Tests and more tests

Well, finally we have sent off our samples to Zaragoza. Now we just need to sit back and wait to see if we get any concrete diagnosis. We sent blood, urine, mucous and eyebrow hair samples from Tália and myself. Between you an dme - the mucous sample was awful, they had to take a throat swab and it kept on making me gag. Just to think that Tali always goes through these tests.

The Costa del Sol were fantastic - they prepared it all for us. Obviously getting blood from Tália was difficult - we always have a hard time doing this, but the nurses were kind. I had to pin her down while they took the blood. The urine was somewhat easier than usual - now that Tália sits on a potty, collecting a sample is so much better than sticking those plastic bags on her.

Well, its over -I always dread bloodtests for her and now I cansit back and let it go!

Swine Flu confirmed

Well, we got the results back and believe it or not they came back POSITIVE FOR swine flu. We have now brought Talia home and she is doing ok. She is weak and very coldy - she has lost her voice but her colour is so much better since they put her on the drip and rehydrated her.

It is so good to be home. Talia did not sleep well in the hospital - she found the drip very disturbing and cried all night complaining by saying Ay! Ay! My poor baby was very unhappy. Thankfully though they prepared everything for us at the hospital with the carnicor she needs etc. We have decided against Tammiflu as Tali has now had the flu for a week and the fevers have calmed down significantly. Weighing up the possibe side effects of possible diarrhoea and vomiting, we decided against it. However the Drs have told us to return if she takes a turn for the worst.

Our physio, Ana hs been amazing, she spoke to the homeopathic Dr and and bought us loads of vitamins and suplies to boost Talia's immunity and help her cough.

Could Talia have Swine Flu?

23rd November 2007

Well, here I am in the Hotel del Sol, looking out the window of my five star room.

Back to life, back to reality… I think I should write a visitors guide to hospitals. By the way I resemble an alien – poor Talia had the fright of her life when she awoke from her sleep - her mum had turned into the green boggy monster. For here siteth I dressed in green overalls and a mask, looking like an alien from out of space, lest I should catch the dreaded lergy from the baby who practically slept, breathed and peed over me yesterday – weird really, especially since she got the flu from me!!!!!

Anyway she has been tested for the dreaded GRIPE A or dare I mention S----- flu. We, our whole family were ill for the last week with high fevers, coughs, sore throats and achy bodies and I did my best to avoid Talia – I was terrified she would get ill. She spent one day with her granny, one day with Susan and the last few with me…. She seemed to be battling well until she stopped eating yesterday and started getting all chesty. That was when I knew that she needed to be hospitalised. She wouldn’t even take water.

Well she is now on a drip, poor baby. She had a hard time – it took them about 40 minutes to take her blood and put the drip on – I wasn’t allowed in with her and all that I could hear were her heart-wrenching cries. Why does my poor baby have to go through this – she is my angel.

Costa del Sol yet again

Today I had an appointment in Costa del Sol hospital. My best friend, Susan came with me to give me moral support. It was pelting with rain and awful driving conditions so it was so good to have the company and support. Well we made it to Costa del Sol in good time and after a nice cosy coffee and warm breakfast at the cafe ( which I have to admit does delicious breakfast at a very reasonable price!), we wandered around the hospital's gift store - Susan even managed to do some Christmas shopping. There's loads of interesting stuff there - we may go back just to visit the shop sometime!

Well, then the adventure began - we made our way to the out-patients floor and guess what? My printed out page said that my appointment was in 'neurology'. Can you believe that when I asked the nurses where neurology was, they said that it didn't even exist. Finally we were pointed in another direction and after asking random people, we found the waiting room. Well, stumbled upon it because it had a hand-written sign covering a printed one on the door, saying 'pediatra' - whether neurology actually exist s there or not I don't know, and evidently nor do the staff - so why my appointment sheet said that on it, is beyond me. Susan was pretty shocked. It seemed bizarre.

Well finally we were called in to see the doctor. But guess what? I was expecting my usual doctor, I was expecting a little consistency, I was expecting an update on the results from the skin biopsy - what a mistakea to makea.

The Dr had never seen Tália before and said that he would chase up the biopsy - yeah we know that - I discussed that last week with another pediatrician there. Did I really need to drive through torrential rain, drag my friend out and miss Tali's physio for this - re-arrange my life and drag my husband out of the office to pick the other two kids from school??? To see someone who knew nothing of Tali's case - she wasn't weighed, she wasn't measured. He only checked her chest because I said that he may as well, now that I was there - otherwise nothing would have been done.

