sparrowkate

Same thing happened to my daughter - IV fluids in an emergency worked great. Following this, our consultant was happy to organise weekly IV fluid sessions for Issy but, as there are risks involved with this, we collectively agreed to try an NG tube first. She had this fitted 6 weeks ago and it has worked a treat. Might be something to consider as an alternative, less invasive treatment. Particularly if you feel you are regularly needing a fluid top up. Issy has a narrow size tube, just for fluids (not one of the fatter ones for feeds). It was a bit uncomfortable for the first week, and we had to experiment with which foods she could eat with the tube in, then it settled down and has been great ever since. She has been squirting dioralyte through it and has significantly increased her daily fluid intake. Now she can drink much better normally and just uses the tube as a top up, or when she is having a bad patch. She says it is great!

Hello Miriam, I have just read your post and can really identify with what you are saying; battered sums it up. My daughter, Issy, has POTS, EDS and gastro problems. We are in Essex and go to London for treatment, so I don't know about Sheffield. Maybe someone else on the forum can help here. Issy had a tilt test at Hammersmith, which was very useful. She is now on Florinef and this has helped. Grace is doing marvellously well to manage such a good quantity of fluids. Nausea has been the worst thing for Issy. Mega awful. She sees a gastro specialist at Barts and the London Hospital (Dr Rawat - super!) I reckon it would be worth you sorting out a gastro referral for Grace. Nausea can be because of problems like slow gastric motility. Worth getting it checked out. Also worth checking out mast cell issues, particularly with your family history of autoimmune. I think that what works is different for every individual, so it seems to be trial and error. This in itself is difficult - time off during the GCSE years for hospital appointments and then more time off when she had side effects from the drugs she has tried. Very tricky. For what it's worth, the most helpful thing for Issy has been to allow her to sleep. If she sleeps as much as she needs (sometimes hours and hours), and gets up when she is ready to - the awful nausea is gone and she has pink cheeks. If she tries to get up before her body is ready, then the nausea lasts all day and eating/ drinking is difficult. When she does too much and the fatigue comes back - then the nausea returns. With more sleep, her health is currently improving rapidly. I am sure that others will chip in with some good information for you. There are some extremely knowledgeable people on this forum. However, I share your battered feeling and the need to protect, so thought I would say "hello". Hope you find a way forward. Katie

Oh my goodness; this is a timely topic! Daughter is waking up at 3pm as well! She is really struggling with fatigue and is sleeping for hours. She has only been to school for one afternoon since Christmas. I have been finding it so difficult to get her up, then more effort for tablets, drink and food. Nice to know she is not alone in this...

My 16 year old daughter had major memory lapses for about 2 years. School work didn't stick in her head...she couldn't even remember doing the lessons! However, she is now back to being bright as a button (in the afternoons and evenings, at least, once her nausea has settled). Improvements started with Florinef. Then she got a further boost when she started taking melatonin, so was getting proper sleep. A final improvement came with citalopram. Touch wood, the memory improvements have been consistent now for 6 months. It has made a huge difference to her. Hope you find something that works for your daughter. Katie

Hi June, Issy has had/ still has lots of similar problems, so I feel for you and your daughter. Issy had mega problems with getting to sleep. Like your daughter, she was going to sleep at 6 in the morning. Really isolating and depressing for her. A paediatric dose of melatonin worked wonders. We have had a better few weeks, but her sleep cycle shifts again given half a chance. Issy struggled to see her friends; she just felt so poorly. Facebook, texting and Skype have proved a lifeline, as she can chat even when too ill to get out of bed. However, I know your daughter is a bit younger, so this may not be so suitable. School is a tricky one. Issy hasn't been at all this past term; she had become too ill to attend . She has recently spoken more about the problems she faced at school. Basic problems like the fact that every time she did attend, she wouldn't have a clue what the lessons were about as the class had moved on to the next topic. Also: gossiping girls, teachers who don't understand. Physical discomfort - noise and light triggering migraine. Unable to eat in the dining hall, because of the food smells. Trying to function with constant nausea and frequent fainting. In conclusion - stressful and difficult. Maybe the day programme for your daughter will be somewhere without these stresses, that she can relax and enjoy attending. I do hope this works for you both. Katie

Hi TCP, My daughter's specialist is a paediatrician, so I guess this is not what you need. However, a couple of our doctors have mentioned the Autonomic Clinic at UCLH for adult POTS treatment in London. For EDS treatment, it is worth looking at the list of consultants at the Hypermobility Clinic at the Hospital of St John and St Elizabeth, London. Although this is a private hospital, we have seen some of these doctors on the NHS, and they work really well as a team. Hope you find someone suitable.

