Question: My daughter is 17mths old. Ongoing undiagnosed puzzling seizure & low blood sugar "episodes". She has had difficulty with bright light at night since birth & now can not tolerate light indoors. I am in the UK. Drs in the NHS have given up and I don't know what field of private specialist to turn to first.

Dear Dr XXXXXXX Firstly thank you for giving me such a quick and detailed response to my question. I wish I had found you before! I have made an appointment with my GP for tomorrow in the hope that she will give me some of the results from tests not previously revealed. My daughter has had many tests including metabolic blood tests. Is it the blood tests that you would need? The other tests that she had were MRI, EEG and Barium meal all at 9 months after repeated seizure episodes both at home and as an inpatient. These 3 tests were clear at 9 months but were not performed by pediatric experts. I also noted she had something called an ix test done (maybe more than one). All pediatric appointments were stopped indefinitely after this and her records held from me. It has been so frustrating and heart breaking when I see her in agony yet am confused at what to do. Could you please tell me what blood test results to ask for tomorrow at first to get started? Also, would taking her to an optician help at all? I ordered a Philips Livingcolors light that changes the room light temperature and the red or orange setting seems to be soothing her. She has never tolerated television. Now it is much worse. Suddenly it seems to be worsening on a daily basis. Again sir, I can not thank you enough.

Hello Dr XXXXXXX I really can not thank you enough for your wise and thorough responses. I have begged my doctor for my daughter's records and / or a referral to a pediatric hospital but every GP has refused. I have many witness accounts and videos of cluster absence seizures, jerking at night and very pale "spacey" events. There have been many times when she has been unable to be woken and been floppy. I have taken to giving her dream feeds at night which has helped. Had her food allergies tested privately and restricted her diet thus and have her on Nutramigen AA formula still. I, myself, have epilepsy and have an assistance dog who is seizure alert trained. He does alert me to various episodes of my daughter but I am confused just what they are of course and what to do. At least he wakes me up. Yesterday her eyes hurt so badly she could not bear to go out into the sunshine. It broke my heart. She loves to see and play with other children in the park. One of the times that she was in hospital I remember they did her blood sugars a lot and they said that it was 4.0 when she was fasting and 4.0 when she had eaten each time which seemed strange. Because she was admitted with 1.7 and then it was raised to 8. something after just a fruit pot yoghurt. The only time they did her urine was at 2 weeks old which is when I presume they did ketones. They did a scan of her kidneys and they were a little on the small side at the time but "nothing to be concerned about" they said. Now I am told that they were not small. They did not scan again. I must say that this is not typical of a British hospital. There are some very good ones here. However, I do believe I am facing some racial diversity unfortunately and I am not very good dealing with confusion. I prefer to know facts, good or bad. Even a guess is better than the dark. So I appreciate your caring time. Thank you so very much. Sincerely and with great respect.

If I were to consult a private doctor could you please advise me of what specialty to first direct me to? I am confused whether to consult a neurologist or a diabetic paediatrician at this time. Thank you for your kind and prompt answers.

Thank you so much Dr. XXXXXXX I can honestly say you have been incredibly helpful and I thank you from the bottom of my heart. Bless you MB