So where is my continuity?? Tali has lost weight over the last month and so what? Doesn't anyone care - does anyone realise? Do they even know her name? They certainly don't know her age - the Dr asked me how old she was. When I suggested that he look at my notes, he made out that he already knew everything.

So what do I do? Where do I turn? How can someone see an improvement if they haven't seen the child before? The medical world is sometimes frightfully ridiculous - what is science? Is medicine really scientific - is that really how we measure behaviour? Surely science should at least look at growth charts, weight, development milestones or is science merely waiting indefinitely for a result that may not even show anything. If Drs don't look at my child - how will they ever know how she is?

I feel utterly disappointed - what happened to vocation - what happened to warmth?

Well thank goodness my friend was with me and I decided not to be my usual fiery self and kick up a fuss - I just played a silly dodo and smiled and was pleasant and said I would really appreciate it if he could chase up the results. I was proud of myself for keeping calm - what's the point of spending extra energy - I need as much as I can get.

Well its back to holistic - medicine does seem so far behind. I have one fantastic Dr at Costa del Sol but quite frankly if it weren't for him, I would have no hope. I think I will go back to Hospiten for regular check -up's because my pediatrician there is so warm and you can tell he really loves his job. He really loves Tali and I know he will always do the best for her.

Anyway, despite all this, Tali looks great this evening - she is getting better and she is trying to chat - I really am communicating with her.

Well, Susan and I soon put the hospital behind us and went to La Cañada to feed Tali and I also managed to get my middle daughter her birthday present - it her birthday next Sunday (5th October).. And what is the present?? You'll have to wait till next wee as its a SURPRISE. Hee! Hee!

This is a very bumpy ride

Well, Friday was a hair-raising day. Tália woke up and basically refused to eat her breakfast – now for those of you who know my little Tal, she may be slight but she does have quite an appetite and enjoys her food, ESPECIALLY breakfast. So if she refuses to eat at breakfast, something just aint right. Sure enough it wasn’t – at first I thought it was a tooth or that perhaps I had burned the roof of her mouth with some food ( to my horror!) but then she started coughing and her chest started making an awful rattling sound. In such a tiny baby, this can be quite alarming. Anyway since she had been chesty the last few weeks, I decided to stop feeding her, give her a break and then try again later So I packed my stuff and headed to Mum’s and Dad’s.

Once at my parents’ place, I sat Tália down and started to feed her – but she couldn't take anything –she refused solids and liquids and her chest seemed to be going from bad to worse. Her eyes were red and she just looked very uncomfortable. Mum, who is asthmatic told me that we should take Tália to the doctor just to check her chest. Her rattle and cough sounded like Bronchiolitis.

So by midday we were in the emergency room at Costa del Sol where they dealt with us quickly and efficiently. They gave Tali a chest x-ray and said she had mild bronchiolitis and also gave her a nebulizer. Then they admitted us to the hospital, not so much for the severity of the bronchiolitis but because Tália is too small to go without food (in fact to my dismay they weighed Táli and she had lost weight, she now weighs only 4.63 kilos) and they would need to feed her intravenously.

One look at the cold cot and our room and Tali crying and I knew we couldn't stay – I could see that hospitals made her agitated – although the staff and treatment she got this time was very good. The Dr on duty was a lovely lady and she agreed that if Tália agreed to take food, she should come home.

My brother, sister-in-law and baby arrived and together with mum and dad we tried to calm Tali and feed her. At first she cried but then I sat her up and told her loud and clear,

‘Look Tali – I hate hospitals too but if you don’t eat this, we have to stay here in this cold room – don’t you want to go home and be with your sisters and the whole family?´

Instantly she started to eat, we all sang and spoke to her gently and to my relief we were soon headed back to my parent’s house. My husband had collected the girls from school and we were all together. I felt a sense of security – these days Táli goes from up to down and having everyone around me just helps me feel safer.

This last weekend has been bittersweet – like a roller coaster. My brother and sister-in-law left for good on Monday. We all stayed at my parents´ home to be together for this final weekend – if I had had to stay in hospital, I would have been gutted. We had a fabulous weekend just hanging around together – so much laughter, dancing to ABBA, watching X factor and all pitching in. However Táli’s weakness on Friday left me very sensitive. Saying goodbye on Sunday was also quite a tough thing for me. My brother and sister-in-law have really been there for me. We spend so much time together and they would move mountains with me.

