Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
August 02, 2014, 02:41:09 AM

Login with username, password and session length


Members
Stats
  • Total Posts: 632721
  • Total Topics: 47930
  • Online Today: 222
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online
Users: 6
Guests: 174
Total: 180

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: 18 yr old son just diagnosed  (Read 6529 times)

0 Members and 1 Guest are viewing this topic.

Offline amanda65

  • Member
  • Posts: 3
18 yr old son just diagnosed
« on: September 10, 2009, 09:44:36 PM »
I really need advice. My wonderful 18 yr old son was diagnosed HIV+ in June. His CD4 is 551, 36% VL 18,000 (July 09)- so that's reassuring for now (from what I've learned on the internet). However, after seeing a PA at the local clinic (his pediatrician referred him there), he's decided he does not want to get any more tests or go to any more doctor appointments. I'm in a state of panic. I was really afraid this would happen. I think if he'd seen a private physician he may not have made this decision. He is a very mature, level-headed young man, so this has completely taken me by surprise.

So my question is - what do I do? Nothing for now? I've offered to find a private physician, but he's not cooperating with that either.

Offline emeraldize

  • Member
  • Posts: 3,335
Re: 18 yr old son just diagnosed
« Reply #1 on: September 10, 2009, 09:57:30 PM »
Hi Amanda,

It's late, you're likely tired--but you're online. Please look to the upper left for a PM (personal message) from me.

Em

Offline confidentIwillbeOK

  • Member
  • Posts: 131
Re: 18 yr old son just diagnosed
« Reply #2 on: September 10, 2009, 10:43:30 PM »
It is good that you are reading a lot.  I was just diagnosed too (about 6 weeks ago).  May I suggest a wonderful book written by a well known expert (Dr. Joel Gallant) in HIV care? The book is called 100 Questions and Answers About HIV and AIDS and almost turned me around as much in the positive direction as my diagnosis did in the other direction.  Amazon has it:

http://www.amazon.com/100-Questions-Answers-About-AIDS/dp/0763750425

Here are some passages from the book:

  * (first sentences in the book) Your prognosis is excellent! HIV infection is not the progressive, fatal illness it was in the late 80's and early 90's.
    * With the right treatment, HIV infection is now a chronic, manageable disease.
    * If it didn't come with so much emotional, social, and historical baggage, people would react to the diagnosis the way they might if they learned they had diabetes or arthritis.....treatment for HIV is now easier and more effective than treatment for either of those diseases.
    * The development of antiretroviral therapy is up there with the discovery of penicillin as one of the most important and effective medical achievements of the 20'th century, and treatment keeps getting better in the 21'st.  ART has completely changed the outlook for people with HIV infection
    * If you take your medications faithfully, you can keep HIV in check indefinitely, having to change therapy only because of side effects or because better drugs come along....you should plan on sticking around for a long time, living long enough to die of old age
    * ...I do feel comfortable telling my patients that,together, we can almost eliminate the possibility that they'll ever die of AIDS
    * It may be hard to believe now but in time HIV infection may be low on your list of daily concerns, having little impact on the life you lead and the decisions you make
    * ....fortunately, treatment today is highly effective, and deaths from HIV disease are now mostly preventable in countries where therapy is available and affordable
    * ....treatment can prevent HIV infection from turning into AIDS, and it can restore the health of people with AIDS
    * It's also worth noting that most of the other diseases that we suffer from in the developed world are also chronic, incurable, but treatable diseases.  Think of diabetes, high blood pressure, coronary artery disease,  heart failure, arthritis - none of them curable, all of them manageable (though not always as easily manageable as HIV infection)
    * Someday - maybe not in my lifetime, we'll cure HIV infection
    * In about 15 years, we've seen HIV infection go from being an almost universally fatal, untreatable illness to a manageable, chronic disease and treatment became easier and better in the 10 years that followed.

So the answer for now is maybe do some more reading....become a little more educated yourself...and try again to have the discussion with your son when you are armed with a little more factual data? It certainly appears like there is no urgency in seeking treatment right now but he will probably want to get some more tests to establish a baseline, get resistance tests done, etc...

