What do you wish for on Valentine''s Day?

[lumpkin]

Maisie, he is a cutie! I hope every thing comes back normal, too!

 

[Ellen]

Date: 2/3/2007 1:34:49 PM
Author: Maisiebelle
Thank you again for your kind words. It really means a lot.

A quick update: James has had his development tests and he is scoring as exactly where he should be for his age. He was really cute when they were trying to get him to do things and the Doctor was laughing a lot. He especially loved the little dolly - he kept kissing her then dropping her on the floor!!

He is now waiting for the main test - I can''t remember the name for it but its basically testing him for autism. I don''t know what they do but I am hoping he does well in that too.

I feel really emotional at the minute. The slightest thing is making me cry. I really am hoping everything is going to come back normal.


Thats James in my avatar with his lovely daddy

Maisie

Oh Maise, I truly hope you get the news you hope for. He is DARLING!!

I am sending you big hugs, and hang in there! {{{{HUGS}}}}

 

[Ellen]

Date: 1/20/2007 5:51:41 AM
Author: lumpkin
Maisie, the waiting is very hard. I have to echo what others have said. Early intervention is so very important. The other thing I''d like to tell you is that autistic children can be quite empathetic, even though it is said they are not. My children definitely are and do connect with other people. They are 5 and 9. The older one has Asperger''s and the younger one has PDD-NOS, and very much of the time you would not realize they are very different from anyone else. Other times, it''s pretty obvious. Try to remember that it is a spectrum, and that there is as much diversity among autistic people as there is among everyone else. And autistic children ARE often gifted with something special, some ability -- even if it isn''t earth quakingly brilliant. My older child sees everything. He can walk into a room and he sees up, down and all around, and his gift of observation is amazing. My younger one is gifted with creativity and learns very quickly. But he gets highly over stimmulated, jumps up and down and flaps his hands all the time, so people sometimes overlook how intelligent he is. Anyway....

If the diagnosis comes back positive, there is such a wealth of information and such a community (at least on line) of families for support, know that you are definitely not alone.

Lumpkin, I don''t know how I missed your post. I will try and start a new thread next week about this, I was thinking about it anyway, as there seem to be some people on here that might have some useful info for me. In the last year I heard (found a site online) of Aspergers, which so far best describes my oldest (23), who I''ve always known was different, but no one ever found anything...

 

[lumpkin]

Date: 2/3/2007 4:39:13 PM
Author: Ellen

Date: 1/20/2007 5:51:41 AM
Author: lumpkin
Maisie, the waiting is very hard. I have to echo what others have said. Early intervention is so very important. The other thing I''d like to tell you is that autistic children can be quite empathetic, even though it is said they are not. My children definitely are and do connect with other people. They are 5 and 9. The older one has Asperger''s and the younger one has PDD-NOS, and very much of the time you would not realize they are very different from anyone else. Other times, it''s pretty obvious. Try to remember that it is a spectrum, and that there is as much diversity among autistic people as there is among everyone else. And autistic children ARE often gifted with something special, some ability -- even if it isn''t earth quakingly brilliant. My older child sees everything. He can walk into a room and he sees up, down and all around, and his gift of observation is amazing. My younger one is gifted with creativity and learns very quickly. But he gets highly over stimmulated, jumps up and down and flaps his hands all the time, so people sometimes overlook how intelligent he is. Anyway....

If the diagnosis comes back positive, there is such a wealth of information and such a community (at least on line) of families for support, know that you are definitely not alone.

Lumpkin, I don''t know how I missed your post. I will try and start a new thread next week about this, I was thinking about it anyway, as there seem to be some people on here that might have some useful info for me. In the last year I heard (found a site online) of Aspergers, which so far best describes my oldest (23), who I''ve always known was different, but no one ever found anything...

