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Author Topic: 2yr old nephew is HIV positive- words of advice and support pls  (Read 5514 times)

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Offline minnie

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2yr old nephew is HIV positive- words of advice and support pls
« on: November 13, 2011, 08:47:19 AM »
Hi everyone,

My family have recently had the life changing news that my 2 yr old nephew and my sister in law are both HIV positive. So far my brother and 6 week old nephew are negative, pending more tests.

I have spend a bit of time reading through everyones posts and its certainly helped. I felt that part of my way of coping with what is happening in my life is to post also and get some advice. Its time to start talking! What I have noticed is that there are very few people posting who have young family members with HIV- seems to be a mostly older people. Im hoping to connect with those in a similar situation but value input from anyone who has a loved one living with HIV.

My story- my nephew is utterly adorable. He was a normal developing child until about 14 months when he started to get a number of infections- eye, pneumonia advanced oral thrush and just generally pretty unwell and very unhappy baby. He was also developing very poorly and still now nearly 2 yrs old- he has what they call ‘spastic paraplegia’. He cant walk, crawl and is not developing normally at all.

His parents spent many months going around doctors trying to work out what was wrong. Finally they worked it out…and its quite a story how they did. But- what a terrible day and those days following as we waited for news on my brother, sister-in-law and nephew were beyond a nightmare. Emotions I know we all share.

I have done so much reading but still have so many questions about the life expectancy of children who become HIV positive either through breast milk, birth or inutero- in our case were not sure how/when my nephew contracted the illness. I suspect through breast milk as he developed normally to a point. Around 14 months he was very sick and developed a rash- the doctors at the time- although not confirmed said was measles- I wonder now if it was the HIV rash experienced during seroconversion.

He is currently in hospital and spent last week in ICU on a ventilator and under sedation because his heart hasn’t been functioning to well. He had been on anti-retrovirals for over a week and it went downhill really quickly. The time in ICU did wonders for him and his heart is not normal but certainly better than a week ago. I know heart conditions are common in HIV patients. Hes back on a ward and doing really well. He does though have TB of BCG(?). He hasn’t contracted TB per se but its developed after vaccination. As a baby he was given the TB vaccine- a live vaccine which normal people form an immunity to- as part of the way the vaccine works. However my nephew has gone on to develop TB in the lungs and bone marrow. He also ha PCP, resistant oral thrush and certainly neurological issues as well.

Poor little mite. Its so very heartbreaking watching a young child suffer in this way. What is breaking my heart just as much though is seeing the anguish in my brother and sister-in-laws eyes. I am so desperately sad and wish there was a way I could help my family. Now that hes been diagnosed its just time to see how he responds to the ant-retrovirals and if he gets better and can perhaps start developing like a normal child.

So – if there anyone out there in a similar situation. Can you please tell me your experiences- good and bad. What your children went through. How best to help your family cope. Strategies to get your child back on track and leading as normal a life as possible.

Thank you☺

Offline Ann

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Re: 2yr old nephew is HIV positive- words of advice and support pls
« Reply #1 on: November 13, 2011, 09:53:15 AM »
That poor little boy! My heart goes out to him.

While I do not have any personal experience myself with pediatric hiv, there is a woman who sometimes posts here who has an hiv positive adopted daughter. I've sent her a message and hopefully she'll be in touch.

Hang in there! My thoughts are with you and your family.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline J.R.E.

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  • Joined Dec-2003 Living positive, since 1985.
Re: 2yr old nephew is HIV positive- words of advice and support pls
« Reply #2 on: November 13, 2011, 10:51:45 AM »
Hello,

My heart aches, for the little guy.  Until you get more responses, here is something from the lessons:


http://www.aidsmeds.com/articles/Children_7566.shtml


Hang in ------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 SteveInToronto

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Re: 2yr old nephew is HIV positive- words of advice and support pls
« Reply #3 on: November 14, 2011, 05:48:50 PM »
I honestly don't have anything I can contribute as far as dealing with pediatric HIV. However I did want to lend my voice of support for what your family is dealing with. What a terrible way for this little guy to start out. I sincerely hope things improve drastically now that your nephew is on ARVs. I hope your sister-in-law is doing okay as well.

