Re: ph and update- wow I didnt realize how bad things were till I started writin

[Guest guest]

I desperately need prayers at this time. Prayers for strength to

get

> up each day and continue this fight for survival

>

> Thanks

> Jeanette

(((((jeanette)))))

sorry to hear this are soo overwhelming

right now...you will be in my thoughts and

prayers...and Please let us know how the

dental surgery goes...as my daughter will be

having this done at the end of january...

thanks

nancy

[Guest guest]

Jeannette, it seems like there is so little in our lives that we have

any meager amount of control over at all. Sometimes all I can do is

hang on for the ride and wait it out. No management involved, just

surviving sometimes is enough.

Jor ph, bummer on the medication reaction. Our luck with meds is

not the greatest either, but hopefully you will find something that

helps. It's the trial and error stage that I hate. For the general

anesthesia dental treatment, any possibility of rescheduling that in

say six weeks to give you a window of time for other issues? Poor

ph. I hope he starts feeling better soon.

On the work/money issue, know all to well about that, but then there

are a large number of us here that have similar situations. I wish

sometimes that we were all closer together like a large extended

family so we could help each other more physically manage tasks and

logistics. You might be interested in the P_A Gift Exchange list we

have that's active this time of year. I think can sub you.

Folks post stuff they have to trade or that they are just getting

rid of, or things they are looking for. It was pretty active last

year and pretty successful from all accounts. Don't know if that's

any help but thought it might be.

Sounds like is having some problems with all the events too.

Does he have a therapist he's working with? We've gotten REALLY

lucky through our County Mental Health here and hooked up with some

great child therapists. Even better, they are easy to deal with

insurance wise, and during our own financial troubles have been

extremely helpful with sliding scales, waiving some fees, and even

providing some meds. Maybe that's worth a try in your area.

I wish you well, and peace, and strength, and blessings. Hang in

there.

[Guest guest]

Jeanette~ i am so sorry to hear things are so difficult for you right

now. We all care for you and if you need anything don't hesitate to

contact me on messenger. deep breaths

Amy mom to

Noah 6 Lucas 8 ASD's

[Guest guest]

((((((Jeanette))))))

Sorry things are so overwhelming for you right now. It really sucks when

you don't have answers to what's going on with you child. I'm hoping that

hasn't repeated that stunt about the cutting again!

I hope things return to a semblance of normalcy for you soon.

Sue

[Guest guest]

Prayers are headed your way. Writing always seems to help.

Jacquie H

> Hi everyone...

> ph is keeping me extremely busy these days.. I am unable to

> determine what is gastrointestinal, what it seizure related and

what

> was the flu bug that infiltrated my household over the past two

weeks.

>

> We have begun by simply charting every symptom/food/liquid all day

> everyday. Yesterday morning I had to take him into the hosp for an

> xray of his colon to check for leisions.. this was fun because of

> the " clean out " regiment I had to do in order for them to get a

clear

> picture.

>

> oh, and I dont think I wrote this in a post: The medication that

had

> a 1 in 50-100 chance of causing a " fatal " rash did infact show up

all

> over joseph several days after beginning the trial with this med.

> Ill tell you.. if the odds are 1 in 100, Im better off running the

> other direction, because it will be us.

>

> So Tuesday ph has been scheduled for Dentist visit at hospital

> under anestesia.. and I wish the waiting list he was on for this

> would have waited a little longer until I got the gastrointestinal

> stuff and the seizure thing under control.. I feel extremely

> overwhelmed right now.. and with all the additional doctor visits,

I

> am unable to work much... I AM BROKE...WAAAAA

>

> And if all this wasnt bad enough, my ADHD of almost 9 has

> decided he found agood " button " to push. in a rage he threatened

to

> cut himself two weeks ago and then after all was calm, went to the

> bathroom, did cut himself and put a bandaid on it. He calmly

marched

> out of the bathroom and announced that he cut himself and showed me

> his bandaid. He has since confessed his deed to his teacher, his

> counselor, his dad (sees all of 14 hours once a week) and all the

> caregivers that come thru the house. I am in a friggin fishbowl.

>

> I guess Ive needed to write this, cause my heartbeat is quickening

> while typing.

>

> I desperately need prayers at this time. Prayers for strength to

get

> up each day and continue this fight for survival

>

> Thanks

> Jeanette

[Guest guest]

(((((((((JEANETTE))))))))))

I'm so worried about you. Do you have any respite from all of this?

Any alone time at all?

Prayers going out for you hon!

