[samour]

Hi all,

Sick Kids, thrombo stroke called again to tell me Sarah's CT of the brain has a small amount of clott still left in the sagital sinus(there was a massive clott in August). They feel that it is a scar and this is the best it will get. They want to take her off the blood thinner, EEEK, I am afraid as they don't even know why she had the clott in the first place.(She tested negative 3 times for APS) She has appointment next Tuesday at Toronto General, she is in the adult world now. She also has her period every other week and is on birth controll, she can be on it as she is on a blood thinner. The birth controll is not working anyways, but what is she to do for control when she is off a thinner?

She has been so tired again, dropping things and her balance still remains unstready. She is to have her last chemo next Wednesday. I am not sure what they will do as they have upt her prednisone and it hasn't done any good. I feel so worried, we are going backwards and this has been 7 months of active flare with her lupus.

I want to bad for her to be healthy, this kitten has been a great distraction, He is so cute.

Sharon

 

[Maia]

I have no idea - there are a variety of genetic reasons for clotting issues and you'll want to make sure all of them have been tested for not just the APS related antibodies.

As to the birth control & her periods - was she on that when she had her original clot (& before being on blood thinners?)? Have you asked if there is anything that could cause her periods/hormones to be that off which could relate to all this?

So many questions... and so few answers. How frustrating for you. I wish there had been more improvement by now. I'm glad the little kitty is bringing both of you much joy right now at least.

 

[samour]

Thanks for your reply,

Sarah is being followed by a complicated adolecent gyne. clinic, and they are trying to help her. She has had problems with her periods prior to the clott. She will need to find a alternative when they take her off her blood thinners. Sarah is rather distress at this, as she is still not well maintained. Rheumatology still feel her clott is from the lupus even though her blood work was negative. Oddly enough her lupus blood work wasn't very significant either. So you can't always trust labs. She has been treated since July and is know showing signs that the cyclophosomide isn't working any more. I am not sure what they can do. I want so much for her to be in some kind of remission. I understand that is not completely possible but the problems walking,standing,headaches and sore joints and fatigue are so troubling to me.

I wish this was me not her

Sharon

 

[hazel595]

Sharon how very worrying for you honey. Are they giving Sarah low dose chemo to help with her lupus?

I had low dose chemo in 2001 and again in 2002 before it really started to work......it was to bring my lupus activity back down to base line as the lupus had gone way out of control.

The thing is with Antiphospholipid Syndrome walking, standing, headaches and sore joints and fatigue are all the symptoms......and as she has already had a clotting experience I can understand why you are so worried about her.

Please make sure when they tested for APS that both the required tests were done because you can show negative for one test but positive in another. The blood tests for APS/Hughes Syndrome have complicated names but are essentially simple and universally available through your doctor/GP. There are two tests – anticardiolipin antibodies and the confusingly named lupus anticoagulant.

You will see on the Hughes Suuoprt forum the following information which I have had permssion to copy onto my own Hughes support forum and I am sure it will not be a problems posting here for you to read.

Anticardiolipin Antibodies (aCL) - sometimes referred to as Antiphospholipid positive in 80% of cases higher levels = higher risk of thrombosis.

Lupus Anticoagulant (LA) - Positive in 30-40% of cases Cannot be used if patient is on warfarin as it masks the blood test results which would be negative.

The confusing term ‘lupus anticoagulant’ should be done away with. It is NOT a test for Lupus and is NOT an anticoagulant. But it is a historical term, and so far has stuck. Confusion is added to by the variety of clotting tests used in different laboratories with abbreviations including KCT, KCCT, DRVVT and so on. A topic best left to the haematologists.

Of these two tests, the first is far more important and more frequently positive – but because nature can be awkward, some patients have only one or other test positive – hence the need to test for both. Having said this, we do see some patients who appear to have APS/Hughes Syndrome in whom both tests are negative.

It is usually advisable to repeat the blood tests on more than one occasion – especially if the results are ‘borderline’ or ‘doubtful’. One positive test for antiphospholipid antibodies does not mean that a person has Hughes Syndrome. For this reason, the test should be repeated after 6-8 weeks. A positive test on two occasions is much more important for doctors making the diagnosis than a test that is only positive once.

Tests that are only just positive and that are present on only one occasion may not be significant. This is because harmless antiphospholipid antibodies can be detected in the blood for brief periods, occasionally in association with a wide variety of conditions, including infections and certain drugs (e.g. antibiotics and certain blood pressure pills).

In making the diagnosis, the patients history is often more important than the actual test results – for example, a 40 year old with a DVT and lung clot may not link it with the teenage migraine she suffered, or the two previous miscarriages. These points may seem pedantic but APS/Hughes Syndrome is a diagnosis, which if made early, can totally turn around the prognosis from a potentially life threatening disease to a relatively normal life.

www.hughes-support.org/

Take a look at the Sapporo Criteria for the classification of the antiphospholipid syndrome which is the Clinical Criteria on the following link: click here for Physicians Criteria

I hope my post will help and I know what you mean about wishing it was you instead of your daughter......I think all mums would swap with there child if they could to prevent suffering.

take care xxx hazel

 

[samour]

Thank you so much,

I will take this info with me. I would think that Hematology took all theses test. They said they tested Sarah 3 times. She is on Tinzaparin, a injectable heparin. Sarah has been tranition to adult Neuro and Stroke team. She has her first appointment Feb 5th. The team at present from Sick Kids want to take her off meds, but not when she is flaring. They said it would be more harmful to be on blood thinning meds. I don't want her to have another clott.

Sharon

 

[samour]

Oh I forgot to answer, Yes Sarah is on cyclophosmide, chemo, she must be really sensitive to the drug as she lost all her hair and is quite sick after treatment.