my son

[Guest guest]

Dear Maja,

I hope the fact that your doc does not know what tests to do next helps you to understand just how little help he can offer you, and your son.

You can clear the virus safely, and your son can clear the virus safely. Please do not be afraid, and do not let your doctor scare you.

Please go to the link in my signature and read my sotry, then visit our forum and read about all the things you can do to recover from HVC safely & naturally.

Peace, Jeanine

http://hepchelp.homestead.com

>From: maja szychowska

>Reply- > >Subject: [ ] my son >Date: Sun, 8 Sep 2002 13:09:12 -0700 (PDT) >MIME-Version: 1.0 >Received: from n19.grp.scd. ([66.218.66.74]) by mc1-f14.law16.hotmail.com with Microsoft SMTPSVC(5.0.2195.5600); Sun, 8 Sep 2002 13:11:11 -0700 >Received: from [66.218.67.193] by n19.grp.scd. with NNFMP; 08 Sep 2002 20:09:13 -0000 >Received: (EGP: mail-8_1_0_1); 8 Sep 2002 20:09:12 -0000 >Received: (qmail 87958 invoked from network); 8 Sep 2002 20:09:12 -0000 >Received: from unknown (66.218.66.217) by m11.grp.scd. with QMQP; 8 Sep 2002 20:09:12 -0000 >Received: from unknown (HELO web21503.mail.) (66.163.169.14) by mta2.grp.scd. with SMTP; 8 Sep 2002 20:09:12 -0000 >Received: from [216.194.5.106] by web21503.mail. via HTTP; Sun, 08 Sep 2002 13:09:12 PDT >X-eGroups-Return: sentto-2436732-2505-1031515752-hepc=hotmail.com@... >X-Sender: shimikeo@... >X-Apparently- >Message-ID: <20020908200912.40940.qmail@...> >In-Reply-<200209071411.g87EBZ2H018539@...> >X--Profile: shimikeo >Mailing-List: list ; contact -owner >Delivered-mailing list >Precedence: bulk >List-Unsubscribe:

>Return-Path: sentto-2436732-2505-1031515752-hepc=hotmail.com@... >X-OriginalArrivalTime: 08 Sep 2002 20:11:11.0672 (UTC) FILETIME=[E05B2380:01C25773] > > >My name is Maja, and I was diagnosed with HCV about 3 years ago. Since then I gave birth to my second child who is now 1. He just tested positive for the antibody. >I am very frusturated because the doctor doesn't even know what tests to do next, or what this means. Can anyone advise me at all, or just point me in the right direction as far as research on perinatal infection? I knew the risks are really low but I am still going out of my mind. >Thank you , >Maja > > > >--------------------------------- >

[Guest guest]

Hi,

No the vaccines for A & B would not normally create a false positive

test, but other things could do that. When you get him in to the GI,

they will run a more sensitive test on him to be sure.

I hope this next one comes out negative for him, but if it doesn't

don't panic. You know that HCV is a very slow moving disease and it

is possible he will never have problems with it. Just be sure he is

checked by your GI and do some research online about kids with HCV.

There is alot of helpful info out there.

Good luck,

LeighAnn

[Guest guest]

In a message dated 2/4/03 7:31:12 AM Pacific Standard Time,

no_reply writes:

> I hope this next one comes out negative for him, but if it doesn't

> don't panic. You know that HCV is a very slow moving disease and it

> is possible he will never have problems with it. Just be sure he is

> checked by your GI and do some research online about kids with HCV.

> There is alot of helpful info out there.

>

Thanks LeighAnn, I think I am done panicking right now. It will be hard to

live with the fact that something stupid I did in my youth is going to effect

my son though.

