Willows Son Leaving College Because Of Pots.

[willows]

Yesterday was a sad day for us all here. for Mike my 18 + year old son having completed years one and two of his course and having started the third year ( 2 final years of a 4 year subject) has had to resign from college and the course because he is so unwell he cannot carry on .

He is very down at the minute having to admit that he has reached the end and just cannot carry on , when we all sat in the college talking to the staff about this Mike struggled to talk about how hard everything is at this time , his pain , lack of concentration , memory loss, the tiredness and how he felt that he just didnt have the strength anymore to actually drive himself to college , let alone then study for 4-5 hours , at times he almost broke down in tears in front of everyone and it was so hard not to grab him and hug him in front of all the staff , but doing this I feel would have made things even worse .

After we left the college Mark and I took him for his favourite lunch ( Pizza land ) and I had along talk ( and hug ) with him as he still hadn't actually made the decision to leave the course , so i took this out of his hands and made the call myself . Mike now has three months , November , December and January to get some help with the condition , rest and get some help with the depression what we can see slowly growing in him . Mikes lost so much confidence that he's staring and freeze all of the 6 dozen mince pies for christmas, help me decorate the christmas cake , wrap gifts and generally do 'happy things 'about the house so that he forget for a while college, study and what he is going to do with his life , both Mark and I know what he can do and do well so with some careful planning of these things we know we can bring back his confidence , after all actually being able to make something that everyone thinks is really good and taste delish boosts even mine and I've been cooking for over 49 years !

Neither Mark or I are surprised by this happening as we have had more and more problems with waking Mike up every morning, even though he is going to bed and sleeping 'out cold' from between 8 pm -9 pm each night come 8 am in the morning he is so 'out of it ' we cannot wake him up and it can take up to 20 minutes of careful shaking , rubbing his back and talking to him to bring him round , even then he's still tired .

For the past 6-8 weeks on waking he has been covered all over his face with Petechiae ( bleeding under the skin , I suffer from this as well but get it on my feet and I know its due to not getting enough oxygen whilst sleeping , which leads me to believe that also like myself Mikes heart beat is falling below 35 beats a minute each night or so .

He is very upset about leaving college , but as his disablement advisor said , if he can get sorted out in the next few months then he can return in Jan or Feb 2010 , but I dont see him going back to Public services or finishing his course.

Its like one by one his hopes and dreams are being shattered by POTS, he gave up going into the police because his fitness was rubbish , he decided on forensic because at least he was working along side the police and would be involved in something he loves, but now this has also been shattered and we are all at a loss as to what to do next.

I still feel so guilty about Mike. why oh why did my wonderful son get this rotten condition , he is so good, so kind , caring , helpful ............he's never done anything wrong in all his 18 + 1/2 years, worked hard at what he's done , worked hard with charity work , which most 18 year olds wouldnt have touched at all , he's never moaned about all the horrible procedures he had to have done to him in hospital since he was just 3 years old and has never asked either Mark nor I for anything other than our love and support , he is for us the most wonderful son and we are so proud of him for all he's achieved .

Yet ..........................POTS has attacked him and at 18 +1/2 years old a lot further on in the condition than I ever was at his age which scares both mark and I so much.

A really worried Willows .

[MomtoGiuliana]

I'm so sorry. It is so hard to experience our children's suffering and disappointment. I hope with treatment and time he sees improvement. He has a great role model in you.

[potsgirl]

Ami~

I'm so sorry that you and your son are having such a difficult time right now. The good news is that since he's younger, he may well have a better chance of recovery from his symptoms. It sounds like you're being strong in the face of many obstacles with you and your son. That can only make you a wonderful role model (as Momto G wrote) to your son, and I love that you're focusing on good and happy things such as preparing for Christmas.

Is Mark seeing an autonomic specialist? Is he on any meds? I will keep you and Mark in my thoughts and send positive energy your way, and keep you in my prayers.

My best,

Jana

[janiedelite]

Having watched my mom worsen from illness for the past 20+ years, I can say that it is often harder on the loved ones to watch someone suffer than it is to be the sick person at times. And now, the roles are reversed slightly as she has somewhat stabilized but has had to watch POTS taken away my nursing career, friends, ability to have children, and much more.

She often voices how painful it is to see her child suffer physically and to have so many dreams taken away. She would take on my illness for me, in a second, in spite of her own sickness. I know you feel the same way about Mike. He might have an uphill road ahead of him, but it will be comforting for him to know that you have travelled that path before too. My mom had to go through getting ill and losing her job without anyone to really help her. But she has helped me as I faced those same losses, even though it was painful for her to watch. I've been so blessed. Mike is blessed too, in so many ways, to have you to help him.

As you know, there is a life that can be lived even with POTS. It just looks a lot different than we thought. I'm so sorry he's lost his ability to go to college. Especially as young people, we are all driven to find meaningful work. I hope he can find a life path that can still bring some fulfillment in that regard.

[juliegee]

Oh Aimee,

My heart breaks for you both. We've also made the difficult decision (at age 12) to take my son, Mack (now 16 y/o) out of school. He and both sobbed. He felt like he was "going backwards" while all of his friends went on with their lives. It was very difficult for him to see them still attending school, playing sports, etc. At that point, he felt very sad and isolated at school, especially at lunch. He said, "Mom, they're all laughing and eating- they have NO idea what it's like for me." He couldn't eat at the time without vomiting.

