My son needs ATS help

Double Post. I edited the second one to add stuff.



[edit on 8-8-2010 by getreadyalready]

reply to post by zarp3333


My son was less than 5 lbs when they started the weekly blood drawsl His little arteries were difficult and sometimes it took them many, many tries to get the blood. Sometimes I would lose it and make them stop, other times we would refuse certain techs and wait around for others that had done well before.

Then they started the weekly EEG's. An hour of roughing up skin, and sticking little probes all over an infants head while he refused to hold still. Then another hour of lying there under a strobe light while they measured his brainwaves.

I demanded nobody but me touch him when they did the first couple of spinal taps. I had to double him over and hold him perfectly still with all of my might while the Doctors ran a long skinny needle between his vertebrae.

Keep the faith, stay strong, don't give up on Constantine, and don't allow anyone else to settle for anything other than 100% recovery!! As I type this, my little Jasper is taking everything out of my Lowes saqck and spreading it thoroughly about the room! I will never find all the little pieces parts, and I will have to drive back to Lowes probably, but I am so happy that he is able to be a typical bad kid!! Just a little while ago, I called him rotten, and he said, "No I'm not!" Then he proceeded to tell me that chocolate milk makes him rotten and its not his fault! His Papa was here laughing and saying we wouldn't want it any other way!!

[edit on 8-8-2010 by getreadyalready]

reply to post by Trueman


It is unbelievable, this thread was flagged up to the top and front page of ATS, and was quickly moved here... Out of sight out of mind I suppose.

If you want a conspiracy angle in this, maybe the PTB don't want people to realize the true power of collective positive energy when used by a very large number of people.

Threads moved from ATS to BTS usually die, and don't have any real outside exposure. It could have been seen by MILLIONS on ATS, that won't happen here on BTS.

As stated this was an experiment, but it really is more, it is all about the child involved, and because of that this move should not be taken so easily.

Is there no more room in ATS for compassion for the suffering of our fellow human beings?

But ultimately, it is what it is. And is where it is because that is where they want it to be.

Nonetheless, those involved here need to remain focused on Constantine and his family. Keep them in your thoughts and prayers, and don't let the negative counter the potential of the positive.

reply to post by Fractured.Facade


Asking because I don't know. What is the difference being on ATS or BTS?

Please don't get me wrong about the alternative and natural cures. We are interested in anything that may help him.

Being only six months old, his diet is necessarily restricted. It may be of interest that he is the only one of my children who was not nursed exclusively.

Due to the necessity of my wife working, he is using formula in addition to breast milk.

As far as the moving to BTS is concerned, I consider this exercise to be an experiment as well.

I have copies of his test results for liver function, endocrinology and immunological function.

Posting quantifiable results is my intention. Imagine if when Constantine is healed, we have scientific data available for scrutiny.

I am about to scan his test results to send them to a family friend. I will remove his personal data and post it as the control data.

The tests were taken over the last seven days and all were prior to this post.

I may need help. My computer is broken. I have been posting with my blackberry.

I will also post a picture of the little dude as soon as I figure out how to do so.

Perhaps the addition of clinical data will help the mods reconsider?

I was drawn to ATS in part because I have held a life long belief that my life and the lives of many others on this site has in store a higher purpose that is just out of reach of my comprehension.

Somehow I feel that we need some kind of critical mass of humanity to awaken to the idea that there is much more going on than meets the eye.

For most skeptical westerners, facts and data speak louder than convictions.

Perhaps this was all meant to happen as a part of the collective global rise in consciousness I hear so much about?

Please do not be offended if I do not respond to each post or U2U in a timely manner. I am doing the best I can under the circumstances.

I feel so overwhelmed that I have been fighting off waves of nausea and extreme fatigue.

Late last night, as my wife slept in the hospital room, I held Constantine in my arms and prayed for 45 minutes.

It risk of alienating some members, I will share details that strike me as unorthodox but...

It was strange in that for all but 5 minutes, he was fast asleep. When I asked that angels intercede and any darkness or demons be cast out, he writhed as if wracked by severe abdominal pain.

The timing of the physical response was uncanny to the silent words I prayed for release from the grip of evil.

In my minds eye, I saw a vivid image of Constantine's ears. A black waxy substance oozed from them.

I pictured wiping it off and tossing it into a pit.

It may have been the late hour. I may have been falling to sleep, he may have been having cramps but afterwards, I was exhausted.

I placed him in the bed next to my wife and waited another hour. As I was leaving, the nurses made a point that it was the longest time he had been asleep since he had been in the hospital.

reply to post by deccal


Below Top Secret is different because it is for topics that are not worthy of discussion on ATS, for off topic chit chat type threads and/or topics that do not otherwise fit within the theme of Above Top Secret.