Sigh,

[Guest guest]

In a message dated 2/4/03 3:46:47 PM Pacific Standard Time,

grisley4@... writes:

> Have your GI do a genotype on your son. There are 9 genotypes with

> over 20 subtypes. If your genotype and your son's are different you

> didn't pass it on to him. Even if you are the same, there still may

> be other higher percentage risk factors that may be involved. Around

> 15% of those infected can not trace it to any known risk factor, see

> last months issue of Hepatitis Magazine at www.Hepatitismag.com

Thanks Glenn,

My son, who is only 12, does not have any other risk factors, so if he has

it, it likely came from me. I will have him tested further as I am now

wondering if his body might create the antibody due to growing inside me,

perhaps he does not have it. There is also the rare chance that it was a

false positive. One can only hope.

[Guest guest]

,

Have your GI do a genotype on your son. There are 9 genotypes with

over 20 subtypes. If your genotype and your son's are differant you

didn't pass it on to him. Even if you are the same, there still may

be other higher percentage risk factors that may be involved. Around

15% of those infected can not trace it to any known risk factor, see

last months issue of Hepatitis Magazine at www.Hepatitismag.com.

Glenn

> Hi all,

>

> I have probably had Hep C since the early 80's. I gave birth to my

son in

> 1990. Everything I have read said that it is rare for Hep C to be

transfered

> via childbirth, especially with a C-Section (which I had). Anyway,

I had my

> 12 yo son tested and he tested positive for the Hep C antibody. I

am seeing

> my GI this Friday so I will talk to him about it.

>

> My question is my son had the Hep AB vaccinations about a week

before being

> tested for Hep C.......is it possible that it created a false

positive?

>

>

>

>

>

[Guest guest]

Hi Trish,

I also have a 5 yr old with Stills diagnosed a month before his 3rd birthday.It sounds like you are still in the beginning of this disease and still at the point where you feel desperate.It can be very hard and take a long time to get a stills patient under control.It can be very frustraiting and heart wrenching.Besides the meds the only thing that would take the edge off of s pain was hot baths as many as 5 a day and a heated matress pad.He took as much as 30mg Prednisilone,800mg Ibuprofin,25mg Methotrexate sub-que,200mg Plaquenil and 12.5mg Enbrel all at the same time.Not to mention a couple of steroid injections in his lft ankle.A huge combo but the Enbrel did the trick and now he just takes 15mg Methotrexate orally and 12.5mg Enbrel and has been 100%symptom free since December. was one of the lucky ones,Enbrel only has a 50-50 chance of working for a stills patient.Our rheumy at Vanderbilt doesn't believe in the figures because he had wonderful luck with his Stills patients and Enbrel.

Just remember that each child is differant and responds to the meds differantly.It can take a long time and alot of trial and error to find the right combo and right doses of drugs.Feel free to ask any question at any time.

Hugs

Becki and 5systemic

[Guest guest]

My daughter has had Still's for four years now. She is 14. Tell us a bit of your story, i.e. How old is your son, what is he on, and how long did it take to get diagnosed? Don't be afraid to post, we have all been where you are at currently. It does get better. It seems the beginning of the disease is the worst. Sometimes it takes alot of tweaking to get the medications right. This listserve has lots of experience and can help you get through the tough times. Good luck. (n, 14, systemic)

my son

i would love to hear from parents with kids with stills, jra, i am going thru alot and need help . thank trish

Post your free ad now! Canada PersonalsTo leave this mailing list, send request to: -unsubscribe

[Guest guest]

-Welcome Trish,

My son, was dx with Systemic JRA ( Stills ) just this past

June. We are still new to all of this. But I will tell you this list

is an amazing source of information and support. Just keep reading

and keep asking questions. No question is silly, so dont be affraid.

I was where you are just a few short months ago and it does get

easier. Once you learn more it doesnt seem as scary. Im determined

that this does not become who Nick is... he is a great little kid

who just happens to have a nasty desease, but im darned if it will

get the better of us.

Nick is currently taking Naprosyn 2x a day. His dosage was increased

and he had a brief week on steriods to control a flare at the end of

July. He sees his rheummy again tomorrow and i wont be suprised if

she doesnt change medications. The naprosyn is barely keeping things

under control and if Nick misses a dose or vomits a dose he feels

the effects the next day.

