Going to the UK

Tomorrow we are off to London – we have a new nephew who is going to be christened. My husband is the godfather - I saw this a s a sign from the Gods that we need to go to the UK and get Talia checked up. I really need to sit down and discuss options with someone. My brother in law has been amazing and organised for us to see a good paediatrician I am excited as we are going as a family with the girls and it will be good to get out of here for a while.

Yesterday I went to Hospiten and weighed Talia – without clothes she only weighs 4.130 kilos – that’s less than she did at the beginning of Jan and she’s been eating – so what’s going on. We really need some answers and whilst I KNOW THAT PATIENCE IS A VIRTUE, I also know that I must try all options. At the end of the day what is meant to be is meant to be but I need to do my part and that’s not to sit down and wait.

Allopathic medicine provides no answers.

It dawned on me loud and clear that nobody really had a clue as to what Talia may have. Up to now, I had been sure that the answer was just there – that the doctors would have answers. Now I needed to do whatever I could myself because at the moment it was down to me and my gut.

I am a firm believer in and balance. I am not one of those people who is 100% organic or totally into homeopathic remedies. I do however feel that alternative therapies and medicine is fantastic –I see the two as perfect complements and with Talia, I am trying to balance out the two sides. Without doubt the physio is what is showing me the greatest results. Apart from this, I try to give Talia an oil massage at bath time where possible and if mum is around, she usually massages Talia. She also works gently with her. Mum is a yoga therapist and has worked with children with Special Needs – she is fantastic with Talia. I am also in touch with a dietician with regards to Talia’s diet. Talia also has had massages and some cranial sacral therapy.

Recently I went to see a well-established iridologist. He was fantastic. Apparently the eye is like a map of the body. He managed to tell my husband that he suffered from back problems and that his discs were worn out just from looking at his eyes. He looked a bit concerned when he saw Talia and said that it looked as though the hypothalamus was working at a very slow rate and that it needed stimulating. He suggested using Almond Milk – strangely enough so had my nutritionist who says that Almond Milk has lots of rich vitamins and is easier to digest. The eye doctor also gave me a vitamin – Kindervital to try and boost Talia and trigger off more of an appetite.

Well… I am trying all this but alas the weight does not go on….

Maxijul -a boost of energy

Patience is a word that keeps creeping up -yet its so hard to watch your baby and be patient. A mother child bond is so strong and a mum's desire is to do whatever she can to ensure her child is ok. In December after our first visit to Materno, we went to visit another doctor based in Gibraltar. So many friends had recommended him. Whilst he was as baffled as the other doctors and saw ´Talia´s case as an interesting one, one thing he introduced me to was Maxijul - a supplement that can be added to food and drink - really it is made up of glucose units and is often offered to patients suffering from chronic illnesses, malnutrition and lacking in energy and calories. I decided it was worth a try and started adding one teaspoonful to Talia's main feeds.

Materno Infantil

The Materno Infantil was packed –we turned up with a stools sample and starving baby (had to leave her without food again). The doctor we had seen privately looked after us – he was amazing. He managed to pull a few strings and his colleagues saw us immediately – something unheard of. Some of his colleagues rubbed in that they were doing it for their friend as he was worried about Talia. First the endocrinologist saw her and to be honest she looked baffled – she said that Talia had no obvious hormone problem. She ordered some blood tests –MORE blood tests – My poor baby! Then the neurologist saw her. She didn’t say much, just that she thought that Talia’s problem was connected with the central nervous system and that she needed to have an MRI and see an ophthalmologist who would look into her eyes and check the nerves at the back of the eyes to see if there was any damage. We asked when this would happen and she said that the MRI appointment would take ages to come in and the ophthalmologist one would probably take a couple of weeks. I asked numerous questions about my daughter – would she be able to walk? What would her future be like? How weak was her muscle tone but the neurologist looked at me and said that she couldn’t say and just to focus on the present.