Best wishes to all of you.

Steve

Offline WillyWump

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Re: 2yr old nephew is HIV positive- words of advice and support pls
« Reply #4 on: November 14, 2011, 06:11:23 PM »
Oh Minnie, as a father my heart goes out to you and the family and of course the little guy. I dont ahve any advice for you regarding pediatric HIV but as Ann stated there is a mother here who has an HIV+ daughter. Ive met the little girl and I can tell you she is an amazing, happy, beautiful little girl, so dont lose hope. Once they get everything under control and he starts responding well to HAART I am sure he will flourish.

Hugs,
Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Online Jeff G

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Re: 2yr old nephew is HIV positive- words of advice and support pls
« Reply #5 on: November 14, 2011, 06:17:17 PM »
Welcome to the forums Minnie . Wish I had some helpful advice to offer but all I have is a warm welcome and support . Good luck to you and your family .

Offline minismom

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Re: 2yr old nephew is HIV positive- words of advice and support pls
« Reply #6 on: November 15, 2011, 07:27:15 AM »
I have a now 11yo daughter who contracted HIV in utero.  She was tested at 6wks old and we got her diagnosis on her 8wk birthday.  After diagnosis, doctors were very pessimistic about her life.  One went so far as to say that we shouldn't get too attached - a bit late for that.  We were also told that she'd never walk or talk and, in fact, we'd be lucky if she crawled by the time she was 2.  Her viral load was over 2 million, her t-cells tanking.

When Mim was 8mths old, she had her first of several MRI's.  It showed that the mylen in her brain was about that of a 4mth old.  We were told that after 1yr of age, mylen quits growing.  Between the lines, we were being told that our daughter would be a forever 4mth old.  However, at 19mths old, she had another MRI.  Not only had her mylen grown, it had completely caught up.  Her neurologist's statement, "I don't know how to tell you this, because it's not supposed to happen..." 

From 10mths old - 15mths old, Mim was more in the hospital than out.  She was plagued with 107F temperatures, gram-negative blood infections, and low blood counts.  Every time we went in, I tried to prepare myself that I wouldn't be bringing her home.  It was decided that an IV line would be placed in her chest so that her veins could rest from the bloodwork and medication.  They were running out of places to put needles - her veins kept collapsing.

We were just getting settled into our new home.  It had been 4mths since Mim's last stint in the hospital, when it happened again.  She went down for nap fine, woke up with a 107F temp.  Tears streaming down my face, I drove her back to the ER.  She had 2 more gram-negative blood infections.  She was in ICU for a few days, the floor for a few more days, then released.  Because of her IV line, my husband and I were able to run her IV meds at home.  I held my breath for weeks, just waiting for the other shoe to drop.  It never did.

3 months later, June 2002, we brought home our 4th child.  2 weeks later, our PID called and told us that Mim's viral load was undetectable.  I was speechless and dumbfounded so I did what I had done best for the last 22mths - I cried.  The first people I called were my parents.  They were with me when we got the call about her diagnosis.  I felt they should be the first to know about the miracle.  Two days later, on Friday, Mim's adoption was finalized.  We celebrated with nearly 40 of our close friends, family, and therapists.

I'd love to tell you that things have been all rainbows and flowers since, but that's not the way of this virus.  I will tell you that, with the help of leg braces and intensive in-home therapy, Mim DID indeed learn to walk just before her 2nd birthday.  She said her first word, "ball", when she was 26mths old.  3 months later, she had a 300 spoken word vocabulary. At the age of 4, she was diagnosed with spastic diplegic cerebral palsy. A month later, she was diagnosed with diabetes and high cholesterol.  She's had issues with her heart, her kidneys, and her liver.  Her eyes can't track, her hearing (and vision) comes and goes. She has multiple learning disabilities. At 6, she was diagnosed with dyslexia, dysgraphia, and dyscalcula.  She didn't learn to read until the end of 2nd grade (she's home schooled), but she learned.  She can't count to 20 or do simple math in her head, so we taught her to use a calculator.  Her hand writting and spelling are horrible, but she writes poetry, plays, and short stories.  She has short- and long-term memory issues, so we taught her to carry a notebook and write things down.  She "failed" a growth hormone test.  We were told she'd never get above 3ft 6in.  Today she stands nearly 5ft tall.  She went through wasting, but now she weighs 90lbs.

