Tuesday, 31 March 2009

astounded...

We went to bed at 10pm last night, some 3 hours after Jasmine. The little monkey woke up at 11.30pm, but I was convinced it was much much later than that. I gave her a quick squeeze and plonked back into her cot with her muslins and teddy and ambled back to bed myself, fully expecting to be up again in an hours time at most.

The alarm went at 6.30am

We had either crashed out and ignored any cries that Jasmine had made, or she had gone through without any more stirs.

SHE SLEPT THROUGH!

Steph popped in to be greeted by a wide eyed, cheery little baby. It's so refreshing! Steph changed her nappy while Jasmine amused herself with a book. ...A BOOK! ...not tearing at her skin!

What a difference for only one application of the ointment.

I'm still concerned about using steroids, but I'm incredibly thankful for a night off.

Monday, 30 March 2009

some tests at last...

Well, it's been a little while since the last post and today has included enough new stuff to warrant an update. Over the last week or so Jasmine's skin has been bothering her greatly. It always coincides with her teething, but none the less, when she's not distracted (ie trying to sleep) she's miserably itchy.

Despite this she puts on a brave face and had a great time at Hatton Country Park over the weekend.


She Particularly loved the tractors, though the birds of prey brought lots of pointing and exclamations of "Sa!" and "Eo!" All before she eventually passed out and gave Mummy and Daddy a couple of minutes respite! :D

Her general development is going well. She isn't yet walking alone, but is growing ever more confident in her cruising abilities. Things within reaching distance are fair game as far as Jasmine is concerned, normally associated with a good deal of babbling and pie-eyed expressions of innocence! ;)


Today's excursion involved a trip to a new paediatrician. After summing up Jasmine's history to date and tackling the usual unvaccinated status we started to assess where to head with Jasmine's treatment.

Despite our dedication to being as natural as possible it is clear that currently Jasmine is just too uncomfortable to sustain this wishful thinking. In light of this we have reluctantly decided it is best to return to steroids, at least for a short while. The paediatrian recommended a 1% hydrocortisone ointment (a little more greasy than a cream), combined with a new emolient: Cetraben. We've not done a whole lot of research into Cetraben, though at the moment I think we're all approaching our wits end and will try practically anything, if only to get a couple of nights unadulterated sleep!

We also went through the traumatic experience of have some blood tests done for Jasmine. The nurses were astounded at how strong she was, causing them to fail taking the bloods from one arm and needing to call in support to pin her down. It took four adults in the end to stop her spontaniously combusting!! Not pleasant. Still, the tests should hopefully confirm her calcium levels are ok (in light of her rice milk diet), bone component levels (indicating potential vitamin D issues), and test for coeliac disease.

We've also been given a couple of dinky little tubes to spoon in a couple of stool samples. Yummy! We have just one hour to get the samples to the lab before they spoil ...who would have thought that poo could spoil! The stools will be tested for malabsorption and faecal elastase. Hopefully this will confirm our suspicions of issues with her gut.

So tonight was the 1st night of the new regime. We don't get the new emolient until tomorrow, but used Aveeno instead. She seemed to accept the new steroid at least, though she could equally be relaxed as she had a nice bath beforehand.


Hopefully all will go according to plan, hopefully we'll get a few uninterupted hours of sleep!!


Monday, 23 March 2009

Happy Baby =]

We spent the weekend with Jasmine's Grandma. The weather was great so we naturally had to exploit it and get Jasmine off to the park :D


She loves the swings and slides, though she's not too sure of the roundabout.


Who'd have thought a empty packet of organic raisins could be so amusing :D


I couldn't resist showing Jasmine Sporting her 'bed-hair' look at some ridiculously early hour on Sunday morning :D


Jasmine loves her new trike. Though truth be told I think Daddy is rather fond of it too!


Thursday, 19 March 2009

guinnea pig

Jasmine has, at least in principle, been accepted on a trial. The trial is to assess whether the use of softened water would have any impact on her eczema.

Softened Water Eczema Trial

It's early days yet and we have yet to have Jasmine checked to see if her eczema is 'moderate to severe'. We also need to have an engineer out to see if they can even fit the softener. Either way, it's an avenue to follow. I must admit though, I am a little concerned as to the risks of the salinated water effect. More research required methinks.

On another note, we've received the latest batch of supplements from the kinesiologist, all aimed at tackling the candida and leaky gut and strengthening Jasmine's tummy.

