Angels do walk among us

Hi,

Bryn had a tough time the other night after a therapy session. Eva took him to a quieter place than he is normally in himself. She says his resting heart rate is quite high so she sat him down and slowed him down. I think now that he is always on-line, on games, on texts because he is revved up to avoid another level of depression and fear that is lurking below the surface. He came home from that session, the first one his dad has accompanied him on and had major blow-up, refused to go to bed, staying up until 3:30 a.m.to piss us off and refusing to talk to us. He left poison pen letters of hate, at our computers. Brian and I were so upset, no one got hardly any sleep. It was a very rough night. I don't cope well at these times, my anxiety level hit 9/10, stomach aches and Brian felt similarly.

In the morning we talked with him and I could see that he had touched a deeper level of pain and fear in himself and was reacting to that. He agreed and could see this a little more clearly. He skipped school because he was unable to get up. His English teach, who is an amazing woman and who he likes a lot, e-mailed me and said she was worried because he had missed English again. She said she was going to talk with him when he came in the afternoon and turned in his homework. She did that - she was amazing. She told him she thought he was not the same enthusiastic, inspired person who started in Sept. And asked him what happened. He said the 3 week long illness had left him discouraged and that he didn't like plays much. She has rheumatoid arthritis and she spoke to him of her journey, told Bryn that he would learn to live with himself. Bryn said he didn't want to live with this, he wants to be like everyone else. She told him she understood. She said she and he are not quite like everyone else and that they have to learn to live with that. She said sometimes she can't go with her friends because her immune system is low. She said she is 45 and still learning to live with her AI syndrome. She told him not to give up and to keep doing therapy.

Bryn came home with a very deep smile in himself. I feel she is a true blessing. He has not had anyone to speak to of this who can relate from a similar place with similar feelings, before this year. Now he has his girlfriend and this wonderful woman. I sent her  the following e-mail:

"Thank you for talking to Bryn.

You are like an angel come to show him he is not alone and that

people cope as best they can and keep growing. Until this year he

hasn't had anyone who can relate to him from their own experience -

now you and his new girlfriend both - what blessings. It was a very

long dry spell to not meet anyone who had similar feelings for

similar reasons..... You are truly a gem, as a teacher and as a human

being.

Thank you again, Cathy

Blessing to all of you out there, Angels do walk among us,

Cathy

Losing Trust in self, body and life with AIS and growth

My son has been sick this week. As with every time he is sick he refuses to really rest. He stays home from school but he plays video games most of the time. When school gets out he is skyping and playing with his friends. This week I heard him being extra loud and raucous one afternoon and evening. And yet when I enter his room he says he feels terrible. I ask him how plays the games when he feels terrible, how he talks with his friends for hours when he feels terrible. He says the games take no energy - I disagree - we have had this same conversation a thousand times. Why don't we limit him you ask? We are his bloody parents - well, you try and limit  him on this - it just won't work. Wimp, you call me..... maybe. It's the path we've taken - too many volatile times, too much chaos.... it's best this way. he will ahev to figure it out for himself - he is naturally a very independent thinker and needs to find things out for himself. Just desserts maybe - I am the same.:-&

This week I came to his room again and said the same old things but I was very clear  in myself that in refusing to rest he is rejecting his own body and its needs, his self AND that his faith in life was damaged badly when he got hit with ALPS. So we went through the same song and dance "me - get off, Bryn no- it doesn't take any energy etc"..... But this time I put my arm around him and said "you have lost trust in your body, you hate it and refuse to give it what it needs and you don't trust life because it hit you with ALPS and the whole experience of diagnosis. You will not get well as fast as you want if you don't rest. You can't fight your physiology - you need to rest." He had been upset early and crying because he is sick of being sick so there was a little chink in his armor and what I said got through.

Late that day at bed time he was feeling down again about being sick and I repeated myself - he asked to lie with me and have some support, - he put his head on my shoulder and lay against me - and I told him he is more normal than he thinks, his body is stronger than he thinks, many people are sick right now - it is not all ALPS fault, and that he needs to find his faith in life again, in himself. He seemed to really get this. He is growing up.

