update

[Guest guest]

Prayers & hugs go out to you. Feel better soon!

Destiny

Ursula <uahollem1@...> wrote:

I apologize for not being the welcoming moderator that I should be. I will be

less involved the rest of the year due to some health concerns. A month ago I

was diagnosed with a kidney problem that I was told was congenital but tended to

become aggravated with stones. When stones were found one was rather large and

obstructing the left kidney. A cystoscope failed and so lithotripsy was

scheduled. The litho was successful and a stent was placed to help the

fragments pass. It was to be removed in a couple of days past postop as an

outpatient. A day after the litho I was at home when I spike a fever, started

to have a migraine and became dehydrated due to not being able to stand from the

migraine (and too pigheaded to ask for help from hubby). I thought the fever

would subside but 12 hrs later it hadn't so I called the Urologist and was told

to go to the ER. 3 liters of fluid later I still had the migraine but finally

could be cathed for labs and blood was drawn and my first IV

of the visit placed.

Admitted to surgical floor and started on 2 IV abx and fluids. A day later I

was still spiking and unable again to go potty so another straight cath was

done. IV #1 blew and after 7 attempts by 3 different nurses the urologist came

in and placed an IV in my right foot. Right kidney was deemed in failure and a

catheter was placed and new meds were ordered. THankfully a PCA of Demerol was

among them.

That night the foot IV looked iffy so the surgeon was paged and I was taken to

the surgical ICU for sedation and a subclavian central line. After starting

Gentamycin my fevers subsided and I stayed 4 more days and finally was able to

lose my foley and started going on my own.

Follow up with the urologist this week was good, stent was removed and another

follow up scheduled for right before thanksgiving. He'll either send me to

Atlanta (Emory) for a special procedure to correct the kidney or try a more

radical surgery here. (I vote for the Emory trial first).

My strength seems to be the worst at returning but he says that's mostly from

the fevers. The kidney twinges now and then but nothing awful.

Welcome to all the new members and please keep writing in. I've seen the roll

call and look forward to reading through it.

Ursula

[Guest guest]

You poor girl! Hang in there...

we will be praying for your health,

and " strength and courage " to help

you through this.

Jill, CVID

mother to Emma, CVID

Ursula <uahollem1@...> wrote:

I apologize for not being the welcoming moderator that I should be. I will be

less involved the rest of the year due to some health concerns. A month ago I

was diagnosed with a kidney problem that I was told was congenital but tended to

become aggravated with stones. When stones were found one was rather large and

obstructing the left kidney. A cystoscope failed and so lithotripsy was

scheduled. The litho was successful and a stent was placed to help the

fragments pass. It was to be removed in a couple of days past postop as an

outpatient. A day after the litho I was at home when I spike a fever, started

to have a migraine and became dehydrated due to not being able to stand from the

migraine (and too pigheaded to ask for help from hubby). I thought the fever

would subside but 12 hrs later it hadn't so I called the Urologist and was told

to go to the ER. 3 liters of fluid later I still had the migraine but finally

could be cathed for labs and blood was drawn and my first IV

of the visit placed.

Admitted to surgical floor and started on 2 IV abx and fluids. A day later I

was still spiking and unable again to go potty so another straight cath was

done. IV #1 blew and after 7 attempts by 3 different nurses the urologist came

in and placed an IV in my right foot. Right kidney was deemed in failure and a

catheter was placed and new meds were ordered. THankfully a PCA of Demerol was

among them.

That night the foot IV looked iffy so the surgeon was paged and I was taken to

the surgical ICU for sedation and a subclavian central line. After starting

Gentamycin my fevers subsided and I stayed 4 more days and finally was able to

lose my foley and started going on my own.

Follow up with the urologist this week was good, stent was removed and another

follow up scheduled for right before thanksgiving. He'll either send me to

Atlanta (Emory) for a special procedure to correct the kidney or try a more

radical surgery here. (I vote for the Emory trial first).

My strength seems to be the worst at returning but he says that's mostly from

the fevers. The kidney twinges now and then but nothing awful.

