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.

Back to blogging

Well the days go by and each day I have the intention of signing on and writing but life is pretty hectic and full for me at the moment. I am juggling three kids alongside attending sessions at Aprona each day and trying to help my husband by working from home whenever I have spare time (basically after kids go to bed!). Anyway I hope to continue my story and I go back now to our time in the UK. Below is an extract from my diary of a day that still sticks out in my mind - the day of the MRI scan:

Day 6 UK
An extract from my diary

Woke up bright and early today – my stomach was in knots. This was the big day. I prayed so hard. We parents make so many decisions and sometimes the responsibility is terrifying.

Two coffees later, we found ourselves in the paediatric ward of the hospital. We read through numerous text messages from friends and family all sending well wishes and love. These little messages are so wonderful, keeping us constantly aware of the love and support we have. The sky was blue and it was a crisp day – I was longing to go for a walk outside and stroll around with Talia in the pram

My husband and I watched everything and everybody like hawks – we watched the quantity of sedative etc. I was really quite anxious but tried to keep my façade of looking cool, calm and collected – inside I felt slightly sick and jelly-like. Talia was weighed and she is a total of 4.180 kilos.

We were taken into a room where a drip was placed into her hand – this was horrible to watch but luckily the doctor was so professional about it that it was soon over. Talia looked a sorry state with her arm all bandaged up. Luckily the sedative worked quickly and within minutes she was fast asleep. We were given a special machine attached ot her tiny thumb which gave us a reading of her pulse and oxygen absorption level. I watched the screen and refused to take my eye off it.

Seeing Talia sound asleep, the nurses managed to bring our appointment forward to 10am. I was allowed into the room with her during the scan and after answering a few questions I was allowed in. We had to lie Talia on the bed and cover her ears with special headphones. MRI scanners make a very loud noise and this is why Talia, myself and the nurse all had to wear headphones. The room felt cold and icy – thankfully, I had brought Talia’s snugly blanket.

The scan was, thankfully, over quickly. I just kept praying visualizing, my grandfather, great uncle and Guru watching over Talia and protecting her. She looked so vulnerable.

Now I’m back upstairs sitting next to my Talia waiting for her to wake up. I have never been so desperate for her to wake up before. The doctor has just come up to see us and says that he’ll get back to us later this afternoon regarding the results and how to take all this forward.

13:15 – Here we are still waiting for Talia to wake up – she is still sleeping and Andrew and I are a little nervous – her eyes are starting to flutter. My husband has just spoken to my mum and she is doing some ‘Om trayam bhagams´ ( Sanskrit mantra for Talia’s well-being and protection) with my sister in law. I really don’t like this sedation – I just want my smiling Talia awake again – she has been under 9ish.

21:00 Talia finally woke up around 16:30 much to our relief – we were worried we would have to stay at the hospital. What a day it has been, I am emotionally exhausted. Thankfully we are staying with my brother-in-law – its good to have supportive family around. My sister-in-law has just been a pillar of strength and has kept my other two girls busy – they have had a wonderful time – walks through the parks, playing with squirrels and sleepovers with their cousins. The doctor came back with the results and much to our relief there seems to be no gross damage. Despite the latter, he would like us to see a specialist neurologist in Harley Street tomorrow. Right now, I am so exhausted and need to lie and watch my baby.

Day 3 - Appointment at the hospital

We got up bright and early - this was the big day. I lept out of bed at 5:45pm - after all we had looked forward to this day for months. Each doctor, each new medical institution brings with it new hope, excitement and a little nervousness too.

Perhaps this would be THE DAY - the day when we find out what is going on, the day - maybe it will put an end to the waiting , concern and uncertainty - maybe will get a diagnosis... Or will it open a new can of worms - whatever it is we are moving forwards and we need to do that.

Anyway I got the girls ready and we had breakfast at around 7am before heading to my brother-in-law's house. My husbands parents and my sister-in-law were waiting for us - we deposited our kids with their grandparents and cousin and then my sister-in-law drove us to the hospital. We really are so lucky to have so much wonderful support from the family. Everyone keeps coming together to help us and at least it means that the other two girls can enjoy their holiday. Despite the anxiety - this is one of the most beautiful things that has struck me at this difficult time - I have received so much strength and support. Friends calling up - even acquaintances that I barely know come up tome and offer to help; Talia beautiful toothy smile and warmth attracts people from everywhere. Her drastic small size alongside her adult expression and questioning eyes attact attention from everywhere.

The hospital was really very nice - very well done up and professional looking - quite different from the Spanish equivalent. The hospital was huge and spotless - I know that you should never judge a book by its cover but regardless the efficiency and cleanliness did help me to relax. This alongside my sister-in-laws presence was very soothing.

We were seen quite quickly - my husband and I are used to spending hours at hospitals - he always brings his computer and sets up a mobile office but this time the wait was quite short and we sat chatting to my brother and sister-in -law.

The Dr was very professional. He gave us lots of time and attention. He already knew what to expect as he had studied Talia's results and photo prior to our visit. After a thorough examination and full patient history, he explained that he had expected Talia to lookk more 'syndromey' - she looked better in the flesh than in her photos. apparently her facial muscles seemed more droopy in the photo but here in person she seemed to have better muscle otne in her face. His main concern was her weight - she is way under the charts and is diverging from the norm rather than converging and this troubled him.

He finally looked at us with a frown on his head and a look of concern - he was kind and empathetic and obviously what he wanted to tell us was tough and he did not want to be the bearer of bad news.