I encourage you to find therapists (OT, PT, ST, and Developmental) who will work with your family.  If you are in the States, contact your local Birth-to-Three.  They provide in-home services free of charge no matter what your income.  If he hasn't already had one, I'd talk to his PID about getting a genotyping done.  It will give them a good "map" of which meds will work best for his particular virus.

If you have ANY questions, or just need to talk, feel free to PM me.  Unless I'm mistaken, you'll need to post 2 more times before being able to do so.

Things are going to be hard for a season, but that season will end.  Things will get better.  Celebrate the small steps - they're miracles, too.

Blessings!
Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline tikasingh4

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Re: 2yr old nephew is HIV positive- words of advice and support pls
« Reply #7 on: November 15, 2011, 11:52:06 AM »
I have no words of advice's either- but wanted to say how sorry I am about what you and your family are going through.

I have lost some dear friends to his vicious illness, but the great news is there are more aggressive update medicine that will give that baby a much longer life. I pray every day that God, finds a cure for this diseases.

I don't' understand how we can walk the moon and clone people but we can't find cure for Aids,Cancer,Diabetes... maybe a form of population control. I won't open up the topic as this is not the right time or place for it.

I will pray supper hard for your nephew, and his family.
« Last Edit: November 15, 2011, 12:00:09 PM by tikasingh4 »

Offline minnie

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Re: 2yr old nephew is HIV positive- words of advice and support pls
« Reply #8 on: November 17, 2011, 03:38:17 AM »
Thank you everyone for your very kind words and prays. Ive taken a few days and reread everyones comments and its been very comforting. I have printed for my family to read also. Even though im not the parents and it must be so much worse for them- I just feel so alone with what is happening to my family. I know no-one in the same situation and really dont think would understand what we are going through. Im very reluctant to tell people- and thats sad isnt it- sad that I feel so stigmatized. I also dont feel that with my sister-in-law being positive also that its my place to tell anyone. Told a few close friends and my boss but thats all. 

Were in Australia but long story- my brother and family reside in Bali where my brother works as an expat. All back here in Oz at the moment. My nephew is being looked after by a very good immunologist and support team. Your daughters story minismom is very inspiring, thank you for sharing. I just wish I knew what the future holds for my nephew. I know every child is different. Hes been in hospital for ages now and with any luck he will one day be released.... My big hope is that one day he will develop into a 'normal child' by that- I mean a child that can walk and have some vocabulary. That would just be wonderful. The big concern at the moment is cardiomyopathy.

Minismon I would love to talk to you more. Im guessing you know a lot of other children in your network and can tell me also about their progress. Nephew had been v sick since about 14 months of age (roughly feb this year) and never really recovered since then. Your story gives me hope he will get better if not for a little while he can be a normal little boy.

We still nervously await more tests for my 7 week old nephew. Hes had 2 so far- one at 3 and one at 6 weeks. Both came back negative. The dr seemed quietly positive.

For anyone who is interested I should probably share how the story how the drs came to work out the HIV diagnosis for my elder nephew (lets call him C).  The story starts with my 7 week old younger nephew (referred to as D) being born by emergency c section (in bali) after became stressed during the birth- cord around his throat. They discovered at birth D had also swallowed myconium. The c section may have been a blessing in disguise as natural birth is a major form of transmission. Pretty much immediately they realised he couldnt tolerate breast milk and developed v bad gastro whenever given breast milk so he was put in drips and fed formula. They thought the myconium damaged his gut in some way and it needed time to heal. D went from 4.4kg at birth to 3.2 kg over a 2 week period. He wasnt getting any better so he was medivaced out of bali to australia. My brother, wife and C came over as well of course. D spent a week or so in ICU before C started to get quite ill, again. Because my brother and SIL were already at the hospital they got the drs to look at him. Immediately they realised there was something seriously wrong with C and wondered if there was a link between the 2 boys. This is the same hospital my brother and SIL took C on 2 previous occasions to find out was wrong with him- only to be told that 'they have a lazy baby' and 'he just had the flu'. They did a load of tests and quickly worked out this time and at long last what was really wrong with C. So its funny how it worked out- it took D being born to finally get a diagnosis. Plus I also think its a sign that D never tolerated breast milk which apparently is quite unusual... there is someone out there looking after him im sure. Had he been given more breast milk he could have ended up positive to. We still hope and pray hes in the clear. Time will tell.

