Klinefelter’s Syndrome Journal by Charlotte Kundts Blue 3 From the perspective of the motherEntry One August 2, 1998. Tt has been 10 years since I had Andris. Since then we have moved ‘around Latvia a couple times. We now live in Valiniera, Latvia. Andris’ been teased at school for awhile now. He is convinced that there is something wrong with him because kids keep picking on him. He has been begging me to take him to the doctor to find out what's wrong with him. To prove to him that there is nothing wrong with him I took him to the doctor today. The doctor seemed especially interested in Andris’ height. He asked Andris if his father is tall, he then asked if I had a history of having tall people in my family. T found this a strange question but answered it all the same, I guess the doctor was interested in Andris’ height because T am not all that tall The doctor asked if he could run a few tests. I started getting worried; Andris is a healthy child why would they want to run a few tests? I agreed scared that there really was something wrong with my child. Andris is just sitting there telling me “I told you so, mom! There is something wrong with me!" The doctor came back with the test results with a somber look on his face. He sat down and explained the Andris is completely healthy. The tests he had run were testing for a genetic disease called Klinefelter's Syndrome. He explained that because of Andris’ slight learning and physical disabilities when Andris was younger as well as his significant height difference from his father and I suggested symptoms of Klinefelter's Syndrome. The doctor then told us that the tests he had taken for Klinefelter’s were positive. I nearly fainted; my perfectly healthy child had a genetic disease? The doctor told me that there was no reason to worry that Andris didn't have a severe symptoms. He told me that there was nothing T could do but offer support for Andris because there is no cure for Klinefelter's, Also there is no medication available for children with Klinefelter’s even though our medical system in Latvia is mostly westernized Twas told not to make a big deal about it because it might freak Andris out. I was given a link to a website with information about Klinefelter's. The doctor also suggested a support group or get together for Andris, his father and I with other families. When we left I wasin a daze but I did not want to freak Andris out so I acted as normal as I could. Andris’ father, Fricis, does not get back from his business trip until tomorrow. I will tell him then. Tt has been a long day; I am going to get a long night sleep.Entry Two T sent Andris to school this morning with a smile even though what the doctor told me yesterday is still on my mind, Andris does not seem to understand what is going on although he now knows that there is ‘something wrong with him. When I got home I went to the website the doctor gave me. Iam worried even though the doctor said not to worry because Andris does not have a severe case of Klinefelter's Syndrome. How am I not supposed to worry?! Andris has a genetic disease! I search the internet to see if there is anything I can do. But there is no cure for Klinefelter's. Apparently children with Klinefelter’s can have mental and physical disabilities or slowness. Andris had mental and physical slowness, but he is better now. Children with Klinefelter's can also be obese, this lity. “The obesity is supposedly not caused by overeating or lack of exercise but a symptom of worries me. Not that Andris is obese but if he has Klinefelter's it is definitely a possit Klinefelter's Fricis got home after I picked Andris up from school. T did not know how to tell him, T mean what was I supposed to say? ‘Nothing much happened while you were gone. Except that Andris has a genetic disease.’ Like that would go over well. I did not have to break the ice on that conversation though. Andris told his father that for me. His dad did not seem to upset, which was nice. After Andris went to sleep I explained all the details about Klinefelter’s and showed Fricis the website the doctor gave me, Actually he was taking the news much better than I thought he would, He even suggested all three of us join.a support group so Andris does not feel so alone and he and T could talk to parents about Klinefelter's Syndrome.Entry Three January 10, 1999 so far Andris does not seem all too phased after finding out he has a genetic disease. He is insistent on not becoming obese, so he exercises every day for lengthy periods of time. I guess finding out Andris has a genetic disease does not seem to have a big ef fect on our family. We have yet to go to a support group; there do not seem to be any. We thought it best fo tell the rest of our family first. Andris has told his father and I repeatedly that he wants to be the one to tell. I am quite proud of him, He is taking the news very well. Finding this out has brought our entire family closer, we are all ‘trying to be as supportive as possible. My parents have volunteered to drive Andris to sports practices and exercise with him, Our family is also healthier now thanks to Andris. He is taking the obese symptoms very seriously. He has not told me or his father if he has decided to tell any of his friends, Although Andris does not seem ashamed to have Klinefelter's he also has not shown any interest in telling anyone he has it outside of family. Irecently discovered