new to group

[Guest guest]

after spending the last 48 hours ready anything and everything i can

find on i discussed this with my husband and we see it as the

best choice but we are scared to death.....thank you for responding

> Hi, my names im 27 years old married with 3 kids

9,5,1 my 5

> year old is the reason I joined this group after 6 months of sudden

> unexplained fevers and mouth sores last from 7 to 15 days each

month

> I was told it was strep, I was told it was hand foot and mouth, I

was

> told it was viral and it go away what finally got the attention of

> doctors was that this month we are on our second cycle of the same

> symptoms on march 6th day 5 of the last cycle we ended up in the ER

> due to a fever of 105.3 that last 24 hours no Tylenol or Motrin

could

> break it she had a rash over her body that look the same as strep

> they tester her but it was negative the gave her penicillin and a

> dose of some medicine right before we left it was late and all I

> remember was the nurse saying it would help with the severe mouth

> ulcers i cant recall the name and the cant find it in the report

from

> the ER but when we got home at 2am I gave her a dose of antibiotics

> and we went to bed when we got up at 8am she was better like

nothing

> was ever wrong from the 7th to the 24th she was healthy as can be

> then the morning of the 24th she complained about her mouth sores

> starting again so I took her in on the 26th to see her pediatrician

> as we waited for the doctor she started to get the chills and the

> nurse took her temp saying that it was 100.5 when we got into to

see

> the doctor after descussing all my concerns she told me that she

was

> sure it was syndrome they took blood and urine. I spent hours

> last night on the net trying to figure out whats going on with her

> and my friend and neighbor found this group.....well thats us in a

> nut shell any question or help i can get would be great....THANK

> YOU!!!!

>

>

>

>

>

>

>

[Guest guest]

after spending the last 48 hours ready anything and everything i can

find on i discussed this with my husband and we see it as the

best choice but we are scared to death.....thank you for responding

> Hi, my names im 27 years old married with 3 kids

9,5,1 my 5

> year old is the reason I joined this group after 6 months of sudden

> unexplained fevers and mouth sores last from 7 to 15 days each

month

> I was told it was strep, I was told it was hand foot and mouth, I

was

> told it was viral and it go away what finally got the attention of

> doctors was that this month we are on our second cycle of the same

> symptoms on march 6th day 5 of the last cycle we ended up in the ER

> due to a fever of 105.3 that last 24 hours no Tylenol or Motrin

could

> break it she had a rash over her body that look the same as strep

> they tester her but it was negative the gave her penicillin and a

> dose of some medicine right before we left it was late and all I

> remember was the nurse saying it would help with the severe mouth

> ulcers i cant recall the name and the cant find it in the report

from

> the ER but when we got home at 2am I gave her a dose of antibiotics

> and we went to bed when we got up at 8am she was better like

nothing

> was ever wrong from the 7th to the 24th she was healthy as can be

> then the morning of the 24th she complained about her mouth sores

> starting again so I took her in on the 26th to see her pediatrician

> as we waited for the doctor she started to get the chills and the

> nurse took her temp saying that it was 100.5 when we got into to

see

> the doctor after descussing all my concerns she told me that she

was

> sure it was syndrome they took blood and urine. I spent hours

> last night on the net trying to figure out whats going on with her

> and my friend and neighbor found this group.....well thats us in a

> nut shell any question or help i can get would be great....THANK

> YOU!!!!

>

>

>

>

>

>

>

[Guest guest]

The degree of my daughter's symptoms are very similar to your son's, and are

even getting milder over time. I also went through the monthly strep tests

before I got a tentative diagnosis from a Los Angeles pediatrican.

I still control the fevers with Tylenol and Motrin. I still don't have a

diagnosis because I'm having a hard time convincing myself to put her through

all those tests.

As you read the posts, you'll see a lot of variation between the children's

symptoms.

Mirth

---- kpreveaux <kpreveaux@...> wrote:

> Hello! I am new to the group. After reading a couple of days worth

> of messages, I hope our pediatrician has my son's diagnoses

> correct. My 2 year old son, Conyers, has been fevering on a 4 to 5

> week cycle since last May. I would always take him in, the doctor

> would run a strep test, and it always come back negative and a

> response of it is a virus. The highest temp. for Conyers was 105.3

> in the fall. His temp usually stayed around 102 or 103. Like

> always, 4 to 6 days later, he was fine. After our last episode, I

> knew something was wrong, called the doctor and cried. I knew it

> wasn't viral because my 2 year old daughter never got whatever he

> had and they share everything. Our pediatrician charted all our

> many visits in the past year and came up with the diagnoses of

> . He said he had seen some patients with it over the years.

> He prescribed prednisone to take for 1 day. Within 30 minutes,

> Conyers 103 fever was gone!!! I couldn't believe it!!! That was 2

> weeks ago. He now takes 1/2 teaspoon of cimetidine twice a day. So

> now it is just a waiting game for us. When will the next episode

> be? Will the medication work for us? Did the doctor disgnose him

> correctly? Conyers' syptoms seem to be a lot less severe then many

> of your children. It seems like a lot of you saw a lot of doctors

> before they mentioned . I just don't know if we need to see

> anymore doctors!! I would love to know your thoughts and if there

> is anyone in the Birmingham, Alabama area.

>

[Guest guest]

I am pretty much in the same boat as you. It sounds like the same

situation we are in. My other child NEVER gets the fevers

or " viruses " that he's had every month. Steriods also bring down the

fevers within hours, even if the next day is a sleepy and grumpy

day! So I find myself wondering if we need to see any other docs, or

if we should just stick it out with the one we've got, whose

diagnosed him with and who also had other experiences with it

through med school.

We're lucky to have such a good doc. Our doc does a lot of research

on his own and often calls me on his days off and asks me questions

about Zak.

Zak also has had other health issues including epilepsy, which the

fevers can trigger severe seizures! Zak also has had a lot of siuns

issues as well as reflux and failure to thrive due to it. Now he is

a healthy and energentic young man that gets high fevers every month

with an occational trip to the ER via ambluance for a status seizure

(those aren't fun!). Other than that, he's a normal little kid!

It seems like my kid already has so many specialists (gastro, neuro,

ENT, immunologist) that he just doesn't need any more. Maybe I am

just tired of dealing with healthy issues!

Suggestions on pursuing another doc would be great! If I should or

not.