Anyway he said that we needed to check her brain development. He was concerned that the 26 week bleed had caused gross damage to the brain and felt the next step needed to be an MRI scan. We discussed this and then he agreed to call us that afternoon with an appointment for early on in the following week.

My husband and i came out in a daze. Thankfully his brother and my sister-in-law were with us. We were strong but I could feel the tears welling in my eyes. One side if me wanted to ball my eyes out and the other side of me just kept saying,'you're fine. Look around you. You are so lucky - you have two beautiful girls and this gorgeous baby - don't give in'. Then I tried a yoga tool called 'Pracktipakshabhavana´ -replacing negative thoughts with positive ones. I thought of numerous cases that I knew of - parents with twins who were both severely handicapped and where the parents couldn't even afford a pram, children dying and living in war zones and I also thought of many kids who do suffer brain damage and still manage to have relatively good standards of living. Deep down I know that we will play with whatever card we are dealt and that we will cope no matter what. Nevertheless it was an emotional day and my heart felt heavy - I had a dull ache in my heart. I looked into my husband's eyes and knew that he felt the same - we are in this together.

Our family were fantastic and I was pleased to get back to my mischievous kids. We stayed with my sister-in-law until after supper - we needed the emotional support that the family were providing for us

UK Diary - day 2

Nice day - no doctors planned so we can ease ourselves into being in London. Got the girls ready and we had a leisurely breakfast at the hotel - an eat as much as you like breakfast buffet... O-Ooh -there goes my diet! I need to lose weight but when faced with 'already paid for' breakfast - one needs to make the most of it, don't they? I mean it would be wasteful not to do so - wouldn't it. We decided we would have big breakfasts and dinners and light lunches (if at all). This decision meant that I wholeheartedly threw myself into my breakfast - adding in extra for energy!

Spent the morning walking to Covent garden (15/20 min walk) and Oxford Street. Bought a few bits and pieces - nothing very exciting. Had a quick soup and then headed to my sister-in-law's house for tea and an early supper. Was lovely to spend time with my sister in laws and their kids. As soon as the girls got there - they disappeared with their cousins, only to be seen again when it was time to leave.

Went to bed early, exhausted and thinking about what the day ahead held in store for us. We would be seeing a Paediatrician in the morning .... what lay in store for us????? Would we finally be closer to having an answer for Talia. Before sleeping we made the following list:

Key Questions

1. Do you think this is neurological, a syndrome or metabolic?
2. Does she need an MRI? If so what are the pros and cons? Are there any risks?
3. Is her TSH abnormally high - could she need treatment for hypothyroidism?
4. If she goes on like this weight-wise what can we do? How can we maximise her calorie in-take?
5. We have looked at some syndromes, e.g. Prader -Willi, William's - does she look that she could have one of these?
6. Could she have a dairy intolerance? Should we be trying other milks - such as Almond?
7. We have been using Maxijul - how often should we be using it?
   
8. Should we be giving her vitamins?
   
9. What can we expect in the future?

Symptoms and History

1. Weak muscle tone (hypotonia) especially her hands
2. Low intake of liquids - diapers are rarely wet
3. Problems taking a bottle but takes breast fine
4. Weight issues (failure to thrive) - weight leveled off and actually lost a little over last month
5. Born small - 2.320kilos, Height - 45cm, via c-section as she was breech
   
6. Weight gain fine for first 7/8 weeks
7. Dribbling when exerts energy (but could also be due to teething)
8. Delayed developmental milestones
9. Small head but in proportion to overall body
10. Suffered reflux - first 3 months
11. Choked in August (slightly) - could this have affected her

Pregnancy

1. Bleed at 26 weeks
2. Bad flu and prescribed antibiotics at 32 weeks
3. Partial Bed rest from bleed till end of pregnancy
4. Intrauterine growth problems in womb after bleed. Baby grew at a much slower rate

Feeding (typical day)

1. Early Morning - couple of oz (40-60ml) milk
2. Cereal with milk or fruit with milk - 125ml (max)
3. Lunch - 125ml of veggies or rice with chicken etc, often followed with a pudding (yogurt, fruit etc
4. Dinner - 125ml food and sometimes a pudding
5. Milk before sleeping - about 60ml
   

Diary of our time in the UK - Day 1

Day 1 - 20th Feb 2008

The Journey
On our way to the UK. We were all organised this morning - that certainly makes a change. Syaing in yesterday was a good move. It gave me the opportunity to sort through Talia´s paperwork and results at my own pace whilst the girls were at school.

Well,e mum and Dad were fantastic and came with us to the airport to give us a hand. Just really helps to have extra pairs of hands! Now we´re on the plane and so far, so good. Talia is on my lap and fast asleep - I fed her a yogurt on the way up so that hopefully her ears will be ok. She looks so gorgeous! The other two girls have been great (so far!!) They dressed themselves this morning and even managed to do a Kumon before leaving at 8am! Now they are busy pouring over their Nintendo an d eating skittles -a treat for the plane, the onetime their mum lets them have sweets. Andrew is excited to be on holiday and is leafing through his ´PC Answers´- his idea of a light read!

London
We are staying at the Premier Inn in central London and it is fantastic - we have a family room and it is huge. It is clean and very tastefully done up. They have just expanded and refurbished so our room looks brand new - even the cot still has a label on it. This actually is better than a 5 star hotel -so spacious and clean.

Dinner
My niece came over for supper and we had a lovely meal at a nearby Pizza Express. Umm - I love the American Hot Pizza and warm dough balls. It was so lovely to see my niece - she is studying in London, doing a degree in Physiotherapy. We have a large family and it is nice to see people on a one to one basis. We had a great meal and the girls were so excited to see their cousin.

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.