Welcome to all the new members and please keep writing in. I've seen the roll

call and look forward to reading through it.

Ursula

[Guest guest]

I am sorry to hear about your health problems. I will keep you in my

prayers.

(new to PEDPID)

>

> I apologize for not being the welcoming moderator that I should be.

I will be less involved the rest of the year due to some health

concerns. A month ago I was diagnosed with a kidney problem that I

was told was congenital but tended to become aggravated with stones.

When stones were found one was rather large and obstructing the left

kidney. A cystoscope failed and so lithotripsy was scheduled. The

litho was successful and a stent was placed to help the fragments

pass. It was to be removed in a couple of days past postop as an

outpatient. A day after the litho I was at home when I spike a fever,

started to have a migraine and became dehydrated due to not being able

to stand from the migraine (and too pigheaded to ask for help from

hubby). I thought the fever would subside but 12 hrs later it hadn't

so I called the Urologist and was told to go to the ER. 3 liters of

fluid later I still had the migraine but finally could be cathed for

labs and blood was drawn and my first IV of the visit placed.

>

> Admitted to surgical floor and started on 2 IV abx and fluids. A

day later I was still spiking and unable again to go potty so another

straight cath was done. IV #1 blew and after 7 attempts by 3

different nurses the urologist came in and placed an IV in my right

foot. Right kidney was deemed in failure and a catheter was placed

and new meds were ordered. THankfully a PCA of Demerol was among them.

>

> That night the foot IV looked iffy so the surgeon was paged and I

was taken to the surgical ICU for sedation and a subclavian central

line. After starting Gentamycin my fevers subsided and I stayed 4

more days and finally was able to lose my foley and started going on

my own.

>

> Follow up with the urologist this week was good, stent was removed

and another follow up scheduled for right before thanksgiving. He'll

either send me to Atlanta (Emory) for a special procedure to correct

the kidney or try a more radical surgery here. (I vote for the Emory

trial first).

>

> My strength seems to be the worst at returning but he says that's

mostly from the fevers. The kidney twinges now and then but nothing

awful.

>

> Welcome to all the new members and please keep writing in. I've

seen the roll call and look forward to reading through it.

>

> Ursula

>

>

>

[Guest guest]

Ursula,

I am sorry to hear of your illness and hope that all continues to go

well as you heal and gain strength.

>

> I apologize for not being the welcoming moderator that I should be.

I will be less involved the rest of the year due to some health

concerns.

[Guest guest]

Wow Ursula, I've had kidney stones before, so I know how awful that can be,

but I can't even begin to imagine the rest of the stuff you've been through!

I'll be praying for a quick recovery! Let us know how things are going!

Mom to Conner (11, Asperger's, mild CP, partial seizures, asthma, GERD,

Hashimoto's disease, hypogammaglobulinemia, complement deficiency, antibody

deficiency, NK cell defect, and resolved adrenal insufficiency),

Hayden (11, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (11, asthma and mild hearing loss/unaided),

and Kelsey - (9 going on 19!)

Please visit us at www.caringbridge.org/in/connersmith

[Guest guest]

If you feel that you are too stressed, maybe you should distance

yourself from the situation a bit? I know that you are trying to be

a good friend, but you can't be a good one without taking care of

yourself first. Also, no matter how hard you try, your kids will pick

up on your anxiety and feel it themselves (if mom is worried, I should

be too).

Take care,

Bonnie

>

> Hi All. I have been busy trying to stay afloat. My friend's son is

> still in critical care and the waiting is getting to me. I have an

> appt. with my therapist on Monday. I need a booster shot. I am also

> worried about Bre. She is trying out for school soccer and is

> practicing everyday after school till 5:00. This morning she was tired

> and grumpy. I don't want her to over do it, yet I don't want to tell

> her she can't play and not even let her try. I haven't talked to the

> coach yet. Do you think I should tell him about her ocd? I want her

> treated normal, but she isn't normal is she. This is so hard. I have

> trouble making decisions when I am stressed. Trying not to let Bre

> feel the stress. lol. She has enough of her own. So that's it in a

> nutshell. Struggling everyday to keep it together and stay sane!

