anna

How many times a day did/do you have to take the tabs for, (son has loads of GI issues) my son has just been put on these to try and reduce his morning vomiting and diarrhea, lovely locum Dr. explained to my son that given all his ANS stuff she would like to treat him as she would some of her diabetic patients that present with this problem. Wow, she told my son not to worry if this did not work as their are other meds out there that might well help him. It is such a pity that this GP is only a locum, she put my poor old son at ease. Anna

Hi Janey, Can I ask whether you got to see Prof QA on the NHS or did you have to go private?! one of my boys is still having lots of bother with his guts and we have had no joy with local GI paed.'s. Anna

My son's BP tends to be quit low in the morning, I will get a reading over the next few mornings that might mean something to his GP that he will see on Tuesday. Thanks for the info. Anna

Oh that was so unprofessional, and clearly shows this person has quite strong views on being a tough cookie! The evaluation of your daughter as being 'over- sensitive' by crying a lot is not a proper observation. Not sure if it is the same in the US as it is in the UK but all pre school leaders have to link all observations to 'area's of learning' and give positive action plans in areas that a child is struggling in. If you had a kid in a pre school here it would be the teacher's/leaders duty to listen to how a parent is doing as this is a clear link to a child's behavioral and emotional needs!! Core that would be funny this supervisor being obliged to sit and take notes on your situation, not sure she could coup with this in reality!! Please please write to the supervisor, briefly out line your condition and explain how in fact your daughter is a tough little cookie as she still comes into pre-school, even with all that is going on at home. Then I suggest you ask the supervisor what action plan she has in place to help you daughter over come her 'over-sensitivity'!! The fact that the supervisor has bought this up leaves her open to having to talk with you to find ways to help your daughter over come this! Ha ha this supervisor will have to ask you how you are each day and she will have to listen and take it on board!!! Anna

Thank you Sue I will look into this and see if I can get Dr.'s to do Cortisol level check. Anna

Lately most mornings my son gets up he can not tolerate any food barely able to drink and take his meds, without being sick and or having diarrhea, do any of you have this or have any idea what might be going on. My lad is on Omeprazole for chronic acid reflux and epigastric pain. Anna

Hello all, Thank you for your input, I will make sure she is well hydrated etc. Anna

Hi guys, My daughter is due to have an MRI of her jaw to look for Arthritis, just found out it is to be done using a contrast dye called Gadolinium any of you guys had problems with this stuff we are a little concerned now. Anna

Hi I'm from UK too, I have an ANS dysfunction of some sort, not diagnosed! But my 3 kids have a diagnosis of POTS. I have a host of neurological symptoms, and have been tested for Lyme disease, a friends of Mine's son was diagnosed with Lyme's 2 years ago never been out of the UK, so it is here may be only in hot spots but many folk that I know have been tested for it so might want to get it checked just in case! There are some Dr.'s out there in the UK that are beginning to understand ANS dysfunction stuff, hope your cardiologist is one of them! Anna

Hello thankfull, Sorry you are where you are at the moment I hope you find a way to feel better soon. Re; getting pregnant you might take hope from the situation a very good friend of mine was in some years back! My friends very much wanted to have a child, they tried to no avail for a couple of years, then realised they needed some form of intervention. They consulted with the UK's (world famous) fertility expert, had many tests all to be told that he would not be able to help them as it was very unlikely they would ever get pregnant and he could not ruin his excellent track record!!!! Well poor friends were very upset but decided to try IVF any way, they had a number of tries but they did not manage to conceive, Mary's body just kept rejecting the embryos a very sad situation. After much heart ache they decided to just get on with life, Mary had suffered chronic pain and fatigue since being a teenager this was put down to many things from ME to Fibro, but she mustered up enough energy to go back to work part time. Then a little less than a year went by and Mary became pregnant she gave Birth on Christmas day to a beautiful little baby girl. We all thought it must have been a real little miracle. I wish you well, take care. Anna

Hi Maxine, Do you have Eustation(sp?) tube dysfunction or bad acid reflux, we were told both of these could have caused my sons unusual form of 'glue ear'. If your Eustasion(sp?) collapses it will not allow fluid to drain away, with EDS it seems that this tube can be a little delicate, when permanent shunts are put in the fluid can once again flow properly. Bad acid reflux causes the drainage system to swell thus fluid can be retained when it should flow away. Another thing that might be of relevance, my sons geneticists believes my son's chronic postural headaches are more than likely to do with spinal fluid leaks/pockets, due to his EDS if you look up spinal fluid leaks I am sure there is something about it leaking into sinus cavity and ears etc, Hope you find some answers soon

Do they add anything else into the cortisone, some form of ephdrine to reduce risk of bleeding, if so might that cause a problem with some people?! Just a thought.