We'll still be taking the flower remedy - Daffodil formula FF14 (one pill, morning and night). We'll also keep the New Vistas Microflora homeopathic drops (x4 drops morning and night) and the BioCare Acidophilus Plus (1/4 teaspoon with her evening milk). The new additions are New Vistas Baby Thrush homeopathic drops (x4 drops morning and night) and New Vistas Digestive Enzyme Liquescence homeopathic formula (1/4 teaspoon before her evening milk).

We'll see how all this pans out! Fingers crossed :D

Hope

Last weekend we decided to treat Jasmine with a trip into Stratford to see a butterfly farm. The environment was possibly not the best for her skin! Really, really muggy! But that asside, she had a great time, pointing at everything, fascinated as the butterfly's landed on her and flitted away again. She loved the little quail aswell that were running around on the floor. She'll probably get more out of trips like these as she gets older, but it was great to see her engaged.



We invested in a new pair of shoes. The others were her only pair and they were getting a little smelly from constant use. Jasmine puts her shoes to good use and her 'walking' is coming along nicely, still not solo, but she's a deft hand with the stroller.


All in all things seem to be improving. Her skin does seem to be gradually getting better. She is still rough across the shoulders and in various places around her trunk. Her itchiness peeks when she is tired/frustrated. Baths are less of a headache, though the changing routine in the morning and before bed is still a traumatic experience.

As soon as she is dressed/ready for bed though, she perks up and it's as if nothing had happened! She still is up a number of times in the night. Last night was for a feed though, so it could be that the rice milk needs a little bulking out.
We have plans to see Grandma over the weekend and we've just bought her a trike! (with a parent control thingy). Looking forward to getting her on that and down to the lakes. Let's hope the weather holds!!!

Sunday, 15 March 2009

More Flare

Jasmine is flaring again :(


We suspect it's massively linked to teething but I figured I would document her circumstances for this particular flare in case we can ever find any common ground.

So...

Teething heavily. (2-4 coming through)
No dairy/egg/soy.
Rice Milk.
Home cooked meals. (Salmon & Veg, Beans & Mash)
Suspicious of too many carbohydrates.
Suspicious of tomatos.
Suspicious of Hazel. (dog)
Very thirsty to start with.
Feeling very very hot. (Fever)
Body creaming in Aloe Vera.
Face washed with salt water (Himalayan) and creamed with Calendula.
Just starting to recover from tummy bug.

Saturday, 14 March 2009

The tour

Well it's only been a few days since the last real post but it feels soooooo much longer, the last post really sums it up.

We had another meeting with the dietician where we let them know that we had stopped all dairy (including the hydrolysed formula). Our mission with the dietician was to address whether this would provide the sufficient nutrients for Jasmine (alongside her already varied and healthy diet). We were asking because Jasmine seems to fit into clothes where the labels suggest they're suited more for a 6-9 month old. I know Dairy is the major contributer to the nations 'tubby' babies and clearly being dairy free will have an impact on her weight, but we felt we have to check.

Is essence, Jasmine's varied diet doesn't ring any alarm bells for the dietician, and despite not having any dairy derivatives she is not concerned.

We wanted to pursue some tests aswell as so far much of our approach to tackle Jasmine's eczema through diet seems involve alot of 'guesswork.' The tests we had in mind were for Leaky Gut, any mal-absorption issues and possibly for Candida.

Apparently this is beyond the scope of the dietician though... >.<

Immediately following our wonderfully productive meeting with the dietician we had another appointement with our local GP. We had a number of issues we wanted to bring to his attention; Jasmine's weight, her walking style, a rattly chest she's had for a little while now, and following the dietician's ineptitude, advice on tests. The Doctor is the joint owner of the practice and his attitude to us has usually been acceptable. This time he was merely arrogant.

We weighed Jasmine on the Doctor's scales (normal adult ones) and gained a not-overly-accurate 8kg reading, placing Jasmine on the 2nd centile. ....ie tiny. The Doctor didn't think it unusual. <frustration> Jasmine had gone all afternoon so far without a nap, it was almost her dinner time, she's teething like a crazy thing, she's still sickly and it was very hot in the Doctor's office. Asking to see Jasmine's chest to assess any rattle seems harmless enough, but exposing Jasmine's skin = itchy. exposing her skin with the prevailing list of angry baby points = fervently itcy!!!