that another boy in our neighborhood also has Klinefelter's This boy, Juris, has more slightly more severe symptoms of Klinefelter’s than Andris. I introduced the two of them; so far they seem to be getting on very well. Andris has also become very protective of him. He glares at people who stare, tease or laugh Turis. Juris’ parents seem to be very happy that Juris’ made a friend. Juris! mother, Zona, and I have become good friends, the biggest binding factor being our sons. She suggested that we start a neighborhood support group. My husband has been spending more time at home for some father-son bonding time. Tt is really sweet. Bonding time used to be ice cream and the movies, now its bike riding or hiking. I am not happy that Andris has Klinefelter's but I enjoy the changes that have happened in our family since it has happened.Entry Four November 25, 1999. Andris has joined the basketball team. Since he is tall basketball was a good sport to choose. Andris still has yet to tell any his friends, which is fine it is his choice, He has made many more friends since joining basketball, Although he still gets bullied, he complains when he gets home. Sometimes he is crying. But he has been very strong about it. Juris comes over almost every day. They compare days and play video games, Andris has helped Juris with exercising and Juris has helped Andris lighten up on the exercising. It is incredible the changes. We have started a support group with Tlona and her family, most of the time it is like a party/neighborhood hangout. Our support group is one of the few support groups for Klinefelter’s in our city, All the boys play while us parents sit around and talk. We do not normally talk about Klinefelter's just about the boys. Occasionally we talk about Klinefelter's. When we talk about Klinefelter’s we normally talk about how it has changed our lives negatively, positively or otherwise. I feel bad for some of the other families. Klinefelter's has torn some families apart. Some parents have divorced but still come to the support group for their son. Other families such as ours have grown closer. Few families have changed their lifestyles like we have. Some of the other families in the support group live nearby or their children go to the same school as Andris, so the boys are looking out for each other when they can, Our support group is more of a community or family. Most of us parents look out for each other's children and help each other out. One or two of the parents in our group do not really interact with any of us outside the support group. All the same all of the children get along really well. Klinefelter’s has had a positive influence on us. Right now Andris, Fricis and I could not be happier.Entry Five January 4, 2000 Andris, his father and I went to the clinic today. The doctor wanted to check up on Andris to see if anything has changed. Nothing has changed. The doctor is impressed and happy with our lifestyle changes. He told us that from now on ‘Andris would only have to come in like he used to for yearly checkups until he is going through puberty, Puberty is when most of the symptoms are most noticeable. The doctor suggested that during puberty Andris take some hormone replacement therapy, which he may take for the rest of his life. The doctor wants to make sure that he diagnosed the correct severe-ness of Andris’ Klinefelter's. After a doctors checkup the doctors give our candies, Andris refuses which makes the doctor laugh. ‘Children, he said ‘normally do not refuse candy or sweets of any kind no matter how health conscious they are.’ Andris told the doctor that he likes sweets he just does not want to get fat or obese, The doctor nodded with a serious look on his face then let us leave, he did not seem to take the obese comment lightly. Later on we went to our support group. Worried about the whole, more symptoms show during puberty I started up a conversation about it. The other parents seemed concerned about this as well but since we cannot do anything about it told me not to dwell on it too much, Andris even told me later ‘do not worry mom, everything will be okay.’ I smiled at him but it did not get rid of the worry I was feeling Fricis told me not to worry either. It did not help, especially since we have decided that we want another child, But T have been holding out for fear of having another child with Klinefelter’s. I will have to talk to my doctor later about the possibility of having another child with Klinefelter’s. I do not want another child who has a genetic disease no matter how non-life threatening.Entry Six May 21, 2000 Fricis and I talked to my doctor about having another child. The doctor told me that having another child would be fine. I do not think he quite understood our circumstances. T explained to him that our first child has a genetic disease called Klinefelter’s Syndrome and that we wanted to know the probability of having another child with Klinefelter's, The doctor told us that having another child with Klinefelter’s would not be impossible but it wouldn't be common. He told us that it would only be possible to have another child with Klinefelter's if the child was a boy. Fricis and I already knew that only boys can have Klinefelter’s Syndrome. We thanked him and left. Later on after we had picked up Andris from a friend's house we told him we were going out for dinner later. We told him he could choose where we went. He chose his favorite restaurant. We took him out to dinner to tell him that we had decided to have ‘another child and that Andris would soon be a big brother. The first question Andris had was ‘will they have Klinefelter’s like me?’ I told him that we did not know, but we would find out for him, Andris told us that he wanted to have a sibling with Klinefelter’s and that we should have a child with Klinefelter's. We had to explain to him that Mommy and Daddy cannot choose if the baby has Klinefelter’s or not. Andris looked upset but did not make a scene because we were in a restaurant. I am worried will Andris not like his little brother or sister if they do not have Klinefelter's Syndrome? I put it to the back of my mind until the next support group meeting.Entry Seven Today we had a support group meeting. I asked the question I had been dying to ask. Do you think that Andris will like his little brother or sister if they do not have Klinefelter’s? The other parents reassured me that of course Andris would like the child. T told them how insistent Andris had been on having a sibling with Klinefelter's. Juris’ mother, Ilona, told me that the only reason Andris wanted a sibling with Klinefelter's was because they would be similar and Andris could teach them about the disease and could better understand anything going on in their life. That made more sense. I guess I was Freaking out over nothing, But I do not want Andris to dislike his sibling or be angry at his father or I for giving him a sibling without Klinefelter’s. Then again Andris’ old enough to know that he does not always get what he wants. I can understand that he wants a sibling that is similar to him. He is probably feeling a little alone, even though he has friends with Klinefelter's. No one in our family besides him has Klinefelter's, maybe he feels like the odd one out or that it is not fair that he has Klinefelter's and no one else in our family does. T talked to Fricis about this. He told me to stop worrying. But I kept bringing it up so he agreed that we should have a talk with Andris and see how he feels about everything, not just having a younger sibling.Entry Eight We talked to Andris about his feelings today. He did not seem all that comfortable about it. He told us the he does not hate having Klinefelter's he just does not understand why no one else in our family has it. We told him that sometime nature decides to randomly mess with our chromosomes. I asked him if any of his other friends have people in their families with klinefelter's. Andris told me that a few of his friends do but not all of them. So I guess he was feeling alone in our family, I wish he had told us sooner. I do not want him to feel like he is the odd one out. Andris told us that he is still being bullied at school because he is taller, more clumsy and weaker than the other boys. Before we could ask him if he wanted us to talk to their parents he told us that he can deal with it by himself because he knows why he is taller and weaker than other boys. He just does not like being teased about it. He explained that he sticks with his group of friends most of the time and that he had told his friends a few weeks ago that he has Klinefelter's and that they have not teased him, in fact they have begun standing up for him except for one of his friends. ‘They switched groups to the teasing group. Andris had asked his friends not to tell anyone and that the only reason he told them was because he trusted them. Thad not realized that he was still being teased and bullied so much at school. It made me mad. It especially made me mad because I have not noticed. I am proud of him for handling things by himself, but I still wish he had told us.Entry Nine October 3, 2000 I found out today that I am pregnant about 3 or 4 weeks. I have not told Fricis or Andris yet. I also do not know the sex of the baby or if the baby has Klinefelter’s yet. Andris has been bullied still but not as much. Andris is really happy that they are not bullying him as much. He told me that they must have gotten bored or that they have changed. Somehow I doubt that, I might have had a little talk with their parents. ‘Anyway, T.am happy that they have laid off a little bit. Andris has made more friends, some who have Klinefelter's and some who do not. They are all very nice. Andris has become less health conscious. By this time I think he knows that he probably will not become obese because he does not have severe symptoms and because he exercises daily and eats healthily. We have a support group meeting tomorrow. It is not much of a support group anymore but a fun time to have with people who are in similar circumstances as you. Andris never disliked the support group but now he loves it, he is always so excited to go. Andris and his friends are a tight knit group of friends, and they are a mixture of boys with and without Klinefelter’s as well as some girls. Andris now has more friends who are girls than he did before. I think that the support group and his friends have boosted his confidence because before all of this Andris would barely talk to girls, he was very girl shy. T am happy that he has come out of his shell. T.am very happy and I would not change anything for the world.Entry Ten September 10, 2001 Today is the day! Today is the day T tell everyone T am pregnant. T am scared, not for the baby but because I do not know how Andris will react. T know that Fricis and T already told him that he would probably become a big brother but still any reaction he may have will most likely be unpredictable, We started as we normally do, we let the children go off and plays then grab drinks and chairs. We started a casual conversation ‘how are you?’ ‘Anything new?' I called Andris back over before I told everyone that I am pregnant. There was silence then congratulations. Andris gave me a hug and smiled at me. T sighed in relief. Andris asked me where the baby was. I told him it was in my belly. Andris pressed his hand to my stomach and asked where. Andris’ too young to know where babies come from. I told him that the baby was too small to feel right now but later mommy's belly will grow bigger. ‘Andris took the news better than I thought he would. Then he asked the question I thought he had forgotten. ‘Will the baby have Klinefelter's like me?’ All of us adults looked at each other. I told him what I did at the restaurant before that I do not know if the baby would have Klinefelter's but Mommy and Daddy would find out soon. Andris nodded and went back to play. He did not seem as upset as he did before at the restaurant, that is good. I am glad he is not mad, T do not want him to feel like he is the odd one out because his father and I chose for him to klinefelter’s. I really hope he does not feel that way. That is the last thing I want him to think.Entry 14 June 14, 2002 the baby should be born soon. Andris seems excited when he is with Fricis and/or T about having a sibling but when he is with his friends he seems upset. Ilona told me that he is nervous and probably a little jealous just like most soon to older siblings, Tam worried that Andris thinks that we are replacing him. I know that lately he has realized just how different he is from other boys. He is still exercising so he will not get fat. Andris is not fat: I do not think he could ever be fat. He is a very healthy child; I am concerned that he thinks that he is getting fat. He is getting heavier, but only because he has grown. T have asked Tlona to tell me what Andris tells Juris. Tlona told me that Andris is worried that Fricis and I will forget him, he is not a good older brother and he is still being bullied, He does not want to tell his father or T because he does not want to upset us with the baby coming soon, T did not realize that Andris was hiding all of this from us. I do not normally interfere with Andris’ school life even though I hate that people are teasing him. I think it is important that he learns to work things out for himself. A meddling parent is an annoying parent. Andris knows that his father and I love him so I do not understand why he thinks that we will forget him once the baby is born. I understand being nervous about being an older brother especially since the baby will be agirl and does not have Klinefelter's Syndrome. Andris was disappointed when we told him that he will not have a younger brother and that the baby will not have Klinefelter's like him As relieve as Tam that the baby doesn't have Klinefelter's I feel bad because Andris is still the only boy in our family with Klinefelter’s Syndrome. Fricis is taking Andris out tomorrow for some father-son bonding time and to talk. I wish that Andris would tell us what is on his mind more often. I do not want him to keep everything to himself. We are here to support him no matter what. That is what parents are for, with or without a genetic disease thrown into the mix.Entry Twelve October 9, 2002 the baby was born a couple of months ago. We are all adjusting, ‘Andris seems to be better now. I do net know if he is putting on an act but Tlona says that he has been happier when he has gone over to play with Juris, Andris is still on the basketball team, he and his father go out almost every day to play. He is still really worried that he might become obese because he has Klinefelter’s Syndrome. Andris used to be physically weak. He got exhausted easily and couldn't keep up with other boys his age. Since he exercises every day now, he is much stronger. He is beginning to have some trouble in class though. He has trouble with reading and math, sometimes with writing as well but he works very hard. When we walk around he will read all the street signs. At home he reads everything he can as well as practicing math, He gets frustrated easily ‘though because even though he is trying so hard his progress is slow. T know that mental slowness is a symptom of Klinefelter's Syndrome so I have asked him if he wants me to tell his teachers so that if he has trouble, he can turn in some homework and classwork late, Andris refused and works even harder on his academics. He has sacrificed some of his exercise time to study. Andris is frustrated with himself because he learns slower than other children his age and he has had to cut down on the amount of time he exercises. He told us that he wishes he does not have Klinefelter's. This is the first time I have heard him say that having Klinefelter's irritates him. I worry that he may begin to hate himself because he has Klinefelter’s. So far he is hanging in there pretty well but he often loses his temper or gives up. I talked to the doctor and he suggested a counselor for Andris to talk to get his feelings out. We are not wealthy so paying for a counselor will be a little difficult, but we will manage somehow.Entry Thirteen To pay for a