The difficulties for families with autoimmune profiles.

[MaryF]

I have just spent a stretch of time in hospital with another of my children. My own profile, Hughes Syndrome, Psoriatic Arthropathy, Sgrogrens, Lupus and Hypothyroidism. St Thomas' did a test for APS... however as right professor said, if I test negative and do despite my dangerous past clinical incidents... then my children probably will. Her test result showed nothing. However I have only just passed a Lupus test, despite having obvious clincial incidents since teenage years, same for my thyroid problems, which supposedly have to have the right test, I went outside the NHS for mine... and now my eldest son aged 22 has has shown a profile of this (thyroid) on the NHS. His own doctor aware it is in my family.. It shows how the tests are failing the patients rather than the patients failing the tests, in the case of some patients. It is very useful at nearly 47 to have some concrete diagnosis, however the tests for half of my diseases despite the clinical episodes appear to take their time to show up. Over 30 years for some of mine.

Two years ago, my ten year old son, experienced a migraine so severe, that school was only allowed two mornings a week, his migraine which caused blackouts, dead legs, dizziness, blurred vision, vomiting and extreme pain with broken or no sleep, lasted 15 months and 4 days. As I worked to break this headache, whilst teaching my son almost full time, (fully determined for him not to get behind), he slowly came out of this phase. No diagnosis and a real scathing attitude regarding my own autoimmune profile, which set us up to be bullied not only by the PCT but also the Education Department. My husband and I were accused of making up illness.

Thankfully these dinosaur attitudes have diminished, however my 13 year old daughter then took over with the migraine, she has now had a nasty nasty continuous migraine for nearly two years, she too has been in hospital. She is on aspirin which does help a little, but several times a day, drops off to sleep, we have to wake her, either at home or at school, she can hear what we say, but can't move for a while. Her speech is a little slurred at times. These attacks come on suddenly with no warning. We are as a family extremely worried, this mirrors my own childhood experience. We are booked in for an MRI next week, but I am not hopeful that anything will show up, it did not for either myself, or my son! Our new paediatrician is more open minded and is keeping an eye, and has now added beta blockers to the equation, these were tried with my son, to no avail, but I suppose the fact that we are not being dismissed, with a young girl who works so hard at school, with the start of her GCSE's, Hardly able to work this week, due to extreme pain and constantly switching off into episodes which she has no control over - is a start. Mary F

[jetjetjet]

hi Mary - wow you certainly have your plate full ,to say the least - hope things work better this time with daughter. sorry that things are always such a battle for you . lets hope for some positive, good results for a change. here if you need me buddy -------------------------------- jet

[paddyandlin]

WOW mary that is a lot going on and will be thing posativ thoughts for byour daughter, This is always a difficult situation especially as it is family and when you do not get clear answers it is really annoying.

We here for you when you need us.

Paddy

[TJSTICKYBLOOD]

Mary sorry to hear about your familys health. My 21year old daughter has shown a few of my early signs severe bruising headache and pains in her legs.

[haley]

Have you tried dietary changes, especially the elimination of gluten?

I had migraines for years then developed APS and had myelitis (inflammation of the spinal cord) as the result of a flu shot. There are other autoimmune conditions in my family. I went off gluten and dairy and soy as a suggestion from a doctor who advises this for all of his patients with autoimmune conditions. My migraines have disappeared as have the many many headaches I had that I was able to keep from turning into migraines. haley

[MaryF Administrator]

Thanks... yes, we have fantastic diet, everything home made, and gluten is limited. MF x

[bernieembleton]

Hi Mary. I have been a long term migraine sufferer, and was diagnosed with Sero- Negative APS in 2005 and my cousin in 2011 in Australia she is positive. I was going to enter a trial for migraine,as they may be linking it to a tiny hole in the heart. I get central chest pain just before a migraine, but because of my conditions i was unable to do the trial. However, i spoke to one of the doctors on the trial, and told him what i had found helped and halt my migraine attacks and take away the flashing aura and headache. The drug i take for angina NICORANDIL is a vasadialator ( opens the veins ) in case you are not clear on the meaning.Ps not trying to tell you if you already know. With keeping my INRs in range and taking the Nicorandil helps keep them at bay. If my INRs go out of range then the headaches and migraines start + other symptoms. I do hope this is of help, as you are having a tough time as a family. Best wishes Bernadette

[MaryF Administrator]

Thank you everybody for your kind words, she is under a decent paediatrician who does not rubbish our family history and is keeping an eye, she is only 14 and on aspirin, she has now been started on beta blockers, (the same ones tried with my son a couple of years back), however no difference in headache or strange turns yet! We are back in on Monday to the hospital for the MRI. I don't jump to conclusions, however it is a worry. Thanks everybody x M

[pumpkincake]

Mary... I am so sorry you are having so many troubles. You are a wonderful Mom and your children are blessed to have you. There is nothing worse than seeing our children hurt and suffer. I too have been in a similar situation with one of my daughters, but she has an immunodeficiency since birth. I had to fight to get her proper care and be her biggest advocate and fan... as you are with your beautiful children. Hang in there Mary. You have alot going on. Remember to take a bit of time for you during all of this. <3

[MaryF Administrator]

Thanks everybody, just back from a fab Sunday afternoon film followed by lazy Sunday Lunch that had nothing to do with me making it x M x

[Hilariew930]

Thinking of you Mary. : )