Ellen, I see a lot of people I''m just sure are on the spectrum. Now that I know about it, I see it everywhere in mild forms. I have not been diagnosed, but my younger son has and we share significant sensory integration issues. There''s a lot on the spectrum that people would not even think of as autism, and Asperger''s is a fairly "new" syndrome in that it wasn''t identified until the 1940''s (if I remember correctly). Of course, all this has been around forever, but it seems that classic autism is on the rise, and the increase of Autism Spectrum Disorders is as well. Doesn''t mean you can''t live a very full, satisfying life if you have Asperger''s, but you don''t see things the way most other people do. Bill Gates is reputed to have Asperger''s, and look at the wonderful accomplishments he has made and the philanthopic work he''s done. Amazing person. Of course, some people are more significantly affected and how well an autistic person does depends on so many things.

You really should start a new thread. Autism is everywhere and it touches so many people.

 

[IrishAngel7982]

Thinking about you Maisie...I hope the dna testing comes back sans Fragile X for your son. He is darling.

Ellen...please do start a new thread. There are many people here (myself included) who would love to try to help you.

 

[diamondfan]

I think some of these things were just looked upon as eccentricities or deficits socially years ago. No one could say Bill Gates has not done well in life, but in person he might be tough to engage unless you talked about the subject of interest to him. You might have thought of someone who did not interact well but was bright and successful as maybe being a social phobic, a loner, someone who is super smart and talented but not into socializing and is better off working in a solitary setting. It seems to be there is so much almost over diagnosis of this stuff...not that it is not prevalent and needing to be addressed, but it just seems they throw out PSS NOS and Asperger''s around so much, a psychiatrist I know who has done 30 year long studies of kids from infancy through adulthood, where they were followed weekly and then monthly for decades says it is something he worries about. My son who is 5, I had a very green pre school teacher tell me he was austistic, which he wasn''t, I went to neurologists and specialists immediately, but he IS a bit quirky for lack of a more scientific term...he is loving, sweet, silly, bright, engaging, affectionate, and he is his own little self, not in the cookie cutter mold, but who is? We all have things that make us unique, and when we start diagnosing these things too much it can be bad. This was a trend with ADD and ADHD too years ago. Every kid practically was labled it by educators. Again, of course there are kids with ADD, ADHD, PDD NOS, Asperger''s, etc...and they need treatment and early intervention, but there seem to be waves of this stuff in vogue at various times, and it can really scare people and worry them unnecessarily...

 

[Ellen]

Lumpkin, yes, I''ll start a thread on it, I''ll really have to psyche myself up though, as it will bring many painful things to the surface.

Irish, thank you for offering to help.

df, I agree that things seem to go in waves. This child was in that ADD/ADHD wave and put on meds for a year, it didn''t help, and nearly hurt. One does have to be careful.

And I don''t want to just slap Aspbergers on him, but looking at the symptoms, it was the first time I ever said wow, there are so many things that sounds like him.

 

[diamondfan]

Ellen, that is my point. And it may be Asperger''s, I could not say, but I just think there are some things that get overdiagnosed...

 

[Ellen]

Date: 2/3/2007 6:28:40 PM
Author: diamondfan
Ellen, that is my point. And it may be Asperger''s, I could not say, but I just think there are some things that get overdiagnosed...

Yeah, I see what you''re saying, but I''d never heard of it before I found that site. And I never heard of it again, until now, here. So it may be getting thrown at a lot of people, but not around here, where I live.

And, it won''t really matter what I find out about it anyway, because at the moment, while he knows he''s different and very unhappy, he doesn''t want to do anything about it.

 

[diamondseeker2006]

Maisie, I am praying for your little one, too! And that is a lovely picture of your husband and son! I am a special ed. teacher so I also wotk with children with special needs. And I have children with some various issues, so I can well understand how you''re feeling.

I find it interesting how many people here have children with these symptoms.

 

[Ellen]

Date: 2/3/2007 6:46:58 PM
Author: diamondseeker2006

I find it interesting how many people here have children with these symptoms.

I do too ds. And I''ve wondered more than once if vaccinations have anything to do with it...