Jasmine was soon raking her sides, chest and back with her nails whilst the Doctor tried to listen with his stethoscope. Naturally Jasmine was screaming in annoyance aswell. With Jasmine getting more and more worked up the Doctor at least says that her chest is clear and there is nothing to worry about there.

He then has the audacity to throw in his opinion regarding Jasmine's vaccine status, as if that has anything to do with our visit or Jasmine's condition <frustration>. Following a brief discourse where it is quite clear we are at opposite ends of the spectrum regarding vaccines we agree to disagree.

Jasmine is too upset by this time to even attempt to walk so showing how she tends to point out her left foot as she steps is impossible. The Doctor briefly examines Jasmine's ankles, knees and hips and just presumes this will correct itself if it was even anyhing to have worried about in the 1st place <frustration>.

We enqured about a referral to the Homeopathic Hospital in London. He denied our request. We asked why as it was NHS. He responded 'Is it?' <frustration> His Ignorance was shining through, we pressed for a referral and left is at "I'll get my staff to research the option." <frustration> He was prepared to refer us on to another pediatricitian (or anyone else - read 'official').

We then mentioned that we would like to pursue some tests and get a blank faced response. We pressed on high-lighting leakygut and mal-absorption. He stated that that could be something that the Homeopathic Hospital could organise... <frustration>

The Doctor brought up vaccines twice more before we left <frustration> I wish he would just respect our decision, whatever his own opinions.

Yay for the UK's medical system... Indoctrination and propaganda! ...it's a wonderful thing.

Wednesday, 11 March 2009

Humph


Emotionally shattered, physically exhausted, spiritually desperate.


I'll post the dietician/doc story another time.

Monday, 9 March 2009

Bah

Jasmine is not a happy bunny :( The child minder informs us that she has barely played and barely smiled today. She's still itchy, sleepy, thirsty and generally unsettled I can only hope it's part of Jasmine's dietary adjustment and her body passing through a healing/detox phase.

We've a visit with the dietician tomorrow where we'll hopefully get Jasmine on some suppliments to go with the rice milk and discuss how gaunt she looks at the moment. Following the dietician we've an appointment with another doctor to inform them of Jasmine's egg intolerance, discuss her possible walking issues (our little penguin), to check her blood circulation (little blue feet) and generally update them on Jasmine's condition.

I hope she feels better soon.

Sunday, 8 March 2009

We're getting there...


Jasmine's skin is definately going through changes! It has been roughly a week since we completely removed Dairy from her diet, sacking off the hydrolysed milk in favour of rice milk.


Following a spell of sickness (I think unrelated) and a sleepy recovery Jasmine's skin entered a super dry phase and was flaking profusely. Her face looked as if it had been sunburnt and was going through the process of shedding a layer or two.

This effect was happening all over her body, and we've noticed that after a day or so of flaking that area became so smooth! literally baby soft! ...something we're almost afraid to believe. When the skin is flaking Jasmine is initially very itcy, once the softness of skin has returned however the itch massively subsides.

The difference is staggering, I can hardly bring myself to think that it is anything more than a blip in case we wake up tomorrow and things have deteriorated again. Tonight was the 1st time in about 9 months that we've managed to have a bath where Jasmine isn't scrating herself to pieces and working herself up into a lather.


She even managed a little smile whilst playing with the boats. She used to love baths, so that's nice to see again!

Her appetite seems to have picked up again, and despite not finishing her dinner or bottle she managed considerably more than the previous two nights. To top everything off she also managed to pop another tooth out, finally! So it's been a tough week on our little monkey, super sicky, super sleepy, super itchy and a brand new tooth!

I wonder if next week will be as exciting :D


Saturday, 7 March 2009

Zzzz

Jasmine is still very sleepy :(

Runny bum tastic with lots of nappy related emergencies! >.< At least she had a little milk before bed. I just hope she has a decent nights sleep, it's probably the best thing for her at the moment.

Friday, 6 March 2009

:(

awww we have a sickly little bunny today :(

She woke early, joined us in our bed and had a little milk. She threw the milk back up half an hour later and hasn't been quite right since; A three hour nap in the morning, barely 3 spoonfuls of lunch, a runny bum and more general sleepyness.

She's gone to bed early with no protesting and no milk.

I wish we could plug her in to some electrical diagnosis machine that just knew what the problems were.

Tuesday, 3 March 2009

The regime...

In light of the test results and the apparent reactions to some of the 'positive' products tested, Jasmine's daily regime is as follows:

Bottle feeds: Morning - Rice Milk, Evening - Rice Milk with 1/4 teaspoon of pro-biotic powder.