It was a long day and there was a lot to take in. I thought the Materno would have all the answers but I left realizing that Talia definitely was not a text book case – we left it that we would go back after a month. We´ve been back but there is no more news – the TSH stills seems erratic but not enough to merit treatment. The neurologist wont see us till we have the MRI – the appointment still has not been given to us and I do not want to push for it as they will have to sedate Talia for about an hour. If there is any damage to the brain, I don’t think I would be able to do anything about it anyway so I prefer to wait till she´s older. The positive is that numerous things have been eliminated – one of the main things being cystic fibrosis.

Time to take action

In December, I started to get worried –waiting wasn’t getting me anywhere – My dr at Hospiten had told me he had more or less done what he could and had recommended specialists but unfortunately they weren’t as vocational as him. I don’t know whether it was just a private public thing but I felt like a number and not like a person.

After this realization, I decided that by hook or by crook – I would get to Materno Infantil – the best baby hospital in Andalucia and according to the Spanish in Europe. It is a state hospital based in Malaga,

We are now being seen by specialist there, but how did I get in? Well first we tried emergencies but they just did a urine sample and told us to see our own paediatrician in Manilva. Then I called to make an appointment and was told I had to be referred by a state paediatrician. Then I went to the state paediatrician in my municipality (who saw me immediately after I had a huge outburst in reception when they told me to wait a few more days – I had had enough, now I was going to fight for the attention we deserved). Then the paediatrician studied Talia’s case and agreed that she needed to get to the Materno. I was over the moon and expecting an appointment when they called me (the local centro de salud was very efficient) to say that they thought the bureaucracy and paper work may take months to process and suggested that I try to get in either by creating a fuss at emergency and presenting the paperwork or through some other loophole. I was upset – the Dr agreed that she needed urgent attention but had no clout to put me on the top of the list.

Finally after speaking to some mums I found out about the heads of the units at the hospital and made an appointment to see one of the heads specialising in babies and digestion in his private practice. On December 13^th I finally made it to Materno Infantil. The Dr had looked at Talia and instantly agreed that she needed to be treated at the hospital but as an outpatient as she was too small and could not afford to catch anything.

Talia loses weight

Well, here I am at home with baby Talia on my lap. We have been out all morning - first at Aprona where she did vey well and manged to grab a rattle with both hands whilst balancing on a huge red exercise ball, then we went to see my eldest daughter´s teacher who was very happy with her progress and finally we went to the chemist to weight Talia. I walked in with my sister-in-law - a number of the pharmacists came out to watch Talia being weighed. She was wearing the same as last week - pink trousers with tights underneath, a vest and a long sleeved top. However my heart fell as I saw the reading on the scales - her wait was 4.43 - she has lost 20grams - how on earth can that be when she' eaten well and I've been adding Maxijul to her food.

So before continuing with our story from where I last left off - I needed to get the weight thing off my chest. Thankfully we are off to the UK next week to get another opinion.

Weighing day tomorrow

Well before continuing the story - just thought I´d say - tomorrow is weighing day. Last time I weighed Talia, she weighed 4.45 kilos in her pink trousers and a thin top. Fingers crossed for tomorrow. Today has been a good day - Talia has picked up her drinking cup and fed herself some water, after missing a few times and squirting water in her eye - she is also trying to pull herself up from a lying down position and using her right hand a lot more. Until late December- she barely moved her right hand, we did not know if she could move it. Today she was starting to reach for toys with it. Each development like this brings new hope.

Tomorrow I have Aprona in the morning - I go twice a week for physio. They are fantastic there. I´ll carry on with the Talia story tomorrow.

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.....

