The biggest issue that I had to face in the US was the question of tube feeding. I was expecting the subject to be brought up but despite this expectation, it still hit me in the pit of the stomach when Dr Parikh and his colleagues recommended that Talia be nocturnally tube fed via a g-tube. To be honest the thought of feeding her this way makes me feel a little ill. But why am I so against it?? To be honest, for months when Talia was 4, 6, 8 months, I asked for it, I suggested it, I wanted it. But at the time, Talia was feeding badly due to her low tone and inability to suck an swallow. However, now, my darling baby loves her food, relishes it even. From crisps to avocado, mealtimes - yes they take long, but they are well worth it. So I have many reservations as it has taken me a long time to get her to learn to chew and swallow. My husband was really tough on her refusing to feed unless she opened her mouth and now she cando it beautifully. She eats an average of 1000 kcals a day and that of a two year old should be 1200 but remember she is the weight of a 2 month old!! Wont feeding at night make her lose her appetite in the day???? WHAT ABOUT HER MUSCLES? Feeding is a great way to exercise the mouth muscles - will she get lazy??? BUT worst of all for me is the thought of putting her under a general anaesthetic to carry out the procedure. Tália is extremely sensitive to it and I feel it is a very big risk.
On the other hand, I have to look at pros, look at cases. The nutritionist in the States said that the procedure was very simple. They agreed to support me from abroad - answer any questions etc. They really were so giving and warm and happy to let me ask as many questions as I wanted.
Could my closed minded approach be bad for Tali? I realize that I need to consider this option carefully and need to study it. In order to do so, I have contacted the gastro dr here in Malaga and after chatting about it we have decided to give Talia until October/November to make a deision. The procedure here is pretty much the same but the doctors think I should work a bit more with the diet side of things prior to making a decision. Also in August we are attending a Walkng with Giants Conference. Many children attending will be tube fed. It will be good to get some first hand advice and opinions from parents and kids.
Just now I am gong to do everything in my power to build up Tali's strength and weight. I know that when the time is right, I willl know what decision to take. As Talia loves swimming, I had already decided not to do anything over the Summer. Our lives are here to enjoy, to make the most of. I want her to enjoy the beach and pool. She is such a happy go lucky and happiness is key.
Monday 27 July 2009
Saturday 11 July 2009
Meeting the Doctors
Well its been a while since I wrote. So much seems to have happened. Each day seems so full to me - just not enough hours in the day. I realize that I started writing about our trip to Cleveland but just stopped. So much has happened since but I will try to summarize as best possible.
Meeting the Doctors:
Meeting Dr Parikh felt a bit like meeting a world famous actor. I had read so many of this man's articles on the web, seen so much about him on the UMDF (united mitocondrial disease foundation) site and more than anything used the mito handbook and emergency letter produced by the UMDF with Cleveland Clinic. I seriously felt as though the literature from them was a little light in the dark. I was convinced that had it not been for these documents, information on the web, I would be way behind. I also was sure that Talia's last hospital recovery had been thanks to this literature - so I enetered the appointment with so much expectation. Needless to say, he more than lived up to them.
My sister-in-law completely took charge of Tália, singing, playing, even feeding her at one point. She knew how important these appointments were to me. I arrived with a notebook bursting with questions, with a folder of notes bursting at the seams news and a dictaphone, looking more like a ews reporter than a mum, I guess. Probably a Drs greatest nightmare - opinionated mum, wanting to understand everything and unwilling to stop - but hey what can I do.
Dr Parikh sat with me for a good two and a half hours and his patience was astounding. He literally sat down and chatted me through his thinking process and put it all in layman's terms. This was what I needed. Someone to talk to, someone to question, someone who wouldn't laugh at my perhaps, basic questions. In fact, he empathised warmly and immediately I felt at ease. How my sister-in-law sat through it with Talia and did not even bat an eyelid or mention the time is beyond me. Now that I am home and re-living it, I just really am beginning to realize how much she did for me. I was so focused on the meeting that I just left it all to her. Talia felt so comfy with her. So happy.
Clearing a few Doubts
One of my key reasons for going to Cleveland was to find out whether the diagnosis was correct. Did Talia really have a multiple complex deficiency? Whilst I was led to believe she had primary mito, some things didn't stack up. Her complete doll like appearance and stature for one. I searched for images on the web. I searched for parents with kids with mito but couldn't pigeon-hole her. Then I discovered MOPD and Russel Silver and whilst many Drs say she does not have dwarfism, I am still unconvinced. Dr Parikh confirmed to me that whilst nothing was clearcut, that my line of thinking could be correct - the mito could actually be secondary ( eg a symptom to something else)and probably was. Naturally, in order to get to the bottom of this, more testing would need to be done to eliminate syndromes such as prader-willi etc.
Meeting the Doctors:
Meeting Dr Parikh felt a bit like meeting a world famous actor. I had read so many of this man's articles on the web, seen so much about him on the UMDF (united mitocondrial disease foundation) site and more than anything used the mito handbook and emergency letter produced by the UMDF with Cleveland Clinic. I seriously felt as though the literature from them was a little light in the dark. I was convinced that had it not been for these documents, information on the web, I would be way behind. I also was sure that Talia's last hospital recovery had been thanks to this literature - so I enetered the appointment with so much expectation. Needless to say, he more than lived up to them.
My sister-in-law completely took charge of Tália, singing, playing, even feeding her at one point. She knew how important these appointments were to me. I arrived with a notebook bursting with questions, with a folder of notes bursting at the seams news and a dictaphone, looking more like a ews reporter than a mum, I guess. Probably a Drs greatest nightmare - opinionated mum, wanting to understand everything and unwilling to stop - but hey what can I do.
Dr Parikh sat with me for a good two and a half hours and his patience was astounding. He literally sat down and chatted me through his thinking process and put it all in layman's terms. This was what I needed. Someone to talk to, someone to question, someone who wouldn't laugh at my perhaps, basic questions. In fact, he empathised warmly and immediately I felt at ease. How my sister-in-law sat through it with Talia and did not even bat an eyelid or mention the time is beyond me. Now that I am home and re-living it, I just really am beginning to realize how much she did for me. I was so focused on the meeting that I just left it all to her. Talia felt so comfy with her. So happy.
Clearing a few Doubts
One of my key reasons for going to Cleveland was to find out whether the diagnosis was correct. Did Talia really have a multiple complex deficiency? Whilst I was led to believe she had primary mito, some things didn't stack up. Her complete doll like appearance and stature for one. I searched for images on the web. I searched for parents with kids with mito but couldn't pigeon-hole her. Then I discovered MOPD and Russel Silver and whilst many Drs say she does not have dwarfism, I am still unconvinced. Dr Parikh confirmed to me that whilst nothing was clearcut, that my line of thinking could be correct - the mito could actually be secondary ( eg a symptom to something else)and probably was. Naturally, in order to get to the bottom of this, more testing would need to be done to eliminate syndromes such as prader-willi etc.
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