anna

I found this: The Journal of Allergy and Clinical Immunology Volume 128, Issue 1 , Pages 3-20.e6, July 2011 //www.jacionline.org/article/S0091-6749(11)00373-3/fulltext I think there is a lot to read but might be of use!!

I recall reading something about some other folk just like you on a EOS support group I will try and find the link if that might be of any help. It is so wrong that the Dr.'s shrug off stuff just because it is not in their field of knowledge, surly it would have been wise for your Dr. to have checked out the high eosinophilic count!!!

Has any one ever mentioned: Symptoms of Eosinophilic Esophagitis include: Reflux that doesn’t respond to acid reducing medication (i.e. Proton Pump Inhibitors, such as Prevacid, Prilosec and Protonix) Nausea Vomiting Dysphagia (difficulty swallowing) Food impactions (food gets stuck in the throat) Abdominal or chest pain Failure to thrive (poor growth or weight loss) Malnutrition Poor appetite Early satiety (feeling full sooner than you should) Difficulty sleeping In addition to the above, many people also experience pain in their lower limbs (legs, ankles & feet) which is not uncommon with GI disorders in general, and fevers (likely caused by internal inflammation). Some have also experienced ear infections, asthma, croup, migraines, and more frequent “colds” when they are reacting to a food. Behavioral changes have also been reported in some children (*). Associated conditions can include eczema, rhinitis, regular food allergies (causing the more common immediate reactions), asthma / reactive airway problems, failure to thrive and developmental delays This condition may be something to look into!!

Ok what do you guys think about this ladies theory on EDSers with POTS.?!

Yep I get Aura with and without headache, I had them since being a small child had no idea what they were then! I tend to have many aura's without the headache, but my aura's are not just visual, I get tinnitis, numbness, memory problems as well. I found this article quite explanatory: What Is a Migraine With Aura, and What Causes It? "Migraine with aura" is a relatively new name for the less common type of migraine headache. Other names you might hear are classic migraine or migraineur. Aura refers to feelings and symptoms you notice shortly before the headache begins. These early symptoms are also called a prodrome. Scientists aren't sure what causes migraines with aura. It's thought that at least two brain chemicals -- serotonin and dopamine -- play a role. According to the theory, something goes awry in the way these chemicals regulate brain function. This may cause the brain and the body's immune system to overreact. When this happens, a flood of immune response cells flows through the blood vessels to the brain. The brain's blood vessels open wider to accommodate these cells. Even more chemicals are released to help control the vessels' muscles. The vessels open and constrict. A severe, often throbbing headache results. Factors suspected of causing migraines with aura include genetics and being overweight. Substances, behaviors, and environment may trigger migraines, as well. It is known that migraines often run in families.They frequently begin in childhood and worsen through adolescence. Although more boys than girls have migraines, more adult women than adult men have migraines. Over time, the number of migraines lessen, and they become rare after age 50. Whatever the cause, the good news is that -- although painful -- migraines with aura are not life threatening. What Are the Symptoms of a Migraine With Aura? Migraines with aura account for less than 20% of all migraines. But that's little comfort when you are the one who falls victim to this painful headache. Headache is considered the symptom common to all types of migraines -- although a few children experience an aura without a headache. Migraine pain usually occurs in the front of the head on one or both sides of the temples. It may throb or be steady. The headache may last from four to 72 hours. Other symptoms of migraine may include any of these: nausea vomiting yawning irritability low blood pressure feeling "hyper" sensitivity to light, sounds, or motion dark colors under the eyes A migraine with aura comes with additional symptoms, which often begin about 30 minutes or less before the headache. These early symptoms are called a prodrome.The prodrome or aura may last for five to 20 minutes, or it may continue even after the headache subsides. Symptoms of aura include: blind spots or scotomas blindness in half of your visual field in one or both eyes (hemianopsia) seeing zigzag patterns (fortification) seeing flashing lights (scintilla) feeling prickling skin (paresthesia) weakness seeing things that aren't really there (hallucinations)

Your example is exactly what makes me wander if my children and myself actually reap the full benefit of any of the medications we are given. My doctor was always pulling his hair out wandering why my BP would not go down regardless to the amount of meds I was/am on, he even implied that I must not be taking them on purpose!!! as my BP would not go down. This has me thinking about how targeted meds actually work! off to look it up I think!