> Sandy

>

[Guest guest]

Mind over matter......I have lost my mind and it doesn't

matter..LOL

At 05:32 AM 12/31/2005, you wrote:

Mind over matter, I

guess. I had to make it work or stop treatment, cuz I couldn’t quit

work – too many bills!

Happy New Year, everyone!!!!

De

update

So glad the holidays are just

about over..It was a little stressful for me, I wasnt sure if I was

depressed or sick...still not sure, but went to the hand doctor and

finally received a shot in each wrist, I havent had any in 5

yrs...and my hands already feel so much better...He also gave me a pair

of braces, the good ones too...so many people were tellin me I needed

surgery, well I do but not right now..it can wait...and the doc will

follow up...

Work takes alot out of me, I still have no idea how in the world De

worked ON tx..Your tough De!..

Wishing everyone a Happy New Year & better Health Love

and Hugs, Patty

[Guest guest]

Me Too!!lol.....

RE: update

Mind over matter......I have lost my mind and it doesn't matter..LOLAt 05:32 AM 12/31/2005, you wrote:

Mind over matter, I guess. I had to make it work or stop treatment, cuz I couldn’t quit work – too many bills! Happy New Year, everyone!!!! De-----Original Message-----From: Hepatitis CSupportGroupForDummies [ mailto:Hepatitis CSupportGroupForDummies ] On Behalf Of Pat McBrideSent: Saturday, December 31, 2005 1:37 AMHepatitis CSupportGroupForDummies Subject: update So glad the holidays are just about over..It was a little stressful for me, I wasnt sure if I was depressed or sick...still not sure, but went to the hand doctor and finally received a shot in each wrist, I havent had any in 5 yrs...and my hands already feel so much better...He also gave me a pair of braces, the good ones too...so many people were tellin me I needed surgery, well I do but not right now..it can wait...and the doc will follow up...Work takes alot out of me, I still have no idea how in the world De worked ON tx..Your tough De!..Wishing everyone a Happy New Year & better Health Love and Hugs, Patty

[Guest guest]

Hi, -

" It was a brief meeting then more bloodwork. "

Sometimes, they will do quantitative immunoglobins and then, if things look

odd, do antibody function, titers, T-cell function, etc. Is this what they are

doing? I know the waiting is dreadful. We have all been there.

" Ana gained a pound in three weeks...I have started sleeping with her every

night and nursing her four times a night. "

That'll do it. And, it is totally not sustainable unless the underlying

problem(s) get resolved. My child was in the 90th percentile -- on breastmilk

alone! All of the early docs would comment on how she was such a good eater

(such ignorance) -- when she was not eating anything except breastmilk! I up

with her every 1-2 hours nursing until she was well established on IVIG -- and

her gut healed. It saved her life but it almost killed me.

" I'm afraid the doctor will not understand the GI/PID connection "

Your concerns are valid. I am not familiar with your physicians and it is

true that some get it and some don't. Our first immuno and GI doc(who were

pals) didn't get it -- but her second set of docs were amazing. Right before

our last appointment with the first immuno, we discovered that she was not up on

the latest immune-gut info and flat out refused to learn. The immuno ended up

calling our old/fired GI doc (her pal) for advice. Long story short, we fled

from the practice and was able to get our baby seen by the chief immuno at

Children's Hospital Los Angeles. There, she was immediately treated with IVIG

-- even though she was chubby and beautiful. = ) Independently, her new GI doc

at UCLA (who did not even speak with the immuno) diagnosed her with hypogam! I

know there are some that do understand the gut-immune connection, but it may be

hard to know who those docs are until they have evaluated your child. Some of

the old timers might be able to help you with this.

I am so sorry you are going through the stress of not knowing what the future

holds. Things are going to work out because Ana has you! You are her best

advocate (helps if hubby is there too) -- and if you are not satisfied with the

eval, you can always see what lung-line nurses would advise you to do.

