anna

Have you tried eating only food that has been in a blender, like you would do for baby food?!! When my son has bad bouts of GI problems, he finds he feels less sick if he only has pureed food!

Also have a read of this:- Selective IgA Deficiency is one of the most common primary immunodeficiency diseases. Studies have indicated that as many as one in every five hundred people have Selective IgA Deficiency. Many of these individuals appear healthy, or have relatively mild illnesses and are generally not sick enough to be seen by a doctor and may never be discovered to have IgA deficiency. In contrast, there are individuals with Selective IgA Deficiency who have significant illnesses. Currently, it is not understood why some individuals with IgA deficiency have almost no illness while others are very sick. A second major problem in IgA deficiency is the occurrence of autoimmune diseases. These are found in about 25% to 33% of patients who seek medical help. In autoimmune diseases, individuals produce antibodies or T-lymphocytes which react with their own tissues with resulting inflammation and damage. Some of the more frequent autoimmune diseases associated with IgA deficiency are: Rheumatoid Arthritis, Systemic Lupus Erythematosis and Immune Thrombocytopenic Purpura (ITP). These autoimmune diseases may cause sore and swollen joints of the hands or knees, a rash on the face, anemia (a low red blood cell count) or thrombocytopenia (a low platelet count). Other kinds of autoimmune disease may affect the endocrine system and/or the gastrointestinal system. Does it seem plausible that their is a connection!!!

Oh sorry I had just posted a Wiki link but thought it confused things!! Here is that link, Geographic tongue, an inflammatory condition of the tongue affecting approximately 2% of the population,[1] is characterized by discolored regions of taste buds or sometimes even cracks in the tongue (which do not go all the way through). The condition is usually chronic, and frequently manifests after eating any of a range of exacerbating foods, or during times of stress, illness, or hormonal surges (particularly in women just before menstruating). It is also known as benign migratory glossitis, oral erythema migrans, glossitis areata exfoliativa, glossitis areata migrans, lingua geographica, stomatitis areata migrans, and transitory benign plaques of the tongue.

I would have to read up on this I just found the post on an EDS site and it made me think!

Oh my, Tarastomsgirl, your ER Dr.'s are horrid. I was just reading on an other site about: gastric parietal cell autoimmune antibodies something to do with B12 anemia that leads to pernicious anemia not showing up in normal normal blood tests, thus it can be missed!! Antibodies can form against the cells that produce intrinsic factor. The cells then die, leading to B12 deficiency and anaemia. Stomach cancer and ulcers can take up so much room in the stomach that there are too few cells left to produce intrinsic factor. Diseases of the small intestine, fish tapeworm and the after-effects of bowel surgery can all result in the surface of the small intestine being too small to absorb B12 and intrinsic factor effectively. What are the symptoms of this type of anaemia? If a person is otherwise healthy, it can take some time for the signs of anaemia to appear. The first symptoms will be tiredness and palpitations (awareness of heartbeat). Shortness of breath and dizziness (fainting) are also common. If the anaemia is severe, it can result in angina (chest pain), headache and leg pains (intermittent claudication). Red, sore tongue and mouth. Weight loss. Diarrhoea. Some people with vitamin B12 deficiency will experience symptoms in their nervous system first, such as: altered or reduced sense of touch less sensitivity to vibration (inability to feel the vibrations of a tuning fork) colour blindness tingling in the hands and feet muscle weakness difficulties with walking and coordination psychological symptoms, such as memory loss, confusion and depression.

I just stumbled across this article and thought some of you may find it interesting: http://www.gutpathogens.com/content/2/1/3

Have a look at: http://www.immunedisease.com/about-pi/types-of-pi/selective-iga-deficiency.html it might be of use, as your Dr.'s mentioned a yeast infection!

We will be seeing the Dr. interested in POTS tomorrow, with my other son and see what he has to say about my kids POTS diagnosis!!!

Hello Godsgal, Can I just ask if you have been allergic to milk since being a baby? I ask because my children have been milk/ dairy intolerant since birth and I am sure this is an other piece to my family health puzzle!!

Hi Missmarple, Their is an EP with an interest in POTS at the Bristol Royal Infirmary I do not recall his name at the mo but will look it up for you ok. My children's cardiolagist suggested he might be of help for my daughter as she is over18 and needed an adult care team!!!

All my 3 have Migraines and get a lot of the aura's without the actual head ache, your son might be getting that!!! But I would get these episodes checked by a Dr. just to put his and your mind at rest.

I will go buy a meter today, see what happens!!

I wander if it could be a bit of both going on with my children!! I am sure the whole blood sugar drops fit part of what is going on with my family, long long history of pancreatic problems on my side of the family!! I am not sure why my son was actually less symptomatic after fasting for 16 hours, I would have thought that his blood sugars have been very low by then!!! Does a normal glucose meter show up something like reactive hypoglycaemia?!

Thanks for the input Pulp, I just read your other post I hope you find a Dr. that can find out what is going on with you soon.

My son had a TTT yesterday and he did not have any notable increases in HR and in fact he seemed quite well!!! which to be honest has me very confused as he has been having a hard time over the last year! The only thing that he did different to usual was not eat for 16 hours! now does anyone here have any information or articles on eating triggering POTS!!!! Oh and another thing my son is a carb monster and always has been, since being a toddler he has liked his toast!

It just seems to get more and more confusing doe is not!!! I hope you find something show up in the sleep study!!!!

I think anyone that has these POTS type problems has it rough, especially as diagnosis is so difficult at times!!! Is your resting/baseline HR normally lower than the low 70's by any chance?! My sons tends to be in the low 50's!!

Hi I just posted similar post re: my son's TTT so confused I understand how you feel!!!

