hello- new here. My 11 year old daughter was just diagnosed after we rushed her to the hospital when we noticed a swollen, warm right leg. After reading and reading, I suspect it could have been triggered by a very bad stomach bug she had for a week . Three days after it subsided she complained of leg pain. I mean, it could have been something else, who knows, it’s just a hunch. Been reading about the importance of a healthy gut microbiome, perhaps that’s why I’m leaning there. A few questions: 1) is anyone on daily probiotics? Recommend any? 2) have you modified your diet and seen improvement (more fiber, less sugar)? 3) is there any good, reliable literature out there that explains some of the other symptoms of APS? My daughter gets mild UTIs, I thought it was because I have to be on her about drinking water but now I’m thinking it’s associated. She is currently bridging from lovenox shots to warafin. We are working to get her levels therapeutic. Thank you all!
Healthy gut and APS: hello- new here... - Hughes Syndrome A...
Healthy gut and APS
Hi there and welcome. Eleven is very young to be diagnosed with APS- I’m curious to know what symptoms she had before this - what sounds like DVT? Who diagnosed her and did she have positive antibodies to all three of the APS antibodies? How long have they said will she have to stay on warfarin?
Long story. But she woke up on the day we were going to catch a plane to go to Nashville for a week vacation- I live in Florida - complaining that her her leg hurt and since she plays volleyball and also does art, we thought it was related to either sitting for a long time drawing or volley. We got on our flight and when we landed she was limping and we noticed discoloration and swelling. My husband is a paramedic so we took her to urgent care. They sent us home with an order to ice and elevate the leg and if no improvement take her to the ER. Within 24 hours we were at Vanderbilt University children’s hospital. There they did a Doppler and discovered the blood clot between her femoral and popliteal vein. They did the three APS identifying tests Lupus anticoagulant, beta, and Cardiolipin. They came out high but they said to repeat in 12 weeks with her specialist in Florida. She left Vanderbilt on lovenox shots. She is being seen by a specialist at Joe Dimaggio children’s hospital - the head of pediatric blood disorders and child hood cancer. He has been amazing. He repeated all the tests, Dopplers etc, again and again, and she was confirmed to have APS. Now she is bridging from lovenox to warafin. Vanderbilt children hematology team was also amazing. I have to say, we were blessed to catch it early and have been guided by good people. Since she has been on warafin, we are staying on top of her about staying hydrated and she hasn’t complained about a UTI. And to clarify, they were always mild, never requiring antibiotics. I’m just trying to find links between some symptoms she has had before this that I would have never associated. Not to blame myself, although of course I’ve done that, but to try to figure out the why. I know there is nothing I could have done to prevent this, but if I can help anyone else by sharing what might have led up to it, it makes me feel better.
Oh my, so young to have gone thru so much! Your doing everything you can and both of you have achieved a better understanding. I think many of us would like to know the why, how etc. For me my blood thickens and clots if I have a virus! I have learnt to manage this.Sounds like you have an excellent team of doctors who can help control and manage the condition. This is so important.
There is a lot of research in links with the gut for autoimmune syndromes.
Having started on warfarin, the diet to balance that and vit K is a good place to start.
We are all so unique with our APS and finding the right combinations can be trial and error, especially to begin with.
Hopefully once reached her targeted INR, her symptoms will improve.
Follow your instincts and go back to the doctors if things continue, esp the UTIs and if you are worries about anything. xx
Thank you so much ❤️
You must not blame yourself as there is nothing you or anyone could have done to have prevented this, it is what it is and it seems you and your husband have done everything possible that you could have done to help her get an early diagnosis - which for many of us can take many years! Even so it must be very overwhelming for you all but things will settle down.
It sounds like your team of Doctors are on the ball. You may know that as APS is an autoimmune condition it can often run with other autoimmune conditions. One which is often grouped with APS is autoimmune Thyroid. Your daughter is very young so it would be highly unusual for her to have acquired any other conditions at her age but I just thought I’d mention it. People with Thyroid issues can be more prone to UTIs so that might be something to consider if she continues to get them. As you say she hasn’t had one recently so hopefully it was just a blip and it will be a thing of the past.
I wish both you and your daughter well, I’m sure she will do just great.
thank you for your kind words and useful info. Tomorrow she is getting an Antinuclear Antibody test to check for other autoimmune issues.
As I say sounds as if you have excellent Doctors who will check everything and leave no stone unturned. Good Luck.
Has any comnection of some recent cases, with covid and in rare cases covid vaccination been established?
I know people who are connecting change in APS blood results to these.