Good luck!

Jolie

Zakry-2.10, probable , epilepsy, GERD

-5.7, asthma and allergies to EVERYTHING!

>

> Hello! I am new to the group. After reading a couple of days

worth

> of messages, I hope our pediatrician has my son's diagnoses

> correct. My 2 year old son, Conyers, has been fevering on a 4 to 5

> week cycle since last May. I would always take him in, the doctor

> would run a strep test, and it always come back negative and a

> response of it is a virus. The highest temp. for Conyers was 105.3

> in the fall. His temp usually stayed around 102 or 103. Like

> always, 4 to 6 days later, he was fine. After our last episode, I

> knew something was wrong, called the doctor and cried. I knew it

> wasn't viral because my 2 year old daughter never got whatever he

> had and they share everything. Our pediatrician charted all our

> many visits in the past year and came up with the diagnoses of

> . He said he had seen some patients with it over the years.

> He prescribed prednisone to take for 1 day. Within 30 minutes,

> Conyers 103 fever was gone!!! I couldn't believe it!!! That was 2

> weeks ago. He now takes 1/2 teaspoon of cimetidine twice a day.

So

> now it is just a waiting game for us. When will the next episode

> be? Will the medication work for us? Did the doctor disgnose him

> correctly? Conyers' syptoms seem to be a lot less severe then many

> of your children. It seems like a lot of you saw a lot of doctors

> before they mentioned . I just don't know if we need to see

> anymore doctors!! I would love to know your thoughts and if there

> is anyone in the Birmingham, Alabama area.

>

[Guest guest]

Pattie:

I am responding to you with personal emotion because I have

experience with both brain tumors and aspergers/high functioning

autism. Also, I am a single mom.

My mother died 6.5 years ago of a glioblastoma multiforme IV. I was

32. My son, now 4, has high functioning autism.

I feel confident in saying that I don't see how a 15 year old,

typical or atypical could understand that their mother is dying. It

is not " understandable " . I was an adult when my mother died and still

don't always understand it.

While my child is young and not to this boy's age level, from what I

understand about this syndrome, emotion and social interaction, is

very difficult to comprehend. I am guessing, based on my experience,

that there is a lot more emotion and social happenings going on in

his household and family than he is used to and this may be difficult

for him to handle.

Can you give him a safe place to escape from the goings on? Does he

have an interest that he can use to " help " with his Mom. Even if it

is searching on the computer for something she would like to know

about. Even a daily joke or reading of some sort.

It would be wonderful if they could find healing and joy in each

other at this time. I am sure this sounds difficult, but try to help

each of them focus on what brings them both together and happy.

Also, he really needs some help with what to expect for the future. I

don't know if they exist out there but there are things

called " social stories " that are used to explain social situations.

Perhaps one will relate to this situation. And to him.

Also, take pictures of them together.

I doubt that he even realizes that he is being " disobedient " . Or

causing her stress as you put it.

You are a good friend to help your friend and her child. My child is

my one and only and the true meaning of my life. I am sure she feels

the same about him.

My best, Terri

>

> I wanted to join this group because I have a very special friend

who has a brain tumor which is inoperable. She is a single mom and

has a 15 year old son diagnosed with aspergers. My daughter and I

need all the information we can get to help her with him at this

stressful time in her life.

>

> He understands his mom has cancer and could die before he gets

through high school. He understands when we're talking with him that

he needs to help her and not stress her out more by leaving the house

and disappearing for hours at a time but he still does it. I've read

that his disobedience is part of the syndrome.

>

> My immediate need is for any suggestions on how to talk with

him. It is impossible for his mom to follow through with grounding

as a punishment for his misbehavior since she has to work full time

for as long as she can. He will just leave the house before she gets

home.

>

> Thanks ... Pattie

>

>

> ---------------------------------

> Don't be flakey. Get for Mobile and

> always stay connected to friends.

>

[Guest guest]

I had a brain tumor out in 2005. Maybe there is some link between tumors and hf autismtwteitel1 <TTEITEL1@...> wrote: Pattie:I am responding to you with personal emotion because I have experience with both brain tumors and aspergers/high functioning autism. Also, I am a single mom.My mother died 6.5 years ago of a glioblastoma multiforme IV. I was 32. My son, now 4, has high functioning autism. I feel confident in saying that I don't see how a 15 year old, typical or atypical

could understand that their mother is dying. It is not "understandable". I was an adult when my mother died and still don't always understand it. While my child is young and not to this boy's age level, from what I understand about this syndrome, emotion and social interaction, is very difficult to comprehend. I am guessing, based on my experience, that there is a lot more emotion and social happenings going on in his household and family than he is used to and this may be difficult for him to handle. Can you give him a safe place to escape from the goings on? Does he have an interest that he can use to "help" with his Mom. Even if it is searching on the computer for something she would like to know about. Even a daily joke or reading of some sort.It would be wonderful if they could find healing and joy in each other at this time. I am sure this sounds difficult, but try to help each of them focus

on what brings them both together and happy.Also, he really needs some help with what to expect for the future. I don't know if they exist out there but there are things called "social stories" that are used to explain social situations. Perhaps one will relate to this situation. And to him. Also, take pictures of them together. I doubt that he even realizes that he is being "disobedient". Or causing her stress as you put it. You are a good friend to help your friend and her child. My child is my one and only and the true meaning of my life. I am sure she feels the same about him.My best, Terri >> I wanted to join this group because I have a very special friend who has a brain tumor which is inoperable. She is a single mom

and has a 15 year old son diagnosed with aspergers. My daughter and I need all the information we can get to help her with him at this stressful time in her life.> > He understands his mom has cancer and could die before he gets through high school. He understands when we're talking with him that he needs to help her and not stress her out more by leaving the house and disappearing for hours at a time but he still does it. I've read that his disobedience is part of the syndrome. > > My immediate need is for any suggestions on how to talk with him. It is impossible for his mom to follow through with grounding as a punishment for his misbehavior since she has to work full time for as long as she can. He will just leave the house before she gets home.> > Thanks ... Pattie> > > ---------------------------------> Don't be flakey. Get for

Mobile and > always stay connected to friends.>

It's here! Your new message!Get

new email alerts with the free Toolbar.

