anna

Hello chrissy, I have been trying to keep an eye on my daughter when she eats and have noticed that she goes red and hot most times when she eats now, but her bp is not always that low, infact some times it goes a little high. So not sure what is going on here. But I will be bringing it up her paed. next month, see if she might be able to shed some light on the matter!! Thank for your input, Anna

I realise about the asthma problems so not sure if this is relevant, but I was put on Cardicor (Bisoprolol hemifumarate) I have tried Atenolol and a few others but they made me very pooply, but so far this latest one seems ok!!! no breathlessness, no died wieght feelings, no chest pain etc. I do not have asthma by the way, but i do tick many of the things on the do not take if list!!! but it seems to have got to the point that if I do not take the B.B's my heart MVP will become a too bigger problem to fix by meds alone!!! So may be it really is a matter of trying them all to find one that works for you! (well your friend). I hope your friend finds something soon. Anna

hi all, I have been looking into the mast cell thing, not sure whether my daughters paed. will want to look into this one!! But I will talk to her soon as kids have a reveiw soon. Thanks again for your input guys. Anna

Just to add more confusion!: I remember reading that mast cells are made of connective tissue and move throughout structures within the body that are made of connective tissue, so my guess would be that MCAD might have something to do with fauly connective tissue synthesis as seen in a number of HCTD, my thought is that only people with a spacific collegen mutation, might be prone to MCAD, that could explain why some people with EDS for example have MCAD symptoms and others don't. I know that my families EDS has an odd mutation as our genetisit explained that our EDS is no doubt linked genetically to our hareditory essensial myoclonus as he called it 'a novo mutation' (well something like that)!! Anna

Hello all, Can I ask if this is a POTS thing! For the last 3 or 4 months now ever time my daughter eats her face will flush, she is more worn out than normal at the moment too. Anna

Hello again Maxine, I am not sure what an upright MRI would show, but my daughter uses a traction coller with some sucess, so I thought she may be compresing some artery, the problems tend to happen when she is tiered or if she rides over a bump in the car etc. Also if she turns her head too far left it will cause problems. I will be having a word with her paediatrician in April to see if I can get a referal to someone that has some idea of these problems!!! Anna

Hi Maxine, Can I ask if you have ever had a MRI in one of the new 'sit up' MRI mechines?! We have such an MRI in London and I really wander if this might show up my daughters problems better than a normal type MRI, I would be willing to pay for this type of MRI if it was likely to show her problems up as we are really going mad with orthapidic Dr.'s telling us my daughter is making it all up and that it is imposible to have such symptoms without huge truma!!! Anna

Hello all, I get the same disoriantation, have done for years, my GP explained to me that he is sure it is to do with a poor blood supply to the vestibular area of my ears causing vertigo, he said I could try some meds to help reduce this sensasion, I take Cinnarizine, helps a little, also tried Nitro tabs as GP thought it might also help with my Raynard's type problems too. I could not tolarate the Nitro horrid head pain, I have been prascribed some other meds that are to help folk when they have a Meniere's attack, that helped when vertigo very bad. My kids also have bouts of this kind of vertio, one of my boys is on cinnarizine as a proventative at the moment as his bouts of vertigo are getting very bad. Most of the stuff you read about vertigo is to do with inner ear infections but my GP is sure ours is to do with inpaired blood supply. Anna

Hello, I am begining to think me and my kids have some weired sub set ANS dysfunction, as we all have an odd problem with breathing. We will be breathing quit normal then out of the blue it is like our brain has forgotten to tell our lungs to breath, then we tend to gasp for air and have to focus on breathing to get it back to some kind of normal rythem. It feels a bit like when we have these missed heart beats it feels like a breathing hicup. We still have not discussed this one with our Dr's!!! Anna

Hi Julie, CEDS stands for Classical Ehlers Danlos syndrome. Anna

Thank you Flop, yes that makes more sense to me now. My kids are all up for a review with Paed. in the next few months, so I will bring this up and a lot more me thinks!! Julie. Just looked back at my kids meds they have all been on and off Cetirizne an antihistamine for years. Infact No.1 sons GI paed. wants him to stay on it till his guts are sorted out!! My daughter also gets acid reflux problems swallowing and food getting stuck in her throat etc. on bad days she tells us her throat feels like it is very 'big' we decided to try the antihistamine the last couple of times and she seems to feel better by the end of the day, so I am not sure what is going on there. My childrens last paed. was a very kind man but really did not look at all the kids problem as part of a bigger picture, they have a new paed. now and I think she wants to 'sort things out' as she put it. Anna