I am sorry to read this story. You must be very worried. I am loath to say anything because I am not a doctor. Did your daughter have a rash? 11 is very young to have chronic UTIs!
I would ensure she is seen by a specialist because these symptoms might be related.
I don’t blame yourself. You have done nothing wrong. Drinking water is exactly right especially if she gets reoccurring UTIs.
With good wishes,
Ros
I’m so sorry to read your daughter has had to go through all that at such a young age.
I have been attempting to improve my gut biome for about 7 years now. I try and do it without any supplemental pro or prebiotics. Avoid the sugary processed supermarket milky ones
I know it’s not easy for everyone but I try and only eat
organic veg, they may have more additional microbes on loads of fruit,veg and salad
Nuts and seeds in copious quantities, I add them to everything.
legumes, Harricot, Broad, cannellini beans
Unpasteurised cheese
Live yoghurt and homemade sauerkraut
Cut out Ultra processed foods
Sourdough rather than bread
Try and make everything from scratch
I have to admit it’s very time consuming and very expensive, but since I’ve done all the above my fibromyalgia aches/pains have diminished significantly and I have more energy. I can’t comment on how it’s affected my anticardiolipin levels as I haven’t had them tested recently.
I have 3 teenagers and I can’t say they like all of the above and love UPF’s but every little helps I feel and I hope your daughter improves with an improved gut biome.
Thank you, so helpful. I’ll take baby steps but eventually get to a better place on the diet than we are now.
I was diagonosed (FINALLY!) in 2001 after years of blood clots, migriaines and even mini strokes. Lovanox then warfarin and all those symptoms vanished. Yeah! A close friend, who is a bit of a nag, urged me to go on the Atkins Diet. I was not overweight and tried to explain the necessity of having a stable diet on warfaarin. But, after a bizarre discussion with my MD, I did go on the Atkins Diet. And I noticed an energy difference within days! More energy, better mood. I could not understand how the Atkins Diet could make such a difference. Turns out? I have gluten sensitivithy! Dr. Hughes (who first chronicled the existence of APS) noted a strong corrolation between gluten sensitivity (which is not classic Celiac) and APS. I remain on warfarin, but since going gluten free in 2004 all of my APSs marker tests have fallen from strong positive to negative. Some doctors have urged me to stop warfain, but, knowing that random acquired illness may re-activate my autoimmunity, I remain on warfarin.
So in conclusion: you may suggest that your daughter try a gluten free diet for a few weeks. You can research this topic on line and discuss this with a doctor. I will note that a patient on a gluten free diet may test negative for Celiac even if the patient does have Celiac. So if you want a definitive diagnosis it may be best to test before going gluten free.
Sounds like you are a caring parent! Doing researach is a good thing!
You know, I’m pretty sure I have gluten sensitivities so she might too. Will start gradually on all this, but I believe that nutrition can certainly play a positive role. Thank you!
I’m very sorry that your daughter and your family are going through this. But I’m so glad that they caught this early. I too started having full blown kidney infections ( not just UTI’s) around the age of nine. A lot of pain and needed antibiotics to clear them up. With in a few years I also developed migraines as well.
By age 15 I was seen by a nephrologist, who warned me to never let my kidneys be vulnerable to extreme cold, so I had to quit playing women’s hockey. I also learned to never pass by a water fountain with out having a big drink. When I was pregnant with my first child, I had to be hospitalized because of 7 kidney infections during the pregnancy. (The kidney infections were leading to toxicity for my baby.) The pregnancy ended well.
With my fifth pregnancy, I developed something called renal colic. Oh man that was painful. It hurt more than my contractions!
Decades later I now have scarred kidneys and kidney disease.
I’m not telling you this to scare you but to let you know how things progressed with me. Hopefully because your daughter was diagnosed so young, she will not go through what I did.
Best of luck with your journey. And tell your daughter to keep drinking!
Hi, welcome, sorry for my late reply, I have been battling an infection. Firstly welcome, and a lot of us have children with autoimmune problems, I do myself. It is very important that you work with your consultant and GP with any new things you want to address with your daughter in case of drug contraindications. For myself and one of my children chronic urine infections improved with taking D Mannose daily plus also a very good probiotic, (but I am not on Warfarin). I have dire drug allergies myself to all antibiotics also to many other drugs.
I/we have a Low G.I Mediterranean diet combined with a low G.I diet. I did check all with our consultants and doctors, and I regularly make sure mine and my young people's blood tests are all withint range for Folate, Ferritin, Thyroid, B12, vitamin D etc as all can impact, we also as a family all exercise, again checked out before commencement. I hope your daughter continues to improve and gets better quickly. MaryF
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