Breakfast: Weetabix/Ready Brek - made with either rice milk or water.

Main Meals: Steph's home made goodness, organic where possible - generally yummy. Avoiding dairy, eggs and soy of course.

Drinks: Generally we only give Jasmine water, though rice milk could be an option.

Creaming:

Organic Massage Oil (Base oil 250ml- sunflower, almond, wheatgerm, Drops x20 lavender, 10x Chamomile 10 x Sweet Marjoram)

- used for her chest, back, arms and legs.

Jason's Best Organic Calendula Cream

- used for her face.

The child minder has instructions to also use the Calendula cream on Jasmine's body throughout the day as she sees fit.

General:

We keep Jasmine's nails trimmed very short. She hates having them filed! But i would rather that than have her wear mittens as I feel this could restrict her development. When she is strapped in a car seat or pram for example we'll tuck her trousers into her socks to stop her clawing her legs. She is not so fussed when she's 'free' as she's too busy charging about :D


At night we have her in a long sleeve body suit over which she wears a long sleeve pyjama top and all enclosed pyjama bottoms (with feet on). Over her bottoms we've taken to putting on a pair of knickers as Jasmine tries to 'double up' her legs to scratch the back of her knees and calves with her own toenails. ....and its a job to file down her toenails as she is far too ticklish and squirmy :D


Results...

Below are the results of the Kinesiology tests for the various products we took along.

Positive Vital Force

Cold Pressed Evening Primrose Oil- (+) Vital Force
Silver Shield Gel- (+) Vital Force

Neutral Vital Force

Organic Massage Oil (Base oil 250ml- sunflower, almond, wheatgerm, Drops x20 lavender, 10x Chamomile 10 x Sweet Marjoram) - Neutral Vital Force
Rice Milk Provamel Purple- Neutral Vital Force
Rice Milk- Rice Dream- Neutral Vital Force
Aveeno Bath Oil- Neutral Vital Force
Waitrose Bottom Butter- Neutral Vital Force
Pampers Baby Dry Nappies- Neutral Vital Force (?) - possibly need to re-test
Jason's Best Organic Calendula Cream- Neutral Vital Force
Bonjela Teething gel- Neutral Vital Force
Olbas oil- Neutral Vital Force
Lavender Essential Oil- Neutral Vital Force
Baby Wipes- Johnson's Extra protection- Neutral Vital Force

Negative Vital Force

Jason's Best Aloe Vera Lotion- (-) Vital Force
Aloe Vera Juice H2O Gillian Mkeith- (-) Vital Force
Diprobase Cream- (-) Vital Force
Aveeno Cream- (-) Vital Force
Epaderm emollient- (-) Vital Force
Fruit Pot- Peaches in Grape juice- (-) Vital Force
E45 Cream- (-) Vital Force

Unlocks Muscle- Very Negative Vital Force

Hydrolysed Milk- Nutramigen 2- Unlocks Muscle (very negative)
Uguentum M Cream- Unlocks Muscle (very negative)
Waitrose Coconut Oil (solid) Unlocks Muscle (very negative)
Vicks Vapour Rub- Unlocks Muscle (very negative)

Monday, 2 March 2009

Ooops

Our experiences seem to be shooting some holes in the Kinesiology theory. The evening primrose oil seemed to exacerbate Jasmine's itchiness in contrast to expectations, and creams supposedly negative towards her appear to have no outwardly ill-effect. ...then we have egg, a substance that Jasmine apparently had no adverse effect to...

We had gone for the weekly shop and mum and dad, having missed breakfast, sauntered on over to the cafe to satiate our hungry bellies. Seeing as we had sat down to eat, Jasmine naturally expected to eat aswell, and not content with her measly rice cake she beckoned pointedly towards our plates. Having confirmed with the chef that there was no dairy and things had only been cooked in oil we gave Jasmine a few mouthfuls. She munched away happily and we dutifully cleaned our plates and continued on with the shopping. Steph noticed a little flaring on Jasmine's face, but we thought that may have been a reaction to the cream coupled with the heat of the cafe.

Jasmine fussed throughout the shop, scratching away, she was in no way content to sit in the trolley. As the shop drew on the itching got worse and Steph had to take her outside to try and calm her as I was paying up. She fussed all the way home. At 1pm it was a little later than her usual lunch time and she could have been hungry. We tried feeding and she had just a spoonful before it was clear something else was amiss.


