anna

Hi KKrylee, I have just read on an other site (the uk EDS site) about a girl who was having many of the problems your wrote about, the girls mum mentioned that after much investigations by all sorts of Dr's it seems she has a pheochomocytoma on a sympathetic nerve, it is this that was causing her daughters sever symptoms now she is on some meds that have worked very well for her. I am not by any means saying this is your daughters problem but may be you could ask the mum a few more Q.'s I am sure she would be more than happy to pass on her experiances. Anna

Hi, I would also take a look at the chiari institute web site, sorry I do not have this address to hand but sould be able to find via search engine. Anna

Hi Maxine, Do you know whether you have fluid pockets in your spinal channel, sorry I do not recall the correct name for it at the moment, it is something that is listed as a complecation of Marfan's syndrome but does also happen in EDSers, we believe my dad was one of them. I will go and try and find the name for this complecation, take care. Anna

Hi guys, Can I ask your advice on a matter please!? One of my kids has had problems with weeing way too much Dr. thought it might be Diabituse Incipidus, my son had a water deprevation test but Dr. said it was not conclusive, and Dr. is not happy with my sons blood sodium levels and sons inability to consintrat his urine as well as he should, hence he will send his results to an endocrinologist (sp?) for some advice, but in the mean time he wants my son to reduce his sodium intake, the problem we have is that my son also has POTS and has been adviced by other Dr. to up his salt intake to reduce low BP and HR increace. Anyway I have cut back on sons salt at the moment thus he is having a few more dizzy spells, but not doing too bad. The thing is how do I get my sons BP up if I need to keep his sodium down? Anna

Hi jump, Not sure I can help you, but if you go to diabetesinsipus.org you might get some proper information about DI, as I think your PCP was thinking of only one sort of DI there are other forms which involve the pitutitary gland or kidneys. Anna

Hi there, Sometimes my kids BP drops while they are lying down too, but they also go bradycardic, and tachy. I know this may sound really odd, but we found that if we get my kids to, well lay so their legs and bottom are raised well above their heart, basiclly like on an invertion table (I think thats whats it's called!) we can mostly get their BP and HR to a more 'normal' range. My kids specialist nurse told us that it was odd that we did this as this is one of the moves that parents of kids with a conductive heart disorder are shown how to do as it sort of reboots the pace maker cells. I am not saying you should try standing on your head or anything like that. It is just something that works for my kids, some of the time. Hope you get sorted out soon, take care. Anna

Hi Lois, he's lost around 14 lb's but he has had gastric ulcers as well so I think that has caused the weight lose.

Hi Lois, I wandered if their were other test for DI, at the moment my sons blood plasma show signs of DI, hence the water deprivation test, but I would like to know what other test are done for this. My son has since being a baby had bladder issues but over the last few months he has been going to the toilet 4 to 5 times an hour after filling in a chart for 3 days it was noticed that he seems to be putting more out than he takes in! to add to this just got call from DR. to say they found protein in sample so sending it off to lab.

One of my children has been quite poorly over the last 2 months, gastric ulcers, weight loss, problems with frequent urination, it has played havoc with his BP and HR. Anyway he has to go into hospital for a water deprivation test as Dr's think he may have Diabetes Insipidus. Do any of you have this condition if so how do you sort out your fluid levels with this condition?? Anna

Hi Becca, I just today put in an application for bus passes for my three kids in our area the councl explain that you can have a letter for consultent or GP. to explain that you are unfit to drive due to medical resons for example uncontroled fainting etc. you might find that is ok in your area as well. Anna

Oh yes I get this my Dr. too has told me this is due to Migraines, I am not realy sure this is entialy the case though as when I strech my neck up I also get this eye problem. So I wander if there could be some C spine instability too. Anna

Hello all, Two of my children have been put on salt tabs and have increased fluid to try and help with their POTS symptoms, which it has a little. The thing is, I got to thinking, if blood volume is incresed, that should increase blood presure on all the blood vescules that are causing the problem in the first place but as my children and myself have EDS and weak blood vesculs walls surly in time with incresed blood volume, the vasculature will just strech to accomidate the increase in bp, thus needing more blood volume!!! Just wandering if it works like that. Anna

Her in the Uk my daughter was diagnosed by a reuhmatoligest (SP?) then as a family we were sent to a genetisist, whom diagnosed us. The Dr's use a system called the Beighton critiria to judge weather you fit into the EDS group then the Dr/ genetisist, will categrise you into sub groups For example Classical EDS, Hypermobile EDS Vascular EDS and so on. Flexibility is a major factor but not the only one used, there are no specific genetic markers at present for any EDS sub groups except Vascular EDS, I think! But their are some new conditions poping up that are also linked to collegen mutations. You might want to look up a Dr. Jamie Bravo his web site has lots of info on it. Anna

