a straight course, as has been the case for finding solutions to our baby's condition. Looking back at my blog and thinking about our journey so far, there have been many times I think we may be on the right path, only to find that it has led us on to a new path. For instance, the 'back to basics' diet we tried sent baby's symptoms through the roof and we realised that he suffers with non IgE mediated food allergies and intolerances with reactions that last for DAYS! What does this mean for us now then? What's the new path? I'm going to try a low histamine diet as he has shown reactions to some foods that contain histamine. He can't tolerate dairy or wheat. He's shown allergic reactions to egg and nuts (?) and is still reacting, which must be to foods in my diet. Through researching on the net, I've found foods high in histamine, in a nutshell, are:
Processed meats
Fermented foods
Citrus fruits (banana is also suspect, so will have that moderately)
Dairy products
Chocolate
Wheat
Tomatoes, aubergine (eggplant), spinach
Fish (unless gutted and eaten fresh)
Alcohol ... Not that I drink it, but it might be useful information for those who are interested in this diet.

  I've also found a fantastic piece written by doctors on Australia to do with babies with allergies and intolerances. I'll hopefully be able to work out how to share a link successfully on here, for once, and post it! It describes my baby well, and how best to wean him. If the link doesn't work then google the 'food intolerant allergic baby' and it should be the first link.

http://home.vicnet.net.au/~disa/Food%20intol-alergic%20baby.html

Baby update

Daddy and grandad are swimming with the boys. To most, this event might be enjoyable but insignificant. In the life of MY baby this is a significant event! I can count on one finger the amount of times me and my baby have been apart for more than 10 minutes, and that's because he was sleeping. Right now I'm sat on my own, arms free, legs up, watching my boys splash in the water with big smiles on their faces. My baby doesn't even know I'm in the same room and he's happy. No money in the world can buy this feeling - priceless! I know daddy will appreciate the time with him too!


On another good note, these weeks of hell with reaction after reaction have shown that my baby has allergies and intolerances. That's right numerous. Weaning him is proving to be a minefield where the wrong foods can cause wheezing, rashes, increased reflux, sleepless nights, and irritability and clinginess. Even the medicine I've been giving to ease his teething pain causes reactions. It's been a hard slog, but it's helped us to see that extra help is needed. Blood tests are being arranged and dietician appointments have been set up. Hopefully, we'll be able to get the right sort of help. Won't it be great if it's as easy as that. Unfortunately, my own experiences and the experiences of others in similar situations have shown its not as easy. There is a world of different foods out there for us to try, which could a mean a whole load more of these hellish weeks. I'm breast feeding my baby still and whatever I eat can cause these reactions as well, so im on a restricted diet and I have to tread cautiously when trying new foods.

While on the subject of breast feeding, when I had my baby my goal was to breast feed till 6 months and then switch to formula. As it became apparent that baby had problems I continued to breast feed because my research showed that it was best for him in his condition. Now allergies and intolerances have come to light we can not give him regular formula even if we wanted to. There are formulas for babies who have multiple food intolerances and allergies, but they cost £40 a tin and last 2-3 days depending on the appetite of your baby (mine can feed constantly if having a bad reaction). There is no way we could afford to give him this, and GP surgeries fight every inch of the way not to give it to people because of the cost (quoting from experiences from an online forum). And so, we could be looking at breast feeding for the long term yet. As much as I advocate breast feeding for babies, I do have reservations when I think of breast feeding past one year (for myself, I hold no judgement on others doing it). However, I've thrown aside all the rest of my 'good parenting' rules out the window due to soothing and trying to ease my babies pain, it looks like I'll have to throw out my reservations on this too.

I'm not sure what's next on the road to recovery, but the past few weeks of torture have hopefully brought us one step closer!

You are not alone

I have consumed so much information about babies, their digestive systems and conditions pertaining to it that I am becoming overwhelmed by it all. There's so much to take in and my baby has so many symptoms that when I think I've reached the solution a spanner is thrown in the works and I'm left exhausted, confused and clueless again. I have one goal, and that is to find the solution to ease my babies pain, to make him happy, healthy and independent. My gut feeling tells me that he can get better. I spend my waking and sleeping hours trying to find out how.
After an emotional day last week I was told 'This is it, Jen, there isn't a solution you've got to live with it'.
I spent the boys nap time that day in earnest prayer. I wanted to know if I really was wasting my time. Had I been going down the wrong path this whole time? I read a general conference talk, which I can't find or remember now, but at that moment it was perfect. The speaker said whatever is important to me is important to Heavenly Father. I will know what is right and I have to stand up for it. My prayers will be answered.
The next talk I came across was the privilege of prayer by J Devn Cornish http://www.lds.org/general-conference/2011/10/the-privilege-of-prayer?lang=eng
Again, the message was repeated, what is important to me is important to Heavenly Father. I need to pray and my prayers will be answered. My job is to accept the guidance and recognise how my prayers are being answered.
I have felt immense comfort this week, knowing that when I felt alone in my quest I am not alone. I need to fine tune my abilities to recognise the promptings of the spirit to help me sift through the information I receive to try and find the help my poor baby needs.
This journey is painful, exhausting and relentless, but I need to remember that I am not alone. What a comfort!

