Re:

[Guest guest]

Eggs are gfcf. I asked the dietician on-line when I had started the diet. I

use organic eggs though. I think the hormones and antibiotics harm my son

and make him more hyper than usual.

[Guest guest]

> Is it too late for to start using GH?

>

Hi

My son Adam is 8, we live in Canada, so I can't help you with doctors. But we

got our RSS

diagnosis around 2 and were not offered GHT until this July. At the time Adam

weighed 34 1/2

lbs and was almost 42 " . We didn't start GHT until Jan. 3rd 2001. My endo felt it

was not too

late but I had doubts, so I emailed Dr. H. with his stats and she felt it was

not too late

either. I think 's bone age is a contributing factor. Adam's bone age is 1

to 2 years

behind which means he has some good growth potential. Over the summer he went

into a growth

spurt (prior to GH) so at the beginning of this month he weighed 37 1/2 lbs and

was 43 "

tall. In July he also looked like a 4 year old (my doctor told me to medicate

him eg.

tylenol as a 4 year old). And he's in Grade 3.

Hope that helps with your decision.

Debby

revelsvt@... wrote:

> Hello everyone,

>

> My name is Revels and I just joined the listserve for RSS parents and

> have a 7 year old daughter, , with RSS. was born by C-section at

> 32 weeks weighing 3 lbs. 4 oz. and was 15 1/2 inches long. She was

> diagnosed with RSS at 5 weeks of age showing a lot of the characteristics of

> RSS, downturning mouth, excessive sweating, IUGR, large head and a

> triangular shaped face. I feel very fortunate because didn't need a

> feeding tube and other than being very small and gaining weight slowly she

> was very healthy. She was in the hospital for 6 weeks mainly just to gain

> enough weight to maintain a normal body temperature outside the incubator.

> I have been a member of the Magic Foundation since it's inception and I was

> also a member of ACRSS (the Association for Children with RSS, which I think

> is no longer around) which has been such a great source for information

> concerning RSS. is not currently on any medications to help treat

> RSS. My husband and I consulted a endocrinologist when was 3 years

> old and at that point we decided not to treat her with GH and not consulted

> with an endocrinologist since. We did try using Periactin to boost her

> appetite for a while but it didn't seem to help any. is a pretty good

> eater and is growing at her own pace but my husband and I are thinking about

> the use of GH. There seems to be more information available about GH

> treatment available now than there was when was 3. is now 7

> years old, weighs 29 lbs., is 41 inches tall, is in the first grade and is

> about the size of a 4 year old.

>

> 1. Is it too late for to start using GH?

>

> 2. Does anyone live in the ton South Carolina area and can

> recommend an endocrinologist?

>

> 3. Should we also consider using Periactin again?

>

> Thanks for any suggestion you can offer. Also, thanks for all the wealth of

> information you have given me already.

>

> Revels

> ton, SC

[Guest guest]

, I am so happy for your father that the Botox injections are

working. I hope this takes care of this distressing symptom. I am also so

angry that no doctor suggested this for my mother Joyce -- she even saw a

neck surgeon and a neurosurgeon, so her doctors knew what she was willing to

undergo to get the neck up. If this helps your father significantly, I am

writing to my mother's MDSs to let them know this is an option for some

people with this symptom. Please keep us updated. Debbie

[Guest guest]