Please tell us about your son and your journey so far.

Hugs Helen and ( who turned 6 a few weeks ago )) Systemic.

-- In , tisha rowe <tisha_rocks@y...> wrote:

> i would love to hear from parents with kids with stills, jra, i am

going thru alot and need help . thank trish

>

>

>

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

> Post your free ad now! Canada Personals

[Guest guest]

hi, i cant remember if i replied, honestly just plane tired and emotional, 4 months into the disease, and he is going thru some tough times, the prednisone doesnt seem to be helping so we are going to do methotrextate, but so worried about all the medicines,but have no choice. he has all the symptoms and it is horrible. thanks byeWILLIAM PRICE <william.e.price@...> wrote:

My daughter has had Still's for four years now. She is 14. Tell us a bit of your story, i.e. How old is your son, what is he on, and how long did it take to get diagnosed? Don't be afraid to post, we have all been where you are at currently. It does get better. It seems the beginning of the disease is the worst. Sometimes it takes alot of tweaking to get the medications right. This listserve has lots of experience and can help you get through the tough times. Good luck. (n, 14, systemic)

my son

i would love to hear from parents with kids with stills, jra, i am going thru alot and need help . thank trish

Post your free ad now! Canada PersonalsTo leave this mailing list, send request to: -unsubscribe

[Guest guest]

Hi Trish,

I was just wondering how your little guy was doing these days? Has he

been feeling any better? Which of his joints are currently being

affected? Does he have any systemic symptoms at this time? Is he taking

anything besides prednisone for the inflammation? What dose is he on?

A systemic JRA flare can be a very serious health risk. Try not to fear

the medications so much. Talk with your son's doctors, speak with other

parents of children with systemic JRA. Once we learn more about things,

they're usually not quite so scary. The side effects of this illness not

being treated aggressively enough are much more dangerous than the side

effects of the medications.

Stay in touch,

Georgina

tisha rowe wrote:

> i would love to hear from parents with kids with stills, jra, i am going

> thru alot and need help . thank trish

[Guest guest]

hi, well he is fever chills everynight, on prednisone, and his hip really is bad, but his pains move around but lately it is his hip. we started mtx last night, has anyone done the anitboitic protocol. thanks trishGeorgina <gmckin@...> wrote:

Hi Trish,I was just wondering how your little guy was doing these days? Has he been feeling any better? Which of his joints are currently being affected? Does he have any systemic symptoms at this time? Is he taking anything besides prednisone for the inflammation? What dose is he on?A systemic JRA flare can be a very serious health risk. Try not to fear the medications so much. Talk with your son's doctors, speak with other parents of children with systemic JRA. Once we learn more about things, they're usually not quite so scary. The side effects of this illness not being treated aggressively enough are much more dangerous than the side effects of the medications.Stay in touch,Georginatisha rowe wrote:> i would love to hear from parents with kids with stills, jra, i am going > thru alot and need

help . thank trishTo leave this mailing list, send request to: -unsubscribe

[Guest guest]

he is on 10 mg of prednisone, and 2 naproxyn 275 mgsGeorgina <gmckin@...> wrote:

Hi Trish,I was just wondering how your little guy was doing these days? Has he been feeling any better? Which of his joints are currently being affected? Does he have any systemic symptoms at this time? Is he taking anything besides prednisone for the inflammation? What dose is he on?A systemic JRA flare can be a very serious health risk. Try not to fear the medications so much. Talk with your son's doctors, speak with other parents of children with systemic JRA. Once we learn more about things, they're usually not quite so scary. The side effects of this illness not being treated aggressively enough are much more dangerous than the side effects of the medications.Stay in touch,Georginatisha rowe wrote:> i would love to hear from parents with kids with stills, jra, i am going > thru alot and need

help . thank trishTo leave this mailing list, send request to: -unsubscribe

[Guest guest]

Have a great visit....we hear your joy...JOY! LOL

[Guest guest]

In a message dated 10/18/2003 8:11:53 AM Pacific Standard Time,

txdena@... writes:

> am as excited as a 6 year old on Christmas morning.