[Guest guest]

Pattie,Where will this child go when his mom is gone? Has this been arranged - if so,the person who will be his primary caregiver "should" be primary and walking everyone through this.As far as disobedience being part of the Aspie disorder - well - not really. I mean I guess it depends on the kid. My 15 year old Aspie has taught me to see the very many shades of gray in life (I have always been a "purist" - well that is what I would have called it an eon ago... ). I would be happy to talk to you off list any time...I haven't been reading many of the messages, due to time constraints - I am trying to get extra hours at work, and thinking about starting to do freelance web work again as my dh retired 2/28 and hasn't yet found work.you can email me at diegowench@...or jenniferkornegay@...JenMom to four special kidstwteitel1 <TTEITEL1@...>

wrote: Pattie: I am responding to you with personal emotion because I have experience with both brain tumors and aspergers/high functioning autism. Also, I am a single mom. My mother died 6.5 years ago of a glioblastoma multiforme IV. I was 32. My son, now 4, has high functioning autism. I feel confident in saying that I don't see how a 15 year old, typical or atypical could understand that their mother is dying. It is not "understandable". I was an adult when my mother died and still don't always

understand it. While my child is young and not to this boy's age level, from what I understand about this syndrome, emotion and social interaction, is very difficult to comprehend. I am guessing, based on my experience, that there is a lot more emotion and social happenings going on in his household and family than he is used to and this may be difficult for him to handle. Can you give him a safe place to escape from the goings on? Does he have an interest that he can use to "help" with his Mom. Even if it is searching on the computer for something she would like to know about. Even a daily joke or reading of some sort. It would be wonderful if they could find healing and joy in each other at this time. I am sure this sounds difficult, but try to help each of them focus on what brings them both together and happy. Also, he really needs some help with what to expect for the future. I

don't know if they exist out there but there are things called "social stories" that are used to explain social situations. Perhaps one will relate to this situation. And to him. Also, take pictures of them together. I doubt that he even realizes that he is being "disobedient". Or causing her stress as you put it. You are a good friend to help your friend and her child. My child is my one and only and the true meaning of my life. I am sure she feels the same about him. My best, Terri > > I wanted to join this group because I have a very special friend who has a brain tumor which is inoperable. She is a single mom and has a 15 year old son diagnosed with aspergers. My daughter and I need all the

information we can get to help her with him at this stressful time in her life. > > He understands his mom has cancer and could die before he gets through high school. He understands when we're talking with him that he needs to help her and not stress her out more by leaving the house and disappearing for hours at a time but he still does it. I've read that his disobedience is part of the syndrome. > > My immediate need is for any suggestions on how to talk with him. It is impossible for his mom to follow through with grounding as a punishment for his misbehavior since she has to work full time for as long as she can. He will just leave the house before she gets home. > > Thanks ... Pattie > > > --------------------------------- > Don't be flakey. Get for Mobile and > always stay connected to

friends. >

Food fight? Enjoy some healthy debatein the Answers Food Drink Q&A.

[Guest guest]

Thank you so much for responding. Like you, I am convinced he doesn't realize he's being disobedient while he's doing it. He wants to leave the house so he leaves the house. My adult daughter spends a lot of time with him and has taken him to her college classes during his spring break these two weeks. He's enjoying 'going to college'. I love your idea of taking pictures of them together and trying to find something they can do with each other. Right now, I don't know of any common interests but I will find out. One of the problems now is that the mom's thinking abilities are slipping. She has other problems as well as the brain tumor. She seems to forget her son has this syndrome which causes him to behave the way he does and is moving more towards thinking he is a 'troubled youth'. She understood it before so we know it's the tumor which is an aggressive, fast growing one. I will put some of your ideas into play immediately. Pattietwteitel1 <TTEITEL1@...> wrote: Pattie:I am responding to you with personal emotion because I have experience with both brain tumors and aspergers/high functioning autism. Also, I am a single mom.My mother died 6.5 years ago of a glioblastoma multiforme IV. I was 32. My son, now 4, has high functioning autism. I feel confident in saying that I don't see how a 15 year old, typical or atypical could understand that their mother is dying. It is not "understandable". I was an adult when my mother died and still don't always understand it. While my child is young and not to this boy's age level, from what I understand about this syndrome, emotion and social

interaction, is very difficult to comprehend. I am guessing, based on my experience, that there is a lot more emotion and social happenings going on in his household and family than he is used to and this may be difficult for him to handle. Can you give him a safe place to escape from the goings on? Does he have an interest that he can use to "help" with his Mom. Even if it is searching on the computer for something she would like to know about. Even a daily joke or reading of some sort.It would be wonderful if they could find healing and joy in each other at this time. I am sure this sounds difficult, but try to help each of them focus on what brings them both together and happy.Also, he really needs some help with what to expect for the future. I don't know if they exist out there but there are things called "social stories" that are used to explain social situations. Perhaps one will relate to this

situation. And to him. Also, take pictures of them together. I doubt that he even realizes that he is being "disobedient". Or causing her stress as you put it. You are a good friend to help your friend and her child. My child is my one and only and the true meaning of my life. I am sure she feels the same about him.My best, Terri >> I wanted to join this group because I have a very special friend who has a brain tumor which is inoperable. She is a single mom and has a 15 year old son diagnosed with aspergers. My daughter and I need all the information we can get to help her with him at this stressful time in her life.> > He understands his mom has cancer and could die before he gets through high school. He understands when we're talking with him that he needs to help her and not stress her

out more by leaving the house and disappearing for hours at a time but he still does it. I've read that his disobedience is part of the syndrome. > > My immediate need is for any suggestions on how to talk with him. It is impossible for his mom to follow through with grounding as a punishment for his misbehavior since she has to work full time for as long as she can. He will just leave the house before she gets home.> > Thanks ... Pattie> > > ---------------------------------> Don't be flakey. Get for Mobile and > always stay connected to friends.>

[Guest guest]

>>I had a brain tumor out in 2005. Maybe there is some link between tumors

>>and hf autism<<

Or maybe there isn't. In any group of this size there are going to be

conjunctions of events/diseases which mean nothing.

in England

[Guest guest]

>>I had a brain tumor out in 2005. Maybe there is some link between tumors

>>and hf autism<<

Or maybe there isn't. In any group of this size there are going to be

conjunctions of events/diseases which mean nothing.

in England

[Guest guest]

Hello and welcome to the group! I am one province over in Sunny Saskatchewan (where a lot of Albertans come from!!)