The next day he was still unwell, but he rested and stayed off the games - though his girlfriend was here for awhile so his motivation was stronger :-). still he is getting it slowly but surely he is finding his faith in life, himself and his body again... he si starting to see how this whole process of getting syndrome has twisted his view of things. That he can trust again.

:-) Sometimes we make progress.
Cathy

Video games and youth

Hi,

My son plays a lot of video games, hours most days. When he isn't on the games, skyping/doing multi-player and connected with his friends, he is texting what seems like almost constantly. None of this feels good to me - in fact in my gut it feels really messed up. His friends are doing the same thing.  They are hardly ever alone. If we try to limit is we are faced with nuclear explosions. Bryn is a total extrovert - on the scale of extrovison (sounds like a spy technology!) he is off the scale on the high end. I love that he has a big circle of friends and has such a great sense of belonging. He often is out with his friends and enjoys himself greatly with them - many he has known for 10 years. He is different than his father and I in this - we are extroverted but not extroverts in how we recharge - we are introverts. Bryn recharges WITH people. That said, though, he is almost NEVER alone. Is this normal? Do others see this?

I see that this is how his generation is or at least his friends are, but I also know that Bryn hides from his pain by playing games for hours. He has a deep fear he is different than others because of his ALPS, which is also magnified by his age, 17, when they are all so concerned about how they fit in. I call it addiction. I don't believe anyone doing anything for so many hours a day, so frequently can be anything but addicted. It seems crazy to me. And I observe, though, Bryn denies it, that he is more aggressive and FAR less patient when he is on the games or just off the games, in his communication with us. He brings the aggression of these very competitive and highly aggressive/violent games into the world after he leaves them, for a time. I am sure ALPS and the trauma of all of that contributes to his great need to be on these games with his friends and by himself too. But the games seem to be addictive in themselves, too, especially for males. And everyone in his circle seems to be on all the time too - peer pressure seems a big contributor too.

ALPS seems to magnify everything times 5.  Does anyone else have concerns about these games?

We are older parents, I was 41 when Bryn was born, Brian was 43. I am also rather revolutionary - I don't like mass culture, I don't participate in it or have a great deal of respect for it. We didn't get Bryn Game-boys or any video type games at all in his early elementary years, hoping to keep him off of them. Well, Good Luck with that, - it's an avalanche to deal with!!! When Bryn was diagnosed with ALPS he struggled with his sense of loss and of belonging and being different and having no video games became too much for him - he felt different in too many ways. At the age of 10 we gave in and got him a Game-boy and eventually an x-box and off he went into the virtual world. Well, here we are. I hate it - the constant use of them, the violence. I worry about his use of them. He tries to be off part of the time, sometimes, as he has discussed with us and his counsellor, but most of the times he doesn't try at all.

As I write I think it cannot be easy for a kid who wants to be like everyone else to have a mom who is out of the box. I am not weird, don't get me wrong... though I did put purple in my hair, tastefully, of course, recently :-).  Still, he is bombarded with mass culture, and a kid who just takes it all in, doesn't have nor want discretion yet, and his mom is a visionary and out of the box - can't be easy, eh?! Well, maybe I just figured something out - I need to respect HIS culture while espousing my own views - he is not an in the box guy either, his life has shaped him, ALPS and family,  but he is not ready or willing at this age to be anything but in the box...... I think I need to approach him a bit differently, perhaps that will be easier for him.

Let me know what you think about video games, constant connectivity, and kids never being alone, parenting. Whatever else comes out of your reading this. What is happening with your youth, kids, yourselves?

Thanks for reading - I  hope to hear your thoughts and comments!
Cathy

Hi ,
Well,  as result of my finger in the door accident and the resulting therapists appt. Bryn is being far more responsible. We have let him decide when to go to bed - he is going at 12:30 on a school night!! I am not happy with that and tell him I don't agree but I don't change the time. And he says to me "I know you don't like it" CALMLY! Six hours of sleep?! But he desperately needs to have the choice in this  - I see that.