Have a Wonderful Visit~ !!!!

K

Adrienne's Mom

[Guest guest]

Have a great visit, Joy!

[Guest guest]

Hi Sally,

Thanks for the insight on your son and what you've done to help him. It's interesting to hear what people have done and how well some therapies have worked. My husband and I have been to 3 Autism Conferences nearby in Pasadena. They are held each year, and are 3 days worth of info and classes. We both learned a lot the first couple times, and even enjoyed the conference a year ago. In 2003, my husband and I missed it. Maybe we'll go again this year. In addition, we have been to a couple conferences on Inclusion, offered by TASH. I've also been to Facilitated Communication workshops, PEC workshops, Medical related workshops, Transition workshops, and RDI Seminar.

I've looked into Mood Bell, and Tomatis (ear therapy), but didn't do either one. I recently requested sexuality training, and am not sure I got what I wanted out of it. Now she wants a baby. She is also trying to "nurse" herself. Gads! We’ve done some music therapy and Tammy seemed to enjoy it until we tried to do it in a group setting. She ran over and kicked a kid, and we got thrown out. (It was even an organization that specialized in Autism). The best thing I found was horse therapy, but we even got kicked out of their group lesson when she (after 3 years of being at the ranch) spit on a newcomer. The director of the place saw it happen, and he went a little crazy. Told us to leave. I never went back...but found another ranch that accepted Tammy, and lets her bring friends to help feed, groom and ride the horses. Tammy absolutely loves the ranch. It is one place where she is calm, and because it's not "therapy", she doesn't have the pressure which tends to cause her stress, which in turn causes her to "act out"...kicking or spitting, etc. That's where I sometimes have an internal struggle with therapies. It saddens me to think that our kids just can't have fun without play therapy, horse therapy, music therapy, etc. I've tried to make her learning happen in more inclusive settings, but it's a struggle to find acceptance.

I've searched out several inclusive settings...she's on a regular swim team for one thing. The first place I tried to get her into absolutely She's also been in girl scouts for going on 5 years, been in a couple troops and seems to enjoy being around the kids. She had a hard time during some of the "choral" stuff...like the Pledge of Allegiance and the Girl Scout Promise, and would run out of the room the first 3 years when Christmas Carols were sung. We try to go on fieldtrips, and this year she actually participated in a couple parades...the route 66 parade in September, and the Xmas parade in December. I was impressed! Our social time is not without incident however, but the incidents are getting farther between. I think she does better when she knows what to expect. Maybe a lot of her behavior is anxiety. Who knows. But most of it is just plainly lack of impulse control. In November we arrived one Saturday, and before I could grab her arm, she ran through the door of the meeting room, and put her hand in the birthday cake that someone had brought. She was on a sugarless diet at the time, and I guess...just couldn't control herself. I removed every speck of cake from her hands, none ended up in her mouth. After cleaning up the mess, the leader and birthday girl talked to Tammy, and Tammy gave them both a hug and said "I'm sorry". She still talks about "are you going to moosh their cake?" Humm...was it for social attention? I wonder! In addition, she's kicked a kid, and slapped a kid, and spit up on a kid, but they are great...kids know how to forgive and forget. It's just hard sometimes to see her behave so...it's embarrassing I guess. My husband has a hard time even wanting to take her anywhere, and to be honest, there are some places I just will not take her into anymore. Starbucks for instance. After she ran over and grabbed someone's coffee and poured it out on the floor, I've not brought her back. We do have a social trainer that the State provides who takes her out every other weekend...shopping, library, the mall, the zoo...and she seems to do pretty well with her trainer. It gives me a little break, and gives Tammy a break from me as well I suppose. Since we have no grandparents or aunts/uncles to interact with, the aides we have had have become a sort of "extended family", so to speak.