Thanks , sorry to hear that Warren is having a hard time. My sister has moved in to help me with him. I have more of an opportunity to get out than I did. Hope someone does the same for you. Yes, we are very fortunate to have this group. Has been a blessing to me. take care, Kathy DaveHi everyone,I know some on the list think that there is different stages of MSA. I sawsomeone say that a doctor told her that her husband was in the later stageof the disease. Dave is deterioating rapidly. There has been a change in thelast month. He has his bad days and usually bounces back but now he doesn't.I am really worried about him. He is so much weaker, even his voice is weak.He told me this am that his neck mucles was so weak that he felt like hecouldn't hold his head up. He also complains of his back muscles beingweaker. The longer he stands the lower he stoops until he is bent way over.He can barely move his feet and I noticed him at supper having a harder timegetting the fork to his mouth.My question is, how do you know for sure if it is a different stage in thedisease? Will he bounce back this time or is he getting to the point ofbecoming bedridden? I know that infection can cause his condition to worsenbut I believe that is not whats wrong. He is on antibiotics and his urinelooks much better. Every time that he gets down I wonder if this is thetime that he wont get back up. I thought about going to see his doctor andasking him to tell me straight what he thinks about his weakness. He is avery good doctor and tries to keep us up beat, he seems to really like Davea lot and sometimes I think he doesn't have the heart to come right out andtell us what to expect.I am afraid, hurt and trying very hard to keep his spirits up. I wish I knewwhat to do to help him. I wish you all knew him, he is such a fine personwith good moral beliefs. He never complains and is always so pleasant to bearound. He is a good family man and loves our family so much.Sorry the letter is so long but tonight I really need to talk to someone.Thanks for being here, Kathy<br clear=all><hr>Get your FREE download of MSNExplorer at <ahref="http://explorer.msn.com">http://explorer.msn.com</a><br></p>

[Guest guest]

Dee, Alena and I are doing a happy dance for you!!!!!!! Keep us posted on your continued relief!! Love, ~Alena's Mom

Re:

Well fellow Hivers I have gone now for about three weeks without a hives. I have tried testing myself my doing excersise and putting pressure on my skin and there is nothing that happens. I will stop all my meds this coming monday and I 'm looking forward to. Now it will be easier for me to lose weight I have lost about 15 pounds so far and need to lose 15 more. I will keep all in my thoughts because I know how bad it can make you feel. And I do feel for everyone I wish there was a magic wand to wave around and everyones CIU would be gone. Or that everyone could find there cure best wishes to all and I will keep you all in my prayers. Dee C2d24@... Louisville,Kentucky ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~If you do wish to unsubscribe then you can click on the following link: urticaria-unsubscribeegroups~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new.Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings.

[Guest guest]

I've been reading the postings, but have entered a period of difficulty for

my daughter & my family so I haven't had much to say.

I can not believe the emotional toll that the urticaria & angioedema has

taken on her and on our family life. I can't believe it when I hope that

she'll " just have hives " today (or any day) and not angio because the angio

is so painful for her...Right now my daughter is becoming increasingly

skittish about what most people would think of as " the normal activities of

daily living " ....going to play with friends, going to new places, going out

at all. Right now, she's back on pred, she's out of school, my husband & I

have shifted work hours, she doesn't want visitors in our house because she

doesn't want anyone to see her face. She's afraid food is making her sick.

She's afraid that we'll give away the dog. She's afraid she'll die in her

sleep.

I'm tired. Not that how I feel is nearly as important as her health, but

this really is exhausting. I figured that between work, arranging schedules,

setting it up so that she can take her final exams at home (yes, the school

tried to give me a hard time about this, but school personnel finally agreed

to allow it after I explained that this is a 504 issue & she is also

identified by the district with a disability [she has dyslexia], so her

program needs to be set up to meet her " unique needs " ), canceling the

babysitter, arranging a ride for my other daughter to get to school by 7:30 &

trying to get through to the doctor & all the call backs, and convincing my

husband that it was important that he keep his commitment to be the cook at

field day at my other daughter's school instead of both of us keeping vigil

at home - that I had at least twenty phone calls just this morning, in

between trying to keep calm. (Her face was so swollen with this last

episode that she couldn't open her eyes. She didn't want to miss school so

she had her sister bring her a towel filled with ice & had it on her face for

a half hour before they woke me up at 6:15 a.m.)...so, here we are with no

answers (I'm most especially tired of not having answers & waiting for test

results), drugs that I hate (and her weight is going up since the Pred is

pretty constant), and doctors who say things like " well, did you take her in

for the one-hour test " to which I said " what test " ... " the one I wanted you to

get for her when this happened again " ...and (sorry, I couldn't help

it)... " the one you didn't order? " - " Oh " ....And the angio was so bad this

time that instead of just the swollen face with flakey skin, she had blisters

that broke & got " weepy " ....