 

[lumpkin]

Date: 2/3/2007 6:28:40 PM
Author: diamondfan
Ellen, that is my point. And it may be Asperger''s, I could not say, but I just think there are some things that get overdiagnosed...

I hesitate to post this and I''ve rewritten it several times because I know this is a seriously sensitive issue for me. I don''t want to offend you, but I sorta feel prickly when people say this. I know it''s true, but you have to be careful of saying that as well. I know people whose kids clearly have issues that they refuse to address for pride, or ignorance or just not wanting to face a difficult issue. I don''t want to be defensive about this, but I live it 24/7, and again, no offense, but you don''t know my kids. I do. Maybe you don''t mean it to sound that way, but it FEELs to ME that you are being dismissive, and it pushes a sensitive button for me. It conjures up all kinds of feelings of anger, defensiveness, and bewilderment when someone infers that all this is in the parents'' and teachers'' heads, that if everyone were doing their jobs adequately, these problems would not exist (I know you haven''t said this, but other''s have -- maybe I''m being oversensitive). I see other parents able to easily take their kids to they symphony or the science center, to the movies, to restaurants, and we''ve had to work very hard to get there, to be able to do those things that are normally can be done I''ve had to work very hard to desensitize my younger child to do because he couldn''t stand to use a public restroom or handle unexpected noises, or crowds, and a myriad of other things that just are not normal. And to have a child who doesn''t sleep more than 2-3 hours a day, can''t focus long enough to get through a 10 minute meal, get dressed, follow simple instructions and then finally have them on a medication that makes those things possible...you just have no idea if you''ve never lived it. The fact that it''s being diagnosed more doesn''t necessarily mean it a fad. There really does seem to be an increase and if that''s the case we''d better be figuring out why (IMHO). I hope I''m articulating this the way I want it to come out. It''s very frustrating to have children on the spectrum and have other people say things like, "Well, they aren''t that affected then. I think you just need to use ''Positive Parenting'' (or something else that of course I''ve already read and tried) -- there''s a class coming up, bla bla bla." It''s infuriating how people think they are entitled to an explanation for our kids'' odd behavior, then when we give them the explanation they don''t believe it. Anyway, sorry for the rant, Diamondfan. You probably didn''t mean this the way I took it....

 

[lumpkin]

Ellen, I wondered if it was the vaccines, too. My husband actually had to do a paper for one of his college classes a few years ago, and he chose the subject of vaccines. There just isn''t enough evidence out there that that''s the culprit. There are so many things that could be the trigger -- allergies to food additives, the plastic we store everything in, vaccines, or a combination of other things. It does boggle the mind.

As for us, my husband''s father was very hyperactive as a child, according to his mother (as per my MIL). I think they are genetic traits and my husband and I are both quirky. So when we had kids I think those genes were combined, and perhaps what were recessive genes came together from both parents....It''s obviously just a theory.

 

[lumpkin]

Date: 2/3/2007 5:51:27 PM
Author: diamondfan
I think some of these things were just looked upon as eccentricities or deficits socially years ago. No one could say Bill Gates has not done well in life, but in person he might be tough to engage unless you talked about the subject of interest to him. You might have thought of someone who did not interact well but was bright and successful as maybe being a social phobic, a loner, someone who is super smart and talented but not into socializing and is better off working in a solitary setting. It seems to be there is so much almost over diagnosis of this stuff...not that it is not prevalent and needing to be addressed, but it just seems they throw out PSS NOS and Asperger''s around so much, a psychiatrist I know who has done 30 year long studies of kids from infancy through adulthood, where they were followed weekly and then monthly for decades says it is something he worries about. My son who is 5, I had a very green pre school teacher tell me he was austistic, which he wasn''t, I went to neurologists and specialists immediately, but he IS a bit quirky for lack of a more scientific term...he is loving, sweet, silly, bright, engaging, affectionate, and he is his own little self, not in the cookie cutter mold, but who is? We all have things that make us unique, and when we start diagnosing these things too much it can be bad. This was a trend with ADD and ADHD too years ago. Every kid practically was labled it by educators. Again, of course there are kids with ADD, ADHD, PDD NOS, Asperger''s, etc...and they need treatment and early intervention, but there seem to be waves of this stuff in vogue at various times, and it can really scare people and worry them unnecessarily...

