My 32 year old son who has Down Syndrome was diagnosed today with temporal arterilitis.
Tim aka Waffle has been getting swelling and pain throughout his body every few months for a couple of years. He was admitted to the hospital with swelling and pain in his hand in January. He quickly went down hill and slipped away twice luckily they brought him back. They always treat him for infection including this visit in January. He left the hospital still ill and with a diagnosis of cardiomyopathy and on continued antibiotics. He seemed to recover from the infection. Then April 4th he had swelling in his face we took him to the Dr who due to his history and symptoms treated him with two antibiotics for MRSA. As parents we were grateful to have caught it early and to avoid another hospital admission. However Easter morning ( while still on antibiotics) he had significant swelling and complaints of vision problems. Due to his Down Syndrome there is a large communication barrier. With the new complaint of vision problems we were scared and took him to the Er. There they added another antibiotic and sent us home with orders to follow up with his Dr. which we did today. The Dr ruled out infection after hearing of the vision problems and new complaints of pain in the temple and jaw. He has now been diagnosed with temporal arterilitis and of course the Dr started him on steroids and low dose aspirin. This sounds like a scary thing to have. Given his reluctance to tell us when things are wrong combined with his communication issues I'm pretty scared for him. Any suggestions on things we could look for or questions we should ask him, also does anyone know of any body else with Down Syndrome and this condition?
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Are the doctor really sure he has TA, the pains in his body, particularly jaw and sight problems could due to that, but not sure about the swelling, and he is very young. Diagnosis for patients in their 50s and even 40s are becoming more common, but not many in their 30s. People are sometimes diagnosed as PMR or GCA -sometimes referred to as TA, and only later it's found to be something else.
I have included some information I send to new patients, which obviously you'll need to read and digest on your son's behalf. Once you've done that and gleaned a bit more information please come back and we'll try and help as much as we can.
This is what I send to newcomers, hope it will help. There's a lot of information to digest, so you may need to read it through a couple of times, and take your time to read other sites etc. Too much to take in all at once.
"PMR or GCA are not like most illnesses -take a course of tablets for a few weeks or months and they're cured. There is no cure, but the inflammation caused by the underlying illness can be controlled.
Lots of us are never sure what caused the underlying conditions of GCA and PMR (physical or mental stress are favourites though) but having them means that your immune system is not working correctly and allows certain cells within your blood vessels to grow too much - hence the Giant Cell in GCA. That causes inflammation in your blood vessel walls and means that the blood and oxygen does not circulate around your body as well as it should, so you get aches, pains, stiff muscles and fatigue.
In PMR the most widely affected blood vessels are those to your main muscle groups - shoulders, hips, knees. In GCA it's usually just the shoulders plus those blood vessels that feed your neck, head, and sometimes the Aorta. Serious sight problems can arise if the temporal artery is affected and causes problems with the optic nerve, if that's damaged then partial, or all sight can be lost.if your Aorta is affected it can lead to strokes, aneurysm etc.
The only drug that controls that inflammation is Prednisolone (Corticosteroids) it does not cure the problem, but it keeps it under control.
Usually PMR and GCA go into remission, but that can take a number of years, around 4 seems to be the average, sometimes a lot longer.
The initial high dose (PMR,15-20mg, GCA,40-80mg) takes control of things, and then you have to taper slowly enough to keep the inflammation under control, if you do it too quickly you may go below the level of Pred that works for you. It's a balancing act, you don't want to take too much Pred, but you need to ensure you are taking enough.
The usual plan is to reduce every month but, and it's a big but, what looks achievable on paper, in real life it's very often not! As I said most people have started at a bigger dose, and therefore the inflammation at that level is well under control, the art then is to reduce SLOWLY provided you have no return of symptoms. Some doctors don't seem to get the 'slowly' bit! If you reduce too quickly, whether that time-wise or by dose you are likely to go past the level of Pred that can control your inflammation.