I think it will be important to find someone he can talk to an trust.  That will be the key.  Hopefully you and he can find someone.

It is obvious you love your son and care about him very much (you sounded like my mother "my wonderful son" is how she always refers to me  :)) so I am sure with a little more prodding by you he will come around and discuss this very important issue with you, a doctor, or other provider.

Hope it all works out,
Steve

P.S. I don't know if you are in a urban area or not but many cities have youth and young adult HIV support groups.....perhaps it would be a more comfortable environment for an 18 year old than a doctors office or clinic to get some more information.   

Offline next2u

  • Member
  • Posts: 1,761
Re: 18 yr old son just diagnosed
« Reply #3 on: September 10, 2009, 10:44:13 PM »
i started tying a response earlier but the browser closed. here's my best attempt at posting it again.

your son sounds like he has a good head on his shoulders. you also sound like a wonderful mom. afterall, he told you and has been open with you about his feelings.

during this time let him adjust to his status. his whole world has changed and he needs time to sort it out. it took me a lil over a year to wrap my head around it. this is normal. until then he should visit his doctor regularly for bloodwork (once every 3-4 months).

most of us don't need meds for at least 2 years (with the average easily going to 5). there are different schools of thought on when to start meds (right away vs tcell dropping below 350 or a high viral load). this decision is extremely personal and does not have to be made at this time.

you can also reach out to a local aso (aids service org) to see if they have recommendations for people/groups in your area to help your child adjust to his new status. sometimes they will have youth support groups or mens support groups with younger members. if he does not like this option he will have to figure out what type of support he needs. this place (poz.com) also has a wonderful support network.

give him time. keep reading and learning about hiv. for him it could be an information overload and it is not recommended to immerse oneself in hiv reading when newly diagnosed. little by little is the best way to eat an elephant. i hope this works out best for you and yours. if you need us we are here.

take care,
d
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline Robert

  • Member
  • Posts: 2,643
Re: 18 yr old son just diagnosed
« Reply #4 on: September 11, 2009, 12:34:39 AM »
Hi Amanda,

It's late, you're likely tired--but you're online. Please look to the upper left for a PM (personal message) from me.

Em

Amanda...you have to post like 3 or 4 times before you can receive the Personal Message (PM) from Em.  So just come back on line and post something short and succinct a few more times.

by the way, I agree with next2you.  Sounds to me like you have a good son and a good relationship.  I understand the panic on your part but just take a deep breath and love him whole. 

robert
..........

Offline confidentIwillbeOK

  • Member
  • Posts: 131
Re: 18 yr old son just diagnosed
« Reply #5 on: September 11, 2009, 08:20:51 AM »
Amanda...you have to post like 3 or 4 times before you can receive the Personal Message (PM) from Em. 

....um...I didn't know about that limitation.  If I sent a PM does it ever get to the recipient? Is there a way to tell?  I poked around in some of the "help" menus but could not find that info.....

Offline ruralguy

  • Member
  • Posts: 141
Re: 18 yr old son just diagnosed
« Reply #6 on: September 11, 2009, 09:41:34 AM »
Hi Amanda-

I'm pretty new at this myself - maybe 10 weeks now.  And it was a horrible emotional crash for me.  BUt I can offer a few thoughts. 

First, remind your wonderful son the he is the same wonderful son he was before.  Hug him and tell him that.  He needs to hear it more often than before.

Second, point him to web resources like this site and thebody.com where he can learn whatever he needs to learn. 

And last, his numbers are such that he is not in any near-term danger but he does need to find medical help is ok with.  Along with others here, maybe he can find a local support group his age.  TheBody.com has a teen forum:  http://www.thebody.com/cgi-bin/bbs/postlist.php?Cat=&Board=teens   and he might find that better than an in-person group.  He will quickly learn he is not alone.

These forums have been a great help to me and they will be to you too.  Come back whenever you feel the need for support.  You will find it here.  Let us know how you and your son are doing and good luck.