On Monday, my friend Susan came and worked with me from home – just having her company and friendship lifted my spirits. By Tuesday I felt my old self coming back and I went shopping with my parents – a bit of retail therapy and a cosy coffee out can really make one cheer up!!

Which way do I go?

I woke up this morning feeling confused. What do I do next? We are waiting for results back from Tália's biopsy but apart from that, I feel quite forgotten by the medical world. No one has properly checked Tália here since June and she has not put on weight - surely a 4kg 14 month old should be monitored monthly. So I guess I need some consistency but from where?? Do I use a local general GP or a private pediatrician or do I need to chase the Costa del Sol or should I go back to Materno. I am in limbo and need a plan. Apart from positive and holistic approaches I need some kind of medical support but how to balance so many Drs - well just have one I hear you say!! However the Drs are of different opinions and none have seen her consistently so I don't want to close any doors. I think I need to meditate as I feel like I have cotton wool in my head.

They say that when things are so unclear you should wait for a sign - so hey to you up there, I´m waiting - please send it to me and don´t make it to subtle as my vision is a bit blurred at the moment!

Good Luck, Bad Luck, Who Knows?

Good Luck, Bad Luck, Who Knows?

That’s how I think of this day. If I had written this blog earlier on, it would have been filled with anger and frustration, concern and a sense of sadness at the humanity shown by people, but why?????

Here is an extract that I wrote earlier on:

‘What happened to humanity? Why do people let systems get in the way of healing? Why are we all fighting each other rather than heading towards one common goal?

Today has been frustrating and it is on days like this that I feel lost. The world has so many labels and boxes – what happens if we don’t fit into any of them? Today I awoke to a very coldy Tália with her streaming nose and chesty cough and choking away. I knew at once that this bleary eyed girl needed a decongestant but what do you give a 4.9 kilo child with suspected mito illness? A local paediatrician would not know her history and most Drs can’t cope with it without advanced notice, Materno Infantil just seemed too far, so finally we settled for Costa del Sol. Unfortunately my usual Dr was not there – he has shown nothing but empathy and support for us. Anyway I called the ward and spoke to the secretary and explained the problem. When no doctor called us and as Tália looked worse, we decided to head straight for the hospital and dropped the other two girls with my Dad. We went straight to the ward rather than emergencies as:

- Tália has no diagnosis but suspected mito disease means that flu’s and colds should be treated differently from that in a the normal patient
- A Couple of Drs there, at Costa del Sol, were aware that Tália had a skin biopsy and were aware of what they were looking for
- We could not risk seeing any general Dr on duty as Tália probably cannot cope with certain medication

Well, luckily a Dr saw us nearly immediately although explained that next time we should go to emergencies – I asked if we should go down and he said not to bother. He saw Tália and decided to give her some ventolin in a nebulizer.

It was whilst I was struggling with a screaming, crying Tália, coughing and choking, and trying to get the mask on her whilst my husband held her head still, that another nurse came in. I assumed that she was going to help me get the mask on but instead she just ignored Tali and ignored our distressed state and began to say that we were breaking the system, that we should have gone to emergencies, that we were taking up their room and resources etc. Tali was even more upset and the mask nearly poked her in the eyes. My husband asked the nurse if we could speak later and I said that I would like to explain to her why we had decided to go straight to the ward but she said she didn’t want to hear, that she was leaving and that she wouldn’t wait until I had finished. Tears welled in my eyes, I felt out of place, I felt unwanted and I couldn’t believe how insensitive a nurse could be. Surely seeing a mum so worried with an obviously tiny baby should spark compassion? Couldn’t her talk have waited? Did she have to have a go at us when we were focusing on her child?

She left the room as my husband got rid of her by telling her we knew the procedure and we wouldn’t come up again. Once she left, we gave up, switched off the nebulizer and walked out. I was crying. The nurses outside were surprised that we finished so quickly – we said that we were made to fell uncomfortable and unwelcome and walked straight out without looking back. They were shocked’.

Later on in the day, I spoke to my mum and she said that perhaps Tália didn’t need the ventolin – having been asthmatic, she explained that every time she had a high dose, she would shed weight. Also it would make her shaky – Tália didn’t need an asthma remedy but something to decongest her.

I came home and decided to look up some herbal remedies and my brother and sister-in-law surprised me by buying my Echinacea and driving all the way to drop them off. I received an email from the Dr in Barcelona who gave me the name of a decongestant to use – Mucorex.