More Blood Tests

We saw the endocrinologist who on seeing Talia confirmed that she had weak muscle tone but explained that from what he had been told that he had expected her to be worse. She was having a good day on that visit. He really did not think she had hypothyroidism as she just did not fit the stereo-type. I asked for advice on feeding. He recommended that I stop cereal feeds and go back to just breast. He claimed that the quantity of cereal she was getting was insignificant and that she would gain more weight from the breast. I was confused by this - I know breast is best but if she wasn't putting on weight I wanted a magic formula or vitamin - I wanted something fattening. I felt like my milk really wasn't right.

The Dr claimed that he really did not know what Talia had and that his own gut led him to believe that she had some kind of metabolic illness so he wanted to run some more blood tests to check this out. He claimed that there were at least 200 metabolic illnesses and many that existed that had still not been founded or defined so in not so many words he told me to be patient as we may never find out what she is suffering from. Patience - my foot!! tell a mum with a newborn that is not thriving to have patience - something all Drs love to say but something that a mum finds hard to deal with.

So yet aagain more bloodtests were scheduled. At first they let me in with Talia but then the nurses (after asking me to hold her while they pricked her) then told me I should leave the room as they could not work with me around. I was baffled as 2 minutes prior they had asked me for help!! They were a little offish and I found this sad as when you see a mum and child - surely empathy would teach you to treat the family with tact but I found the staff very cold. Despite the latter they were formal and did take the blood and carry out the job professionally so I guess that´s all that matters.

The lDr said he would call when he had the results.

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.

Neurologist

After the blood test experience, it hit me that we were at the beginning of the roller coaster ride. My paediatrician had told me that this was the start and that the search could take a long time - indeed it could be years before we were any closer to any truth. However the good thing was that things would be eliminated and that even though it may be difficult to pinpoint the problem, we would be able to take away some of the key illnesses. I just remained positive - the truth was that Talia did look better by the day although her sudden moments of weakness and odd ´bad´days did concern me. Her lack of arm movement was alarming?? Would she be able to move them? Would she be paralysed? Would she walk? I had so many questions. No answers. We were referred to a neurologist in Malaga. I was convinced that the neurologist would have the answers. Could my baby really have some rare disorder? Surely someone would pinpoint what she had with ease?? So on the 6th November my husband and I made the trip to Malaga, very positive, certain that this would be the day - the day when we would get the answers. I tried to dress smartly - wanted to look like an organised and informed mother and wanted to be taken seriously.

The day dragged a bit till the appointment. My husband and I had a lovely lunch at the centre of Malaga - we had decided to make a day of it so we went to Marbella first to claim for our child benefit as we were due 100 euros a month for Talia and then we went to find out more about the libro de familia. Talia was a little weak that day and we both watched her over lunch and gave each other a knowing look - we were both worried. She hadn´t eaten much - I had fed her some cereal with a spoon but she didn't have much and she was not so good at latching onto the breast in public. I had created a feeding chart for the neurologist so that he could see her feeding patterns - I tried to feed her as often as possible as she would take very small quantities in at any one time.