I''m sure Bill Gates might not be someone you would necessarily enjoy conversing with -- you''re probably right that if he does indeed have Asperger''s, he is far more concerned with his own interests than other people''s. But, he has contributed to society -- very well -- and having Asperger''s does not mean you can''t live a very full life.

I can see where you would think this is all over diagnosed in your situation. I had the opposite -- family members saying I was borrowing trouble and seeing problems that didn''t exist and I was grateful for my older son''s preschool teacher saying she thought he should be evaluated. I think as parents we just need to be very vigilant -- we are our children''s advocates and it''s up to us to make the decisions as to who we believe regarding our own children.

I''m way too wound up on this issue. We''re waaaaaaaaaay off topic from the original post and I''m too sensitive about this. I''m going to bow out of this conversation for awhile until I can be a little more objective.

 

[Ellen]

Lumpkin, I''ll wait to respond. I''m going to ask Irina if she can move all these posts to my thread once I start it.

And I understand.

 

[diamondfan]

Lumpkin, I mean no offense. I have a master''s in psychology and my only point was, along the lines of yours, that we need to be advocates for our kids, and not either ignore the obvious or rush to fit a kid into a diagnostic area. I have a son with Tourettes and OCD so please know I am well aware of issues and saw it for a long time. I have a friend who has a daughter with Angelman''s who was told that she was too neurotic and go home and have a glass of wine, there was nothing wrong with her child. So my only point is, get second opinions. There are wonderful doctors and educators who are on the ball, but there are people who are not...so just to know.

 

[lumpkin]

Date: 2/3/2007 8:25:52 PM
Author: diamondfan
Lumpkin, I mean no offense. I have a master''s in psychology and my only point was, along the lines of yours, that we need to be advocates for our kids, and not either ignore the obvious or rush to fit a kid into a diagnostic area. I have a son with Tourettes and OCD so please know I am well aware of issues and saw it for a long time. I have a friend who has a daughter with Angelman''s who was told that she was too neurotic and go home and have a glass of wine, there was nothing wrong with her child. So my only point is, get second opinions. There are wonderful doctors and educators who are on the ball, but there are people who are not...so just to know.

I feel much better knowing that, Diamondfan. As for getting second opinions, YES! And third ones if necessary. My older son''s first psychiatrist had him on a medication that made him have horrible, violent mood swings. His answer to that was that he was just coming off of the medication and we just needed to add more. We suffered with that ignorant man for a year before I decided we needed to see a psychologist, who pointed me to a different psychiatrist who put him on a different medication (and a much better result) and diagnosed Asperger''s and gave us a new avenue for discipline and relating to him. I wonder how many parents with ADHD kids think their kids just don''t respond to meds or aren''t ADHD because of this type of experience. Second opinions, and third opinions are key, and if what your doctor is telling you seems very wrong, find another doctor.

Okay, so much for bowing out, LOL!

 

[Ann]

I''ve been concerned about childhood vaccines for years. My now 22 yr. old daughter was diagnosed with Atrophoderma of Pasini and Pierini when she was 17. It''s a form of Morphea which affects the skin. At around 9 years old, we noticed bruising on her spine. She is very pale and thin, so we didn''t think much of it. The bruises (!) then started appearing on her arms, again we just thought it was a bruise. But they never go away. Finally after 3 doctors, we got the answer. There is nothing you can do for it. She now has what appears as bruises on her back, arms and legs. Thank God it has not affected her beautiful face.
The disease is rare and little is known about it. But I do wonder if her childhood immunizations had anything to do with this.
One never knows.