So now I look back at my day and it no longer seems so bad – perhaps that nurse angered me enough to leave and stop the treatment. Maybe she was sent to stop me from giving Tália ventolin. Also Tália seems better. Now with a clearer head I ask myself was that nurse a stroke of bad luck, or was it good luck that she had a go at me? So, good luck, bad luck – who knows? All that I know is that I may not medically fit into any box but when I’m lost I have friends and family pooling together and ultimately that’s the best.

Talia makes a quick recovery

Talia's skin biopsy went fairly smoothly yesterday - she was a real star - barely cried and even though they thought she may need stiches managed to get away without any. Today the wound had stopped bleeding and by this afternoon she started looking more alert again. I must say that I am relieved that we wont be getting any results for 2.5 months as it means that I can just focus on an amazing Summer - taking the girls to the pool everyday, doing physio with Talia everyday and just being. A couple of months free of doctors is just what the doctor ordered (ironically).

I have been looking online at different plans (standing supports) and I am amazed at products out there for special needs kids ( see www.jenx.com for an idea). I think the cat model is the one they will select for Talia.

Luckily, the state have given me a prescription and have agreed to pay for it - I have been round so many appointments to get the presciption -first to see my local paediatrician in Sabinillas, and then to Estepona, and then another appointment in Estepona. Once I had agreement from the doctor, the paperwork - prescription, empadronamiento (Talia's), medical card and all had to be taken to the Costa del Sol and then had to be approved by the committee there. However after all these steps I got the prescription approved and now that I understand the state system, I am actually very pleased with it.

Topsy Turvy

Woke up this morning determined to call up some doctors and chase them up on bits and pieces - the UK Dr to chase him up on a test that I've been charged for but have never received any results for, Costa del Sol to find out what's going on with the muscle biopsy and Materno Infantil to give latest lactate and spinal fluid results to the neurologist we see there. So, after sending my two eldest girls to school and after feeding Talia a good breakfast. I placed her in her donut to play and started some phonecalls. This donut thing is new - before she couldn't hold herself up in there and I would have to lie her down on cuhions but today she sat pretty well and played with her toys. She is great on her own as it gives her the feeling of independence.

Anyway I spoke to the Dr from Costa del Sol and he told me that they have decided to do a skin biopsy on Monday at the Costa del Sol. He stated that it was est to start with this - it should be just like an injection with a fine needle. He said that with a muscle biopsy they would have not been able to use a local anaesthetic as it can affect the sample and that after what I had told him about Talia's sedation with the MRI she had in February, they decided it may be best to start with a skin biopsy.

I spoke to him and asked him some questions like ,
'Do you think she definitely has a metabolic illness?
'What will we be looking for in a biopsy?'
'Are there curable metabolic illnesses?'
'How serious an illness could she have?'

He was very supportive and answered the questions to the best of his ability - although it was a pretty negative picture. He said that they were pretty sure she probably was suffering from a metabolic problem as the lactic acid in the spinal fluid and blood lactate were elevated, that they were looking at several fairly serious illnesses and the extent that Talia was affected would just depend on exactly what type of illness she had - some patients die in early infancy and others do not get diagnosed until adulthood - so I am just praying Talia's condition is not so serious.

Anyway I also spent time on the web checking out metabolic conditions. I felt stronger this morning and on days like this I choose to do research as most of what I read is pretty awful. However I want to know what is going on and I want to know what questions to ask and regardless of what any doctor says, I am going to do my best to build a good life for my princess.

I recently saw a natural doctor who said that he felt that Talia would struggle through her first five years but be fine thereafter - this thought gives me so much hope. I am not one to give up. Th estories I've heard from friends and physios about miracles that occur everyday - children who are told they can never walk but do, children who survive against all odds, these give me hope.

Anyway, next appointment Monday - I must say that I finally feel that I have a good team of doctors there - they are quite caring and supportive and very professional. If any mum needs help on who to se, please contact me.

Anyway must sign off - girls are singing in a theatre production tomorrow, need ot ensure their clothes are prepared - the joys of motherhood!

I can see clearly now the rain has gone!