Hello all, Can anyone tell me tell me if gastroparesis, has an effect on how slow release medication works?!

Hello Lieze, Have you ever looked into Glycogen storage disorders?!! This is something we are looking into as my 3 children can not tolerate milk in any form and have not been able to since birth, this is a link to some info:-www.merckmanuals.com/home/sec23/ch282/ch282b.html I do not think my children have a sever form but I do question whether they might have some form of GALT! My children vomit and produce vile green stuff from the other end!! But they also do not tolerate many of the foods that should be avoided or eaten in small amounts in GALT. Anna

[sounds like YOU may be able to teach them a thing or two. Just saying... Julie Ha ha Julie I may well be able to!! I think I will be busy with this idea for a while!! I would like to look into MCAD but this is not a condition the UK Dr.'s seem to be that aware of, am that sounds all too familiar! Naomi Yes it does seem odd that we are seeing more and more children with POTS and alike, it is so sad. Sallysbooms, I am coming across more and more people with a diagnosis of CFS or ME.

I see a pattern in my family of so many odd symptoms that must be interlinked!! but I am not able to take this idea beyond just an idea point as my knowledge and understanding of genetics and well every thing is limited!! It would be really good if anyone with an understanding of genetics could bounce my idea about friends etc. to see if any one is willing to look into it more. S-pot, My family have lots of Autoimmune problems, we also have odd rare cancers, which is a big concern!! I will keep looking for leads on this one. Mack's mum, My GP clinic is not very receptive of my ideas they think I am a mad attention seeking mother! ha ha oh well their loss, so we have not had a chance to see anyone regarding our immune system, the only thing that I have noticed is that me and my kids are consistently on very low end of normal total white blood count, Plasma viscosity and Erythrocyte sedimentation rate is also on the very low end of range. my daughter also has a very low IgE but shows hugh symptoms of allergies. Anna

Hello all, I posted this on another thread, but I thought I would like to start a thread to see if any of you have a low immune system or are diagnosed with a Primary immune disorder. MY other post:- Ok for a while now I have been looking at PRIMARY IMMUNODEFICIENCIES as a possible answer to my families POTS. We have a diagnosis of Classical EDS and I am sure this goes back a long way in my family, but I do not feel CEDS really explains the Pots symptoms, I am sure something else is linked here. Any way does anyone have any info linking POTS wit PID or CVID. I know this might be a really stupid theory, but I think some forms of EDS have a fault on the same coding sequence as some forms of PID, this might explain why many HEDS/JHS patients have POTS and MCAD type conditions as well. It seems people with PID or CVID have a 20% chance of having autoimmune disorders! Does anyone see a pattern forming. Can any one out there that has a good understanding of genetics see any possibility that my mad idea might have some scientific credence!!!! Anyone have any ideas about this?!! Anna

Ok for a while now I have been looking at PRIMARY IMMUNODEFICIENCIES as a possible answer to my families POTS. We have a diagnosis of Classical EDS and I am sure this goes back a long way in my family, but I do not feel CEDS really explains the Pots symptoms, I am sure something else is linked here. Any way does anyone have any info linking POTS wit PID or CVID. I know this might be a really stupid theory, but I think some forms of EDS have a fault on the same coding sequence as some forms of PID, this might explain why many HEDS/JHS patients have POTS and MCAD type conditions as well. It seems people with PID or CVID have a 20% chance of having autoimmune disorders! Does anyone see a pattern forming. Can any one out there that has a good understanding of genetics see any possibility that my mad idea might have some scientific credence!!!!