Your son sounds a lot like mine. was diagnosed with aspergers syndrome when he was in grade 2. No one at the school thought he had any problems because like your son, he held everything together all day at school. When he came home, it was awful! He was always going after his brother, trying to hurt him and saying the most horrible things to him!

It's really terrible that you're not getting the help you need through the school. We are fortunate that our school is doing all they can for and others like him.

One thing that seemed to help is that his teacher keeps the days schedule on the board where he can easily see it. It seems that if he always knows what's coming next, it is easier for him to cope. And if that schedule changes, the teacher lets him know about the change well in advance. Even if it's a good thing that he will love, it makes him crazy to have it "sprung" on him.

It is all the frustrations of the day that make him explode at home and he takes it all out on his brother. By reducing the things that frustrate , he doesn't come home and explode as much. I also think as he gets older he is also able to handle things better.

isn't in a special Ed class and he doesn't have his own aide. But there is an aide in the classroom who keeps an eye on him and in the past she has taken him out of the classroom when she sees him getting overwhelmed.

The school also tries to be accommodating about some of 's "quirks". For example, hates wearing a winter coat. And I'm sure you know how cold it gets here!!! We got together with his teacher and made a chart for showing the temperature and what is appropriate clothing. He doesn't have to wear a winter coat unless the temp drops below a certain point. With these rules in place, he will (grudgingly) wear his coat when needed! And the teachers leave him alone when he comes without a coat when most kids would need one. He checks the forecast every day!

And as far as school work, keeps up with the others quite well. He is given extra time to do tests because sometimes he just can't stay focused on his answers so the extra time is needed to finish.

I guess I've been a bit long-winded but I hope your school will also be accommodating to your son. Most of the things done for are not huge deals, just a few little things that make life much smoother for all concerned.

And we all know, your son is not horrid!! What a good mom he has, someone who will keep trying to find ways to make it better for him! You are not alone!

Estevan, SK

Canada

-- new to group

Hi... I live up in Edmonton, Canada and I have a seven year old son,my youngest of four children, who is diagnosed with PDD. He hassevere anxiety, Obsessive Compulsive Disorder, severe ADHD, SensoryIntegration Disorder and Oppositional Defiance. I started to notice little things when he was a baby but when Ibrought it to the attention of my pediatrician she brushed it off. When he was about 22 months I took him to the public health unit for aspeech and language assessment and the therapist asked me if I wassuspicious of any other concerns with him. I told her yes and all myconcerns and she really listened to me. We managed to fast track himinto the Glenrose Rehab Hospital here for an assessment and wow, was IIn for a wild ride. My husband had recently walked out on us and mysecond youngest child was only 21 months older than my little guy. Iworked full-time nights while my older children babysat and when I gothome I would truck the two little ones off to the Glenrose Hospitalfor 4 hours. This went on for 12 weeks. They first told me he hadautism. I told them I questioned that because his speech was quiteproficient and although he had social issues, he did socialize betterthan I believed an autistic child might. They agreed. They then toldme he had early childhood schizophrenia. I freaked at that and theylater said no he did not have that. They then told me that he hadmany symptoms that fell under multiple diagnosis but not enough of oneor the other to come up with a definitive diagnosis at that time.I was very frustrated. I started to see a child psychiatrist and shewas awesome, got him on meds so he could cope, into programs to dealwith his sensory integration disorders and his poor social skills. It was a struggle and I have to say i am amazed that I survived it butwe did and we overcame many hurdles.He went to kindergarten with an aid and did really well. In grade oneI wanted him to go to the same school as his sister and since it wasnot in my community they did not want him. I had to have him assessedby a child psychologist and they demanded an IQ test. He had taughthimself to read by the time he was four and when tested he came out inthe top 2% for his age group. I was told he was a little genius butnot to let that fool me. I was told many of these kids are veryintellegent but the social areas are what gets them. I fought hardbut the school eventually accepted him but said they would notacknowledge him as special needs.Here in Canada, it seems that if you have a special needs child who isunder six years old, there is a whole world of support there for you.When they hit grade one it seems to all disappear. My son is now ingrade two, he is managing because he is very smart. He is in a normalclass, he is not considered "special needs", and does not get anyspecial attention or assistance. Fortunately he seems to be able tohold himself together at school. When he gets home all hell breaksloose. He has such a temper. He becomes violent. He has hurt me andmy daughter. He breaks things and says terrible things to me. Whenit is over he cries and tells me that he cannot control his temper,that he tries to stop but he can't. He tells me he can't make hismind stop and I can tell it drives him crazy. I always have toreassure him that I will always love him but that I cannot condone hisbehaviour or his hurting others. He can rationalize this when he iscalm but not when he loses it and he loses it very fast. He gets lotsof time outs to calm down and as consequences for his behaviour. Iget to see his psychiatrist once every four or five months and forabout 15 minutes. He does not seem to hear my concerns. He justwrites out prescriptions for meds and says see you in four months. Myheart bleeds for my son. I need to find a way to help him control hisemotions before he loses it. When he is older, he will have reallysevere consequences if he hurts someone or damages property. I don'twant him to have that happen to him. I really feel very alone. No one seems to understand how this childwho can be the sweetest boy on the face of the earth can turn sovicious in 2 seconds flat. They don't understand so they stay awayand I stay to myself.I feel bad even writing this because it makes him sound horrid and heis not. I love him so much and I want so much for him. He really isa wonderful kid and I believe that he really does not have theability to rationalize before he reacts. He just reacts.Sorry this is so long.. I just have had no one to talk to about himso hope you all don't mind. I joined this group because I thought maybe I won't feel like I am theonly one going through this and that there is hope somewhere.Thanks.

[Guest guest]

Thanks for your comments. I have been incredibly lucky because

Zachary has had wonderful teachers thus far. While his school file is

void of information that might help his teachers figure out how to

work with him, I have found that so far, his teachers have sat down

with me, told me what they have seen and what conclusions they have

come to and have worked wonderfully with me to the best of their

ability. I really believe that having a great teacher solves half the

problem.

I am more concerned because of his behaviour at home. He has

threatened me and I am not afraid of him now, because although he can

be a horror one moment, he is a sobbing bundle of dispair the

next. I am more concerned about how to help him gain control before

he gets to an age where he could be a threat to us. I love this child

so much. I have fought so hard to get him where he is and I will

fight until I die if need be.