Dave
tested positive June 19, 2009
7/3/09 vrl 9000 cd4 - 300
8/14/09 cd4 - 350, 20%
started Atripla 9/14/09
10/5/09 vrl undetectable, WOW so fast!
12/28/09 vrl undetectable, CD4 - 615  27% cholesterol down, kidney function normal
4/26/10 vrl undetectable, CD4-600, kidney and liver numbers normal
9/9/10 vrl undetectable, CD4-685
1/3/11 vrl undetectable, CD4-700
all 2011 and Jan 2012 visits vrl undetectable CD4 ranged from 715-645
5/7/2012  vrl undetectable, CD4-615, all liver, kidney, lipids, heart functions, etc normal


On Atripla:  "Your mileage may vary"

Offline emeraldize

  • Member
  • Posts: 3,335
Re: 18 yr old son just diagnosed
« Reply #7 on: September 11, 2009, 12:38:25 PM »
Robert -- Amanda...you have to post like 3 or 4 times before you can receive the Personal Message (PM) from Em.  So just come back on line and post something short and succinct a few more times.
Thanks for including this. I didn't think about that. Em

Offline mecch

  • Member
  • Posts: 11,263
  • red pill? or blue pill?
Re: 18 yr old son just diagnosed
« Reply #8 on: September 11, 2009, 01:16:19 PM »
he's decided he does not want to get any more tests or go to any more doctor appointments. I'm in a state of panic. I was really afraid this would happen. I think if he'd seen a private physician he may not have made this decision. He is a very mature, level-headed young man, so this has completely taken me by surprise.

If he is mature and level-headed, he will eventually take control of his status and see doctors, etc.
While it is natural for you as his mother to panic, and then double panic because he is now in some sort of denial, this panic won't be helpful at all - I guess you know that. 

Your son just got hit by a bus and he is in shock.  Its good that you know about the infection, so he is not alone. Give him space and be calm and try again later on to encourage him to see ID about his health.

What he seems to need is a counselor - so you could suggest that, in a way that has nothing to do with HIV treatment - just treatment for the shock. 

Any kind of major health shock could produce this result in a young person -- so if you can deal with the shock before the HIV, eventually the HIV will be dealt with as well.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Robert

  • Member
  • Posts: 2,643
Re: 18 yr old son just diagnosed
« Reply #9 on: September 11, 2009, 08:21:31 PM »

....um...I didn't know about that limitation.  If I sent a PM does it ever get to the recipient? Is there a way to tell?  I poked around in some of the "help" menus but could not find that info.....

Hi confident.

to be totally honest with you, I'm just going from what I've read before when others complained about not receiving PM's.  I'm certainly no expert.  Ask ANN.   She's an administrator and knows all about this stuff.

robert
..........

Offline Joe K

  • Global Moderator
  • Member
  • Posts: 3,512
Re: 18 yr old son just diagnosed
« Reply #10 on: September 11, 2009, 08:32:53 PM »
Dear Amanda,

I'm sorry to hear about your son, but so glad you found your way to us.  You have been given some excellent advice and I just want to add a couple of thoughts.  The first is for you, as I have been positive for 25 years and the advancements in treatment will allow your son to live a long a fulfilling life.  His health right now is just fine and he has all the time in the world to start monitoring his health, but right now, he just needs some space to figure this all out.

That leads to my second thought.  Being a parent, I cannot imagine the fears that you hold for him and while I know you want to help him, this is one time when you need to let him find his own way.  Each of us must adjust to living with HIV and that journey is very different for each person.  While you believe you are only trying to help, by suggesting he see a certain doctor, may be seen by him, as fruitless, because he may see himself as unworthy of being helped.  What matters right now is how your son sees himself and his infection.  What he needs now is your unconditional love and support and part of that means that you will sometimes have to just bite your tongue.

Believe me when I tell you, that his knowing that you are there for him, no matter what, is what he needs right now.  Give him some time and in the meanwhile, learn about HIV and be ready to talk with him, but let him direct you on how everything will progress.  I know it hurts to just stand by and watch our children suffer.  I am not suggesting that you not intervene if you believe it necessary, but from what you describe, he just needs some time and when he is ready, I promise he will come to you.

edited to add:  I believe you must post 3 times for the PM function to become active.  Until then you cannot send or receive PMs.