Day	Time	Breast	Side and Position	Duration	Formula / Cereal	Quantity
Thursday 01/11/07	6:15	Yes	Right -Lying down	5 mins
	8:30	Yes	LEFT	10 mins
	Burp and sleep for 10 mins
	8:55	Yes	LEFT	15 mins
	11:15		RIGHT	12 mins
	15:10				CEREAL	ONLY FEW SPOONS
	15:40	YES	LEFT	15 mins
	17:40	YES	RIGHT	25 mins
	20:20	YES	LEFT	10MIN –BURP-5MIN-BURP 10MINS
	21:55	YES	RIGHT	5 mins
Fiday 02/11/07	03:20	YES	LEFT	1 hour on and off – eg sleep 5 mins, feed 5 mins
	5:40	YES	RIGHT	5 mins
	6:40	Yes	RIGHT	20 mins
	9:30			45 MINS	CEREAL 2 OZ BLEVIL FORTE CON CREMA DE ARROZ	ALL OF IT!
	10:30	YES	LEFT	10MINS
	12:00			10 MINS	Cereal, Blevil , crema de arroz	10ml
	14:00	YES	RIGHT	8 MINS / BURP 10 MINS / 8 MINS LEFT
	18:10			40 mins	Frutas con cereals Potito	All
	20:15	Yes	Right	10 mins
	22:10	Yes	Left	10 mins
Saturday 03/11/07	07:00	Yes	Left	10 mins
	10:10			15 mins	Leche con cereals – Nestle, Ready Made	30ml
	12:00	Yes	Left	7 mins
	14:30	Yes	Right	10 mins
	16:00	Yes	Right	15 mins
	19:15	Yes	Left	15 mins / burp / 15 mins
	20:00	Yes	Right	5 mins
Sunday 4/11/07	02:20	Yes	Right	20 mins
	04:00	Yes	Left	5 mins
	07:40	Yes	Right	10 mins
	08:30	Yes	Right	7 mins
	11:10			40 mins	Frutas con cereals y agua	50ml
	11:50	Yes	Right	5 mins
	15:30				Frutas con cereales	20ml
	17:26	Yes	Left	8 mins
	18:20	Yes	Right	10 mins
	20:15	Yes	Left	8 mins
	21:00	Yes	Left	15 mins
	22:20	Yes	Right	5 mins
	23:26	yES	LEFT	5 MINS

Anyway, to get to the point we finally made it to the appointment - the building was quite dark and the neurologist was on the first floor. The clinic was very simple - I don´t know what we expected but we were expecting high tech machinery and computers - I mean when you think of neurologist, you tend to think of lots of wacky equipment and machines.

We saw the neurologist a middle-aged man. He looked at the bloodtest results, my feeding chart and checked Talia over. He gave me a lot of hope as he said she did have weak muscle tone but it may just be that she was behind. For many kids who do not grow in the womb, this is quite normal. He seemed quite confident. He also told me not to feed her so often and to try and give her a top up in a bottle - I explained that she wouldn´t take a teat - we´d tried numerous bottles - avent, nuk (breast shaped teat) and 'Tommy Tippee'. He said to keep trying but to keep on with the breast. I asked lots of questions but he said it was early days and that he couldn't not tell me with certainty that she would be fine. He looked at her bloodtest results and immediately spotted that her TSH level was high - at the time I didn't know what that was but now I know more about the subject. He said I needed to do another test immediately to find out whether she had hypothyroidism and seemed pretty confident that if this was the problem, all she would need was a hormone supplement. Finally we seemed to be getting towards an answer. That, apparently ,was the only result that was out. he also suggested that we take her to stimulation sessions at a special needs association. It would do her no harm and give her a headstart if she did end up with any syndrome or permanent damage. He said to watch her but not to bring her back in less than 3 months. He said that we may never need to see him again if she did have hypothyroidism.

Blood Tests - The search for an answer begins

On the 30th October I took Talia into Hospiten - I had to leave her without food for 6 hours so that they could get valid blood samples. Nothing really prepared me for what the poor girl was going to go through. Stupidly perhaps, I did not see this as a big deal and foolishly expected it to be just a quick pin prick and that I´d be home within the hour. How wrong was I!! My mum came with me for moral support -I told my husband not to worry about coming as I did not think it was a big deal. After a bit of a wait, we were ushered to the vaccination room in Hospiten. My paediatrician said that he would be taking the blood, not the nurses as she was so tine. I really appreciated his warm nature. He was and still is very fond of Talia as she is always smiling and laughing and a very sociable baby.

The nurses asked me to sit outside while they poked her - I refused, I wanted to be with my baby and luckily my paediatrician had no problem with it so my mum and I stood on the sidelines watching.