If you remember the mantra-do not reduce more than 10% of your existing dose - it will stand you in good stead. So at 50mg that would be 5mg, at 20mg -2mg or 2.5mg. Obviously once you get below 10mg, that will be part of a 1mg tablet, so most people find that cutting them in half (so long as they are uncoated) gives approx 0.5mg
Recommended time to take Pred is early morning, with or after food. However the cytokines that trigger the inflammation are produced around 4am, so some people take their Pred around 2am so that by the time it is fully in their system (about hour or two) it's ready to fight the inflammation.
Try and read as much as you can about your illness, the uk charity PMRGCAuk.co.uk has lots of information. You can find a link if you go to the home page of this site and scroll down, it's on the right hand side.
There is a book by Kate Gilbert - A survivors guide to GCA and PMR on Amazon - either hard or e copy, just type in GCA or PMR in Books. The North East branch of PMRGCA also has lots of info, link from main charity webpage. You can also get information on the treatment suggested from British Rheumatology site, or patient.uk site has information leaflets aimed at patients and doctors. A little while spent searching the internet will give you plenty of reading.
Look up 'Spoons Theory on web, (Butyoudontlooksick.com) it's not about PMR but another auto immune disease, and it will give you an insight into how to adjust your lifestyle.
You do have to do your bit as well though, just because you feel better, you are not back to normal, you still have the underlying disease there. You have to learn to pace yourself, that means resting. Your muscles are not as resilient as pre PMR, so when you exercise - do gentle - Pilates, yoga, Tai Chi all good - no strenuous workouts or marathons! You need to let your muscle recover, and that now takes longer.
Take more time planning, don't try and do half a dozen jobs all at once, or all on one day! Take any offers of help, even though it may go against the grain at first. Life can return to NEARLY normal, just in a slight slower lane maybe.
Please come along with any more questions, or just to talk. There's a lot to learn, but there's lots of people on here willing to help "
Thank you for the information. It is helpful. After bloodwork and imaging combined with symptoms Waffle's Dr is confident in the diagnosis. Yes 32 is very young but those with DS age quicker. Several doctors have explained to me that my body and my sons body are basically in middle age at the same time. It is common for those with DS to experience health issues that are common in people older than them. Waffle follows up with his Dr next week and we will go from there. I'm hoping to have a list of key questions to ask as I was ill prepared for this diagnosis having never heard of it.
Yes in that case the diagnosis does make sense. As PMRpro says - never come across combination of Down Syndrome and GCA before.
Unfortunately, I suspect life might become even more difficult for both you and your son. But as we've both said, because this forum is multi-national there is always someone online when you want information.
If you put out another post, or add your location to your profile, and then request "people near me" you may be able to find patients that are closer to home - I guess from your post timing and language you are either in US or Canada.
Please do come back at anytime, this illness can be very isolating at times, for patient and carer - and I'm sure you will find you need to let off steam sometimes! Feel free!
Poor Waffle - and poor you. I do hope things go well.
I have to ask - what are their grounds for diagnosing temporal arteritis? As DL says he is VERY young - unless they mean another form which is found mostly in young males.
Sorry - haven't come across anyone with Down syndrome and really no-one this young either.
Do keep in touch and let us know how things turn out.
People with Down syndrome age quicker. The way it has been explained to me is that due to his DS his body is middle age so basically anything that I could experience so could he. He had lots of bloodwork and imaging along with his symptoms led to the diagnosis. He follows up with the Dr. next week to see hiw the steroids are working.
All the very best - and I hope he is able to express his pain etc for you. My neighbour has a Down daughter who must be about the same age and I see their problems too. Mum must be psychic. xxx
I do FB - but I seriously doubt that a 75 year old northern Italian lady does! I shall have a look though!
I imagine he has never been on high dose steroids before (what dose is he on?) so be prepared for mood changes which I'm sure will even worse for him to cope with than they were for us.
As DL says - come by anytime for a shout and scream. It isn't easy, we know that.
What a lovely looking guy your son is! Do I gather he works? We have quite a few Down people around here who work in restaurants and really do well. They've recently had their special Winter Sports Olympics - they put me to shame!!