counselor we have cut down on eating out and spending unnecessary money. The counseling seems to be helping Andris which is wonderful. Andris often takes his homework with him to the counselor who helps him with it. He has also started talking to his teachers about stuff he doesn’t understand, He is a studious child. With counseling, getting help from his teachers, basketball and exercising Andris doesn't have a lot of time on his hands but he still manages to hang out with friends and have some fun. As far as I know Andris is not teased as much at school, but he doesn't share that with Fricis or I. He really is an independent child. Andris is a wonderful older brother and from what I have heard a supportive and protective friend, We still go to our support group, where Andris can talk to the older boys and ask them questions he may have about Klinefelter's. All the boys are supportive of each other and instead of playing the older boys have begun sitting down and having talks with each other. Other families have joined our group some who have older boys and some who have younger boys. The families of younger boys are inquisitive and just as Fricis and T were when we first joined. We answer all their questions as best we can. Some of the newer families have answers to questions that older families do not. Most of the boys have not gone through puberty yet so many of the parents are concerned ‘and curious about what will happen to their child during puberty. Some of the oldest boys did not receive any new symptoms but some of them did. One of the boys, Teodors, has the most severe symptoms of Klinefelter's he has learning disabilities, tall and is heavier. He is a sweet boy, we all like him. But we are scared that our children will have severer symptoms after puberty. None of us want our boys to have to deal with any more than they do no, sadly it is not in our control. We all have to wait and see what happens.Entry Fourteen April 7, 2004 Andris is 14 this year. He has begun going through puberty. The doctor has him taking hormone replacement therapy. This is supposed to help prevent or lessen more severe symptoms of Klinefelter’s during puberty. Andris seemed to be a late bloomer for going through puberty but I would not know, Klinefelter's could have altered that. He seems to be relieved that the hormone replacement therapy will lessen any further symptoms. He told me ‘I do not want to have a girl's body or become obese’. Andris has become alittle thicker around the hips and a somewhat heavier but not unhealthily so. He still exercises every day but not as much as he used to. He still learns slower than other kids his age but he is not struggling as much as when he was 11. Andris still goes to a counselor but less frequently, Andris is good with children even though he is tall. This surprised me. Some boys do not get along with children. Andris babysits when he can, adding to his already busy schedule. In our support group Andris often helps younger boys with homework and runs around with them. Children are normally scared te know what will happen to them because they have a genetic disease. Most kids do not listen to the doctor or their parents because they do not want to know what is happening, But the Andris will explain to the younger boys what will happen and why it is not scary. But they need to be healthy so they can lessen risks of this or that or explain that talking to people can help. Klinefelter's Syndrome may not have affected Fricis and I's life as much as it did Andris’ but that is only to be expected since he is the one who has Klinefelter’s and we are not.Entry Fifteen December 27, 2012 Andris is 24 this year. He was accepted into college on an academic scholarship and worked very hard. He has graduated now and has a decent paying job. Andris looks like a normal male his age except he is taller than normal. He has worked very hard to be normal up till now but he has accepted himself and his condition a little more. I would be lying if T said he accepted himself to the point where he does not care if he is overweight. He still has a healthy lifestyle. Now and again as a family we drop by our old support group. Most of the families that were there when we were have moved on. But Andris still enjoys talking to the boys and their families and offering advice. Andris is still taking hormone replacement therapy but he does not seem to mind, He has come a long way. He has many friends with Klinefelter's and without. He also has friends who are girls and over the years has eased himself out of his shell. If you saw Andris from across the room you would be able to pick out nothing unusual about him. except that he is tall, Even if you talked to him he would seem just as ‘normal’ as any other male his age. A person with Klinefelter’s Syndrome can live a normal life, which Andris has done. I am very proud of him. As awful as it probably is for me to say, Iam glad Andris has Klinefelter's Syndrome, It has taught him many things and has made him the best person he can be. He wouldn't be Andris without Klinefelter's Syndrome,Sources + "Latvian Names." Behind the Name:. N.p., n.d. Web. 27 May 2013. , + "Health Care in Latvia - Www.vm.gov.lv." Health Care in Latvia - Www.vm.gov.lv. N.p., n.d, Web. 27 May 2013. . + "Healthcare." Latvia POLARIS Process. N.p., n.d. Web. 27 May 2013. , + “LIVING WITHKLINEFELTERSYNDROME." Stefan. N.p., n.d. Web. 27 May 2013, -.