Hi Maxine, I am not sure if this is of any relavance, but one of my sons had to have some teeth out 2 last week and one this. The injections he had last week triggered off an arthimia (sp sorry!) so I thought it might be to do with the Ephadrine (sp), spoke to dentist this week and he changed the the local to another type that contains another vaso constrictor and no ephodrine, son had no heart problems with that one but the local did not work for long at all dentist said he had never seen anything ware off so quick! So might you be able to find another local to use. Anna

Another question for those of you with EDS. Have you ever heard of diverticuli in doudeum/small bowel just below stomach? I talked with my EDS doc's office and spoke with genetic counselor on Tuesday about digestive manifestations of EDS. She said this does happen in some EDS patients. We talked about my non existant hydroxy prolene levels -0- ---(this is an important protein in collagen), and asked if this could mean I have more vascular involvement then first thought? Hi Maxine, You can get diverticuli anywhere along your digestive tract it just tends to be more common in the colon in 'normal ' people, us EDSers can have problems else where. Mine are all over the place! Take care Maxine Anna

Dizzygirl, Sorry you had this happen, but I am so glad you posted this thread. Much the same thing happened to one of my boys the other day, now he is so sceared to watch anything funny as he thinks it will happen again, well another thing to look out for! Anna

Thank you Doctorguest I think you are right, paed. mentioned something about a patch son could wear! but then said might be a problem with sons eyes. anyway thanks again. Anna

Hi, One of my boys seems to produce too much saliver he drools a lot, he is 12 nearly 13 and finds this quite upseting, his paed. suggested a trial of some meds to reduce this but as poor son also has dry eyes paed. thought it better not to try these meds. I was just wondering if any of you have this problem, oh yes son also sweats lots hands and feet always wet. Anna

How often do you need to have your electrolyits checked? Daughter put on slow release salt tablets about two months ago, prascribing cardiolagist in letter to GP suggested it would be wise to check electroliyts. GP has not mentioned anything about tests. Should she have a test.? Anna

Hello Becca, Sorry you have had to put up with so many negative Dr.'s, it is sooo hard to find a carering Dr. but I hope you find one soon. Did Prof. Mathias write in his report that he thought you were attention seeking or did this 'therapist' hint to it!? I think that Therapists can do so much harm if they are unaware of real medical problems, mental health is very much linked to physical health I am a firm believer in a holistic aproach to our treatment. One of my kids has Asperger's aswell as EDS, POTS and a movement disorder, as a mum I had been labeled for a long time by school and many others as an over protective over reactive attention seeking mother, some times I thought may be I was all that, but in a way this made me more focused on finding out what was wrong with my kids. Well it has taken years but now I have got to the point of diagnosis and I will continue to push all I have to to get the support in place for my kids. On my jurney I have found a really lovely OT that has taken on board all my sons problems seeing them as part of his whole body well being. I wonder if your GP could refer you to an OT ( Occupational Therapist) in view of getting you some support in place at home. About the passing out ITS NOT IN YOUR HEAD What rubbish is that!! again here an OT could be of help to get support in place for while you are out and about. Please try and find the strenth to get above these silly silly people that are lucky enougth not to have to have to put up with what you do 24/7 you are soo much better than them, look at what it takes to get out of bed in the morning do you think these people could do that each day with a smile on their face. Can you just picture your therapist with a huge smile on her face as she tries to get out of bed to go to the loo if she a bad bout of flu!! Now down to what you can do for your own well being! and this is so so important. I have tried to instill into my kids minds that it is so important that they find things that they like to do and that they do it! Luckily my kids have found they all love drama acting and all that, they go to lessons out of school, they do shows and help in bit parts when touring companys need kids. We are lucky the kids all like the same thing! I wish you the energy to find a passion that helps you deal with your health situation. Take care Becca, Anna

HI all, I have always ment to ask you guys about this, 2 of my kids do not sweat to the point that their skin goes bright red and very hot if they excert themselves, but my other son is always wet his hands are never dry, he sweats in bed and he has a big problem with drooling which has lead to speach problems but he gets bouts of what we have been told is dry eye. I have often wonderd why my kids that all have ANS dysfunction present with such extremes of temp control. Anna

Hi Julia, Thanks for your post I will bare this in mind. The funny thing is that I started the kids on their slow release salt tabs and they seem to feel somewhat better already! so I think I will see how they do on this for a while. Thanks again, anna

Hi Rachel, You might want to look up Urticarial Vasculitis, we had a post on another board I use that sounded very similar to what you discribe. Hope you get it sorted soon. Take care anna