Thanks for all the input guys, I will try to get paed. to read info on MCAD, but I worry a little as I have already got a name for myself as a mum that has too many medical things going on!! Sure you all know that one! I am glad that my son's GI Dr. is willing to think out of the normal GI box so I may have some luck sorting my kids out after all. Flop, About my daughters Bee sting reaction, we are still not sure if it was an allargy responce or an ANS responce, GP never bothered to look into this further but I got a RAST test done via GP surgery with a little push here and there, after that, GP said they assume all is alright as lab did not write other wise, I still can not make out lab results. It reads on 1st. page:- Blood (RAST) ALLERGIC REACTION TO BEE STING Number of Antigens = 1 Total IgE = 10 Ku/L (ref 0- 97) Specific IgE to Bee venom = 0 Specific IgE (RAST) Classes: o- Undetectable 1- Low 2- Moderate 3- High 4 to 6 - Extremely High Next Page Reads:- Blood (IgE) ALLERGIC REACTION TO BEE STING Total IgE = 9 Ku/L Sorry but I am a bit thick when it comes to things like this, what does it mean? Thanks again guy's. Anna

Hello again, Thank you firewatcher for the articles, most useful. Julie, Well the story so far I and my 3 children have a formal diagnosis of EDS3 the children also have a diagnosis of probable POTS!, but defnite autonomic dysfunction. This time last year one of my twin boys became very poorly, with very bad epegastric pain, bad diarhea, frequent urination, very low BP and high HR. His GP first thought it was a virus but it went on and on we went back to GP many times but GP had no idea what was going on, when my poor son started to loose weight the GP thought my son might have gastric ulcers as we have a stronge family history of ulcers, so son was put on omeprazole first on a standed dose that helped a little so he was put on a high dose which eased the pain etc. Meanwhile I had to take my son to see a private urologist to sort out the weeing side of things, the bladder problems were put down to his EDS and over active bladder syndrome. At some point during all this some tests pointed to my son having high plasma sodium, this lead to him being sent for a water deprevention test, which was not quite normal but not exactly right for DI. Now my son has seen a paed. with an intreast in GI issuse, it is this Dr. that thinks my son most likely has EE, all my children have a history of food intolrance, none of them have ever tolarated milk, they have been on Gaviscon for years due to acid reflux and associated problems. To add to this the poor child also has problems with allegic or acid related nasal obstruction, which is causing breathing problems at night. Mentioning this to his GI Paed. seemed to make the GI Dr. more sure sons problems are EE related. Hence me wandering about a Mast cell connection. Another thing that makes me wander is that when my son stops his nasal steriods his gut issues start to be problamatic! also my daughter had a bad bee sting reaction and was given steriods as medication she told us how awake she had felt, the first time in years! after having a RAST test for bee and wasp stings we found that my daughter has no allagy to these stings, so not sure about this odd reaction she had. Hope that gives you an idea of what is going on with us. Anna

Hello again, Does any one know if allergic Eosinophilic Esophagitis has any thing to do with mast cell disorders?!! My sons Paediatrician thinks my son has this condition as his GI symptoms fit the profile for EE exactily. The thing is I wandered if EE might be some thing like Mast cell disorderds, as Eosinophilic cells cause inflamation as a response to an alergin! anna

Hello Firewatcher, My son has been tested for DI as he was peeing 4+ times an hour at his worsed. His results his paed. has put down on his notes 'on the upper limit of normal'!!!. A urologist has put him on meds for over active bladder, which have helped lots, but he still drinks a fair amount and pees high volumes, he is being observed at the moment to make sure his bladder does not start to hold too much on 500 to 600 mls at the moment he is only 13 and quit a small frame! He has EDS and has very strechy skin external and internal it seems. He did not have much problem with night time peeing just when upright an odd one I think! My son has some other stuff going on with duadenal ulcers so paed. is not sure if he might have some endocrine things going on! Anna

Hello all, This one is mainly for the other UK guys out there, have any of you ever been to see Dr. Deering in Cheltenham? We really have to see some one with some idea about POTS etc as soon as possible, as one of my poor sons is having more problems with his low BP and stuff. He also his high blood sodium levels we have had to put him on a very low salt diet, thus without any other intervention he is having big problems with BP and HR issues. Anna

Hi Maxine, Thanks for your input, the odd thing is that for many many years this poor lady suffered constipation due to her EDS, she had lots and lots of meds for this, (I wander if that might be the root of the problem!) then suddenly no more bowel function period, food just passed through to fast to be absorbed. One Dr. wants to move the bag from top end of bowel to a lower end in hope of some slowing down of transit! All a bit odd I really do not think they have thought this out at all well. Thanks again Maxine. Anna