I homeschooled my older kids when Tammy was first born, and continued to homeschool her with Montessori techniques, and family intervention. I wish I'd known more about some of the techniques of ABA earlier on, but what is done is done I suppose. We didn't get much help from anyone until she was 8, since it was the beginning of her behavior problems. That's when I finally went to our State's Regional Center and got behavioral intervention, respite and community training. They also paid for some social therapies originally, but now are refusing to pay for horses, music or swimming. The State is in "financial crisis". They are even trying to dump respite services. That will certainly cause residential placements if it goes through.

Well, I thought she'd drifted off to sleep. Guess not.

Bj

my son

Hi BJ,

thanks, I give any credit to the professionals I have listened to over the years in consultation, at seminars, books, other parents, etc. I wish I knew a lot more-I am always trying to learn more!

My son was more severely autistic when he was younger(he is now 12 ). He used to line things up, had few words, no social skills, isolated himself, lined things up, tantrummed, etc.

I did all ABA interventions(in the broad sense, I didn't do a full home program to do the Early Intensive Behavioral Intervention as I would have liked because I didn't have the money). I did use behavioral techniques using tons of advice from a psychologist at my MRDD and put him in therapies with people who used them(like extinction, consequences for his actions, some timeouts, loss of privileges and giving of rewards using a token economy system-which we currently use).

I am fortunate he has developed a lot over the years and I can now usually reason with him(though he still doesn't "get" some things, we work on a lot of things still-like silly talk-he still likes to imitate cartoons). Currently this week, we are starting a social skills class with other kids his age with an experienced speech therapist who has worked with kids with Autism and Aspergers for years. The aim is to help the kids develop more appropriate interactions. I have had him in several social skills groups and summer camp for social skills, art lessons, magic lesson, acting lessons one session, etc. and it has really helped. They aren't easy to find, but I keep my eyes open for anything I can and have lots of contacts in the autism community who share that kind of info.

He is also going to start individual behavior consults with a Dr. who was one of Dr. Mulick's interns and worked with him previously with very good results. We are going to work on "teen issues"...things like appropriate/inappropriate touch and actions and what being a teen means, etc.

My son required constant supervision when he was little as he had no fear of danger and was a runner too. He has changed tremendously over the years, people who haven't seen him in a long time are amazed at how well he speaks and how much more appropriate he is. He has had tons of interventions-as much as I could find and afford. I know we are just fortunate too. Some kids who have had more haven't made the progress he has, I am really grateful for every little thing he can do. It sounds like your daughter does have quite a few skills, but needs the social part. My son still does too. I hope you can find some help. I was wondering if you get any respite from your MR/DD...mine provides it through Family Resources Funding(which also helped pay for many therapies and conferences, etc.)

Well, that was probably more than you asked for:) I hope you can get more help, it is hard to find. Take care, Sally

[Guest guest]

Hi BJ,

you have certainly done a lot of work! I can identify with the lack of resources, our MRDD lost another levy and everything is being cut. If our Family Resources wasn't just the money from the State(they no longer match)I would lose it too. It and case management(which is practically non-existent for kids, they don't really do anything for me)are the only things I get from the MRDD. They used to offer more, but just can't now. I can also identify with the lack of family involvement. When we got the diagnosis, my family fell off the map for a few years, not even returning my phone calls for a while. They aren't too good at support or understanding. After the diagnosis, they were all telling me how they could see it a long time ago. They also blamed me for not doing more. I went through an awful period of no support and not knowing the system at all for any kind of help, and my son suffered for it. If I had known more, I could have gotten an earlier diagnosis(instead of at 4)and obtained more help for him and he might be fine now.(I had a Dr. tell me if he had had a full program at home he might not be autistic-symptomed now). It is heartwrenching, so I don't think about it anymore because all I can do is what I can now. That is why I try to help other parents in any way I can, to save them more difficulty.(I was an officer in a FEAT group last year and my main thing is sharing information:) So, I talk a lot, email, and communicate with local parents. Resources are so hard to find. My son still needs someone with him all the time, helping him in interventions I find, and I know what you mean, I wish our kids could just participate in life without all the difficulty and having to find "special" groups sometimes. We have tried a lot more things and not ended up doing them, because they weren't a good fit or my son was bored and it was a chore to him(he doesn't like the special needs baseball team he was on, because he doesn't like to get hot and sweaty:)He did learn to bat and catch and knows the game now. I really think autism is THE most difficult disability. It affects the kids, the parents in so many ways and it is so difficult to work really hard for years and see tiny increments of progress. I wish I could just "fix" everything that still needs work in my son, it is so scary to think of his future, even as well as he is doing right now, I still worry all the time.