Desperate times call for desperate measures

After the last attempt at doing a restrictive diet I said that it would take a lot for me to be able to succeed at limiting my diet. I was sure I wasn't going to attempt it again, it was too much hard work. I needed comfort food to help me cope with life.
Well, times have got desperate and it appears that a diet free from dairy, soya and gluten is the only option to improve my deteriorating health and a last ditch attempt to help my baby before they dose him up on all sorts of medicines as just going dairy free hasn't shown significant improvements. In my book, that's motivation enough to try it again.

The key this time is that I'm going to be organised. Before I begin I will not only have meal plans for at least two weeks (aiming for a month) but I will plan what snacks I can have and what breakfast and lunch options there are. Preparation is essential for success!

I'll make sure to post my menu's, and foods that I can eat, so that others who are attempting something similar can refer to it.

Dairy free update

My name is Jenny and I've been dairy free for 5 days.

It's actually going really well. I haven't found it difficult and the motivation that it might actually help my baby is spurring me on. So far we've noticed that the bloating in his stomach has lessened, he's pooed more, and has slept for longer periods at night. All very positive. On the downside, he has become even more clingy and irritable, harder to get to sleep amongst other symptoms (all the usual arching, coughing, wheezing, face rubbing etc). The hard part is trying to figure out what on earth is causing him to be worse in some things. Is it a reaction to the new food I'm weaning him on? Is it teething? I'm flummoxed!
The plan now is to go back to the 'safe' foods I know he can tolerate. So far this is plain 4 grain cereal and butternut squash. Someone gave me a traffic light system to introducing new foods, so I'll now follow this:

GREEN - Courgette, melon, parsnip, pear, pumpkin, squash, swede.
AMBER - Avocado, blueberry, broccoli, banana, carrot, cabbage, cauliflower, leek, mango, peach, pepper, spinach, sweet potato.
RED - apple, Blackberry, citrus fruits, onion, pineapple, raspberry, strawberry.

A good idea, in my opinion, is that every baby born should come with a detailed manual. It would come in very handy!

And so it begins ...

After 11 days of just breast milk we transitioned our little baby back onto solids today. I have to admit, this is a journey that fills me with trepidation. The last time he was weaned he was on omeprazole as well and with each new food his reflux symptoms seemed to be spiralling out of control. I didn't know what the culprit was - the medicine or the food. So we stripped all back and we are starting from the beginning. Meds free! We've not noticed a difference without medication. He's no worse, but he's no better either. Some days are bad, some days are worse. I've kept a diary of his symptoms so I'll hopefully be able to recognise if any foods are causing an increase in his reflux.

I'm dreading weaning again because I have to live with the consequences of what introducing a new food might mean to baby. My body feels like its running on empty on a good day, so I delve into negative energy on bad days. It just so happens that we are starting on such a day. My baby constantly fed and wriggled and squirmed till 2 am, unable to settle. Then once he settled it was the usual 30 mins - 1 hour wake up till morning. I'm not sure what caused this. I can only think it was the mild chili con carne I had for tea as that was the only difference to either of our diets. However, we plod on.

I've began weaning baby this time on Plum 4 grain cereal. The grains include quinoa and amaranth. Both grains I was allowed when following the strict diet for my ME. He ate it well and finished the portion I gave him. 3 hours later I've seen no difference to his symptoms. We'll carry on with this for a few days and gradually increase the number of meals, so that his delicate digestive system isn't over loaded. He got constipated last time and administering a suppository is something neither of us want to repeat in a hurry!

One other thing i need to mention is the miracle of the sling. Why had I not tried this before? A kind friend has let me borrow hers and what a difference it has made these past three days! Carrying baby in a sling has kept him upright (essential for a refluxer), allowed me to have TWO (yes, that's right TWO) hands free, and enabled me to shift the weight bearing from my arms and wrists, to my shoulders and torso. I still need to pace baby to sleep, but it has been easier and a few times he's slept while I've been doing other things! Needless to say, I'm searching eBay now for one of our own.

This time next year we'll be millionaires ..