Our therapist says that he is too bonded. When she says that I feel guilty or angry at her. I don't think he is too bonded. I think what happened is that becasue of the trauma of ALPS and the diagnosis he was unable to take normal responsibility for his age. He would go nuts at the drop of a pin. So in this way he has reached 17 and he is delayed in his development. He is normal slothful 17 year old boy, too, but I do think he is delayed also. He is crying for freedom when what he really needs is the ability to take responsibility so that he can be more independent and trust that he will be able to manage on his own. Somehow he knows instinctively that he hasn't developed that and he feels trapped by it. He NEEDS these skils at this point. And now when we try to teach them to him he rebels because that is normal for 17 year old individuating and gaining independence. So his rebellion traps him in the corner where he is stuck with no responsibility skills. The rebellion is normal too.

We broke that trap last time at the therapist. As hurt as I was that she didn't address his nastiness to me, or even offer a kind word to me - she brilliantly got him over the hump into accepting responsibility for more freedom at bedtime. I know she couldn't be seen to ally with mom and she couldn't move him off his teenage crazy head but I wish she had said to me something like "that was a tough session. Good work mom. Are you OK?" even in private. However, nonetheless, she got him over a very important hump. He is doing things that he should be  doing around the house much more readily and demanding to do things by himself rather than tossing them at me all the time and saying he is too tired or busy or whatever. He WANTS to do things. Brilliant!! Now if he would get some sleep that'd be great..... all in time.

:-)
Cathy

Hi,

Last night Bryn had what is becoming thankfully very rare,  - a meltdown. We are asking him to be off his video games and Skype 40 minutes before bed so he can wind down. He is not happy about this - all his friend are on until they go to bed and he wants to do the same. Also he made a deal with me to stay up late last Friday night if he got off games at 10:40 p.m. this week. He doesn't like to keep his deals.  When I told him we would turn the Internet off if he didn't get off he blew up.

He started slamming his bedroom door which is awful -we live in a townhouse and it is very disturbing to the neighbors. I put my hands on the door to stop the slam from being so hard and stupidly got my fingers caught in the door as it slammed. One nail was pulled right off and the other is very bruised. Bryn didn't mean to do this, but these are the things that can happen when someone goes ballistic.

Bryn was very upset and this became a good moment, after I had stopped writhing in pain for him to look at himself some more. Why is he so attached to the games and being on multi-player until bedtime that he would go off the deep end? What is going on deep inside that he is this desperate? I know he uses the games as a kind soothing mechanism for his anxieties around feeling different and afraid because of ALPS. I am not happy about this but am hoping the therapy he is doing will eventually move him to get off this by himself, as he heals emotionally.

Now I have been to emerg. and had an x-ray and my finger tip is fractured. I have to give up my clarinet playing for the time being, my orchestra concert on Dec. 1 which happens to include a piece that I fell in love with at the age of 9 or 10, the Grand Canyon Suite, which led to my love of orchestral music - it felt so full circle. My quintet is starting up again after 6 weeks off and I can't do that. These are my passions, loves and where my friends are, the things that I do. Teaching will be difficult too, without being able to play my clarient It's a real bummer.

Well, no one said parenting is easy. PArenting my son with the complications of ALPS is even harder. This was certainly an accident. I really love this boy. Damn it! Life....

Cathy

A Breakthrough

"Hi,
We took Bryn to the therapist last night to work out things around my injured finger. He was very upset. she asked what happened and I explained what led to the slamming doors. And from there she led to why he was so angry that he was slamming doors. He said because his mom "always", "never", "totally" "thinks she knows everything" "will never change" "is a control freak" keeps him in a glass bowl and mocks him"-- all very black and white exaggerated comments that hurt me quite a bit because they are just teen drama and not true. Eva worked with that and eventually moved him towards a version of Freedom, which is what he was crying for more of (esp. not to have a bedtime on school nights) which included taking more responsibility. He thought that was garbage at first but suddenly changed his mind. He agreed to get himself up in the morning, take his dishes to the kitchen, turn lights of, clean his own room etc, all of which he has steadfastly refused to do even having been asked a LOT, like maybe a million times. His  condition left him so stressed and upset that anything extra has been too much, including responsibilities - in this way he is less mature than his counterparts at school. Well, he stayed up until 12:30 a.m. which is way too late and that upset me, but I had agreed to this so I had to stick to the plan....I woke up in the night and was really upset, couldn't sleep. But he DID get himself up for the first time ever. He made his breakfast, cleaned up, brought the paper in and got to school all by himself. We actually stayed in bed until after he left having slept not very well for agitating about his late bedtime. Hallelujia!!