~ Karin

Jeanette wrote:

> > I desperately need prayers at this time. Prayers for strength to get

> up each day and continue this fight for survival

>

> Thanks

> Jeanette

[Guest guest]

Jeanette,

Does ph have Henoch-schonlein purpura or is it another form of

vasculitis?

HSP can have very severe GI manifestations.

Me and a very nice lady, Dr. Ginnette Dreyfus, run a list for parents of

kids with HSP. I know some good lists for the other vasculitides too.

I know a lot more about this stuff than I do about autism and can be a big

help to you. I know what you mean about one in a hundred. Dillon's a one in

a million case himself.

Have you read Dillon's story?

http://www.isoa.net/~nitetrax/dillonstory.htm

I would be very glad to help you in any way I could. I know how terribly

frightening this is.

Sissi

Kids' Page

http://www.isoa.net/~nitetrax/original.htm

Boone's Art Page

http://www.isoa.net/~nitetrax/bart.htm

Dillon's Music Page

http://www.geocities.com/flaremusic

Please sign petition:

www.geocities.com/stopleland

ph and update- wow I didnt realize how bad

things were till I started writin

> Hi everyone...

> ph is keeping me extremely busy these days.. I am unable to

> determine what is gastrointestinal, what it seizure related and what

> was the flu bug that infiltrated my household over the past two weeks.

>

> We have begun by simply charting every symptom/food/liquid all day

> everyday. Yesterday morning I had to take him into the hosp for an

> xray of his colon to check for leisions.. this was fun because of

> the " clean out " regiment I had to do in order for them to get a clear

> picture.

>

> oh, and I dont think I wrote this in a post: The medication that had

> a 1 in 50-100 chance of causing a " fatal " rash did infact show up all

> over joseph several days after beginning the trial with this med.

> Ill tell you.. if the odds are 1 in 100, Im better off running the

> other direction, because it will be us.

>

> So Tuesday ph has been scheduled for Dentist visit at hospital

> under anestesia.. and I wish the waiting list he was on for this

> would have waited a little longer until I got the gastrointestinal

> stuff and the seizure thing under control.. I feel extremely

> overwhelmed right now.. and with all the additional doctor visits, I

> am unable to work much... I AM BROKE...WAAAAA

>

> And if all this wasnt bad enough, my ADHD of almost 9 has

> decided he found agood " button " to push. in a rage he threatened to

> cut himself two weeks ago and then after all was calm, went to the

> bathroom, did cut himself and put a bandaid on it. He calmly marched

> out of the bathroom and announced that he cut himself and showed me

> his bandaid. He has since confessed his deed to his teacher, his

> counselor, his dad (sees all of 14 hours once a week) and all the

> caregivers that come thru the house. I am in a friggin fishbowl.

>

> I guess Ive needed to write this, cause my heartbeat is quickening

> while typing.

>

> I desperately need prayers at this time. Prayers for strength to get

> up each day and continue this fight for survival

>

> Thanks

> Jeanette

>

>

>

>

>

>

>

[Guest guest]

Jeanette,

Is it s Sysndrome?

There's a list for that too...

http://www.interlog.com/~zzzz/

Sissi

[Guest guest]

OH MY GAWD!!!

Sissi, I clicked on the link below, just cuz I was curious what s

Syndrome is. I read the first sentence of " What is SJS/TENS "

--> " s- syndrome (SJS), also called erythema multiforme

major... "

I had erythema multiforme when I was a little girl. I'm reading about

it and I never knew how serious it was. My poor mother! She must have

worried her ass off.

On a more humorous note, from that point on, whenever I played doctor or

one of my dolls got sick, they had erythema multiforme because it was

the most medical sounding sickness I knew.

Debbie

[Guest guest]

Debbie,

I imagine your poor mom was freaked. Hypersensitivity to meds is really a

scary thing because you never know what could cause it and you're always

worried about your other kids getting it too.

That's why (after what happened to Dillon and my dad) I hate the idea of

putting Boone on meds. Something like this would be horrible in a spectrum

kid, as far as treatment -- as you can imagine.

Theresa Binstock did an article on this not too long ago and posted it to

the sju list. I'll try to find it.

Sissi

RE: ph and update- wow I didnt realize how

bad things were till I started writin

OH MY GAWD!!!

Sissi, I clicked on the link below, just cuz I was curious what s

Syndrome is. I read the first sentence of " What is SJS/TENS "

--> " s- syndrome (SJS), also called erythema multiforme

major... "

I had erythema multiforme when I was a little girl. I'm reading about

it and I never knew how serious it was. My poor mother! She must have

worried her ass off.

On a more humorous note, from that point on, whenever I played doctor or

one of my dolls got sick, they had erythema multiforme because it was

the most medical sounding sickness I knew.

Debbie