I just wish I didn't feel so damn guilty for those moments when I just

feel like I can't take it anymore and I just want to run away from home.

I want him to have friends. I want him to be able to learn to ride a

two wheeler. I want him to be able to play sports with other kids and

not worry about him falling apart because he has a meltdown.

He is a computer and video game genius. But he is so lonely. He

wants friends and I can't give him that. He just has not yet learned

the skill of making friends and keeping them. And I hurt for him. I

see major improvements over the years and I hope that will continue.

I have been told though that many of his symptoms have displayed early

and that many of them become worse with puberty. I hope not for his sake.

I can certainly relate to the structure component and the need for

transition time. Zach would not function with out that.

>

> Hello and welcome to the group! I am one province over in Sunny

> Saskatchewan (where a lot of Albertans come from!!)

>

> Your son sounds a lot like mine. was diagnosed with aspergers

> syndrome when he was in grade 2. No one at the school thought he

had any

> problems because like your son, he held everything together all day at

> school. When he came home, it was awful! He was always going after his

> brother, trying to hurt him and saying the most horrible things to him!

>

> It's really terrible that you're not getting the help you need

through the

> school. We are fortunate that our school is doing all they can for

> and others like him.

>

> One thing that seemed to help is that his teacher keeps the days

> schedule on the board where he can easily see it. It seems that if he

> always knows what's coming next, it is easier for him to cope. And

if that

> schedule changes, the teacher lets him know about the change well in

advance

> Even if it's a good thing that he will love, it makes him crazy to

have it

> sprung " on him.

>

> It is all the frustrations of the day that make him explode at home

and he

> takes it all out on his brother. By reducing the things that frustrate

> , he doesn't come home and explode as much. I also think as

he gets

> older he is also able to handle things better.

>

> isn't in a special Ed class and he doesn't have his own aide. But

> there is an aide in the classroom who keeps an eye on him and in the

past

> she has taken him out of the classroom when she sees him getting

overwhelmed

>

>

> The school also tries to be accommodating about some of 's

" quirks " .

> For example, hates wearing a winter coat. And I'm sure you

know how

> cold it gets here!!! We got together with his teacher and made a

chart for

> showing the temperature and what is appropriate clothing. He

doesn't

> have to wear a winter coat unless the temp drops below a certain point.

> With these rules in place, he will (grudgingly) wear his coat when

needed!

> And the teachers leave him alone when he comes without a coat when

most kids

> would need one. He checks the forecast every day!

>

> And as far as school work, keeps up with the others quite

well. He is

> given extra time to do tests because sometimes he just can't stay

focused on

> his answers so the extra time is needed to finish.

>

> I guess I've been a bit long-winded but I hope your school will also be

> accommodating to your son. Most of the things done for are

not huge

> deals, just a few little things that make life much smoother for all

> concerned.

>

> And we all know, your son is not horrid!! What a good mom he has,

someone

> who will keep trying to find ways to make it better for him! You

are not

> alone!

>

>

> Estevan, SK

> Canada

>

> -- new to group

>

> Hi... I live up in Edmonton, Canada and I have a seven year old son,

> my youngest of four children, who is diagnosed with PDD. He has

> severe anxiety, Obsessive Compulsive Disorder, severe ADHD, Sensory

> Integration Disorder and Oppositional Defiance.

> I started to notice little things when he was a baby but when I

> brought it to the attention of my pediatrician she brushed it off.

> When he was about 22 months I took him to the public health unit for a

> speech and language assessment and the therapist asked me if I was

> suspicious of any other concerns with him. I told her yes and all my

> concerns and she really listened to me. We managed to fast track him

> into the Glenrose Rehab Hospital here for an assessment and wow, was I

> In for a wild ride. My husband had recently walked out on us and my

> second youngest child was only 21 months older than my little guy. I

> worked full-time nights while my older children babysat and when I got

> home I would truck the two little ones off to the Glenrose Hospital

> for 4 hours. This went on for 12 weeks. They first told me he had

> autism. I told them I questioned that because his speech was quite

> proficient and although he had social issues, he did socialize better

> than I believed an autistic child might. They agreed. They then told

> me he had early childhood schizophrenia. I freaked at that and they

> later said no he did not have that. They then told me that he had

> many symptoms that fell under multiple diagnosis but not enough of one

> or the other to come up with a definitive diagnosis at that time.

>

> I was very frustrated. I started to see a child psychiatrist and she

> was awesome, got him on meds so he could cope, into programs to deal

> with his sensory integration disorders and his poor social skills.

> It was a struggle and I have to say i am amazed that I survived it but

> we did and we overcame many hurdles.

> He went to kindergarten with an aid and did really well. In grade one

> I wanted him to go to the same school as his sister and since it was

> not in my community they did not want him. I had to have him assessed

> by a child psychologist and they demanded an IQ test. He had taught

> himself to read by the time he was four and when tested he came out in

> the top 2% for his age group. I was told he was a little genius but

> not to let that fool me. I was told many of these kids are very

> intellegent but the social areas are what gets them. I fought hard

> but the school eventually accepted him but said they would not

> acknowledge him as special needs.

> Here in Canada, it seems that if you have a special needs child who is

> under six years old, there is a whole world of support there for you.

> When they hit grade one it seems to all disappear. My son is now in

> grade two, he is managing because he is very smart. He is in a normal

> class, he is not considered " special needs " , and does not get any

> special attention or assistance. Fortunately he seems to be able to

> hold himself together at school. When he gets home all hell breaks

> loose. He has such a temper. He becomes violent. He has hurt me and

> my daughter. He breaks things and says terrible things to me. When

> it is over he cries and tells me that he cannot control his temper,

> that he tries to stop but he can't. He tells me he can't make his

> mind stop and I can tell it drives him crazy. I always have to

> reassure him that I will always love him but that I cannot condone his

> behaviour or his hurting others. He can rationalize this when he is

> calm but not when he loses it and he loses it very fast. He gets lots

> of time outs to calm down and as consequences for his behaviour. I

> get to see his psychiatrist once every four or five months and for

> about 15 minutes. He does not seem to hear my concerns. He just

> writes out prescriptions for meds and says see you in four months. My

> heart bleeds for my son. I need to find a way to help him control his

> emotions before he loses it. When he is older, he will have really

> severe consequences if he hurts someone or damages property. I don't

> want him to have that happen to him.