 

[diamondfan]

My son was seeing a psychiatrist who did more harm than good. She put him, at 11, on Paxil, right before sleep away camp. We repeatedly questioned the validity of starting a medication when he would be away 8 weeks and she poo poo'ed our concerns. My son, who has always been thin, gained a bunch of weight, was sluggish and extremely down, and at camp he would go to his bunk and sleep all day. When we started reading that kids under 18 should NOT take it, and that it increased the risk of suicide in kids who were depressed, we were scared, even though depression was not one of his issues. I would have to practically force her to listen, she was so out of touch, and I finally told my husband we had to terminate with her, because she was worse than having no one. He is in treatment now a couple times a week because puberty is a rough time with some of these elements added in. He is on two different medications, not Paxil any longer, and is doing really well, but it has been a long road since 4th grade, it has now been 4 years. It makes it hard on me, my husband, our two other kids, but it is what it is and we all do our best. I do not equate I.Q. or ability with a lot of these disorders, there are so many bright and incredible kids with various syndromes, which is why I said prior that with the proper effective help, a lot of things are not as problematic as we might initially think. And, that I get angry when clinicians miss the boat by not diagnosing things, or scare people with all the stuff they say, and the kid does not get what is needed. I would not trade my son for the world, or change him, though I am unhappy when he suffers or feels badly or different, but he is a super talented musician, a great runner, gifted in a lot of creative and wonderful ways...just a great kid all around. As a parent, one never wants things to be less than perfect, but I have come to see that there is no fixed definition of perfect or one way to be, there are so many variations, and as parents we just need to help our kids as much as possible!

PS, I am sorry for your pain too. A teacher in my son's school has a daughter with sensory integration problems and tourettes and could not stand to have tags in her clothes or brush her hair, she could not make friends and really struggled. It makes life so tough. I wish there was better confluence between incorrect diagnoses and parents who refuse to see the truth and help their child with anything that is not right. Kids depend on us to fight for them, and get them what they need and protect them from things that will harm them...we need to trust our guts as parents. Just because a doctor says it does not mean it is the gospel. I hate when something is clinically wrong and as parents we are condescended to. My friend with the daughter with Angelman's, her daughter is profoundly handicapped, cannot ever be unsupervised, has the mentality and temperament of a toddler in a teen's body...she would tell the doctors years ago that she knew her daughter was not right, was not reaching milestones at all and was not reacting as her older child did, not even a little, and they literally told her she was nuts and to drop it...told her husband he needed to get her to calm down. Of course she was right, and she just kept on the path til the diagnosis came and they could get her the proper support. That is an extreme case, but she is mad about it to this day, many years later...

 

[lumpkin]

Date: 2/3/2007 8:41:37 PM
Author: Ann
I''ve been concerned about childhood vaccines for years. My now 22 yr. old daughter was diagnosed with Atrophoderma of Pasini and Pierini when she was 17. It''s a form of Morphea which affects the skin. At around 9 years old, we noticed bruising on her spine. She is very pale and thin, so we didn''t think much of it. The bruises (!) then started appearing on her arms, again we just thought it was a bruise. But they never go away. Finally after 3 doctors, we got the answer. There is nothing you can do for it. She now has what appears as bruises on her back, arms and legs. Thank God it has not affected her beautiful face.
The disease is rare and little is known about it. But I do wonder if her childhood immunizations had anything to do with this.
One never knows.

Yes, Ann, thank goodness it hasn''t affected her face. I''m sure you are glad to have the diagnosis so you have an idea about what''s going on, but also frustration at not being able to treat it. Has it gotten any better?