Like del boy I've found myself living for the future since I became ill and more particularly since having a reflux baby. I don't wish for money, although that would be nice. I find myself thinking of the day I'll be dancing again, running in the park with my boys. And most of all I look forward to the day that I can go on a proper date with my husband. We got together when I was very poorly and then children came along and zapped all my spare energy and our time. So dates are very few and far between.
I've been wondering recently if this way of thinking is healthy. But what do we live for if we don't have a hope for the future. The thought of the weekend gets us through our working week. The warmth of the summer helps us endure the wet and cold of the winter. If you're religious, like me, the promise of an eternal paradise with our friends and family waiting for us after this life sustains us through the hard times.
But we live in the present and if we're to get through it we have to find some enjoyment in it. They are precious moments that provide us with respite that propels us to keep going. They may be only brief, but they're enough. After a hard night of waking up countless times with my baby I awoke to his little hand on my face and a smile so wide greeted me as I opened my eyes. It didn't matter how tired I was, that scrumptious little face cheered me immensely.
Finding joy in the present can be difficult, but from experience, it's so necessary. Unfortunately, the power to have joy is within us. We are usually the ones that have to change to experience it. I say unfortunately because a lot of the time I want my circumstances to change. However, what I need to remember is that I'm fortunate to have the ability to be happy despite my circumstances. So, I'll be hunting daily to find these moments. Being happy is so much nicer than not!

Climbing mountains

For the first time in a long time my M.E. has taken second place to the condition of my son. I've not known what to write in my blog because my mind is constantly on 'reflux'. I'm a 'reflux mum' now as well as an M.E mum.
Caring for a refluxer means
1) Keeping him upright after every feed. This means carrying him, as baby bouncers and walkers can aggravate his digestion because of the pressure.
2) Pacing the floor holding him in upright positions trying to get him to sleep, but eventually feeding him off to sleep as only the milk will soothe the acid indigestion that arises.
3) Holding him in an upright or side laying position whilst sleeping - day and night.
4) Only getting 40-60 mins sleep at a time and then nursing him back off to sleep by soothing his tummy and throat.
There's more involved, but the list is to show the physical requirements of dealing with a child with reflux, so its not surprising my condition has deteriorated somewhat.
A friend asked me what M.E felt like the other day. At first I wanted to say it feels like the flu. But then I remembered going on a hiking trip in Utah a few summers ago. When we had hiked the mountain for a few hours in the heat I became light headed, My unfit body was weary, heavy and slow to move and my muscles ached. I thought this described how I felt every time I do something. If I do too much it also feels like I have the flu (without the runny nose). My glands swell and I can't regulate body temperature so I feel either hot or cold.

Every day I climb that mountain now. I have to, I have children to take care of. But thankfully, I don't have to do this alone. So many angels in the form of family and friends give me a hand to hold as I climb.

Finding strength beyond my own

My time and energy recently has been spent mainly pacing the floor with my 5 month old trying to pacify him. We've had, and are still having, doctors appointments and hospital appointments to try and find something that will get him better. Nothing seems to be working, and so I've even resorted to giving up chocolate (well, dairy, but I'm only bothered about the chocolate!) to see if that helps. I've not noticed that it makes too much of a difference. I've read it might take one to two weeks to notice a change , eeek! It's a good job I love him!
I've been through a bit of an emotional roller coaster these past few weeks. I always feel down when my health takes a turn for the worst, but having to deal with a sick baby who requires so much attention and energy and little sleep was a real test to my limits. The situation hasn't changed to make me feel better. I did. I realised it was no good praying for a miracle to get my baby back, instead I pray for wisdom for myself and the doctors to discover what will help. Then I research his symptoms, I look for tips that other mums use to cope. I pray for strength to handle the pacing and rocking, the lack of sleep. I accept and even ask for help. This is a very big step for me. Nearly five years of illness has not made it any easier to receive help. I prioritise where I will spend what little energy I have. The housework and food preparation are put on the back burner, whilst I try to give time and attention to my older son and husband when baby permits. Changing my attitude towards the situation has helped me cope with it a hundred times better than a 'why me' attitude. It's amazing what strength you find where you thought there wasn't any!

Intro

As I sit and watch my three month old kicking and gurgling in his play mat, whilst my two year old pushes his cars around the floor wearing only a vest and pumpkin hat I wonder what life would have been like had I not made the leap of faith to have a baby nearly three years ago.

Back then I suffered quite badly with M.E/CFS. I was barely able to walk or even sit up without feeling extreme fatigue and pain. Even though my husband and I had heard that pregnancy may cure my condition, we found little evidence to support it. We both desired to have children, but found the decision a hard one to make. Could I risk bringing a new life into the world when I could barely take care of myself? After lots of thought, discussions with family members and prayer, we decided to take the plunge and have never looked back.

I hope my blog about life with a family and M.E/CFS will aid others who are also making this decision, and give hints, tips, support to parents and those in the same boat and provide insight to the condition to those who know little about it.