Re: New to this group, I'm the Aunt

April 3, 2003

Hi Bethany,

you're whole family has a hard time right now :-((

Hope Dylan's parents can fix their problems, a sick child needs both

of them. Depression after the DX is quite usual, it took my wife and

me one year to get over it and function normally again. Of course it

will help your daughter a lot when you can support her with your

medical know-how.

There are others here on the list waiting for the diagnosis, I hope

the sweat test will give you a hint about what's going on. This said

I don't understand why a pulmologist orders a sweat test when she is

almost sure he has CF. That would in my opinion indicate a DNA test.

A little bit more expensive, but most certainly you have a clear

result then.

Good Luck for the test all the best for your family.

Peace

Torsten

> Hello,

>

> I have joined this group because I just found out my 9 month old

> nephew " most likely " has CF. He goes for his sweat test on Monday.

He

> was born premature and has had " colds and flus " basically

> since birth. In February this year he got bronchitus very badly and

> he always seemed " congested. " I even thought it sounded as though

he

> had rails. So finally last week his mother brought him to a

> pulmonologist in Syracuse (we live in NY). The pulmonologist told

> her she was almost positive he had CF. She gave her a bunch of new

> inhalation drugs to give him and gave her an appointment for the

> sweat test.

>

> I am a former EMT and have a large amount of medical knowledge

> because of my own heart/lung problems. As soon as told me CF

I

> was devistated as she was. The " funny " (ironic?) thing is that

> anytime he was with me I would clap his back because he always

> sounded so terrible. didn't understand why I did this and

> thought that I was nuts. She now knows about clapping and

> understands why I did what I did.

>

> I've read a lot of the posts in this forum and know that you guys

> will be able to help and support me. Dylan is a special little guy

> and I'm so sad that he has to go through this.

>

> I was wondering also if any of the Mothers out there went through

> depression or anything like that after learning of the dx and if so

> what did you do to get through it. I'm very very worried about

> because about 2 weeks ago 's boyfriend (and father of Dylan)

> left her and has only seen Dylan like twice since he left. She is

> extremely depressed, doesn't eat, doesn't sleep and crys all the

> time. I'm afraid that she is not going to be able to care for

> Dylan. Dylan's father is my husband's brother and he hasn't called

> us in weeks. He doesn't even know his son is " this sick " , I mean he

> knew he had bronchitus but that's it and he doesn't seem to care.

> It's a very bad situation. My husband is afraid for Dylan also and

> has considered telling that if she didn't get some help then

we

> would call Child Protective Services on her. We are foster parents

> and are legally obligated to report abuse or neglect of a child.

> About a month ago Dylan came to stay with us for about 4 days

because

> not only was Dylan sick, but his half sister, half brother, and

> were all sick also. His half sister went into the hospital and

> asked us to watch him. When my husband went to pick him up

was

> so weak she couldn't even lift the baby to give him to my husband.

> 's doctor just put her on Zoloft and told her she needs to eat

> and gain some weight or he's going to hospitalize her.

>

> This is just a crazy situation and we're not sure how to deal with

> it. Any advice or suggestions would be appreciated.

>

> -Beth

> " Anie " to baby Dylan

April 3, 2003

I am sorry about the diagnosis of your nephew, and the devestating condition

that your sister is in. Is there no other way you can think to support her

before calling child protective services? I understand your postion as we were

foster parents and have adopted a sibling group of three. Is there no way

they could live with you until she is back on her feet again? Threatening to,

or having her child removed will only make her depression worse. Your could end

up losing your nephew and your sister.

I only say things like this as we have also been on the opposite end of the

stick. After the kids we had were clear for adoption one of them had an

accident. The investigator accused us of actually killing and then

ressucitating the child and many other things. Medical evidence and the police

reports didn't support this at all. Every worker we had had to that point didn't

believe her, but the way it works in Texas they had to proceed with removing the

children any way. We contested their ruling and ended up hiring a lawyer and

fought to adopt anyway. The judge found in our favor as the evidence was

totally on our side. It also came to light that the investigator had falsely

accused many other foster parents of abuse and neglect as well. While the

ending was happy for us the year and a half of legal battling was sheer hell.

We had to endure weekly surprise drop in visits and all of the other things that

truly abusive/neglectful parents have to do in order to try to get their

children back.

CPS does have its place, and they can do many wonderful things. I even have

many friends who work for them here in Texas. But consider if there is a way

you could better support your sister before you call them.

Dawn, mom of 4, 7 and under, the youngest wcf

New to this group, I'm the Aunt

Hello,

I have joined this group because I just found out my 9 month old

nephew " most likely " has CF. He goes for his sweat test on Monday. He

was born premature and has had " colds and flus " basically

since birth. In February this year he got bronchitus very badly and

he always seemed " congested. " I even thought it sounded as though he

had rails. So finally last week his mother brought him to a

pulmonologist in Syracuse (we live in NY). The pulmonologist told

her she was almost positive he had CF. She gave her a bunch of new

inhalation drugs to give him and gave her an appointment for the

sweat test.

I am a former EMT and have a large amount of medical knowledge

because of my own heart/lung problems. As soon as told me CF I

was devistated as she was. The " funny " (ironic?) thing is that

anytime he was with me I would clap his back because he always

sounded so terrible. didn't understand why I did this and

thought that I was nuts. She now knows about clapping and

understands why I did what I did.

I've read a lot of the posts in this forum and know that you guys

will be able to help and support me. Dylan is a special little guy

and I'm so sad that he has to go through this.

I was wondering also if any of the Mothers out there went through

depression or anything like that after learning of the dx and if so

what did you do to get through it. I'm very very worried about

because about 2 weeks ago 's boyfriend (and father of Dylan)

left her and has only seen Dylan like twice since he left. She is

extremely depressed, doesn't eat, doesn't sleep and crys all the

time. I'm afraid that she is not going to be able to care for

Dylan. Dylan's father is my husband's brother and he hasn't called

us in weeks. He doesn't even know his son is " this sick " , I mean he

knew he had bronchitus but that's it and he doesn't seem to care.

It's a very bad situation. My husband is afraid for Dylan also and

has considered telling that if she didn't get some help then we

would call Child Protective Services on her. We are foster parents

and are legally obligated to report abuse or neglect of a child.

About a month ago Dylan came to stay with us for about 4 days because

not only was Dylan sick, but his half sister, half brother, and

were all sick also. His half sister went into the hospital and

asked us to watch him. When my husband went to pick him up was

so weak she couldn't even lift the baby to give him to my husband.

's doctor just put her on Zoloft and told her she needs to eat

and gain some weight or he's going to hospitalize her.

This is just a crazy situation and we're not sure how to deal with

it. Any advice or suggestions would be appreciated.

-Beth

" Anie " to baby Dylan

April 3, 2003

Well, I pretty much forced to go to the doctor and she did. He

put her on zoloft and told her she needed to eat and sleep, she lost

over 20 pounds in the past few months. If she didn't gain some

weight and quick he's going to hospitalize her.

Unfortunately as much as I'd like it and the kids can't live

with us right now because my other sister in law and our niece is

living with us. Also has two other kids and it just isn't

feasable right now.

We are holding off on calling CPS for now as long as she goes to the

doctor and does what she needs to. I call her like every other day

to check in with her.

Monday Dylan goes for the sweat test. told me yesterday that

he is really bad right now. He's all congested and as she

said " isn't breathing too well. " I really wish we lived closer than

we do. Right now we are about 90 minutes away from them so we can't

just " pop " in anytime.

Thanks for everything,