Hello Sue, You may want to contact this Dr.one of my sons has been under his care: Professor Qasim Aziz Professor Aziz completed his early medical training and also obtained his PhD in Manchester and subsequently held the posts of lecturer, senior lecturer and professor of gastroenterology at the University of Manchester between 1994 and 2006. He moved to Barts and The London in December 2006 where he is Professor of Neurogastroenterology and director of the Wingate Institute of Neurogastroenterology. Professor Aziz has pioneered the use of neurophysiological techniques to study human brain gut interactions in health and disease. His PhD work contributed to the identification of the brain representation of human swallowing muscles and also he also undertaken seminal work which has helped to identify the human brain centres involved in processing gastrointestinal pain. He was awarded the Sir Francis Avery Jones Research Gold Medal by the British Society of Gastroenterology in 1998 and the Janssen Award for Basic and Clinical Research by the American Gastroenterology Association in 2000. He has served as the chairman of the Neurogastroenterology section of the British Society of Gastroenterology and is currently a member of the executive committee of the European Society of Neurogastroenterology and Motility and helps to promote education in Neurogastroenterology across Europe through his role as a member of the education committee of the United European Gastroenterology Federation. He is also a member of the ROME III Committee which publishes the criteria for the diagnosis of functional gastrointestinal disorders and has co-authored the British Society of Gastroenterology guidelines for the management of Irritable Bowel Syndrome. He has published his research extensively in peer reviewed journals.

Hi Sarah4, From what is discussed on the UK EDS site innocence seems to be contributed to issues like spinal compression, nerve impingement, over stretchy bladder or bowel. It seems to have many causes all of which should really be checked out by a doctor that will take on board the EDS diagnosis, ha I know not an easy one! From what I have read on the net it is thought that the urgency type feeling EDSers get is to do with having over stretched bladders or bowels this leads to the nerve receptors not being triggered when they should be! I have to remind one of my sons (16years) to go to the toilet as his bladder will hold over a litre of wee the normal healthy maximum, we have been told by the continence nurse, is 500ml! This over stretching of the bladder can in turn lead to a number of problems one being incontinence.

Sadly it is articles like this one of Dr. Levine that confuse other doctors, we have enough problems with Dr.'s thinking this condition is all in our heads, now to 'sell' his exercise protocol Dr. Levine has pumped up his hypothesis with what seems quite carefully chosen subjects, which to be honest is something many pharmaceutical companies do to interest financial backing. From what I have read here this Dr. does seem to be able to hype his views up quite a bit, in the grand scheme of things his study is very small, but it does seem to get noticed may be he has a good PR team! I noted in the news article that one subject stats that Dr. Levine's 'salt loading' and exercise program has helped her get her life back, so was it the salt or the exercise?! One of Dr. Levine's Grinch Syndrome patients, Elisabeth Rybak, 47 years old, of New Brunswick, Canada, said at first she had to "crawl onto the rowing machine," and "you're ruined" after the tough workouts. She now credits them, plus a salt-heavy diet Dr. Levine prescribed, with a near complete recovery.

Hello Victoria, Do you by chance also have a diagnosis of Ehlers danlos syndrome?! As incontinence does seem be an issue for many EDSers!

Hello Julie, Thank you for that I have passed this on to the lady on our EDS board.

In the NYC/NJ area?! Hello all do any of you know of a good Ehlers Danlos doctor in this area. A lady on an other site really wants to find a doc re. possible vascular EDS, the other site is a UK based, I have seen mentioned a number of EDS doctors here but I am not sure where they are based. Thank you. Anna

What is your peak flow like when you feel bad?!! My daughter has just had a bad bout of breathing difficulties, her GP was not happy with my daughters low pulse O2 levels and low peak flow, so gave her an Sulbutamal inhaler to use when needed. The GP did tell my daughter she did not think the low peak flow etc. is due to Asthma but feels that it is more likely bronchial spasms linked to either my daughter ANS stuff or her EDS!! My daughter also has loads of eptopic beats that seem to cause her problems.