I finally got to work today at 4:00...my assistant quit (she's great, but her

trip to the office is about 1 1/2 hours each way!) and my desk is piled high

& deep. To top it off, a part time assistant showed up for work with three

of her kids in tow (not appropriate in environment in which I work) and my

boss is looking at me as though I've lost both my mind & my hold on the

operations of the business. Not good. And then my son called...he just took

a job with a design/build landscaping firm out of state...it's what he went

to college for..and he is having allergic reactions to the chemicals he works

with! (Hey, Mom, do you think I could go back to college for a different

degree because this one is making me sick?!?)

I'm frustrated that my daughter can't have a " normal " life because the only

thing consistent about the urticaria/angioedema is it's inconsistency...we

always hope for good days, but they are getting fewer...so while the

neighborhood kids are swimming in my pool, my own daughter can't leave the

house (the sun really does a number on her). And I'm worried that so much of

my time & attention is taken up with these issues that my youngest child

isn't getting the attention that she deserves. My youngest daughter is

exceptionally bright & she's seen the crisis with (and in the past

with here brother) & I'm afraid that she might be learning that you need to

be sick to get attention...I've made it a point of taking her out to lunch &

leaving Dad & Rach at home, reading with her, shopping, etc., but I can't do

anything without the cell phone turned on " just in case " ....

I've gotten comments like " well, I have allergies & I make it to school "

(from a teacher)....to " Must be anxiety over finals " (school social

worker)...to " I'm sure that she'll outgrow it....my ______________

did " ....I'm all for being positive, but she's had the urticaria her entire

life & her symptomology is getting worse, not better.....I should be glad

someone else is " sure " that she'll improve, because I'm not....to " Can't you

take her to some specialist or something " (my boss -- who apparently isn't

paying attention because I've told him that we have!) Sorry, I'm venting but

I'm glad for a few things. I'm glad that I can write this to folks who know

what this is & what an affect it has on quality of life. I'm glad that I

learned some better questions to ask the doctors. I'm glad that I put her on

calcium instead of finding out that she should take it only after a broken

bone or two. And I appreciate everyone here who has shared part of their own

story (challenges & triumphs) because I know that we're not alone in this &

that someday we'll have to find the answers or at least better interventions

for kids (from 0 - 90) who are afflicted with this.

I guess this letter is my own " personal pity party " ...is it too self

indulgent to say that I want a normal life for my child, for my family, for

me? How does anyone do this?

Regards to all & hope that everyone is doing well.

Irene

[Guest guest]

Irene...We do it because we basically have no choice.

I thing Myra would help you a lot in understanding your daughter and could help your daughter understand. And you are so right about the dumb things people say. It pisses you off! After a while, (this was about me-not a child), when someone would say they have allergies, what doctor has see seen? Isn't she taken the medicine right? Is she cheating on her food allergies? I just looked at them. I just stood there and looked at them and cocked my head to the right and looked at them. Usually they get it.

But even then. And the worst part is --- you know how confusing this is to them. You know how confusing this is to you. But...do you know how confusing this is the doctors?

My best advice is first try very hard to stick to the same doctor, even when they don't want you. I know you won't and I know sometimes you can't and you will know the next guy can help....but maybe not.

Take her in at her worst and say, What are we going to do? Do not....do not...say let's order these tests and she how things go from there. Do it now. Test her now. She is really really sick now. Test her now. Urticaria is bad and it is very very painful. I understand her feelings and how she looks. Even when you love someone, it's still a bit weird to see their forehead protruding out with this red stuff and then the blisters....I had them once. I almost gave up.

I'm a gotta go find out right now person...but realistically you need to let them start small. Blood tests. Urine tests. If she has had this longer than 6 weeks, do not consider allergy and food testing. It will not help.

Trust me...she knows which foods make it a little worse. She needs to get some additional mineral and vitamin supplements. Vitamin C (and iv drip is good) will help to do an end run on the immune system. Tell her that we all promise she will get through this. She will one day be okay. Patti Promises.