Hang in there! Warm Regards, Sally

[Guest guest]

Well, the police took my son to a hospital tonight.

I'm sick about it. I would rather be dead. Can someone

tell me what to do? Jim, do you have any suggestions.

He attacked my husband 3 times. said that he was

really trying to hurt him too. I'm so scared.

Connie

[Guest guest]

Well, the police took my son to a hospital tonight.

I'm sick about it. I would rather be dead. Can someone

tell me what to do? Jim, do you have any suggestions.

He attacked my husband 3 times. said that he was

really trying to hurt him too. I'm so scared.

Connie

[Guest guest]

Connie,

Sorry I am just getting to my email. Are your son and husband ok? I called and

left a message on your phone.

Call or email me when you have a chance.

Best,

Jim

Re: my son

Well, the police took my son to a hospital tonight.

I'm sick about it. I would rather be dead. Can someone

tell me what to do? Jim, do you have any suggestions.

He attacked my husband 3 times. said that he was

really trying to hurt him too. I'm so scared.

Connie

------------------------------------------------------------------------------

[Guest guest]

Connie,

Sorry I am just getting to my email. Are your son and husband ok? I called and

left a message on your phone.

Call or email me when you have a chance.

Best,

Jim

Re: my son

Well, the police took my son to a hospital tonight.

I'm sick about it. I would rather be dead. Can someone

tell me what to do? Jim, do you have any suggestions.

He attacked my husband 3 times. said that he was

really trying to hurt him too. I'm so scared.

Connie

------------------------------------------------------------------------------

[Guest guest]

it sounds as if he has psoriatic arthritis . as u know it is so hard to

diagnose . you should get him to a rhematologist as soon as possible .

unfortunately most of the joint da mage occurs early in the disease . the

doctors could at

least put him on mobic or an anti inflamatory before too much damage occurs .

i feel bad he is so young. yes we do know that there is a familial component

to the disease and since u have it he is showing early signs of the disease .

get him some help as soon as possible

cathy from ma.

[Guest guest]

Good luck Pat - as a Mom myself, I can well imagine how you are

feeling - but you mustn't blame yourself... please don't. Anyhow,

it might not be what you are fearing.... I will be thinking of you

and sending you as many positive vibes as I can. Keep us posted,

>

>

> Hi Everyone,

>

> My son is 14 years old. He has psoriasis. He had terrible skin

> problems as a baby and also had bad hips. They thought he had

> Juvinile arthritis but he didn't. Lately he has had red rashes on

his

> face around his nose and mouth, rashes behind his kness and elbows

> and severe migraines. His back hurts alot and he is often tired

but

> has a pretty heavy schedule. he does alot of marching and carries

the

> flag for JROTC and he works in a nursery. I am concerned if he

could

> be developing arthritis. We are going to the doctor today about

the

> rashes and the migraines, I just worry that I have passed this

> insidious disease onto him.

>

> Any words of advice would be helpful. I have psoriatic arthritis,

> fibromyalgia, osteoarthritis and myofacial pain syndrome. I know

it

> probably worries him also so I try not to ask to much to make him

> worry.

>

> Pat

[Guest guest]

Welcome Kate! I don't know how you feel about posting a pic of your

baby's eyes, but we'd love to see them! In all my life I've only met

a handful of people who had eyes like me. They make me feel special.

[Guest guest]

Hi ,

It's great to hear that is doing so well, thanks for sharing.

in England