[shainamsu]

i just posted this in another thread, but it's sort of buried, and i wanted as many people's opinion as i can get!

we've inquired on a little girl from an online photolistings. they can't tell us her illness for confidentiality reasons. this is what they CAN say:

she has a life expectancy of up to young adult, possibly 30, but that might be stretching it a bit.

she's developmentally on track, and is in a normal preschool class.

she's just turned three.

her illness has no cure.

it requires lifelong medications and doctor's visits.

she's in a foster home with other children, so i'm assuming it's not easily transferrable.

she's very small for her age.

she has normal mobility.

she is "otherwise healthy" except for this illness.

could it be HIV? if so, wouldn't she be exhibiting at least SOME other symptoms?


any help is appreciated, i'm SO curious about this!!!

[CaddoRose]

Doesn't sound like HIV. There is no life expectancy for HIV now and with the specifics of "young adult, possibly 30" sounds more like a genetic condition. I think cystic fibrous is one that can limit life expectancy.

Just thought of another one: Fanconi Anemia which has no known cure.

[MommyAlysia]

didn't you say in the other thread this disease was related to drugs? thats what is really throwing me off. When can they tell you? Not until you are matched?

[Mummy_Big_Bird]

Hep C maybe?

[momraine]

cistic fibrosis (sp?) maybe?

[parenting-over-40]

Tough to say. Cystic fibrosis patients are living to be about 35 years old. However, CF is a genetic related illness and not drug related. On the other hand, Hepatitis C is drug related. However, there is not necessarily a time frame of how long the person will live with Hep C. It is an illness that they learn to manage throughout life.

I am not an healthcare expert. I just found this out with quick research via Google Search.

I did not look here but I like to use WebMd.com for medical information.

[cecegarrett]

Sickle Cell would be my guess. Are you positive it's drug related? If it's not.. I would guess Sickle Cell.

[shainamsu]

it is drug-related, and they can't reveal the specific illness until we're matched!

with the research i've done today, i've seen that HIV patients that didn't convert to full-blown AIDS can live a long life as long as they take their meds. from what i've read, they should know by 18 months if their HIV will convert or not, and that will give them a much shorter life expectancy. 60% of AIDS children die by 3, one site said.

so, i wouldn't guess HIV, either.

i don't know. maybe just an uneducated social worker...? blah. i'm so curious!!

i mean, i know that just b/c we're matched doesn't mean we're obligated, but i'd still like to know!!

[shainamsu]

also -- her being HIV positive doesn't change our opinion. we're still open to that, for sure, i just don't like being kept in the dark about it. i guess, maybe, b/c we're from a different state?

[parenting-over-40]

Originally Posted by shainamsu

also -- her being HIV positive doesn't change our opinion. we're still open to that, for sure, i just don't like being kept in the dark about it. i guess, maybe, b/c we're from a different state?

It's frustrating being kept in the dark. Like you, I would want to know too. If you do become this child's forever parent, you deserve to know what you are up against before you commit. Of course, they are going to reveal that information before you commit. However, I don't blame you one bit wanting to know now.

Hopefully, like you said it is a CW that doesn't have all the details yet or something.

A CW asked me one time if I would be willing to take on the 2 year old cousin to my then foster baby. I said I would need to know more about the child but probably. The cousin was placed with a relative. However, I later found out he was 8. Thus, CW don't always have accurate information.

Blessings to you as you make this big decision when you do find out. Blessings to this child that they are able to live a long productive life and the CW is wrong about this illness.

[greenmama]

I would guess Cystic Fibrosis.

[Fatcat]

they won't tell you more. I inquired about a little boy and got a detailed medical history.

My guess is hepatitis B?

[Nevada Jen]

Assuming the case worker is not just smokin crack (as in completely wrong), I think think I would guess HIV. There are laws in many states with specific separate clauses forbidding release of someone's HIV status which might be why she cannot tell you.

The other thought that comes to mind is a heart defect related to drug use.

[carlychan]

Originally Posted by Nevada Jen

Assuming the case worker is not just smokin crack (as in completely wrong), I think think I would guess HIV. There are laws in many states with specific separate clauses forbidding release of someone's HIV status which might be why she cannot tell you.

The other thought that comes to mind is a heart defect related to drug use.

I have to agree with this. If it was CF I would think they could tell you. They can tell you if a child is blind or has diabetes. Why not CF? HIV is the ONLY thing I know of that they (by law) can't disclose.

[sandysis]

Originally Posted by carlychan

I have to agree with this. If it was CF I would think they could tell you. They can tell you if a child is blind or has diabetes. Why not CF? HIV is the ONLY thing I know of that they (by law) can't disclose.

Can they disclose Hep B or C?