Hi TCP, We are in UK and have access to both Florinef and Midodrine. I think Florinef is licensed but Midodrine is not. According to the POTS UK site, the license for Midodrine has been applied for. Issy's initial prescription for Midodrine came from her POTS/EDS specialist in London. Our GP was happy to provide repeat prescriptions on the NHS once she had received written instructions from the consultant, although she had to check with our local health authority first. Incidentally, our GP has done the same with a paediatric dose of melatonin, which is also not licensed here. We collect Florinef, Midodrine and Melatonin from our local pharmarcy. They have to order them as "specials", so they take a few days to come in. Hope this helps. Hope you have a consultant who is able to prescribe for you. Katie

June, oh dear! Your poor daughter. It is miserable for you and her. Issy has migraines and stomach problems too, so I can relate to what you are going through. It is tough on them, isn't it. We just seem to get one bit of Issy fixed and then another bit goes wrong. Good luck with the cardiologist. Let us know how you get on. Becia - I hope they find something that helps you soon. I can't even begin to imagine what it must be like for you. Thoughts are with you. Katie

June - Hello, I am another mum here. It is so worrying, isn't it. Just had a thought - did your daughter start passing out more frequently when she started taking the midodrine? My daughter, Issy, had this problem. Previously she just had blackout, dizzy moments but this changed when she started midodrine. It seemed that when an individual dose of midodrine wore off, she was very prone to passing out. So she collapsed completely quite regularly in the evenings. She had a few bumps on the head and a cut on her forehead. And we would hear a shout of "Mum, Issy's on the floor again..." She stopped midodrine and started fludrocortisone. Since then she hasn't passed out. I hope you can sort out something on Monday, at your recheck. Thinking of you. Katie

Hi everyone, We are in Essex. Youngest daughter is getting good paediatric treatment in London for POTS/ EDS (Imperial and the Royal London). Our GP doesn't really know much about POTS but she is very supportive; she has one other POTS patient now. Sarah Jane - I hope you sort out your problems with the TTT at Hammersmith. I struggled with them as well; it took lots of chasing to get the results.

I really do feel for you. Constant nausea makes everything miserable. My 16 year old daughter, Issy, has had similar problems for the past 2 years. We have tried lots of different ways of coping with the nausea and brain fog. For Issy, things improved dramatically when she started taking Florinef a few weeks ago. The nausea reduced significantly. She has colour in her cheeks, is chatty and quick witted, and is eating and drinking better. It is early days with this yet, but so far - Wonderful! Other things we have found helpful: 1. Increase salt and fluids (check with doctor before increasing salt). Difficult when feeling nauseous! 2. Eat little and often. Keep tempting snacks to hand, for when you feel able to eat them. 3. Keep a food diary. See which foods improve matters and which to avoid. Ginger and mint can help. 4. Get any other basic gastro problems sorted. Issy had duodenal ulcers and slow gastric motility. She also had swallowing issues because of eosinophillic oesophagitis. 5. Reduce stress where possible. I guess this may be tricky for you, with your little ones, but if you can get any extra support, then do. Our gastro consultant described it as a "nervous stomach". Keep trying different things until you find what works for you. It sounds like you are doing a great job in keeping going, even though things are tough. Sending you very best wishes from here in England and hope you feel better soon. Kate

Did you feel better for the extra sleep? My 16 year old daughter (POTS, EDS) has had a couple of mega-sleeps. Last time she slept for most of three days, just waking occasionally for food and drink. On the fourth morning she woke up feeling great, without her usual dreadful morning nausea and brain fog. It was the first time in 18 months that she had felt really well. We had a lovely day together, then the next day she was poorly again. The only way she can normally avoid the morning nausea is by not going to bed at all. She has done this a couple of times when she has needed to be functioning in the morning.