In retrospect, Aimee, it was the BEST decision. He was able to sleep a lot more. I was able to fill him full of frequent, tiny, pureed meals, chock full of vitamins, instead of worrying whether or not he'd keel over at school because he was unable to eat or even carry his backpack. I also made him take walks every night for at least 1-2 miles to build up his stamina- slow and easy. He did weekly integrative manual therapy. That whole year, we just focused on healing him.

Mike CAN'T do it (school) right now, but that doesn't mean that he NEVER will be able to finish. You/he have more time now to pursue traditional or even non-traditional treatments. He will have time to sleep, heal, eat, exercise, etc. Has he had a sleep study? I worry about apnea. Maybe oxygen at night will help him get more rest and be better able to function during the day. Mack also has a really low HR. Has Mike tried a stimulant type med? How about an SSRI (anti-depressant)? All of those ( and more) helped to stabilize Mack.

Forgive my ramblings. I just wanted to share in your broken heart. We've been there and it hurts so badly- especially as your Mike is on the brink of manhood- a time that is supposed to be all about a celebration of independence. How you must worry about him and his future. I will keep you all in my prayers. I know he can find a better treatment regimen, heal, and take this time to care for himself.

Big Hugs-

Julie

[shadesofgrey49]

I understand firsthand how heartbreaking and depressing and frustrating this can be. I had to take a semester off of my last year of college in 2008. I was finally making friends and I was sad to be away from my comfort zone. Even though I was still able to graduate on time, I had plans for taking extra courses and being super type A personality till the bitter end, but my condition made it hard to even be average.

I did a lot of moping that semester off. In retrospect, if I wasn't going to doctors several times a week, I would have signed up to do volunteering when I felt up to it.

Everything happens for a reason. He'll now have the time to focus on getting the right treatments. His friends have probably done semesters abroad, so he should think of this as his semester abroad. Studying...health care. That's what I studied! Mostly dysautonomia.

[willows]

Thank you all so much for your kind words, knowing that other mums have been in the same situation as I have been in has helped a lot .

Yesterday both Mike and I went to see our local doctor and he is sending Mike to see the sleep specialists , like Mac's mum I to thought he may have sleep apnea on top of all the rest and our doctor agrees, in fact he was quiet impressed that I had linked the facial markings to lack of oxygen and the fact that Mike was so hard to wake in the mornings.

We are still waitting for an appointment for London , but given the problems I had there nether Mark, Mike or I are surprised of the lack of contact so far.

On not such a good note, I spoke to the doctor at the same time as Mike because my hands are now throwing out 'nodules ' from each finger joint which are bright red , hard and very painful , as well as this my hips have been so bad recently that I've been in constant pain 24/7 in my left side ( inner ) lower back . Even more worrying is that I'm forgetting things again .............silly things like my own daughters name and date of birth, who people are in pictures or why something is in a place , so I'm now being tested for memory loss heck , if I get old and senile before my time , Mark can always use the bibs and cot we have put away for Mikes children ( in the future) and I have a new pram under the bed so I could always use this instead of a wheelchair if I get to decrepit!

They had put this down to the Statins I was on them to lower my jolly old cholesterol, but as I've been off them now for about 4 -5 months it looks as if it may be something else, well I've always said I only have half a brain ........the good half !

I'll let you know whats happening with Mike over the next few weeks via this site, Oh if you go into the pots photo site under family/members are photos of Mark, Mike and myself so you can see who your writing to now ...............unfortunately

By the way , if when reading the first post you thought I had lost the plot as parts of the sentences didnt make sense , errrrrrrrrr, this is also part of my problem as I think I'm writing something down when actually I'm not , I've had to read , re-read and then re-write this post a few times to make sure its OK and that includes all the words that are written back to front !!!!!!!!!!!!!!!!

Thanks again for your supportive words.

Ami xxxxxxxxxxxx

[ethansmom]

I am so sorry to hear that your family is going through this. No parent wants to see their child suffer, but it sounds like you are doing all the right things to support him through this time. Obviously I don't have the magic answer, but I did want to give your family some encouragement.

I was also in college at age 19 when POTS came into my life- working, going to school, and having the time of my life. Having to quit my job and put school on hold was one of the most degrading and humiliating experiences of my life. Watching the people around me carry on as usual made it even worse, but let me tell you- I found out who my friends were because they are still around. Spent most of my days laying on the couch, wishing for death and feeling more alone than I ever had before. Thankfully, I found an angel doctor who diagnosed me correctly and improved with treatment and LOTS of patience.

I was able to return to school part time (I took a lot of courses from home, so I would highly recommend this option!!) and it took me twice as long but I did get my degree finally. I didn't graduate with my class, instead I finished during the summer that year and at the end I picked up my diploma from the office. I will never forget walking out of the college with my diploma in hand- big tears streamed down my face just thinking about what it took for me to walk that walk!

I then went on to have two beautiful children (and a 3rd on the way!), got married, and eventually opened my own photography studio working full time out of my home. I've had to make a lot of lifestyle adjustments for this disease, but with a lot of courage and patience, your son can come out of the dark place that he's in right now and start building a new kind of life. I still have big dreams that may never come true, but I'll keep trying!! I wish you all the very best and try to enjoy the holidays.

I am very sick right now with the pregnancy (first major relapse since getting sick 8 years ago) but I am trying to get joy out of the little things...and remembering what real life is like- and knowing I will soon be back in the swing of things- helps a lot to get through the days.

[Sophia3]

Sorry to hear about your son,...so tough to see this illness at any age, but especially in young people. Tough on parents too.