" They are also rechecking her T-cell "

T-cell function can also be check while on IVIG. Antibody function can't,

though.

" She also did IgG w/ subs, IgE and a metabolic panal what does that tell us?)

Should I have asked her to recheck IgM and

IgA? Do they ever lose those if they have them? "

Make sure that you have copies of everything. I think you said you are using

Excel. Good girl. All of the immunoglobins (IgA, IgM, IgG) can go up and down.

But, PID pumpkins tend to have chronically low numbers of at least one, and

sometimes more, of these classes. Sometimes, T-cell irregularities as well. If

Ana's are " fishy " she is in good company.

Hang in there, mom.

(mom to CVIDer)

[Guest guest]

,

Thanks for the encouragement. We are waiting on the titers mainly.

And then rechecks of some other stuff. I really hope that the docs

understand that the only reason she is gaining is because of the

nursing, I don't want them to not treat her because they think she is

doing better, but I am not going to stop nursing her to make a point.

But this nursing schedual is killing me. Hopefully they will listen

to me. We'll see what happens.

So I feel like a terrible mother for this, but part of me wants the

antibody responses to come back looking low so they will just treat

her. I mean, long term I obviously want them to look right, but right

now I just want the picture to be clear to the docs, she needs the

IVIG. I'll just pray they understand.

Ana, 14 mo, IgG def, FTT

[Guest guest]

I am sorry that you did not have a good appointment today but hopefully

they will go ahead with the infusions and see if that don't help her. I

know the feeling with wanting to nurse more often just to get the child

to gain weight. I did that when my youngest daughter was about 9 mths

old and they wanted to supplement her, not that I am against it and all.

She gained almost a pound in a week so we didn't have to supplement.

Congrats on the new little one if that is the case then.

Cassie

jmfritze wrote:

> Well, the appointment today was not what I had expected. It was a

> brief meeting then more bloodwork. I knew that the blood work was

> coming, I just didn't know that they needed it back before deciding

> anything. Silly now that I think about it. Why would they even do

> the blood work if they didn't need it? So we wait another week for

> these results then talk about IVIG. If her immum. responses (what

> are they called?) don't look good it is a guarenteed at this point,

> but if they don't it will be a discussion. Because here is the

> thing, Ana gained a pound in three weeks. First weight in six

> months. And that is wonderful, don't get me wrong. But the reason

> is that I have started sleeping with her every night and nursing her

> four times a night. It is the only time she will fully nurse on

> both sides and I just wanted her to gain. Well it worked, but it is

> obviously not a long term solution. She can not gain weight off of

> solids. I want to know why. I'm afraid the doctor will not

> understand the GI/PID connection, as many of you have said many docs

> don't. I'm afraid she is going to run me through the GI route

> again. They find nothing. Ana doesn't even have any symptoms as

> far as stool goes anymore, besides from the looseness from the

> antibiotics. How do I help the docs understand that her not eating,

> not gaining off of solids, is tied to the PID? I know it is. I

> just know. And I honestly feel that the only way it will get better

> is with IVIG.

>

> They are also rechecking her T-cell. Once this doc looked at them

> closer she thought some of the stuff looked fishy, so she wants to

> recheck it. She also did IgG w/ subs, IgE and a metabolic panal

> (what does that tell us?) Should I have asked her to recheck IgM and

> IgA? Do they ever lose those if they have them?

>

> The blood draw was horrible. I don't know why, it just was worse

> for me then the rest. I'm just an emotional wreck today. A little

> hormonal or something. Shhhh.....don't tell anybody, I think I may

> be pregnant....a big oops, but a happy one if it is true. I'm just

> too scared to go get a test.

>

> Thank you for the prayers and support. What would I do without all

> of you?

>

>

> Mom to Ana, 14 mo, IgG def, FTT and ????