He attends an Adult day training program. It is basically like school he has computer, music, art, and his favorite drama class he is cuttently rehearsing for his annual play. Add to that that his Dad is a working musician and Waffle attends all his gigs and even gets on stage and songs with the various bands. He is almost always a happy care free man who loves everyone without judgement. Our community especially our music community have excepted him with open arms. In the rare occasion that he misses a gig we are asked no less than 50 times Where is Waffle. My heart is breaking that my child who has been healthy most of his life has now had 2 serious dIagnosis in a span of a few months. I'm sure as we get more into this new journey I will have TONS of questions for those of ypu with more experience.
Please do have a look all his stuff is public as I believe in awarness and hoping he can bring inspiration to families just beginning their walk in tbe wirld of Ds
So sorry to hear this news about your son. You've contacted though an invaluable forum who will, I'm sure, be able to play a supportive role as you traverse what is potentially a difficult time, certainly I imagine while he is on a high dose of steroids. Do keep in touch and keep us informed how you are getting on: worries, questions, queries, moans and generally letting off steam, nothing is too small or irrelevant if it's causing a problem or difficulty. We've all been there!! You are not alone! All best wishes Jackie x
Oh dear, I can so understand why you are feeling scared over Waffle's diagnosis of temporal arteritis. It is especially difficult to see our children suffering at any time and with the communication problem to which you refer you must feel so much in the dark. I do hope that it has at least helped to put pen to paper and to have already received the helpful replies from the wonderful band of contributors to this site.
Although I have experienced temporal arteritis together with polymyalgia rheumatica, from which I am now in remission, I am sorry that I have not come across anyone with Down Syndrome and this condition in the past - perhaps, if you haven't already done so, you could make enquiries of our national organisation, PMRGCAuk, in this respect?
A close friend of mine has a nephew with Down Syndrome and he gives so much joy to his family. Your Waffle looks a picture of happiness, too.
I do hope you and he get all the help and support from those treating Waffle that you both deserve to make the coming months as smooth as they can be - meanwhile you could not have come to a better place to air any worries/for answers from our wealth of experience, or just for a bit of TLC, albeit virtual.
Thank you. I do worry that we will miss something. With him its a combination of the communication barrier and him being so stubborn about missing out on his events that ge wont say anything until things are bad. I am so glad for any asvice we can get.
Hi and welcome to this wonderful group. You will find information, support and many listening ears. What a wonderful photograph of you son. It made me smile instantly. I am not experienced enough to comment on your situation but just wanted to say this is the place to sound off, share news and hang out with people who understand some of your difficulties xx
Thank you, that is one of my favorite pictures of my son. It shows his tatoo, motorcycle riding, rock n roll personality. I have already felt comfort from this group.
Hi, I read through your post and the replies and two things come to mind. First, I'm hoping that the inflammation markers in his bloodwork match his symptoms. If that's the case, maybe having blood drawn more frequently may be helpful to monitor how things are going. Also, I think the pacing part of this disease sounds like it might be difficult. Keeping in good communication with his day program in regards to fatigue and having them build in a break may be helpful. Obviously it will be on your shoulders on the weekends. I don't know what you normally do before and/or after a show but that's probably going to be a spot where some rest is needed. As others have said - this is a great place to learn about PMR and GCA as well as a wonderful spot to share worries and frustrations. Please let us know how things are going. We'll all be thinking of you both.
Thank you for the great advice. He has wonderful staff at his program. They keep an excellent eye on him and we have great communication. We have all figured out that we have to watch for symptoms as he will not tell us if he has an event or something he doesn't want to miss. As I've mentioned I had never heard of this before so if you are anyone else can think of auerstions I could ask him please let me know.. Again thanks for the advice.
Can he do on a scale of one to ten where's your pain level? If not, maybe a visual (like a speedometer or something) that he can use to help him express fatigue, pain, or stiffness? You'll be able to see somewhat how easily he's moving in the morning. He looks like he has a very expressive face, you may be able to see that he's more tired.
That's a wonderful idea. In the hospital they used cartoon faces each with different expressions and that seemed to work well. I did not even think of that. I will have my husband make a chart for him tomorrow. Thank you.
I'd bring out that chart again, it sounds wonderful. The hospital should be able to tell you where they got it. I've seen one and will try to remember the company. I work with preschoolers who have delays for various reasons. Please feel free to message me, but the group as a whole can also help you brainstorm.
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