First they tried to find a good spot from which to extract blood. they settled on one hand. After numerous attempts they finally found a needle small enough to fit in her veins. I hadn´t anticipated this being a problem beforehand. Then they couldn't get enough blood - we had a number of tests to run - so there were about 5 tubes to fill. They moved to her other hand and I just prayed so hard and visualized all the blood coming out easily. My mum and I looked at each other - our hearts breaking to see our little Talia crying her eyes out. However both of us stood tall - we were determined to be strong and to be supportive for the doctors. After about half an hour it was over and we went to the cafe were I fed a trembling Talia. She kept shaking all day and I had to hold her very close to me all day long.

My paediatrician came up to us and gave Talia a big loving cuddle. It was nice to see this gesture - it is lovely to see vocational experts. Now I just had to wait for the results.

Possible Muscular Disorder

In my gut I was worried and in September / October this worry increased. Talia was improving but very slowly. Her weight was a problem but that was not the only thing disturbing me. I was still doing weekly visits to Hospiten usually accompanied by my mum and dad for support as my husband needed ot run our business ( Hamilton Homes) and keep it going. he lost me as an employee so had lots on his hands. My parents and I would make a morning of it - grab a coffee and chat while I would breastfeed little Talia.

We tried so hard to give her a top up with formula but she refused the bottle. I am still trying and she is still refusing. This scared me as she seemed to gag. I worried that she had some degenerating muscular disorder that affected the sucking reflex yet she could easily latch on. At 3.5 months, we introduced cereals to her diet as we discovered that she would take a spoon - feeding times were painful as at first it would take her up to 3 hours to take 6oml of milk with cereal. I would wander whether she wasted away more calories from feeding and would keep turning to the breast.

At 3 months we gave her the rotavirus oral vaccine -Rotarix. The rotavirus is a vomiting and diarrhea bug responsible for many child hospitalizations. It was recommended to me as this kind of bug is dangerous and life threatening to most kids but to Talia that effect would be increased due to her low weight. However this seemed to take a toll on her body and for two to three weeks she was very weak - she seemed to take a step backwards and lost her appetite. Since then I have stayed away from vaccines - I think her body weight is too low to cope with them.

At four months her vomiting improved, although she still had lots of wind. My husband and I were worried as she seemed to have such a weak and frail body - she barely kicked or moved and her hands and arms seemed limp - it was time to take things further and our paediatrician was of the same opinion. Mum´s at school were noticing that she was falling behind and begged me to get other opinions. I did not want to panic as a mum´s connection with her child is strong - what hope did Talia have if I lost the plot. My Hospiten paediatrician was very positive and kept me going at this time although we mutually agreed that it was time to search further and get specialist advice

We would swing in roundabouts - she would have good and bad days - on good days I was sure everything would be fine - perhaps I was just paranoid and on bad days, she would barely move - once mum put her down on the sofa, her hand got caught behind and she did not flinch. We were scared as some basic reflexes did not seem present. Thanks to the positive input and support of my family and husband and kids we all have just kept going and always positively and Talia is a very happy baby. Despite this agony - she is such a pleasure to be with and seeing her with her sisters who so adore her makes me so happy.

Talia head control

At two and a half- three months of age, I started to worry as Talia´s head was really floppy. Cognitively she seemed all there but her muscles and body just seemed so week. She seemed like a rag doll. Car trips were really scary as her head would bob up and down. My husband and I would drive - one of us constantly trying to hold her head up and also watching out to make sure she didn't vomit. Cognitively she seemed ot be developing although 3 months is still early to tell. Thankfully I spotted Talia falling behind immediately as I have 2 other kids and clearly remembered them at that age. My paediatrician was great and monitored us on a weekly basis but she stayed around 3 kilos for ages - now at 7 months she is only 4.45 - so you can see how slow everything is. At about 3 months we had a scan of her head done through the fontanelle and thankfully it was clear. We decided to give her till four months as really she could have just been a slow developer and given problems in the womb - perhaps she would catch up. By four months her head control was starting to improve and cognitively she was all there - she could follow us around the room and chuckle. She was the most loving and warm baby. My two other girls were fantastic with her, constantly stimulating and cuddling her.