> I really feel very alone. No one seems to understand how this child

> who can be the sweetest boy on the face of the earth can turn so

> vicious in 2 seconds flat. They don't understand so they stay away

> and I stay to myself.

> I feel bad even writing this because it makes him sound horrid and he

> is not. I love him so much and I want so much for him. He really is

> a wonderful kid and I believe that he really does not have the

> ability to rationalize before he reacts. He just reacts.

> Sorry this is so long.. I just have had no one to talk to about him

> so hope you all don't mind.

> I joined this group because I thought maybe I won't feel like I am the

> only one going through this and that there is hope somewhere.

> Thanks.

>

[Guest guest]

hi welcome I'm new to. my son alfonso who is 13 now his specialist just

decided that he may need to have a mri. but here in California it takes a long

time to get anything done. fonz is on c.c.s for chronically ill children and

everyone has to approve everything. the shuffle you know. when he was born it

seems like i was never able to put him down. half the time he refused to eat

or drink. He was walking at 7 month even potty trained at the age but he

would not even try to say a word. At one he would only say one word sentences.

Still at 5 I could not start him in school. He had no interest in learning

anything. In kindergarten they thought it was his hearing. So in forth grade

he was. Tested. He is dyslexia and some memory loss but his artistic memory is

off the chart. even today when he writes on paper he starts all his writing

at the middle of the page. the teacher will move his hand over to the margin

but he goes write back to the invisible line in the middle of the page. no

one knows why. so i really thing that the brain has a big part in all this but

try to get all the dr. on the same page. Welcome chicks p.s. By the way I

am the worst speller and type just as bad.

**************************************

See what's free at http://www.aol.com.

[Guest guest]

First of all, so sorry to hear about the news from the MRI. My

daughter has had the fevers since she was 6 months old and is now 5

1/2 years old. Her temps have gone up to 106.1 and commonly range

between 105-106 during her episodes. But other than that we have not

had any abnormal developmental delays. That is the only thing that

has kept us confident in hopes it will all turn out fine. She is a

bit bigger overall than her friends. She has always ranged in the 98%

+ in height and weight at her Pediatric well checks. But her growth

scale in normal and her hight and weight are proportinal to each

other. Best wishes finding some comforting answers

>

> Hi,

>

> I just discovered this group yesterday and was anxious to join.

Our son (now 21 months old) was recently diagnosed with at

Denver's Children's Hospital. He started having fevers when he

turned 1. Before that he was very healthy and never even had a

cold. We, like many others, assumed he was catching viruses until

the episode when his fever reached 106.8. It was terrifying and we

were so shocked that the doctors didn't seem too alarmed. He's had

three more episodes since then and his fever always reaches the

105's, sometimes 106. We've given him a single dose of prednisone

the last two times and it did wipe out the fever immediately.

>

> We have other concerns with our son and I'm anxious to see if

others have the same concerns. His head has measured off the charts

since birth, but followed a normal growth curve. It wasn't

concerning until the fevers started and we began to notice

developmental delays. He did not walk until 19 months and he is

still not talking at all (not even " ma ma " ). We had an MRI done and

the results were disappointing. He has some fluid at the front of

his brain, he has a structural abnormality with his cerebellum, and

most significantly he has " white patchy spots " . We are scheduled to

see a pediatric neurologist soon. It seems too coincidental that he

has such high fevers and then " white patchy spots " in his brain. Has

anyone else had an MRI done on their child with ? We're anxious

to find out if anyone else has had similar findings. What about

developmental delays?

>

> I'm anxious to read previous messages and to be a part of this

group. Thank you Fran for starting it!

>

> Carol

> Fort , CO

>

>

>

> __________________________________________________

>

[Guest guest]

walnut creek. where do you live? great chicks

**************************************

See what's free at http://www.aol.com.

[Guest guest]

fonz is home today too. started with no sleep last nite. very

uncomfortmbale . talking and kicking all nite. does anyone elses children talk

walk and

cry in there sleep. thanks chicks

**************************************

See

what's free at http://www.aol.com.

[Guest guest]

Carol,

Your child sounds like he has a Periodic Fever Disorder, however with and

most of the other fever disorders there is no link to the fluid and large

head...

There is ONE disorder called NOMID where the children do have developmental

delays and the head may be bigger than the normal size... this is usually due to

boney growth... if you look in the file section I have some information for

NOMID... and the CIAS1 mutation which may or may not be found in a child with

NOMID.

My son has one of the mutations however he does not have the physical head

changes, nor severe developmental delays. He does have a learning disability

however cognitively he is in the above average to superior range.... he is

though, challenged with reading and writing and organizing his thoughts.

There are specifics for NOMID, like a rash at birth or soon after.... other

indicators too. If this sounds anything like your child please contact me off

the list. Go to the NOMID site and read up on the disorder....

Lastly your child could simply have or one of the other fever disorders

such as HIDS, TRAPS or FMF, and coincidentally have the other issues. I know

there are some very good doctors out in Denver.... I have a friend who is not on

the list any longer that lives out there and she has some good recommendations

IF you need. I will contact her for you.

God Bless

Fran

Fran Bulone RN

Mom to ph 7yr CIAS1 mutation 11/05; Dyspraxia 11/06; Dyslexia 12/06

Waxhaw NC

/

http://www.caringbridge.org/visit/josephbulone

[Guest guest]

Our daughter is 15 months old, isn't walking alone yet, been fevering

since birth and also has other " concerns " . She's 10 weeks post op

from a craniectomy with frontal orbital advancement (suture closed

prematurely and had a flat spot over one eyebrow, head always

measured too small...), was born with a cyst in her adrenal gland and

has Chiari I malformation. Specialists tell us none of her rare

issues are related but we were disappointed when the fevers DID

return after surgery- we'd hoped relieving the pressure inside would

eliminate them... doctors were right! Since surgery, her fevers

are harder- longer and higher, last one reaching 106.4. We're in the

middle of one now and just gave prednisone for the first time last

night. It did stop the fever... I guess now we wait! We've had

several MRI's but they only showed the Chiari I malformation- where

the " tonsils " on the cerebellum are too close to the spinal column.