Offline blondbeauty

  • Member
  • Posts: 1,784
Re: 18 yr old son just diagnosed
« Reply #11 on: September 11, 2009, 09:10:56 PM »
I am sorry about your sons diagnosis. I tested positive at a much older age but I have not told my parents to avoid them the suffering you are going through now.
What I can tell you now is that I have been doing great on treatment. My cd4 have climbed from 503 to 1086 in less than three years. My health and my life are perfect.
At the begining my thoughts were similar to your sonīs: I wont visit a Dr. till I need to be hospitalized. Fortunately in a few days I changed my mind at seaked for follow up and treatment.
I work full time as a flight attendant with constant jet lag, little sleep some days and I feel as good as when I was HIV negative.
After diagnosis I would have changed myself for anybody else (with no HIV) but now I am proud to be who I am with my HIV and everything.
If I was able to recover like that alone, with your help your son should do even better.

Juan (Madrid -Spain)
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline amanda65

  • Member
  • Posts: 3
Re: 18 yr old son just diagnosed
« Reply #12 on: September 12, 2009, 08:38:01 AM »
Thank you all for responding! You have helped more than you know.

Em, it took me a while to find, but I could read your PM in my email account. Thank you! To answer your questions-

He verbalized that he felt like the case worker at the clinic assumed we were in need of public assistance - which insulted him. He also said the PA upset him. I don't know what she told him, but I think it may have been things he needed to know but doesn't want to hear.

As far as the gap between the Dx in June and seeing the ID in September. Well, I'll make a long story short - He was received his results from his pediatrician in late June. The pediatrician gave him a lab order for CD4 and the usual and told him he'd already spoken to the ID and he should follow up there. It took my son a couple of weeks to get the nerve to get labs drawn and then I had a terrible time trying to convince the ID office that they had the records required to schedule the appointment - they wouldn't schedule w/o a western blot. This was all done by mid July. Finally, I was able to make him an appointment - earliest available was late August. He arrived at 10am only to be told he could not be seen because as a new patient he was supposed to arrive an hour early. I had even called the day before to confirm the time!. So, he rescheduled - the next earliest was 9/8. FYI - I asked his permission before making the appointment.

Again - thank you all!

Love - Amanda

Offline blondbeauty

  • Member
  • Posts: 1,784
Re: 18 yr old son just diagnosed
« Reply #13 on: September 12, 2009, 09:38:42 PM »
Amanda, I understand you want to get things done as fast as possible, but a few months delay with your sonīs good counts, will not make any difference. Take your time and do things calmly.
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline Stone

  • Member
  • Posts: 55
Re: 18 yr old son just diagnosed
« Reply #14 on: September 13, 2009, 06:30:17 AM »
Hi Amanda!  I am so sorry to hear of your son's diagnosis.  I am dealing with an unplanned pregnancy with my 18 year old (which I understand is much less serious than what you are dealing with right now) so I can understand the inclination to take the bull by the horns and make the arrangements for your son.  They have been adults for such a short time and we have been taking care of them for so much longer.  That being said, I think it is important to take a step back and empower them to take care of things themselves now.  Be available for questions and for support but let him know that you have faith in him and that you trust him to do what he needs to do for himself.  My brother has HIV and I have had to remind myself to stand down at times (mecch has reminded me to do this as well) because at the end of the day it really is their deal and they have to do it for themselves.  Just my two cents 

Offline onemoretime

  • Member
  • Posts: 142
Re: 18 yr old son just diagnosed
« Reply #15 on: September 13, 2009, 05:17:12 PM »
amanda,

I am glad he got the appointment for the Id dr.   You will both be fine... I too didn't tell my parents becuase I know it will scare them... I didn't want them to suffer.. I am starting to rethink this decision.  I might tell them and just explain everything is fine.

When i was diag.   I went the next morning to the ID.  I was a reck.. I went to the dr and then went to work.. I was not in good state for sure... HIV is a strange thing.. we all know we are stable and have great meds these days... but the fact that we know what HIV AIDS was like 20 years ago,  still makes it play mind games on us.. I notice when i spend too much time on line in here or other hiv sites.. I get depressed and confused..  I find its best to just live my life.. I am a planner.. so having hiv makes planning for retirement and future a little harder.. but staying in today is great advise.