Main difference is exposure to both the membership on ATS and to visitors of ATS.

On ATS it got 32 flags and numerous responses in a rather short time in the ATS Philosophy and Metaphysics forum, it was on the ATS site home page, and had the exposure potential there that it will not have here. It is no longer getting that exposure except through members that have already seen it or have shared it with others, or is seen by the much smaller regular membership of BTS.

Regardless, it is what it is, we don't have to like it, but we do have to respect it.

Now, can we all remain focused on the topic in the OP?

Thoughts and prayers! stay positive, don't let the negative invade your feelings about this or distract you away from the much more important nature of this thread.

I've sent some positive energy to Constantine and tried to send a little boost to his immune system.

He'll be in my thoughts and I'll look forward to hearing about his progress.

I was going to post a photo of Constantine until it asked for a URL. Will have to learn how to use photo server site. I wanted to scan and upload the medical files but the Kodak scanner will not work until I refill the black ink.

In the meantime, I will type what is on the cover page of the test results
Gross Description
Collected 8/4/10
The specimen consists of multiple fragments (Should not be fragmented. Shows evidence of fibrosis. Emphasis added by Zarp) of tan to red soft tissue measuring in aggregate 2.5 x 0.1 x 0.1 cm. A fragment is submitted in glutaraldehyde for possible future electron microscopy and the remainder is entirely submitted in one cassette for routine processing.

Sections show markedly distorted liver parenchyma by hepatocyte giant cell transformation. Hepatic parenchymal cells show ballooning. focal necrosis and severe cholestasis. In the portal tract bile ducts are present but are partially obliterated by the dense acute inflammatory cell infiltrate, mostly composed of neutrophils and eosinophils. Patchy areas of the liver demonstrate clusters of necrotic hepatocytes with intense neutrophillic infiltrate. The pattern of glycogen distribution is unremarkable. PAS stains with diastase reveal no diastase resistant material. There is focal reticulin collapse in the areas of intense inflammatory cell infiltrate. Trichome stains reveal focal septal fibrosis and sinusoidal/pericellular fibrosis. Minute amounts of iron present.

Diagnosis
Liver, needle biopsy:
* Hepatitis with extensive giant cell transformation
* Bile ducts present
* Focal septal/bridging and sinusoidal fibrosis present

In layman's terms, the liver biopsy should not have any tan sections to it. That shows evidence of bile or bilirubin. The biopsy should have come out in a segment. The fragmentation in evidence of fibrosis. Which is reversible but also is present before cirrosis.

The liver is grossly enlarged and evident by ultrasound. Constantine will have further biopsies. I shall present them as collected. I shall also scan the other test results and upload when I get my computer back or if I can fax the documents to another user and they can upload them.

I will not have access to a computer for a few hours. Thanks again everyone. God bless us. I feel so much better.

reply to post by zarp3333


In your post you failed to mention what type of autoimmune hepatitis your son has type 1 or 2?Also what type of hepatitis does your son have there are five main types A B C D and E.Has your sons doctor started him on steroids yet or has your son received platlet transfusions?Immune Thrombocytopenic Purpura can be dealt with a number of ways some are ''natural'' some are ''clinical''.What is your sons diagnosis other than what you have already said.The answers to these questions are very important in determining a course of treatment for your son whether it be natural or not.Also being that your son is still an infant will make things a bit more challenging but i and everyone else on ats will do our best to help you.You and your son will be in my prayers .i hope he gets well soon .

Originally posted by I Want To Believe
reply to post by zarp3333

 

In your post you failed to mention what type of autoimmune hepatitis your son has type 1 or 2?Also what type of hepatitis does your son have there are five main types A B C D and E.Has your sons doctor started him on steroids yet or has your son received platlet transfusions?Immune Thrombocytopenic Purpura can be dealt with a number of ways some are ''natural'' some are ''clinical''.What is your sons diagnosis other than what you have already said.The answers to these questions are very important in determining a course of treatment for your son whether it be natural or not.Also being that your son is still an infant will make things a bit more challenging but i and everyone else on ats will do our best to help you.You and your son will be in my prayers .i hope he gets well soon .

My son has type 1 autoimmune hep. He is currently being treated with 2 mg of Solmeredol which is an IV form of prednisone.

His platelet count is 163 and has not fallen below 120 for 2 weeks.

He had been treated with Prednisone since april. His platelet count had fallen to 2 early on. He did not respond to pred until the dose got pretty high 2 weeks after initial treatment.

Things started to get better by June and they started tapering him. I don't have the med chart in front of me and don't know the exact concentrations but he went from .8 ml twice a day to .2 ml twice a day.