I do worry a lot about my sister-in Law. Her count was 96 at diagnosis. I dont actually know her viral load and havent wanted to harass my brother or SIL to much for it. The dr seems to focus on the CD4 counts though. The dr reckons shes had it for a while but she really doesnt show any signs of being sick. Shes never ill actually. Shes not tired and really isnt showing any manifestations of HIV. I do worry her 2 v close pregnancies will have affected her disease progression. Anyways- the drs were quite surprised she wasnt showing any signs- which personally I think is fantastic. Is there anyone out there who is quite well when the drs think they shouldnt be... Shes started combination therapy and so far has a bit of a rash but no other symptoms. I want to do whatever it takes to support her. They are going through a big upheaval in their lives and may have to move back to Australia to secure good medical care for the future for C. I hope the stress of everything doesnt cause her any problems.

Anyways, thanks again for listening:)





Offline minismom

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Re: 2yr old nephew is HIV positive- words of advice and support pls
« Reply #9 on: November 17, 2011, 08:00:45 AM »
Minnie, it sounds like you are off to a wonderful, supportive start.  I completely understand about you wanting to *tell* so that you, too, can get support / advice and having to balance that against the privacy and protection of your family.  That was one of the biggest struggles we faced early on.  Mim's brothers, however, were famous for outting her. ;) 

We spent the first few years after Mim's diagnosis flying by the seat of our pants.  We had NO idea what we were doing.  Everything was overwhelming: numbers, information, co-morbid diagnosies, medication schedules that changed constantly, 5 therapists, 13 doctors, latex gloves, and cootie killer by the gallon. I spent those days (years) blurry eyed and sleep deprived.  We knew no other poz people, let alone poz kids.  It wasn't until Mim was 6 or 7 that I found this site full of wonderful information, support, and encouragement.  I've met 2 other parents poz kids on this site.  Unfortunately, niether one posts here anymore. 

I wish you and your family the very best.  Know that you are in our constant prayers.

Mum 
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline minnie

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Re: 2yr old nephew is HIV positive- words of advice and support pls
« Reply #10 on: November 25, 2011, 09:17:05 AM »
Just a quick update for anyone interested.

My nephews been diagnosed HIV positive for 1 month today. His viral load has gone from >1 million to 679! Im thinking thats pretty good- can anyone advice. The doctor seemed quite happy. CD4 percentage gone from 3% to 15% but overall- all the WBC have dropped so his counts havent changed and are still around 50. He did go up to 90 two weeks ago though and 12%. The doctor thinks some of his meds are reducing his WBC and they are keeping close track. But good overall I guess as CD4's have increased. He having ongoing issues with his breathing due to the ventilator he was on a few weeks ago. Inflammation in his airways. They have given his a tracheotomy today which will help I hope. Its one thing after another but I know the viral load decreasing is a big thing and im very happy about it.

My sister in law has started treatment- her count at diagnosis was 96 and viral load above 1 million. We find out next week how the new tmt is helping her. She has had v bad mouth thrush since starting the meds. V sore- poor thing. The fact that until starting these meds she hasnt had any drama- normal and never sick- its got to be a good thing.

Other good news- my brothers 2nd test came back negative today as did my now 8 week old nephew a few days ago also. Fingers crossed for both of them.

Thanks everyone- just wanted to share the few happy snippets of news this week. Sad about the tracheotomy but all up- better week than the last 4.

Have a great wend neveryone and for those in the US- happy thanksgiving.

Offline WillyWump

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Re: 2yr old nephew is HIV positive- words of advice and support pls
« Reply #11 on: November 27, 2011, 01:03:48 PM »
Yes, that is a fantastic decrease in VL! Good for him, I think he is on the road to recovery (fingers crossed). I am sure things will continue to improve. Sounds like he is a tough little guy ;)

Glad your Bro and nephew have tested neg as well.