>

>

>

>

>

> This forum is open to parents and caregivers of children diagnosed

> with a Primary Immune Deficiency. Opinions or medical advice stated

> here are the sole responsibility of the poster and should not be taken

> as professional advice.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

> /messages

>

>

>

>

[Guest guest]

That's great n. Thanks for all of your other posts--they give me

food for thought (and some good thoughts for food--recipes). I love

your attitude.

Candace

>

> Progress not perfection - I'm convinced that's the ticket. Here's my

> update,

[Guest guest]

Good news!

~Pattie Curran~

Piedmont Triad, NC

Elbridge Gerry--signer of the Declaration of Independence, Govenor of

Massachusetts and Vice President of the United States under

Madison....

Ever wonder where the term gerrymandering comes from? While serving as

governor of Massachusetts from 1810 to 1812, Elbridge Gerry helped enact a

law dividing the Bay State into political districts favorable to his own

party. This resulted in some odd shaped districts. One district looked like

a salamander, someone said. Someone else joked that it looked more like a

" gerrymander, " making a play on the governor's name. To this day, the

practice of drawing boundary lines to favor a political party or group is

called gerrymandering.

_____

Don't know if I have told ya'll this or not but he hasn't had the biaxin

and allegra in the last couple of weeks and hasn't seemed to have a

problem with the sinus', which is a good thing.

_____

[Guest guest]

Glad to hear the second round went well! Hope he has fun this

weekend -- and sounds like you can rest easy too, knowing he is in

good hands!

-Rogena (Mom to 4 boys, including Cole -IgA & IgG Subclass Def,

GERD, possible Celiac)

>

> I just wanted to let ya'll know how he did yesterday with infusion

#2.

>

> The nurse went to stick him and the vein started moving so she had

to go

> into the other hand and it did the same thing. They then called in

the

> 'iv specialists' and they came to put it in and got it right away

and

> then we were on our way. Other than that little thing it was

uneventful

> and we got to meet the child life 'something or another' and they

will

> be coming in at some point every time we get an infusion and will

bring

> games/books/art supplies/toys or whatever the patient wants and

will

> spend about 45 minutes with us. This time it seemed to go faster

but in

> reality it was about the same time frame as last. We did take

books,

> games, watched videos (shrek for the first time), and also took

lunch so

> maybe that was the trick to help pass time. We go back on may 4th

for

> number 3.

>

> Don't know if I have told ya'll this or not but he hasn't had the

biaxin

> and allegra in the last couple of weeks and hasn't seemed to have

a

> problem with the sinus', which is a good thing.

>

> He is getting ready to go to a church function for the weekend and

we

> shall see how that goes becuase he is going without me. I am not

so

> concerned with the meds and health issues because I know that

there is a

> fire-fighter that will be with our group and I will be sending the

> machine with him as well.

> Cassie

>

[Guest guest]

Glad to hear the second round went well! Hope he has fun this

weekend -- and sounds like you can rest easy too, knowing he is in

good hands!

-Rogena (Mom to 4 boys, including Cole -IgA & IgG Subclass Def,

GERD, possible Celiac)

>

> I just wanted to let ya'll know how he did yesterday with infusion

#2.

>

> The nurse went to stick him and the vein started moving so she had

to go

> into the other hand and it did the same thing. They then called in

the

> 'iv specialists' and they came to put it in and got it right away

and

> then we were on our way. Other than that little thing it was

uneventful

> and we got to meet the child life 'something or another' and they

will

> be coming in at some point every time we get an infusion and will

bring

> games/books/art supplies/toys or whatever the patient wants and

will

> spend about 45 minutes with us. This time it seemed to go faster

but in

> reality it was about the same time frame as last. We did take

books,

> games, watched videos (shrek for the first time), and also took

lunch so

> maybe that was the trick to help pass time. We go back on may 4th

for

> number 3.

>

> Don't know if I have told ya'll this or not but he hasn't had the

biaxin

> and allegra in the last couple of weeks and hasn't seemed to have

a

> problem with the sinus', which is a good thing.