 

[lumpkin]

Date: 2/4/2007 12:54:27 AM
Author: diamondfan
My son was seeing a psychiatrist who did more harm than good. She put him, at 11, on Paxil, right before sleep away camp. We repeatedly questioned the validity of starting a medication when he would be away 8 weeks and she poo poo''ed our concerns. My son, who has always been thin, gained a bunch of weight, was sluggish and extremely down, and at camp he would go to his bunk and sleep all day. When we started reading that kids under 18 should NOT take it, and that it increased the risk of suicide in kids who were depressed, we were scared, even though depression was not one of his issues. I would have to practically force her to listen, she was so out of touch, and I finally told my husband we had to terminate with her, because she was worse than having no one. He is in treatment now a couple times a week because puberty is a rough time with some of these elements added in. He is on two different medications, not Paxil any longer, and is doing really well, but it has been a long road since 4th grade, it has now been 4 years. It makes it hard on me, my husband, our two other kids, but it is what it is and we all do our best. I do not equate I.Q. or ability with a lot of these disorders, there are so many bright and incredible kids with various syndromes, which is why I said prior that with the proper effective help, a lot of things are not as problematic as we might initially think. And, that I get angry when clinicians miss the boat by not diagnosing things, or scare people with all the stuff they say, and the kid does not get what is needed. I would not trade my son for the world, or change him, though I am unhappy when he suffers or feels badly or different, but he is a super talented musician, a great runner, gifted in a lot of creative and wonderful ways...just a great kid all around. As a parent, one never wants things to be less than perfect, but I have come to see that there is no fixed definition of perfect or one way to be, there are so many variations, and as parents we just need to help our kids as much as possible!

PS, I am sorry for your pain too. A teacher in my son''s school has a daughter with sensory integration problems and tourettes and could not stand to have tags in her clothes or brush her hair, she could not make friends and really struggled. It makes life so tough. I wish there was better confluence between incorrect diagnoses and parents who refuse to see the truth and help their child with anything that is not right. Kids depend on us to fight for them, and get them what they need and protect them from things that will harm them...we need to trust our guts as parents. Just because a doctor says it does not mean it is the gospel. I hate when something is clinically wrong and as parents we are condescended to. My friend with the daughter with Angelman''s, her daughter is profoundly handicapped, cannot ever be unsupervised, has the mentality and temperament of a toddler in a teen''s body...she would tell the doctors years ago that she knew her daughter was not right, was not reaching milestones at all and was not reacting as her older child did, not even a little, and they literally told her she was nuts and to drop it...told her husband he needed to get her to calm down. Of course she was right, and she just kept on the path til the diagnosis came and they could get her the proper support. That is an extreme case, but she is mad about it to this day, many years later...

I am a horrible patient from a doctor''s perspective. I research and question and I never accept what the doctor says at face value. But you know, you have to be that way. You have to be proactive regarding your own and your kids'' health because the doctor only gets 15-20 minutes to make assessments (or 1/2 to 1 hour for a therapist). You''re with your kids all the time.

It is interesting to me that with a master''s in psychology your psychiatrist poo pooed your concerns. I thought mine did that because I don''t have a lot of degrees and I''m more or less a stay at home mom. I guess a certain amount of condescention is universal then. I actually had a doctor say to me, "And where is your degree from????" That was our last visit with that ***hole. Any doctor who cannot have an open discussion about my children''s health is not the doctor for us.

Your son''s first psychiatrist was a complete idiot. Who starts a kid out on a new medication when the parents are not even going to be present to observe how it''s working? Geesh! And you are kind of afraid not to follow the doctor''s recommendations because then they can come back and say you should have (although I''m a lot less worried about that at this stage in the game, as you probably are, too.).

I can very much relate to your friend''s experience with her doctors, although Angelman''s is (in my mind) much worse than being on the high functioning end of the autism spectrum. I know that my kids will be able to function in society and I really don''t worry about what will happen to them when I''m gone (other than, will there be jobs? will there still be a planet??? -- the same concerns everyone has). Your friend, I''m sure, is wondering what kind of arrangements she will be able to make for her daughter''s care. Those stories break my heart, and as a parent I can''t imagine anything worse, even than having a child die before the parent. I''m sure she IS still angry at the way the doctors dismissed her concerns. It makes my blood boil when a doctor doesn''t listen to me! Well.....now I just find someone else. When my kids were little I was more easily intimidated, for lack of a better word, because I was a new parent and figured that they see tons of kids. Now I don''t put up with any form of condescention or head patting. And if a doctor told my husband to calm me down....I''d probably find out which organization to report the doctor to. But I wouldn''t have done anything like that as a new parent, and I think SOME doctors take advantage of that.