Her body was covered in hives. They started out as individual lumps, but were soon merging together to form a large expansive swollen layer. Unlike the earlier episode where Jasmine's face was more affected, this swelling seemed to concentrate more across her body, with only a mild swelling around her face. Thankfully there was no major swelling around her throat and mouth and her breathing remained as normal as you might expect.

We gave her a dose of Apis Mel (30c) and we cooled her off by bathing her in tepid water, followed by coating her in calomine lotion. She was still fussing, though less so, as we put her into a sleep suit and had calmed down massively by the time we had gone back downstairs (at roughly 2pm). She snuggled into my shoulder with barely any scratching and was soon fast asleep. I lay down on the sofa and let her sleep on me as Steph nipped into town to replenish the supplies of creams we knew Jasmine could cope with. I managed to get the travel cot made up downstairs with her still asleep on my shoulder and lay her down wrapped snuggly in a blanket and clutching her muslin.

She was so sleepy and a little emaciated with bloodless lips comparative to having awoken suddenly in the night. She would stir if I sat her up, but would protest and was clearly not herself. She drank well when offered (just water) and thankfully her breathing remained strong and steady.


She was still very sleepy come 5pm and following another dose of Apis Mel we called NHS direct just to get some advice. An on-call doctor called back shortly after and having run through Jasmine's symptons and history confirmed that sleep was probably the best thing for her, so long as the swelling didn't interrupt her breathing and her condition didn't deteriorate. The doctor advised keeping some Piriton syrup in the house should we encounter a similar flare in future.

Jasmine was showing a little more of her usual exuberance by 7pm and we gave her her rice milk and some pear slices before putting her to sleep in the travelcot downstairs. Despite sleeping most of the afternoon, she soon settled and was curled up against the side of the cot, reassuring us with her rhythmic breathing. We transplanted her upstairs a couple of hours later when we went to bed and she only stirred a couple of times in the night, and had to join us in the morning, sleeping on me from 5 till 6.

Other than a little remaining swelling she seems to be pretty much back to normality.

We won't be trying egg again for a little while!

Tests

We had another meeting with the Kinesiologist on Saturday, armed with a crate full of lotions, potions and various other things to test Jasmine's resilience to. The main things we wanted testing were the hydrolysed milk and a couple of the creams we use daily.

We'd had suspicions that the milk was still proving a problem. I know the idea of being hydrolised is to break down the relevant dairy nasties within the milk to a level at which the immune system doesn't detect it as dairy, thereby not causing an antigen response. However, Jasmine was still getting very bloated which made for very uncomfortable intestinal areas where she would squirm for a lot of the night trying to find a comfortable position to sleep in.

I'll post the full results later, but there were some interesting observations, namely the hydroliyed milk wasn't good for her, and neither was the cream we've been using. There were a few other neutral and positive results but it isn't quite as simple as that...

Armed with our newfound knowledge of Jasmine's weakspots we approached her routine that evening a little differently. Evening primrose oil had shown itself to act in a positive manner towards Jasmine and accordingly we used this to rub into her legs, arms, chest, back and face. We also opted to immediately cease the hydrolised milk and start a course of rice milk (tested neutral). The worry with the rice milk is that it is defiecient in many of the nutrients that you would typically find in formula milk/cows milk, but this should not pose too much of an issue for a 2 weeks trial, especially considering Steph is cooking evey one of her meals from good healthy organic produce.

Jasmine went down fairly awkwardly, though we attributed this to a late night, an hour later than usual. 3 hours later she was still itching furiously and complaining heavily. This was not her normal itchiness throughout the night, she seemed in a lot of discomfort. Despite the 'positive' effect evening primrose oil is supposed to have on her I believe that this was the cause of her discomfort. We decided to give her a late night bath and a full scrub down, change all her bed clothes and start again with Aveeno and herb oil as we had the previous few nights. She was much, much calmer! We had also used a new 'gel' on the nape of her neck; Silver Shield Gel. Steph has her suspicions about this aswell and like the evening primrose oil, this was given a positive for Jasmine in the muscle testing.

Now I know to make the disctinction between what may be good for Jasmine internally, and what may react negatively on her skin. By the morning she was her normal chirpy self. The rice milk seemed to have no ill effect (she's had rice milk many times in the past with no suspicious behaviour, though the times we've used evening primrose oil on her face I've noticed excessive rubbing of her face afterwards, though previously I put this down to her being tired and the eczema on her face).