Right after the appt. with the therapist we went out for pizza. I was really hurt that Eva had not called him on his hyper-exaggerated sense of victimization - he was really in his teen hormone mind...But he came up right away and said "I'm sorry Mom. I love you" I asked him why didn't you say that up in the therapy room. He said he didn't know - then after awhile,  that he felt pushed into a corner and really scared - I think he means in general. I was hurt still that Eva had not called him on this but in retrospect I believe she had to work with what she had and she did get us around to an agreement to him having this freedom at bedtime which is so precious to him, for living up to his responsibilities which is so necessary to us and him. It worked!! Fingers crossed that it holds!

This has been really hard. He didn't learn this responsibility stuff between 10 and 17 yrs. because of the pain and trauma of the ALPS and diagnosis. He couldn't add anything else with out major tantrums. So he is not mature in this way and he cannot take it from me or his dad at this age now as he is needing space and to separate. But with Eva, he can take it. We are making headway... ahhhhh!  :-)... now it just has to stick! I think it will be a bit bumpy here and there, realistically, but it is definitely going in the right direction.

Cathy

Hi !
I worry about  my son. He is 17 this weekend and there is so much to deal with this grade 12 year all by itself. so much to deal with to grow up and become an adult. And then we add ALPS on top of all of that normal teenage stuff and nothing is normal anymore. ALPS seems to magnify everything, especially because Bryn has been so emotionally traumatized by the process of diagnosis and and the existence of his massive spleen.

Bryn has been working with the therapist my husband and I have seen off and on for the past 23 years. She is wonderful. I am so happy they have hit it off and he is finding her work with him very beneficial. In some ways Bryn is wiser than his years because of all he has been through and all he has learned as a result. In other ways he is behind his peers in maturity because of all he has been through. He doesn't have the energy to work AND go to school., where friends are gaining work experience. He hasn't been able to fully experience his capabilities and actualize them at school because he misses so much school when he gets sick. This year, because he is feeling somewhat better he is having some very positive experiences and doing really well in several classes. This is great! But he needs to have more of this building of positive experience and seeing what he is capable of - he has missed that these past 7 years when he has set his sights on passing and that is all - he manages his time to get 50%! :-/. He is really bright and talented at music and film editing and cinematography. He's a really good writer and his comprehension in reading is above average. He's got so much going for him! He does procrastinate like crazy, and his work habits and organizational skills are horrible. This year he is really getting some great marks and comments from teachers. They have always thought he is bright but now they and he are seeing it happen!

He will  be on his own path to the future - it won't look like his friends. It is hard for him to not be very  stressed sometimes - he wants to be like everyone else, but I don't think he will be ready for College in Sept. He is just taking these first steps to success. Of course there is no one way, one path, the path is wavy, up and down for everyone. The schools make them feel there is one way and it is hard for he and I and his Dad to know what will happen, what life will look like. Can he manage a full-time job? He's going to be better at project based work where he can have some rest time. He wants to work in film so that may work out well. It is just hard to see and hard to know. What are the options, the possibilities? 

Has anyone out there been here themselves or with a youth of there own? How'd it go? How is it going? I hope to hear from some of you about your creative solutions and paths to independence and success.

:-)
Cathy

It hasn't been all bad

Hi,
I want to let you know that as difficult as my very first post makes our journey seem, life hasn't been all bad.

This difficulty has pulled us closer together and we know each other on a very deep level. Our son has gained a lot of wisdom, too young, but still it is wisdom. There has been lots of grief and pain but lots of love and understanding between us, too. We support each other, forgive each other and love each other very much, Brian, Bryn and I.

We have travelled to Spain and Italy, a month in each place, nervous about medical care and extra insurance. On one of the trips, after I had explained Bryn's condition as an enlarged spleen to the person on the other end of the line, our policy came in the mail and said Bryn had "an enlarged sleep". Too funny!

We have had lots of fun and good times, too.  Lots!!