Even though you are fragile and your family is falling apart and you work with stupid people and you think that you would rather be a work because you can forget about her pain for a little while...try to read a lot on this.

Look for all the clues. If she is blistering...perhaps she needs to be hospitalized. The Jewish Center in colorado has a method of Protein IV for a patient such as her and for 6 months she is closely guarded and watched. She won't feel sick because she will be nutritionally balanced. Perhaps someone in your area might follow their information. If after 6 days and shes okay, then it might be a wheat or food problem. If not, then you can work at little faster at finding answers.

I know this may seem a drastic approach, but from someone who has traveled this road for 14 years...Drastic needs to be a little more action.

Please, cry in your pillow and just be thankful that right now you have a daughter and be very sure your work, others and friends known and tearfully explain that this could kill her! Now, we are not going to let that happen, but that is not a lie.

I hope you have comfort soon.

Love, Patti

[Guest guest]

How old is your daughter?

<<< I've gotten comments like "well, I have allergies & I make it to school" (from a teacher)....to "Must be anxiety over finals" (school social worker)...to "I'm sure that she'll outgrow it .... my ____________ did".... >>

>

REPLY -----> You don't have to tolerate comments like this. Call or go to the Board of Education (or whomever) for your schools. Remind them you have a daughter with a verified illness and will not tolerate uneducated and demeaning remarks from the school employees. Insist that she/he firmly remind the school staff of their legal responsibility to follow the 504 ... ALSO .... She should have an IEP ... that is Federally Regulated for a recognized disability. This would be under the heading of "other illnesses."

ALSO ----> Write a letter to the teachers: with a CC also to the Special Education Department, the Principal, and the Superintendent of the school system. I honestly know what I am talking about; my daughter has an IEP for ADHD. They have to be reminded they are not following what has been signed and decided upon "for the betterment" of your daughter's education. A 504 is to "even" the playing field, to give her as equal a chance to achieve as her classmates. If a 504 is not enough, send a letter, dated, asking for an IEP.. They are then legally bound to set up testing, etc., to see what more they can do for her.

ALSO --- If she is physically unable to attend school, after a certain period of time, the school system must send a home teacher for her ... You might want to check on that. they don't always suggest it to you.

Personal Pity Parties are really the best kind (at times) ... Especially when they are acknowledged by your peers as being a valid long-overdue Pity Party.

[Guest guest]

Irene -

I am pleased to hear you have an IEP. I understand that you say the IEP doesn't directly address this situation. I feel strongly that because she has an IEP, it should address it "indirectly" because she is missing school ... it is affecting her attendance which affects her academic performance.

Barbara

My daughter turned eleven in May. She is classified in our district & has an IEP, but the IEP doesn't address this situation (she has dyslexia). She is very bright, a natual comedian and is great at most things athletic...that is what makes this especially hard...she's lethargic, exhausted, depressed...and in pain. Life as we knew it has ceased to exist since the onset of the angio...

[Guest guest]

Barbara --

You're right that the IEP needs to address the attendance. Although

has missed inordinate amounts of school this year, I didn't even think that

it should be added to her IEP. (so much for an integrated approach) -- If

this continues as it is in the fall, we'll have to bring it back to committee

to address the home tutoring issue during extended absences. Part of the

problem with that is that she feels so crappy & so immobilized that I don't

know how well she can attend to learning when she's in pain.

is fond of saying that she's not a sissy. I'm afraid of pushing her

to far because she'll do everything she can to cooperate, but I'm afraid if I

don't push her, she'll develop the idea that she's so sick she can't do

anything. Since the last two episodes were the worst by far, it's been easy

to tell that she really was incapacitated. Today she is doing a little bit

better & has been a little more active than she's been (meaning she could

open her eyes though her face is still swollen, she's gotten dressed & at

least wanted to be around her sister & work on an art project for a little

while).

With each episode I keep hoping that this will be the " last " . I guess I have

to start thinking of managing this " for the long haul " since it seems that

that is where we're at.

Thanks for your thoughts.

Irene