9 days ago he started looking yellow and 8 days ago they admitted him. The diagnosis of type 1 AIH just came in Friday.

They suspect it has been going on for a couple of months due to the condition of his swollen, fibrotic liver full of bile.

Tomorrow we are meeting with the attending. He looks much better today. A few people have commented that his eyes are much whiter.

I hate the thought of high doses of steroids again. He does not sleep. It was torturous in May when my wife and I had to take turns not sleeping.

I will provide further details later with specifics on the tests and doages of meds. They are also giving him zantac, blood pressure meds and vitamins.

The poor kid can't stand having the awful stuff squirted down his throat.

Somehow I feel more confident than ever. Peoples prayers are working. A few hours ago, I didn't think I could take another step.

reply to post by zarp3333


Stay strong brother! You may not feel like you can take another step, or face another test or watch him cry another minute, or watch your wife suffer, but that is exactly your job!! Do it anyway, and do it confidently. It will make you and everyone around you feel better. Be in control. You are doing awesome reading the charts, bringing info to other sources. You are doing a great job, keep it up and he will be fine.

Don't forget to smile. Smile as much as possible. Smile at the baby, smile at your wife. Laugh a little when she is at her worst. Let her know it is ok to breakdown, because you will hold it all together.

Smile at the nurses too! Thank them. Bribe them with cookies or flowers if you have to. Do whatever it takes to get your baby the VIP treatment he deserves. Bring coffees and donuts when you show up in the middle of the night.

You may not be a doctor or nurse, but you can make sure Constantine gets the same treatment as Obama's kid would. Whatever can be done, will be done, and it will be done cheerfully and voluntarily if you play all your cards right.

EVERYTHING IS GOING TO BE FINE IF YOU CONTINUE PRAYING!

You are doing a fine job so far brother, keep it together, and don't give up, and don't stop praying. Touch him and hold him while you do it. Don't be afraid to use your knees!

[edit on 8-8-2010 by getreadyalready]

Originally posted by zarp3333

Somehow I feel more confident than ever. Peoples prayers are working. A few hours ago, I didn't think I could take another step.

Amen.

Please stay strong, and know that people who care are continuing with positive thoughts and prayers.

And please, keep us updated when and if you can.

Again, all the best to you and yours, especially your son.

Zarp, just a line to let you know your son and family are still on my mind. Off to bed, after a few moments of quiet thought for you all.

Zarp, dear brother, It's 4 am here and I'm about to go to work. I want to let you know we are still with you and wishing you and Constantine a good day.

My prayer:

GOD, thanks for listen our prayers, give Constantine and his family the strength they need to face this new day and bless them with your presence. GOD, I ask you this in the name of YOUR SON JESUS CHRIST, amen.

Originally posted by zarp3333

I hate the thought of high doses of steroids again. He does not sleep.

Somehow I feel more confident than ever. Peoples prayers are working. A few hours ago, I didn't think I could take another step.

I so hope our efforts are working.

I went to sleep last night with your baby in my thoughts, wishing him sleep and a restful night.

When I woke up, I was still thinking of him. I'll remember to send support to you and your wife, too, next time I do a visualisation

Here's where it gets hard. A friend of my wife from high school works in childrens hospital in Pennsylvania. She saw all the test results and says my son is a candidate for a new liver. She wants us to take my son there.

Our insurance is limited to virginia. Please focus your thoughts on giving me the strength to make the right decisions.

Everybody thinks "other" children's hospitals are "better" than ours in Norfolk.

I have confidence in our team. Its the second guessing that can drive me crazy.

Thanks for everybody's prayers. Please spread the request amongst your friends and families.

I have complete faith in this message to spread.

Originally posted by getreadyalready
reply to post by zarp3333

 

Stay strong brother! You may not feel like you can take another step, or face another test or watch him cry another minute, or watch your wife suffer, but that is exactly your job!! Do it anyway, and do it confidently. It will make you and everyone around you feel better. Be in control. You are doing awesome reading the charts, bringing info to other sources. You are doing a great job, keep it up and he will be fine.

Don't forget to smile. Smile as much as possible. Smile at the baby, smile at your wife. Laugh a little when she is at her worst. Let her know it is ok to breakdown, because you will hold it all together.

Smile at the nurses too! Thank them. Bribe them with cookies or flowers if you have to. Do whatever it takes to get your baby the VIP treatment he deserves. Bring coffees and donuts when you show up in the middle of the night.

You may not be a doctor or nurse, but you can make sure Constantine gets the same treatment as Obama's kid would. Whatever can be done, will be done, and it will be done cheerfully and voluntarily if you play all your cards right.

EVERYTHING IS GOING TO BE FINE IF YOU CONTINUE PRAYING!