Tell your son there is alot of support here if he ever needs it...
08/04 diag 490 cd4 vl 50,000
10/25/05 436 50,513 hvb 1.1 billion
12/13/05 truvada sustiva
02/16/06 742 und, hpb 63,000
04/27/06 740 und hpb 60,000
01/05/07 458 und hvb und
03/08   470 undetectable still on atripla. Non smoking (chantex)
08/08 cd4 550 undetectable hiv, Hep B UND. Atripla
06/09  cd4 444, vl undetectable testo 130
09/09/09 CD4 687 46% UND  Testo 213 started androgel
10/12/09 cd4 682 46% und testo 597
01/12/10 cd4 842 48% und testo 434
041010 cd4 693  53% testo 492
100410 cd4 568 48% testo 523
012711 cd4 523 hcv 56 testo 596
083011 cd4 280 Hcv/HIV und
042912 cd4 158 hcv /hiv und, was on hep c for 11 months. do have ssdi filed and getting LTD
061912 cd4 151, bactrum, hep c and hiv und
071712 cd4 287 52% HIV HCV und
112012 cd4 520

Offline J.R.E.

  • Member
  • Posts: 7,099
  • Joined Dec-2003 Living positive, since 1985.
Re: 18 yr old son just diagnosed
« Reply #16 on: September 13, 2009, 07:53:18 PM »
Hello Amanda,

Sorry to hear about your sons diagnosis. Also glad to hear that you have the appointment set up.

A couple of years ago I posted this from the Sunday Parade section of the newspaper.  While not specifically dealing with an HIV diagnosis, See if it may be helpful to you, or your son.


http://www.parade.com/articles/editions/2007/edition_01-14-2007/Diagnosis



Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline Robert

  • Member
  • Posts: 2,643
Re: 18 yr old son just diagnosed
« Reply #17 on: September 14, 2009, 01:50:51 AM »

hi amamda.

It's me again, robert.  I got to thinking.  You should read one of our bloggers, Shawn..  He was exposed to the virus from a blood transfusion when he was young and has lived with the virus almost his entire life.  He has a great outlook and writes a great blog (though, most of it is beyond me but that's because he's more your son's age than mine.)   He's also an author, My Pet Virus, The True Story of a Rebel Without a Cure..  It's a great story about a boy coming of age who just also happens to have the virus.   
..........

Offline Etay1207

  • Member
  • Posts: 131
Re: 18 yr old son just diagnosed
« Reply #18 on: December 16, 2009, 02:46:59 PM »
Oh my!  You and my mother would have so much to talk about! I tested poz when I was 19.  I am now 29 and my mother has been there every step of the way.  I was afraid to tell her when my labs indicated I had AIDS. So I waited awhile to tell her.  I didn't want her to pressure me into taking meds. I've lived in perfect health since my diagnosis except for a parasitic infection that lasted a week last summer. i now have 71 tcells and 500,000 VL.  I am the picture of health.  You have nothing to worry about.  I cought a slight cold last weekend that lasted ever bit of 24 hours!  Your son will be fine.  I live a pretty healthy lifestyle so I don't often get sick regardless of tcell counts. 
POZ since 1999
1/07 tcells: 530 vl: 72,922 7/07 tcells: 542 vl: 26,577
9/08 tcells: 339 vl: 56,120  7/09 tcells: 267 vl: 663,160
11/09 tcells: 71 vl: 498,670 2/10 tcells: 52 vl: 322,000
 no meds and feeling great!

Offline amanda65

  • Member
  • Posts: 3
Re: 18 yr old son just diagnosed
« Reply #19 on: December 18, 2009, 07:00:08 PM »
Thanks Etay. It's very difficult for mothers to let go. I've relaxed a lot in last few months - my son is bright young man with big plans for the future - he knows he needs to take care himself. Since my last post, my son has gotten his labs drawn again but hasn't made an appointment with his ID to get the results. He's also finished his first semester of college with a 3.4 GPA. I could not be more proud of him.

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.