My children find sports compression gear helpful, daughter wears leggings a lot (she should wear them all the time but fashion prevails) you have to shop around as some have little compression but others are great very well engineered. My boys wear compression, socks & T shirts, T hold their tummy's in very well. These garments are better for getting into as well, my kids had tights proscribed but we all dislocated our fingers and wrist trying to put the things on, but not so much problem with the stuff they have now. Anna

Maxine, so glad test showed good news. Tammy, That is just what I was going to bring up. My GP can clearly hear a grade 2 murmur on examination when I have my legs down, over bed edge or when I am standing but the cardiologist I was referred to could not hear a thing!! and echo was A OK, but I thought after the Cardio. Dr. did all his tests, I was flat on the bed or had my legs up on the bed. I think this is a big point and one that should be taken into account, probably only a concern for people with poor vascular tone, if you have EDS or other conditions that effect vascular tone, like myself and my kids. I recall on an EDS forum one lady pointing out how her sons Cardiologist showed her clearly how her sons blood flow changed dramatically from spine to standing. The echo was fine spine no valve problems no regurgitation etc, but on standing she could see a big difference! The cardio did an echo normally then one with the lad standing. Does anyone have any ideas of studies done that have picked this up?! Anna

Daisy, Do you by chance have EDS as well?! A while back my then 13 year old son started to have very bad epigastric pain on eating fatty foods, that pain progressed to continual pain when eating, then after eating, he lost 14 pounds and could not walk anywhere unaided, Dr's had no clue what was going on, they though he was putting it all on! Finally he was put on very high dose Omeprazole, which helped reduce the pain, he is now on omeprazole to keep pain at bay, but still the Dr.'s are not sure why he has this problem. But it turns out that many EDS folk need to have their gallbladders removed at very young ages due to them just failing to work! Some research being done on EDS and microvascular dysfunction, seems to show that our organs may have some problems due small bleeds, blockages etc. of very small blood vesicle's. Anna

I wander if it would help if we all had an official card made to carry around to give to people, when they give us that look!. I have a son with High functioning Autism (as well as POTS & EDS), he looks a lovely looking 'normal' lad but when young he would quit often loose it while out and about, we would get all the looks and comments going. So luckily for us the UK national Autism support group had developed a credit card sized fact card that one could just hand to people when they gave you that 'look! We got some and to be honest they have been a god send, my mum found it so therapeutic just calmly handing out these cards when needed. Most people would just back off and go about there way, some would apologize for there short sightedness etc. So might some form of bullet point card be useful?! Anna

Hi Toni, My kids are on 2 tabs 3 x a day we can just about manage to remember that but 5 times a day would be quit a pain, they are slow release, but taking them with a longer gap in between might not be as effective as taking them 5 times a day. My kids really feel it when they have missed a dose. I think another of our UK members used to take slow sodium may be they will have some tips. My kids drink lots of water, but that tends to go straight through them so they drink lots of Gator aid too! Re checking out the EDS symptoms might be of use, if you pop over to the uk EDS support group you can find out if there is a good Dr. near you, that might be better than getting passed from pillar to post for a diagnosis etc. ta ta for now, Anna

Hello Serena, Does your son use a lap top (computer) for note taking and class work? my kids can not survive without there's it helps them organise their thoughts. Anna

Hello, So sorry for your loss, I would say yes defnitly an other pet, they have so many benafits for your health and well being. Have you ever thought of a sevice dog! I have no idea whether you like dogs, but you might find a service dog both helpfull and a great boost for your well being. we have just bought a standard poodle puppy for my son that has EDS, POTS and Autisum, we hope in time to teach both son and dog to help each other! Anna

Another thing to remember is that Munchausen's is a rare psychiatric disorder! Oh yes you can add me on to your list of 'attention seeking disorder' members! My children's paed. thinks that I must have something wrong with me, as all my children have such similar symptoms to each other!!!?? Re: families not understanding, maybe you could print off some of these posts, the ones that show how real we all are and how much stuff we are dealing with on a daily basis!