Drs say many people have this condition without knowing it and not to

worry- we'll follow up with another MRI in 6 months. Our ped isn't

worried about her lack of walking- we've had 8 hospital visits, the

first one lasting over a month- so I think she expects delays but

thinks she'll catch up in the long run.

Welcome to the group! I don't have any answers for others but

sometimes it helps knowing you're not alone!

, mom to Riley, Zack (2.5) and Connor (5)

>

> Hi,

>

> I just discovered this group yesterday and was anxious to join.

Our son (now 21 months old) was recently diagnosed with at

Denver's Children's Hospital. He started having fevers when he

turned 1. Before that he was very healthy and never even had a

cold. We, like many others, assumed he was catching viruses until

the episode when his fever reached 106.8. It was terrifying and we

were so shocked that the doctors didn't seem too alarmed. He's had

three more episodes since then and his fever always reaches the

105's, sometimes 106. We've given him a single dose of prednisone

the last two times and it did wipe out the fever immediately.

>

> We have other concerns with our son and I'm anxious to see if

others have the same concerns. His head has measured off the charts

since birth, but followed a normal growth curve. It wasn't

concerning until the fevers started and we began to notice

developmental delays. He did not walk until 19 months and he is

still not talking at all (not even " ma ma " ). We had an MRI done and

the results were disappointing. He has some fluid at the front of

his brain, he has a structural abnormality with his cerebellum, and

most significantly he has " white patchy spots " . We are scheduled to

see a pediatric neurologist soon. It seems too coincidental that he

has such high fevers and then " white patchy spots " in his brain. Has

anyone else had an MRI done on their child with ? We're anxious

to find out if anyone else has had similar findings. What about

developmental delays?

>

> I'm anxious to read previous messages and to be a part of this

group. Thank you Fran for starting it!

>

> Carol

> Fort , CO

>

>

>

> __________________________________________________

>

[Guest guest]

,

No advice, just know you are in my prayers. Good luck with your daughter,

hang in there.

Azzie, Mom to Kianna, 9 yrs.

p.s. She is now in the midst of her fevers, they are now 4 weeks apart, I am

for sure doing the T & A in June!

From: [mailto: ] On Behalf Of

jmaloney0802

Sent: Thursday, April 26, 2007 10:27 AM

Subject: Re: new to group

Our daughter is 15 months old, isn't walking alone yet, been fevering

since birth and also has other " concerns " . She's 10 weeks post op

from a craniectomy with frontal orbital advancement (suture closed

prematurely and had a flat spot over one eyebrow, head always

measured too small...), was born with a cyst in her adrenal gland and

has Chiari I malformation. Specialists tell us none of her rare

issues are related but we were disappointed when the fevers DID

return after surgery- we'd hoped relieving the pressure inside would

eliminate them... doctors were right! Since surgery, her fevers

are harder- longer and higher, last one reaching 106.4. We're in the

middle of one now and just gave prednisone for the first time last

night. It did stop the fever... I guess now we wait! We've had

several MRI's but they only showed the Chiari I malformation- where

the " tonsils " on the cerebellum are too close to the spinal column.

Drs say many people have this condition without knowing it and not to

worry- we'll follow up with another MRI in 6 months. Our ped isn't

worried about her lack of walking- we've had 8 hospital visits, the

first one lasting over a month- so I think she expects delays but

thinks she'll catch up in the long run.

Welcome to the group! I don't have any answers for others but

sometimes it helps knowing you're not alone!

, mom to Riley, Zack (2.5) and Connor (5)

>

> Hi,

>

> I just discovered this group yesterday and was anxious to join.

Our son (now 21 months old) was recently diagnosed with at

Denver's Children's Hospital. He started having fevers when he

turned 1. Before that he was very healthy and never even had a

cold. We, like many others, assumed he was catching viruses until

the episode when his fever reached 106.8. It was terrifying and we

were so shocked that the doctors didn't seem too alarmed. He's had

three more episodes since then and his fever always reaches the

105's, sometimes 106. We've given him a single dose of prednisone

the last two times and it did wipe out the fever immediately.

>

> We have other concerns with our son and I'm anxious to see if

others have the same concerns. His head has measured off the charts

since birth, but followed a normal growth curve. It wasn't

concerning until the fevers started and we began to notice

developmental delays. He did not walk until 19 months and he is

still not talking at all (not even " ma ma " ). We had an MRI done and

the results were disappointing. He has some fluid at the front of

his brain, he has a structural abnormality with his cerebellum, and

most significantly he has " white patchy spots " . We are scheduled to

see a pediatric neurologist soon. It seems too coincidental that he

has such high fevers and then " white patchy spots " in his brain. Has

anyone else had an MRI done on their child with ? We're anxious

to find out if anyone else has had similar findings. What about

developmental delays?

>

> I'm anxious to read previous messages and to be a part of this

group. Thank you Fran for starting it!

>

> Carol

> Fort , CO

>

>

>

> __________________________________________________

>

[Guest guest]

My son Zakry has had mutliple MRI's due to his epilepsy as well as

other sinus issues. We've been lucky that everything has been

normal so far. Zakry has also been small for his age, but along the

curve except for when his reflux was so bad it stunted his weight

gain for a while.

Welcome to the group! It's good to know you are not alone and other

families have similar situations!

Good Luck,

Jolie

Zak-(2.5) , Epilspy, Reflux, Allergies

-(5.5) Asthma, Allergies

>

> Hi,

>

> I just discovered this group yesterday and was anxious to join.

Our son (now 21 months old) was recently diagnosed with at

Denver's Children's Hospital. He started having fevers when he

turned 1. Before that he was very healthy and never even had a

cold. We, like many others, assumed he was catching viruses until

the episode when his fever reached 106.8. It was terrifying and we

were so shocked that the doctors didn't seem too alarmed. He's had

three more episodes since then and his fever always reaches the

105's, sometimes 106. We've given him a single dose of prednisone

the last two times and it did wipe out the fever immediately.

>

> We have other concerns with our son and I'm anxious to see if

others have the same concerns. His head has measured off the charts

since birth, but followed a normal growth curve. It wasn't

concerning until the fevers started and we began to notice

developmental delays. He did not walk until 19 months and he is

still not talking at all (not even " ma ma " ). We had an MRI done and

the results were disappointing. He has some fluid at the front of

his brain, he has a structural abnormality with his cerebellum, and

most significantly he has " white patchy spots " . We are scheduled to

see a pediatric neurologist soon. It seems too coincidental that he

has such high fevers and then " white patchy spots " in his brain.