>

> He is getting ready to go to a church function for the weekend and

we

> shall see how that goes becuase he is going without me. I am not

so

> concerned with the meds and health issues because I know that

there is a

> fire-fighter that will be with our group and I will be sending the

> machine with him as well.

> Cassie

>

[Guest guest]

YAY! I'm sure is feeling such relief too, even with the other

to still deal with! I bet more improvement is yet to come with gains

already in this short time!

>

> Hi All,

>

> Just wanted to let you know that since starting her on 25mg of Zoloft

> Monday, is showing signs of improvement. She had some trouble

> getting to sleep, but we now give her the pill in the a.m. instead of

[Guest guest]

>Sounds Great!! I know you are both pleased. Good News is

encouraging to all of us!!

> Hi All,

>

> Just wanted to let you know that since starting her on 25mg of

Zoloft

> Monday, is showing signs of improvement. She had some

trouble

> getting to sleep, but we now give her the pill in the a.m. instead

of

> before bed, and so far that seems to be working.

>

> Tonight for the first time in weeks she took her bath with minimal

> fuss, including getting out of the tub and dried off. Plus, also, a

> first in weeks, before bed she went to the bathroom and came out

> smiling, " I don't have that feeling! " (Feeling like she still has

to go.)

>

> Her clothing issues, which we worked SO hard on in the past to

> overcome, are back full force, but at least other areas are

improving.

> My goal for next week is to get her to be able to take the bus

again.

>

> Just needed to share with those who understand what a big step

> something like this is!

>

> nna.

>

[Guest guest]

nna wrote:

> Hi All,

>

> Just wanted to let you know that since starting her on 25mg of Zoloft

> Monday, is showing signs of improvement. She had some trouble

> getting to sleep, but we now give her the pill in the a.m. instead of

> before bed, and so far that seems to be working.

Congratulations! And only a few days!

Dina

[Guest guest]

Thanks for sharing the good news about 's progress. As we all keep hearing

and saying on this list, baby steps ...

P.

nna <mdonlon@...> wrote:

Hi All,

Just wanted to let you know that since starting her on 25mg of Zoloft

Monday, is showing signs of improvement. She had some trouble

getting to sleep, but we now give her the pill in the a.m. instead of

before bed, and so far that seems to be working.

Tonight for the first time in weeks she took her bath with minimal

fuss, including getting out of the tub and dried off. Plus, also, a

first in weeks, before bed she went to the bathroom and came out

smiling, " I don't have that feeling! " (Feeling like she still has to go.)

Her clothing issues, which we worked SO hard on in the past to

overcome, are back full force, but at least other areas are improving.

My goal for next week is to get her to be able to take the bus again.

Just needed to share with those who understand what a big step

something like this is!

nna.

Our list archives, bookmarks, files, and chat feature may be accessed at:

/ .

Our list advisors are Gail B. , Ed.D., Tamar Chansky, Ph.D.(

http://www.worrywisekids.org ), Dan Geller, M.D.,Aureen Pinto Wagner, Ph.D., (

http://www.lighthouse-press.com ). Our list moderators are Birkhan,

Castle, Fowler, Kathy Hammes, Joye, Kathy Mac, Gail

Pesses, and Kathy . Subscription issues or suggestions may be

addressed to Louis Harkins, list owner, at louisharkins@... ,

louisharkins@... , louisharkins@... .

[Guest guest]

Thanks for sharing the good news about 's progress. As we all keep hearing

and saying on this list, baby steps ...

P.

nna <mdonlon@...> wrote:

Hi All,

Just wanted to let you know that since starting her on 25mg of Zoloft

Monday, is showing signs of improvement. She had some trouble

getting to sleep, but we now give her the pill in the a.m. instead of

before bed, and so far that seems to be working.

Tonight for the first time in weeks she took her bath with minimal

fuss, including getting out of the tub and dried off. Plus, also, a

first in weeks, before bed she went to the bathroom and came out

smiling, " I don't have that feeling! " (Feeling like she still has to go.)