 

[diamondfan]

I think a lot of times there is the view if you are a stay at home mom that you are not tuned in or knowledgeable. But like in any field, there are good and bad practitioners, and you have to pay close attention so you CAN question things and really make noise if you think something is up. Our first psychiatrist was really awful, just did not listen to me or hear me at all, I finally made my husband intervene and get really tough on her because she ignored me. I would want to spit on the doctor that said that! What a jerkoff...My favorite pediatrician, when I lived in L.A. said, Yes, I went to medical school but you are the mom and you know you child. If you have concerns or think something is not okay, call. I will let you know ultimately if you have to be concerned, but do not assume you do not know something...that advice really helped me. Yes, Angelsman is terrible, it is profound and severe, she will need care all of her life in an institution, my friend could no longer have her in the house with home care, it was so hard on her other kids and the girl got too big and strong to be assisted safely. But I just could not believe the way the doctor''s totally ignored her concerns. In the end, it did not change her outcome, and there was nothing that really could be done, meaning she will always have this and unlike tourettes or add or pdd nos, there are not steps one can take or things one can do to help the child. They can only keep her safe and cared for, she will never be functional or on her own. I saw a show about Tourette''s and some of the children were tic''ing so severly...my son does it less so, and you really have to look for it, I know it because I know him so well. My friend is a psychiatrist, had been for 25 years, and sees my son all the time since he and her son are best friends. The first time I told her, because he was sleeping over and needed to take his meds, she was pretty surprised, now she said she does see it a bit, she knows what to look for now, but it never really jumped out at her before. A lot pf times, kids with tourettes really work hard to control things in school, and then come home and fall apart because they are exhausted with the efforts of holding it together all day. The hardest thing for me is to know HE thinks he is a freak and a weirdo and that people are all teasing him and making fun of him...but in truth, he is popular and I tried to tell him that one never knows what goes on within each person. I know many kids in his grade and school have issues, be they mild to severe, and it is easy as a kid to think you are the only one who is different (in a bad way, not a good way) and that you stand out because of traits or issues that you have, when in truth a lot of kids have problems and troubles, and as they grow up, they hopefully learn to be less judgemental and more tolerant. But, adolescence is tough to navigate, and even though I try to tell him all the positives, when he looks in the mirror now that stuff is not what he sees first...

 

[Ann]

Date: 2/4/2007 10:38:37 AM
Author: lumpkin

Date: 2/3/2007 8:41:37 PM
Author: Ann
I''ve been concerned about childhood vaccines for years. My now 22 yr. old daughter was diagnosed with Atrophoderma of Pasini and Pierini when she was 17. It''s a form of Morphea which affects the skin. At around 9 years old, we noticed bruising on her spine. She is very pale and thin, so we didn''t think much of it. The bruises (!) then started appearing on her arms, again we just thought it was a bruise. But they never go away. Finally after 3 doctors, we got the answer. There is nothing you can do for it. She now has what appears as bruises on her back, arms and legs. Thank God it has not affected her beautiful face.
The disease is rare and little is known about it. But I do wonder if her childhood immunizations had anything to do with this.
One never knows.

Yes, Ann, thank goodness it hasn''t affected her face. I''m sure you are glad to have the diagnosis so you have an idea about what''s going on, but also frustration at not being able to treat it. Has it gotten any better?

Lumpkin,

The plagues have progressed to her ankles. They start out looking identical to a bruise, about the size of dime to a quarter.
Then they fade a little to a purple/brown and stay that way. Some research indicates it plays out over years, but we haven''t noticed that. It has worked itself down to her ankles, so really, where else can it go. It is related to autoimmune disorders, so I am worried about a host of conditions that could manifest from this.