What a day, what a week. Thursday morning was tough - after such a difficult day before. However a visit to a new physio for additional therapy and my mum's positive nature pulled me up. I had a good cry with mum, and then it was onwards and upwards. The physio was so positive, sure that Talia would walk and sure that she was all there mentally. She was very kind and lent me a plano until I get my own ( like an orthopedic walker to help build up her leg muscles). She also lent me a Bumbo seat which Tailia loves. I went to mum's after - just needed to be under positive influence - also needed to sleep - felt emotionally exhausted.

The Dr from Costa del Sol called and told me that they did find elevated lactic acid in the spinal fluid which was not what I wanted to hear but at least everything is just elevated and not sky high - elevated can mean borderline.

Back to Spain

The rest of our UK trip was a whirlwind - the days following the brain scan were filled with trips to the geneticist, neurologist for further opinion on the scan and a few trips to a laboratory for bloodtests. My poor Talia -constantly poked and priked. Taking blood was traumatic as she was still bruised from earlier tests and she was not well hydrated. Well to cut a long story short - we are back in Spain and are still seraching. The last few months I have just been focusing on physio, swimming and speech theraphy. We are at Aprona everyday now and are working hard to build up Talia's muscles. The geneticist has come back with results and so far all genetic testing is fine however he has pointed out that Talia's lactate levels are high, suggesting that there may be a metabolic poblem somewhere. Further to these findings, I called Materno Infantil who do not think the elevation is significant - however after Talia lost 100g a couple of weeks ago, I decided to go back to the Costa del Sol and re-visit a doctor I saw there in November. To be honest, the service I have received there has been far superior to the servicein Malaga. Yesterday they repeated the lactate test and within an hour had the results - incredible!! Unfortrunately it is still high and this means that we need to do further testing in terms of a muscle biopsy. Apparently there are only two places in Spain that do this so we may have to head for Barcelona.

The doctors yesterday were fantastic andthe nurses in the Costa del Sol were playing with Talia. There were about 3 doctors watching her and they even tried to analyse a new test that they have never done before - for once I felt as though somebody cared here in Spain. Finally I could see a team coming together.

The doctors also took spinal fluid yesterday - they did a lumber puncture. They warned me that Talia may suffer from headaches and backache afterwards. We were sent outside to wait as they needed to concentrate without us around. It is so difficult to watch your child suffer - I feel emotionally exhausted.

Last night was awful, Talia cried lots and was obviously in excruciating pain - I was beside myself as nothing would calm her. Ithink that holding her only worsened the back pain. Eventually we put on my mum's deep relaxation CD and within 10 minutes, Talia was asleep. We repeated this a couple of hours later and managed to soothe her again.

My poor baby - she is beautiful and I hate to see her suffer.

No News - Is it Really Good news?

I waited for a response from the Costa del Sol but did not get any response. I fleetingly spoke to the Dr who said the blood tests looked more or less fine and that he needed the Karyotype (OR HOWEVER YOU SPELL IT! - genetic study) which was still in Madrid. Talia was just not putting on weight and I felt troubled that she was on no priority list. It was at this time that I realized that I needed to build up the pace and start kicking up a fuss. It was time to create some drama - to make my daughter a priority after all if I didn't do it, who would - it was time to get her into Materno Infantil - one of the best paediatric hospitals in the area. I just needed a game plan.....

High TSH and Hypothyroidism

The first thing I did was to set up an appointment for a follow up blood test. I then got cracking and googled Hypothyroidism and TSH levels. I found out that Talia´s TSH (thyroid stimulating hormone) count was elevated but not exceptionally high. Her T3 and T4 levels were normal. Hypothyroidism is usually charactarised by a rising TSH and low T4. The fact that her T4 was normal put us in a gray area. However I did read that this could be an early indication of future hypothyroidism. I was relieved to see that there was a cure for this condition even though it would mean medication for the rest of her life but compared to the numerous syndromes and illnesses I had looked into - cystic fibrosis, cerebral palsy, it seemed like a nice answer to our concerns. The only think that I got was itchy feet to get going as when untreated Hypothyroidism will affect mental development and cause retardation.

Many of the symptoms seemed to match - physical exhaustion and lethargy, cold hands and feet, poor muscle tone - the only thing that did not square up was that the stereo-type hypothyroid baby is quite chubby and Talia was anything but that. However I knew adults who were skinny and suffered from hypothyroidism.

We did re-test and indeed Talia´s TSH came out even higher - according our lab, the norm was 3.9 and her TSH had gone from 5 to 8.3. My paediatrician immediately referred me to an endocrinologist at the Costa del Sol. I would now be seen under the state system by the head of endocrinology there.