Has anyone else had an MRI done on their child with ? We're

anxious to find out if anyone else has had similar findings. What

about developmental delays?

>

> I'm anxious to read previous messages and to be a part of this

group. Thank you Fran for starting it!

>

> Carol

> Fort , CO

>

>

>

> __________________________________________________

>

[Guest guest]

I too live in California, where do you live?

Azzie

From: [mailto: ] On Behalf Of

sheenhicks@...

Sent: Thursday, April 26, 2007 9:34 AM

Subject: Re: new to group

hi welcome I'm new to. my son alfonso who is 13 now his specialist just

decided that he may need to have a mri. but here in California it takes a

long

time to get anything done. fonz is on c.c.s for chronically ill children and

everyone has to approve everything. the shuffle you know. when he was born

it

seems like i was never able to put him down. half the time he refused to eat

or drink. He was walking at 7 month even potty trained at the age but he

would not even try to say a word. At one he would only say one word

sentences.

Still at 5 I could not start him in school. He had no interest in learning

anything. In kindergarten they thought it was his hearing. So in forth grade

he was. Tested. He is dyslexia and some memory loss but his artistic memory

is

off the chart. even today when he writes on paper he starts all his writing

at the middle of the page. the teacher will move his hand over to the margin

but he goes write back to the invisible line in the middle of the page. no

one knows why. so i really thing that the brain has a big part in all this

but

try to get all the dr. on the same page. Welcome chicks p.s. By the way I

am the worst speller and type just as bad.

**************************************

See what's free at http://www.aol.com.

[Guest guest]

lol how many times i had to change sheets in the middle of the night . he

only throws up now if i can't get him cooled down fast enough . thanks chicks

**************************************

See what's free at http://www.aol.com.

[Guest guest]

Zakry will usually have a very restless night. Most nights he wakes up

and gets out of bed, comes to my room and then throws up. I am

noticing this in relation to onset of fevers.

>

> fonz is home today too. started with no sleep last nite. very

> uncomfortmbale . talking and kicking all nite. does anyone elses

children talk walk and

> cry in there sleep. thanks chicks

>

>

> **************************************

> See

> what's free at http://www.aol.com.

>

>

>

[Guest guest]

Hi Craig

The first thing I would do is keep to the sprouts that are commonly

sold. To do this I would go to the .com website and take

some time with the site. Not only will you find all the safe stuff to

sprout because they sell it, you can order from them. We each have our

favorite ordering sources, this one happens to be mine as I have had

great success with everything I have ordered. Depending on where you

live, if you have access to Handy Pantry products at a health food

market, you can start there also, although I have had better luck with

. Yes the shipping charges are a bit, but

charge what they are charged. I like .com because of the

mixes they have come up with, the variety of seeds (7 kinds of lentils),

and that Gil and his wife are very ethical. They have worked hard to

provide a safe product and to keep our access to these products available.

The second thing I would do is check the forum. Recently someone posted

about not sprouting chili pepper seeds. They are other seeds that have

been mentioned. You might put in poisonous seeds in the search of the

forum and see what comes up.

Third I would start with something simple, like lentils. They are little

power packs of nutrition and energy, you can eat them after they grow

their little tails a tiny bit either alone or in salads, or you can add

them to cooked food, like scrabble eggs, mashed potatoes, vegetable

soup. I have also found clover and alfalfa to be easy. Peas are easy

also, just soak, wait a couple of days and you now have great food.

Since our group ranges from raw foodists to Burger King devotees, you

have access to an unlimited amount of suggestion for eating sprouts.

Again the .com website will tell you pretty much everything

you want to know. Take a look at previous posts for sprouting ideas,

sprout smoothie ideas, it goes on and on. There are recipes on the

website also. Many books are mentioned on the forum so be prepare for as

much information as you can process.

Fourth-the sprouting devices. Depending on your income, you can start

with what you have: a glass jar to soak your sprouts and a strainer to

grow them in. Or you can use a wide mouth jar and cheesecloth. I would

check out the website for a great range of sprouters. Also

put in the search engine of the forum " automatic sprouters " . There are

two that are discussed here alot.

So, be bold, have fun and as you will be told, rinse and drain, rinse

and drain, rinse and drain.

Diane

[Guest guest]

Hi Craig

The first thing I would do is keep to the sprouts that are commonly

sold. To do this I would go to the .com website and take

some time with the site. Not only will you find all the safe stuff to

sprout because they sell it, you can order from them. We each have our

favorite ordering sources, this one happens to be mine as I have had

great success with everything I have ordered. Depending on where you

live, if you have access to Handy Pantry products at a health food

market, you can start there also, although I have had better luck with

. Yes the shipping charges are a bit, but

charge what they are charged. I like .com because of the

mixes they have come up with, the variety of seeds (7 kinds of lentils),

and that Gil and his wife are very ethical. They have worked hard to

provide a safe product and to keep our access to these products available.

The second thing I would do is check the forum. Recently someone posted

about not sprouting chili pepper seeds. They are other seeds that have

been mentioned. You might put in poisonous seeds in the search of the

forum and see what comes up.

Third I would start with something simple, like lentils. They are little

power packs of nutrition and energy, you can eat them after they grow

their little tails a tiny bit either alone or in salads, or you can add

them to cooked food, like scrabble eggs, mashed potatoes, vegetable

soup. I have also found clover and alfalfa to be easy. Peas are easy

also, just soak, wait a couple of days and you now have great food.

Since our group ranges from raw foodists to Burger King devotees, you

have access to an unlimited amount of suggestion for eating sprouts.

Again the .com website will tell you pretty much everything

you want to know. Take a look at previous posts for sprouting ideas,

sprout smoothie ideas, it goes on and on. There are recipes on the

website also. Many books are mentioned on the forum so be prepare for as

much information as you can process.

Fourth-the sprouting devices. Depending on your income, you can start

with what you have: a glass jar to soak your sprouts and a strainer to

grow them in. Or you can use a wide mouth jar and cheesecloth. I would

check out the website for a great range of sprouters. Also

put in the search engine of the forum " automatic sprouters " . There are

two that are discussed here alot.

So, be bold, have fun and as you will be told, rinse and drain, rinse

and drain, rinse and drain.

Diane