HI all, I thought I would see if you guys might be able to shed some light on this matter! A friend of mines mother had to have a colostomy about 3 years ago due to her gut deciding not to function any longer! This lady has EDS, Addisons and we believe Autonomic dysfunction (but this has never been looked into) suffered many years with GI mobility problems. About a week or so ago she was rushed to hopital with sever dehydration, she had 20 bags of fluid! to get her back to the land of living! Anyway her problem is that anything she consumes is going through her at the speed of light and not being absorbed, leading to this dehydration and malnutrition, now the Dr.'s here are at a lose what to do one wants to move the bag but due to her EDS they are worried! and so on. I was just wondering if any of you guys have come across such problems and how was it delt with, I heard mention before of a gut pacemaker or some such thing was I just dreaming or is there such a device! Any ideas I would be very greteful, thank you. Anna

My son and daughter take tablets called Slow Sodium Tablets, they are coated slow release you cannot taste them and they are more kind to your tummy. Not sure if you can get them in the US, ours are on prescription. Anna

Well I would like to send you a huge hug from over the water, and wish you the strength to fight all this C*** you are having to deal with at the moment. Please take care, Anna

I was put on nitro for angina type pain and sever Raynards symptoms, but could not take them due to extrem head pains, I was told headaches in my case were due to some intercranel pressure or some such thing, anyway now I take two forms of calcium channel blockers. Which have reduced angina type pain, bp still all over the place but no more heart pains, or horrid head pains, ah bliss. Oh yes I could not take BB's either so calcium channel blockers last resort! Anna

Hello Maxine, Just read your post and wondered if you have ever been pointed in the direction of Dr. Bolognese at the Chiari institute, he has a very good knowlage of EDS and Chiari and other brain and spine conditions. (He's a neurosurgen by he way). Sorry you have had to put up with such an arogent Dr. well done to you for having the strength to stand your ground. Anna

Flop, Thank you very much, that makes things much clearer to me. My son's paed. is a good Dr. but tends not to explain things just gives us the bare info. Sons paed. is a little concerned about the peeing thing as my lad has had some raised blood sodium levels at 147 and his base sodium is within normal range but a little on the higher end at 145 this is what has got the paed. thinking there might be some endo stuff going on to add to this he has had bouts of gut ulcers and other stuff going on. Thanks again flop. Anna

ok one of my boys had a water depravation test, his results were:- 8:30 urine Na 62 K 41.9 Creat 8.0 Osmo 468 9.30 Blood Na 143 K 4.8 Creat 49 Urea 3.5 Osmo 297 10:00 Urine Na 60 K 35.2 Creat 2.5 Osmo 273 11:00 Blood Na 143 K 4.6 Creat 53 Osmo 290 11:00 Urine Na 74 K 48.4 Creat 3.0 Osmo 320 12:00 Urine Na 112 K 71.8 Creat 6.1 Osmo 504 13:00 Blood Na 145 K 4.4 Creat 49 Osmo 292 13:00 Urine Na 167 K 72.2 Creat 8.6 Osmo 610 14: 00 Urine Na - K- Creat- Osmo 703 15:00 Blood Na 144 K 4.5 Creat 48 Osmo 287 15:00 Urine Na 224 K 67.7 Creat 10.4 Osmo 706 16:00 Blood Na 144 K 4.6 Creat 48 Osmo 290 16:00 Urine Na 236 K 64.2 Creat 8.6 Osmo 705 Does any one have any ideas what this means we have been told son does not have DI as he was able to consintrate his urine. Anna

Oh yes please someone point me in the direction of some good medical data on this. I and my 3 children have fluid retention problems but we all seem to have diffrent problems!! I have high BP to low but also very big HR jump on standing I pee lots even if I do not drink anything. My daughter has normal to low BP with high HR on standing etc. pee's like me. Then one son Normal to very low BP and high HR on standing drinks little pee's at 'normal' times but pee's loads when he goes, (he is Autistic and has problems with knowing when he is thirsty or needs to go to pee). Then other son has the low BP high HR etc, had very bad problems a while back with peeing about 5 times an hour all day long (ok when laying done at night though!) but also has had some very high blood sodium readings, he has been checked for DI after 7 hours he managed to consuntrat his pee enough to stop test! now waiting to see endo. as paed. not sure what is going on. I am at the moment salt loading for my D. and one of my boys as told to by there cardiologist and cutting salt right out for my other lad as told to by his paed. it is quite odd and I want to get to the bottom of all this. Anna