Really good to see that you have got away from the DD diagnosis. I have wandered about the salt issues as well my children are on a high salt diet, which is a concern!!

Hi Julie, My daughter is 19,she is at the moment diagnosed with POTS/Autonomic dysfunction and Classical EDS. Daughter has had CF type symptoms well over ten years now, the T wave inversion has only shown up on this last ECG, but the eptopic's and RBBB have shown up on many tests!!! I will give the link a read in a moment thanks Julie.

I need to pick your brains again folks! My daughter had a cardiac work up a few weeks back, she got a clinic letter for the 12 lead ECG it notes that she has a Right Bundle Branch block, some ventricular Eptopic beats and the bit I am a little confused about a T wave inversion, can anyone shed some light on the T wave inversion bit this is a new finding on my daughters ECG!!

Hello Linda, So glad you have a lovely new grandchild to fuse over, my mum keeps telling me grandchildren are more fun that looking after your own!!!!!! Sorry to see that you are not doing too well, can I ask if you have ever looked into:- Symptoms of Eosinophilia Symptoms of eosinophilia vary based on the underlying conditions. For example, frequent wheezing and breathlessness are symptoms typical to eosinophilia caused due to asthma. In case of eosinophilia due to parasitic infections symptoms may range between abdominal pain, diarrhoea, fever, cough and rashes. Frequent infections, abscesses, pneumonia, mouth sores can also be considered as indicators of eosinophilia. Few other symptoms of eosinophilia include weight loss, night sweats, enlargement of lymph nodes, skin rashes, tingling and numbness due to nerve damage, etc. These symptoms however occur rarely. Has anyone ever checked you for this condition? I recall that their used to be a forum for folk with this condition, with a number of members that had to be tube feed as they could nolonger eat anything without reacting to it!!

Hello Bren, So sorry your daughter is having to deal with all this stuff, not easy to deal with as adults it is horrid for our children. Can I ask if you also have a diagnosis of any connective tissue disorders?! I was just about to post about Swine Flu and complications!! I do wander in your daughters case whether this virus could have triggered POTS, I guess that would be more likely if you have POTS due to some underline hereditary condition, that your daughter might also have. From your description of ongoing events it would really look like something medical was going on with your poor daughter as aposed to just emotional stuff. My daughter was diagnosed with POTS about 5 years ago at 13ish, the thing I am concerned about at the moment is that she has been unwell with Flu symptoms for over 6 weeks now on her 3rd lot of antibiotics for throat and chest infection! I am wondering how many folks with POTS find they do not fight off infections so well. If this is the case then could it be possible that your daughter might have had POTS mildly prior to the flu which made things escalate, does that make sense!!? I hope someone else can offer some advice, take care.

Hi Julie, Me again! I found this and thought it might be of interest!:- "Genetic factors Research into the genetic factors that are related to Hughes syndrome is still at an early stage, but it seems that the genes that you inherit from your parents may play a role in the development of the abnormal antiphospholipid antibodies. While Hughes syndrome is not passed down directly from parents to children in the same way that other conditions are, such as haemophilia and sickle cell anaemia, having a family member with antiphospholipid antibodies increases the chances that your immune system will also produce them. A study that was carried out in 2008 found that almost half of people with Hughes syndrome had a similar mutated gene, known as the STAT4 gene. The STAT4 gene is also thought to play a role in other autoimmune conditions, such as lupus (which causes symptoms of fatigue, skin rashes and joint pain) and rheumatoid arthritis (which causes joint pain and stiffness). This may explain why some people develop Hughes syndrome alongside another autoimmune condition." I have been thinking about this condition for some time now,as our family have some odd things going on that can not be explained by POTS alone. Re pulse O2 just checked my daughters it was 93% she had been at the computer doing same Uni homework it seems that all my family get low O2 levels when we have been still too long. We also get low O2 levels when we exercise beyond our comfort level, oh joy!!