Oh yes information is power, All 3 of my children have mild to moderate OCDs, we have noticed that when they are more POTSie they tend to exhibit more OCD behaviour. But they are also more dippy as well!! After some time visiting an occupational therapist, trained in cognitive behaviour therapy, we found that there was an intertwining link with my more effected son's OCD and the discomfort he felt from the POTs, when he feels better he is less likely to have to do his OCD thing what ever it might be this month or that it does not intrude on his day!!! As Morgen has mentioned OCDs are not to be mixed up with Phobias, my kids do some very odd things in the name of this OCD, my son explained it more like an irrational fear that controls you, one that changes with you, you get over one thing only to have it replaced by an other!! After much time seeing the CBT we decided it was better to try and find a ritual that worked in with evry day life!!!! Ramakentesh, On the Q. of checking stuff I have found I need to write out check lists and tick them off for many things I do the most important one is a medicine chart, if I don't tick it off as I go I forget who has had what meds, I'm trying to get my kids to do the same thing because they are just as dippy as me!!! My daughter has just this week left her A3 sketch book some where between home and college its a big thing but she has no idea were she left it!! One of my boys came home other week minus one electric guitar, he had taken in that day, forgot he had even had a guitar lesson!! My walls are covered in list of things to do etc. if I put them in an organiser I lose the organiser.!!

Hi, Been there, the thing we did not find out till much much later was that my 3 children had EDS and ANS dysfunction too, 2 out of 3 would wake after about 3 hours sleep with what we now know was terrible acid reflux. Had we only known then what we know now, I think we would have all felt much better. Not saying your daughter has ANS stuff going on, just explaining our situation. Genral rule to help out with sleep issues is ask your self, have you noticed any pattern to your daughters sleep problems? Is it more of a problem when she has been playing right up to sleep time, does she watch TV before bed etc. Lots of things can trigger sleep problems in toddlers. Here in the UK we have sleep clinics for babies and toddlers, do you have access to anything like that where you are? They seem to be well used according to our old health visitor!! Some toddlers are screamers by nature, but if you can find some sort of pattern to this behavior you might be able to side step it! I know it it by no means easy as my son with Aspergers had night terrors up and till he was about 10 years old. Hope you find a way to help you and your daughter through this patch. Take care, anna

I have migraines, not sure what type, I get bilateral or sometimes unilateral visual aura, often go blind in one or both eyes for 10 min sometimes longer, I get numbness and pins and needles feeling in my face tongue goes numb arm and sometimes down to my feet go numb. I get bad tinnitus, hearing goes odd, more confusion than normal, I seem to get clusters of these in one day may be happens 4 to 5 times then with the last aura I will get a head ache, might happen for a week on the trot then none for a while. But lately I have been having loads!! Starting to think it might be my neck causing problems as I can recreate these odd symptoms if I put my head back too much!!! Anna

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? Myself and my 3 kids get fat red legs and elbows down. 2. Have you ever been diagnosed with EDS or suspect that you may have it? We all are diagnosed EDS3 3. Do you experience symptoms when lying down even after a night of sleep in your bed? We can be symptomatic while asleep! 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? Possibly me and one of my kids have huge BP swings mine mainly high, but other 2 kids are wired most of the time! 5. Have you ever been informed by a doctor that you have low blood volume? No but we all have big problems even after blood taken for tests. 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? We all have GI problems. 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? We all have cold hands and feet but 1 son also goes from cold to red hot if still for more than a couple of mins. 8. Did your POTS arrive suddenly? No always there one symptom or an other! 9. Is your skin pale? Mine is olive as is 1 of my kids but other 2 are white, even though my kids are all half chinese. 10. Please the top 6 worst symptoms that you experience with POTS: Dizziness, disorientation, exercise intolarance, fatigue, migrains, needing to pee all the time!!!

Hi, my twin 14 year old boys have dysautonmia, but not having to deal with male dys issues at the mo, there are more Dysautonmia guys over on the uk EDS site, they might like a chat if you have EDS as part of your diagnosis, it could be worth a try. Anna