There are so many things to talk about. Today I wanted to make sure you know it has not all been bad, at all, as difficult as it has been.

So much more to talk about, I hope you will share with me, too.

Cathy

A hell of a journey - 7 years with ALPS (autoimmunelypmphoproliferative syndrome)

Hi!
 After 7 years of my son, living with Autoimmunelymphoproliferative syndrome or ALPS, I am tired of being alone, falling through cracks and not sure what is normal for my son given his VERY RARE condition. I am hoping you will share your experiences with me and maybe I will see that we are not so alone and maybe I will come to understand better where we are, what Bryn's normal is, what is real and what is not. Maybe you will find something here for yourself, TOO, in a journey with a youth with an AI condition or another limiting condition. The medical community, while providing a diagnosis after 5 years of searching,  has not been a big help in letting us know about what Bryn is or will facing daily. We fall through cracks all the time medically, in the schools, and HAVE NEVER MET ANYONE WTIH ALPS. So we don't know if he is more tired than "normal", what he will face as he gets older, can he hold a job if he is getting viruses all the time, if he runs out of energy and just needs to rest for awhile - he's ALREADY getting older - he's 17 next weekend!! He tells us he is more tired than his friends and that should be enough for us to know, but I want to know from others what their condition is like, what they feel, how has their experience been. I can't tell he is more tired because he keeps up with his friends and is even more sparky in his personality than they are. BUT he is just coming off 3 weeks sick and away from school - this is his grade 12 year, a really big year. He is often sick once virus season starts. .......And this is a long and complicated story.

When Bryn was 10 he had a long viral illness and was very tired. Eventually we went to the doctor and he found that Bryn's spleen palpated quite large. He sent us to a pediatrician immediately - she found Bryn's spleen even larger - right down into his groin - 21 cms. long! It is the size of a football - instead of a fist. The Pediatrician took some blood, pulled me aside, and said she suspected leukemia, and that the blood test would be done by late evening and we would hear from her by bedtime that night. He would be in Childrens' Hospital the next morning to begin treatment if he tested positive for leukemia.

 I WILL NEVER FORGET STANDING WITH MY YOUNG SON IN THE LAB WAITING FOR HIS TURN, PUTTING ON A BRAVE FACE (I thought), AND BRYN ASKING ME "WHAT'S WRONG MOMMY?" I TOLD HIM VERY BRIGHTLY THAT NOTHING WAS WRONG. AND HE ASKED"THEN WHY DO YOU LOOK LIKE THAT?"

Well, this was the beginning of a 5 year journey to figure out what was wrong and causing a massive spleen. Bryn tested negative for leukemia, thank god, and for 5 years he was followed at our local Childrens' Hospital, tested for everything under the sun - cancers, rare leukemias, liver disease, virus, rare viruses. When they weren't testing to figure it out, he was followed every second week wtih blood tests, x-rays, CT scans, etc. His platelets are low, his hemoglobin, neutrophils, and white blood cells, too. Blood levels went up and down as he caught illnesses but were always low. But other than being sick more often with viruses and having to give up any kind of sport that would threaten a rupture of his now vulnerable spleen (it was no longer protected by the rib cage and much more vulnerable to blows), and missing more school because of regular viral illnesses, he was quite normal. Certainly from outside no one could tell he had an illness of any kind.