You are doing a fine job so far brother, keep it together, and don't give up, and don't stop praying. Touch him and hold him while you do it. Don't be afraid to use your knees!

[edit on 8-8-2010 by getreadyalready]

Thanks for the encouragement. I lost my temper with my wife again. I go out for a cig and reply to ATS and she gets very angry as if it is a personal affront.

I need to do a better job of leading by example and being cheerful.

Next trip will include cookies and flowers for the nurses.

Originally posted by zarp3333

Originally posted by I Want To Believe
reply to post by zarp3333

 

In your post you failed to mention what type of autoimmune hepatitis your son has type 1 or 2?Also what type of hepatitis does your son have there are five main types A B C D and E.Has your sons doctor started him on steroids yet or has your son received platlet transfusions?Immune Thrombocytopenic Purpura can be dealt with a number of ways some are ''natural'' some are ''clinical''.What is your sons diagnosis other than what you have already said.The answers to these questions are very important in determining a course of treatment for your son whether it be natural or not.Also being that your son is still an infant will make things a bit more challenging but i and everyone else on ats will do our best to help you.You and your son will be in my prayers .i hope he gets well soon .

My son has type 1 autoimmune hep. He is currently being treated with 2 mg of Solmeredol which is an IV form of prednisone.

His platelet count is 163 and has not fallen below 120 for 2 weeks.

He had been treated with Prednisone since april. His platelet count had fallen to 2 early on. He did not respond to pred until the dose got pretty high 2 weeks after initial treatment.

Things started to get better by June and they started tapering him. I don't have the med chart in front of me and don't know the exact concentrations but he went from .8 ml twice a day to .2 ml twice a day.

9 days ago he started looking yellow and 8 days ago they admitted him. The diagnosis of type 1 AIH just came in Friday.

They suspect it has been going on for a couple of months due to the condition of his swollen, fibrotic liver full of bile.

Tomorrow we are meeting with the attending. He looks much better today. A few people have commented that his eyes are much whiter.

I hate the thought of high doses of steroids again. He does not sleep. It was torturous in May when my wife and I had to take turns not sleeping.

I will provide further details later with specifics on the tests and doages of meds. They are also giving him zantac, blood pressure meds and vitamins.

The poor kid can't stand having the awful stuff squirted down his throat.

Somehow I feel more confident than ever. Peoples prayers are working. A few hours ago, I didn't think I could take another step. [/quote Prednisone is an immunosuppressant and also a steroid.Since your son has been taking prednisone since april i can safely assume that adenal suppression has already begun?Prednisone is a highly addictive drug and people taking it longer than a week often will develop a dependency.It should also be said that prednisone has some serious side effects that you should look into.Why has your sons doctor prescribed zantac?Zantac is commonly prescribed for peptic ulcers and acid reflux.Also what are the blood pressure meds and vitamins your son is taking?Any and all info you can give would be extremely helpful.Hopefully we will be able to come up with a solution.I will continue to pray for the health and safety of you and your family.God bless!

No need to reply to me here Zarp. My daughter had severe reflux and didn't sleep and screamed almost round the clock her first year. She didn't mind ZAntac but that is because the doc had it put in a more pleasant tasting suspension. I was told it doesn't have to taste nasty. She mostly seemed to like it. In our family our prayers did work some apparent miracles. I don't have time to explain now because my own monkey is needing me at the moment. Lunchtime. I sympathize with the lack of sleep and lack of solutions. Our prayers continue. As for the move to BTS can we put the link to this thread in our signatures? Sorry this post is choppy. I do have to run.

Me too am surprise this thread has been moved. But it doesnt matter, what matters is your child. And everyone here does care, not only for yours, but for others as well. They are innocent and are precious.

No matter what happens, I would like you to be prepared. There is a chinese saying I learnt - Never worry about the future or eternity, only be glad you had an experience once. And that experience is the life you shared with your child that you loved so much over the years.

It will be a precious memory, and it is such memories that will be treasured and cherished. Perhaps it's bit premature as yet to say such things, but I do want you to comprehend reality - you can only hope for the best, but to expect the worst. The spirit may be willing, but the flesh is weak. My words are to help you tide over.

But as yet, you still have hope. There may be a chance. .

So don't give up, and never give in to your emotions of despair. Treasure each day you can and be a pillar of strength to all - your loved ones. They too need support, just as we are supporting you and your child by our thoughts and prayers, christians, jews, muslims, buddhists, hindus, free thinkers, etc, for we all had been worshipping the same Creator all along anyway.

I may be insignificant and a nobody, am only a stranger, but I do care about humanity and human lives. I will be with you throughout this journey, just as our Creator, who loves us all, will be. You are not and never alone.

Take care.! :-)