Hi all Just got back from My son's TTT, well he was spine for a few min to get his resting BP and HR then he was tilted for 40 min and he had NO constant tachycardia, it fluctuated low 70's to low 90's not sure what his spine HR was as I could not see screen! The only symptom my son had was a back ache from standing up too long (EDS related) and he felt a little hot, in fact son actually was more alert and responsive that normal too!!!! This is so odd as son has been getting really POTSie lately, he was not told to stop meds so has been on slow sodium for the last 3 or so years, and he drinks a lot. The only thing that he did different today was to not have food from 9pm the night before and his TTT was 12 noon, could that have helped my son feel a bit better?!!!!

Hi Julie, I was reading this: http://www.immunedisease.com/about-pi/types-of-pi/common-variable-immunodeficiency-cvid.html As my daughter has had infection after infection over the last year and now her GP surgery have said they have marked her medical notes (just incase she gets a stand in GP) to say she must have antibiotics when ever she shows signs of an ENT or chest infection to prevent massive infections!!! Poor daughter has also battled thrush for years before all the antibiotics. As a family myself and my 3 children have odd things going on with our immune system from low WBC counts, me with low T' cell counts odd liver function results and so on. So this got me thinking! well it's all a hypothesis of mine at the mo just from piecing together what is going on in my family! I feel that a genetic collagen defect is the root, I feel that there is either some form of collagen defect going on in the bone marrow that might be effecting the production of WBC, that maybe leading to some form of CVID, that in turn can lead to autoimmune problem, which could lead to POTS. Another thought is that there are multiple collagen defects going on that are very specific to certain blood vesicles, which lead to atrophy of very specific organs. For example blood vesicles in the adrenal cortex rupturing due to collagen defect, which in turn leads to scaring, then atrophy, then something like Addison's disease, which in turn leads to POTS symptoms. I don't know how it would all work in reality as I do not have an in depth knowledge of medicine, but I think because I do not know how things work in detail I am not afraid to have such thoughts, does that make sense!!! I am sure there is a link too many of us unlucky ones around it would mean we would need to re write the maths.

Just another thought as well, have you had sinus node problems checked out by your cardiologist?! A friend of my sisters was having issues with OI and had episodes of what looked like seizure activity followed by fainting, when she lay on her back. To cut long story short, she went to her NHS Dr.'s who sent her to consultants, that could not find anything wrong! normal EEG's heart ok! She kept having problems so she went private turned out she had some form of arrhythmia originating from her Sinus node that was triggered when she was on her back. She has had a pacemaker fitted that triggers in when this happens and she has been fine since. This happened when she was in her mid to late 30's. Also I found this: Both atrial and ventricular arrhythmias can produce transient neurologic symptoms by disrupting cerebral perfusion, but ventricular arrhythmias rarely result in seizures. In the absence of evidence of infarction, however, arrhythmia-induced convulsive syncope can be difficult to distinguish clinically from seizure. (http://professionals.epilepsy.com/page/cardiac_arrhythmias.html)

Oh sorry CVID is Common Variable Immune Deficiency.

I still have lots of thoughts about MCD/ POTS/ and EDS and whether the link is more to do with our immune systems, I really feel that there is a link but more that something else holds the key to this trio of conditions!! I found this fact to be very interesting: Although patients with CVID have a depressed antibody response and low levels of immunoglobulin in their blood (hypogammaglobulinemia), some of the antibodies that are produced by these patients may attack their own tissues (autoantibodies). These autoantibodies may attack and destroy blood cells (e.g. red cells, white cells or platelets). Although, most individuals with CVID present first with recurrent bacterial infections, in about 20% of cases the first manifestation of the immune defect is a finding of very low platelets in the blood, or perhaps severe anemia due to destruction of red cells. The autoantibodies may also cause arthritis or endocrine disorders, such as thyroid disease. How many of you guys have thyroid problems or some endocrine thing going on?

My children have POTS and have since birth; I guess I was the same, I recall black and white outs when I was 4/5 years old. I have not been in any medical profession but food for thought is: my husbands father had what was described by the in laws as a Parkinson's type illness that was not actually Parkinson's but called something else family from Hong Kong so medical names get lost in translation, I think he had PAF. My husband and most of his siblings have low BP's odd HR rhythms and many odd mild neurological stuff going on. The main thing that myself and my husband and his family have in common is that we all did/do job's that involve a lot of standing. Standing being on your feet a lot of the time is what most in the medical world have in common may be that is the clue here!!!!!

This may be of interest to folk here whom also have Ehlers Danlos syndrome: "It has been known that there is a hormonal influence on joint laxity. The female hormones affect the ligaments at the cellular level altering the production of collagen and the cells that support it [Magnusson, 2007; Hansen, 2008]. Females generally are more lax than men which in part is due to the shape and form of the female body, musculature and types of activities in addition to the hormonal influence. Some observe that their joints seem "looser" or more unstable just before their menstrual flow (periods) [Child, 1989; Friden, 2006]. Research looking into whether or not this monthly "looseness" makes the person more prone to injury at the same time has been contradictory. [Griffen, 2000] While both female hormones affect collagen, it is more likely that progesterone and its analogues (similar chemical hormones) increase ligamentous laxity. Medroxyprogesterone, the type of progesterone commonly found in DepoProvera, is a "true" progesterone and can increase joint hypermobility. Similar progesterone's made from testosterone (the male hormone), such as norethindrone or norgesterol, are thought to have less effect on ligaments. If one takes an oral contraceptive pill, choosing the combination with either norethindrone or norgesterol may have less influence on joint laxity." Resources: "Hormonal Aspects of Hypermobility," by Professor Howard Bird, from the Hypermobility Association, www.hypermobility.org --Dr. Brad Tinkle, from Joint Hypermobility Handbook: A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Syndrome