Her clothing issues, which we worked SO hard on in the past to

overcome, are back full force, but at least other areas are improving.

My goal for next week is to get her to be able to take the bus again.

Just needed to share with those who understand what a big step

something like this is!

nna.

Our list archives, bookmarks, files, and chat feature may be accessed at:

/ .

Our list advisors are Gail B. , Ed.D., Tamar Chansky, Ph.D.(

http://www.worrywisekids.org ), Dan Geller, M.D.,Aureen Pinto Wagner, Ph.D., (

http://www.lighthouse-press.com ). Our list moderators are Birkhan,

Castle, Fowler, Kathy Hammes, Joye, Kathy Mac, Gail

Pesses, and Kathy . Subscription issues or suggestions may be

addressed to Louis Harkins, list owner, at louisharkins@... ,

louisharkins@... , louisharkins@... .

[Guest guest]

In a message dated 5/5/2006 9:50:44 P.M. Eastern Standard Time,

mdonlon@... writes:

Tonight for the first time in weeks she took her bath with minimal

fuss, including getting out of the tub and dried off. Plus, also, a

first in weeks, before bed she went to the bathroom and came out

smiling, " I don't have that feeling! " (Feeling like she still has to go.)

CONGRATS nna!!!! Give your dd a big hug from the board... so glad to

hear you are all experiencing some relief. You've made progress on the

clothing issues before, you will do it again. Hopefully the meds will make

that a

little easier to do this time around.

LT

[Guest guest]

wow! what great acheivements. Only this group would understand what

big milestones these things are. Good luck!

>

> Hi All,

>

> Just wanted to let you know that since starting her on 25mg of

Zoloft

> Monday, is showing signs of improvement. She had some

trouble

> getting to sleep, but we now give her the pill in the a.m. instead

of

> before bed, and so far that seems to be working.

>

> Tonight for the first time in weeks she took her bath with minimal

> fuss, including getting out of the tub and dried off. Plus, also, a

> first in weeks, before bed she went to the bathroom and came out

> smiling, " I don't have that feeling! " (Feeling like she still has

to go.)

>

> Her clothing issues, which we worked SO hard on in the past to

> overcome, are back full force, but at least other areas are

improving.

> My goal for next week is to get her to be able to take the bus

again.

>

> Just needed to share with those who understand what a big step

> something like this is!

>

> nna.

>

[Guest guest]

Do you have Dr. Lowe's number?

Fritze <jmfritze@...> wrote: ,

I am not all that familiar with your situation, but what doc does Gwynn go to

right now? We are in MN and we saw Hoyt's office. They are very sweet but

I was not comfortable with some of what I was told there. We have also seen Dr.

Lowe in Rochester. He used to be through mayo, now is at the Olmsted Medical

Center right down the street. He sees a lot of PID patients and I was given his

name by IDF. He was very good. Let me know if you want to talk to someone local,

you can always email or call me! Good luck!

Ana 16 mo

__________________________________________________

[Guest guest]

I hope you can get a brake . Is

there any group that may be able to provide you with some Respite help?

Charlotte

From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of Jen

Sent: Wednesday, June 07, 2006

10:48 AM

Autism and Aspergers Treatment

Subject: Update

Well, I am

going to be home for awhile. I totally broke down at work yesterday

crying over how much stress I am under. I will be working from home for a

while until I can get this situation under control.

http://myspace.com/diegowench

__________________________________________________

[Guest guest]

I really don't know. I put in a bunch of paperwork but I don't know how long it will take or how this is going to pan out - I am absolutely terrified of losing my job. Charlotte <scottdesigns@...> wrote: I hope you can get a brake . Is there any group that may be able to provide you with some Respite help? Charlotte From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of JenSent: Wednesday, June 07, 2006 10:48

AMAutism and Aspergers Treatment Subject: Update Well, I am going to be home for awhile. I totally broke down at work yesterday crying over how much stress I am under. I will be working from home for a while until I can get this situation under control. http://myspace.com/diegowench __________________________________________________