Keep us posted.

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline minismom

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Re: 2yr old nephew is HIV positive- words of advice and support pls
« Reply #12 on: November 27, 2011, 11:47:06 PM »
Most excellent news indeed!  So sorry about the trach, but prayerfully it will only be temporary so the inflamation can go down.  Do you know what meds he's on?  Sounds like they are definately doing the job for him.  Glad to hear about your brother and wee-nephew.  I know that is a huge relief for you.

Here's to a continued upward swing!

Kristina
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline anniebc

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Re: 2yr old nephew is HIV positive- words of advice and support pls
« Reply #13 on: November 28, 2011, 03:45:24 AM »
Hi Minnie

I can't give ou any more advise than you have already been given, I just wanted to say welcome and huge hugs to the little man, he is heading in the right direction and hopfully will continue to go in that direction, please keep us up dated when you can.

Keep in touch with Minismom she will be a great help to you, they have been through all this with our Mini.

Aroha
Jan
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Offline OneTampa

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Re: 2yr old nephew is HIV positive- words of advice and support pls
« Reply #14 on: December 16, 2011, 07:42:02 PM »
Hello Minnie,

I just caught this thread (my late mother's name was also Minnie) and want to add my well wishes to the others.

Wishing the little guy and your family the very best.

And of course, Minismom gives real world experience I'm sure you'll find helpful.

Here are also a few articles you may find interesting:

http://holtinternational.org/blog/2011/11/the-most-hopeful-thing/

http://www.thesurvivorsclub.org/news-and-articles/tom-cosgrove-was-born-hiv-still-thriving-800223622

Take care.
« Last Edit: December 16, 2011, 07:55:15 PM by OneTampa »
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline minnie

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Re: 2yr old nephew is HIV positive- words of advice and support pls
« Reply #15 on: December 29, 2011, 09:31:37 AM »
Hi everyone, hope you have all had a lovely Xmas.

Thanks for those links- its just so heartwarming to read positive stories.

my nephew was able to be released for a few hours on Xmas day. Was really wonderful. He's doing well. Still has tracheostomy in but he's good. Really coming along in leaps and bounds. He's responding v well to the AVT drugs- recent viral load was 300 and CD4 is 200. Were >1 mill and 50 respectively at diagnosis. he's only been on the meds just over 2 months. Having a few issues with liver function but drs really happy. His heart function has gone back to near normal as well. His motor skills are also seemingly starting to improve. But as always its 2 steps forward and 1 step back. Would be so nice for him to leave hospital on day.

My sister in law has had roughly 6 weeks on meds and despite the first few weeks where she had rashes and sore throat etc her viral load is 600 and counts 270. Was >1 mill and 90 respectively at diagnosis. I think I just want reassurance they she's responding well.

My bro and baby nephew still negative, thank god. I think I would fall apart totally if they weren't.
 
In my state her in Australia there are 5 children with HIV. Hoping that my family can connect With them. Also would be great for them to talk to you Minismon(how funny our names are similar).

The last few months have been hell and for a while there I was wondering if time would make things any easier. It has somewhat but there are always dark days where sadness overcomes you. I have strong hope and faith that things can only get better from here. what I'm going thru is nothing on what my brother and sister in law are feeling. This whole experience certainly have changed my Perspective on life- trivial crap that used to bother me just doesn't- I have so much more important things to concern myself with.


Offline minismom

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Re: 2yr old nephew is HIV positive- words of advice and support pls
« Reply #16 on: December 30, 2011, 09:44:49 PM »
I'm so glad your nephew was able to spend some time at home for the holidays.  I know it meant the world to his family.  What wonderful news about his t-cells and v/l - both seem to responding perfectly to the meds.  Good to hear about your brother and baby, also.

I know this has been a very trying time for your family.  I remember the dark days very well - we still have them, though not as often.  You have been a great support to your brother.  He may not say it, but trust me, it means a lot. 

Please feel free to send me a private message anytime.  Just click the speech bubble under my name (the symbol on the right).  Be sure to keep us updated.  I can't wait until you post that he's home for good. :)

Blessings!
Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

 


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