Projectile Vomiting -Reflux

In the first 8 weeks of her life, Talia put on weight ( between 150-200grams a week). We were all so happy with her progress although she started projectile vomiting - I would feed her a breast and she basically would never stop until I stopped her. I would have to hold her up for hours until finally I could lay her flat. If I let her feed for too long, she would immediately projectile vomit andt the amount coming out of her was alarming. My back was in agony as I would fall asleep propped up on pillows just to keep baby Talia at an angle so that she wouldn't throw up - but as long as she was well and growing, I didn't mind. My paediatrician diagnosed her as having reflux which is fairly common in newborns so I didn't worry. However when on week 9 Talia lost weight, I started to worry - and from then on it has been a real battle. Whilst the vomiting ceased at 3 months, the weight is still a problem.

Talia´s hips

July 2007
We were sent to check Talia´s hips as she was breech and female and apparently all breech females need to be scanned to ensure their hips are ok. Hers were abit out but not bad enough to warrant a harnass. Instead we needed to put her in a double nappy - finally in October we were given the all clear on her hips.

Talia´s birth

Prior to Talia´s birth, I was always a little concerned as she was not as much of a wriggler as my other two kids - deep down it was a nagging thought in my head.

28th June 2007
Talia was born via cesarian. She was a breech baby so never turned. At 39 weeks plus three days they decideded to do a c-section. My gynecologist is based at Hospiten in Estepona. He was wonderful throughout the pregnancy and had been concerned about me from the start. Anyway he carried out the c-section and a gorgeous but tiny Talia was born weighing 233 kilos and 45cm long. Although my other two kids were tiny too when first born ( 2.5kilos and 2.7 kilos), Talia just looked so much smaller with her ears all scrunched up.

The paediatrician their checked her through and she scored quite high on her Apgar tests.

Hospiten was great for comfort - nice private room that I was paid for me by my insurance company Sanitas (if interested can contact hamilton-insure.com). The only negative thing I can say is that the waiting times can be horrendous and when i went in for my c-section I was starved from the night before and didn´t end up in the op theatre till 15:00.

The only problem with delivering in Spain is that they are great at looking after you before and after pregnancy from a medical point of view but unlike the UK and Gibraltar, after you deliver, you are on your own. No one visits you at home, no one teaches you how to breast feed - they take your baby and bring baby back bathed (wonderful if you are a third time round mum like me but if a first time mum, you may like to be shown).

Anyway apart from the above Hospiten was great and after three nights there, I left hospital to stay at mum´s for a while as after the c-section the thought of going home with 3 girls, steps in the house and no garage space did not appeal to me. when I left Talia was only 2.1kilos.

Things were great. The Summer was fantastic. Loads of family came over and saw Talia - we were pretty relaxed with her - she was a good baby - she slept up to 5/6 hours a night and nursed really well - no sore nipples and she complained very little.

Baby Talia

Well its been a while since I last posted in my blog and that´s cos its been quite a tough time for me. As you will know if you have read this blog, I was on bed rest cos Talia wasn´t growing within my womb. I don´t know what went wrong but it seems to have all started at 26 weeks when I was on holiday in HK and bled substantially - since then baby´s size and rate of growth was a problem. All seemed more or less ok for the first 6 weeks of Talia´s life - she was putting on weight and appeared to be thriving, but then she started to miss key developmental milestones and since then I have been trying hard to find out what she has and how I can help her.

She is a beautiful, gorgeous baby but at 7 months she only weighs 4.45 kilos (with clothes on!). She eats and sleeps but does not grow.

I am going to go back and post what has been happening, the research I have done and the doctors I have seen in the hope that women in a similar position in Spain can hopefully learn about the system etc through this blog. I also hope that anyone reading this who recognises signs or symptoms can contact me or comment and help me to help my darling Talia.