Fast forward - 5  years of this. Our son has been seeming to do well outside the home, he is very bright, charming, lively, handsome and social, does well in school, but he is violent at home, volatile as hell, and we are dealing with constant abuse. He says the process of testing is not bothering him but but he HATES HIS SPLEEN AND HE WANTS TO BE NORMAL, sometimes he cries and says "I want to go home" but he cannot explain what he means by home (something we are to hear countless times) and  he is acting out at home constantly - holes in the wall, a broken window, a broken lamp,  things regularly thrown AND violence. We enter family therapy, and he does art therapy, Virginia Satir therapy, to try to deal with his emotions, to fix what we parents are doing wrong, but nothing really helps. When we ask to see a therapist at the hospital we are told "those are for the really sick kids." Well, not knowing what is wrong with you, being poked and prodded all the time and waiting for results of tests with NO BLOODY ANSWERS is a horrible kind of TORTURE unrecognized at our hospital or anywhere really. I don't think even my husband or I knew what we felt or how hard this was, which in retrospect seems crazy since our son was off the wall several times a day. We were alone with no other "sufferers"to bounce off of and no real understanding from the medical community. We received no help the medical system and continued paying large sums of our own money, desperately trying to help our son and ourselves. Meanwhile the neighbors thought we were abusing our son and called Children and Family Services.  This govt. agency came and did a home visit (I can't tell you how rude I was to her when she called!! I was shocked that they wanted to come to our house). They spoke with me, with our son, with my husband on separate days, and gave us a clean and even admiring bill of health for attempting to deal with our problems. No we are not perfect, yes, we have problems and are having a difficult time, but we are dealing with a very difficult situation with all the therapists for our son and ourselves that we can muster (she said, unlike many people who don't deal with their problems at all). I still can't understand how a neighbor could have done that to us - though I do know it was very loud and horrible sounding from inside our home. I was nauseous for 2 weeks after each visit of this very kind govt. worker, terrified they would take our son.

Well, 5 years after the first leukemia test our hematologist calls and says she thinks she knows what he has. She wants to do some blood tests and send Bryn to the National Institute of Health, NIH, in Bethesda, Maryland where they have a study on ALPS. The NIH will pay for Bryns' and a parent's plane fare and we can stay for free in the Chidlrens' INN on the campus of the NIH. Our doc eagerly and with our thanks, pulls together a lot of reports, data, files, tests and bloods, to send to the NIH and off we go.

Bryn and I went without his Dad which seemed a big deal at the time. Bryn had 18 viles of blood taken and  genetic testing with his genes read, and after a month wait we have a diagnosis - he has ALPS. He has had a genetic mutation on a single cell in his immune system - the double-negative T-cell. We have a page showing how the gene is written correctly for awhile and then the spelling on it goes haywire - ON ONE BLOODY CELL - and it has changed his life. His body no longer recognizes that cell or gets rid of it when it is no longer needed after an illness - it lodges in his spleen, creating this massive spleen. There are approx. 200 known cases of ALPS in the world. 190 of those are inherited from parents with ALPS who have not been diagnosed or have remained asymptomatic. There are only 10 like my son, who have had a spontaneous mutation during his growth in the womb, in MY womb. Is this my fault? I don't often think that but as I write I wonder if I think it more than I know.... more later on that....

So now my son is, as he says himself, 1/700,000,000 in the world. I am just happy he is going to live, not have a degenerating illness. But Bryn is still mad and upset, he wants to be like everyone else and he hates his spleen. His is a mild case, the most mild case of the NIH ALPS team - lucky right? Some kids are very very ill. He's lucky right? Not to Bryn. He wants to be "normal", he hates his spleen and the volatility continues - only now he is 15 and bigger and it is really tough.

I'm going to leave it there for today. It's a long story. Bryn is doing therapy again the last few months and the volatility has stopped - he is finally old enough to begin to deal with the trauma of what he has been through. I'll tell more about that another day. I am afraid for his future, of the unknown, for his schooling, which is going much better this year because he is feeling better, of what he will do, what can he do, after Gr. 12 with his gifts especially a passion for cinematography and film editing. I don't know whether anyone will comment or be interested or share their story. I hope so. I don't want to be alone with this any more. I don't want to keep the secret of our family difficulties that have arisen from this anymore. ALPS is rare, it is invisible in Bryn's case, we are tired of being in the cracks in the medical system, of trying to figure this out alone with no one to bounce off, no landmarks in sight, making all new landmarks and not even knowing sometimes whether we are in the right place or any place, and of no one else knowing or understanding. I would like to compare stories, to see how and what others are doing, parents of youth, youth themselves, people who were youth once in similar situations.To know we are not so bloody different and alone. Maybe we can help each other figure out the unknowns. Maybe we can support each other. Please share your story with me. From here on I am going to post mostly daily - thought, worries, situations, wonderings as they arise. Bryn is on the cusp of the rest of his life and there are so many questions, so much to think about and not very many answers. Maybe we can share answers or hammier them out together. If nothing else, maybe we can listen to each other.


From my heart to yours,
Cathy