Please read!
By barbiegirl13
@barbiegirl13 (1588)
United States
December 30, 2008 7:12am CST
I have been mylotting for about 2 years now and have found this site to be very helpful for those who share advice and information. This is kind of a weird post I know but I need help.
My story is My 6 month old son was diagnosed with a very dangerous and sometimes fatal disease that is called Disseminated Histoplasmosis with Heptospleenomegaly. We have were rushed up to Hope children's hospital in Chicago because this disease presents itself like cancer. He was diagnosed at four month old. I stayed with my son from the day he was addmitted until we were discharged from the hospital on December 9th.
I watched my baby go through more things then most cancer patients go through, in fact we were on the pediatric oncology floor for 19 days and in the PICU ( pediatric intensive care unit) for 2 days. He underwent 2 surgical PIC lines and many IV's and blood draws and 2 spinal taps. These were just the invase tests that he got. He also underwent many CT, bone surveys, X-rays, and blood transfusions.
He has so many specialists and none of them can tell me whether or not my son will live . We are home now and he still recieves daily transfusions callem amphertecyn B , and Itroconazol. I have tried researching this horrid disease and find very little information on it at all.
This disease is usually only found in HIV patient( my son does not have this diease) and in cancer patients. One doctor said that they have only found one case of an infant who contracted this disease but he was immune suppressant and my son is not.
SO I guess that my question is this: Have any of you heard of this or known anyone with this to survive? how can I make more people aware of this? How can I find out how my son contracted this? I need help please! his name is Wyatte Jackson and is is only 6 months old and I fear that he does not have much time. I need more information and a doctor or specialist that has treated this and can help him before it is too late.
3 people like this
9 responses
@rberon1985 (5359)
• Philippines
30 Dec 08
hi. sad to hear that from you. how is your son right now? i hope he is fine. As i have read and search, this disease is a fungal infection that varies in symptoms and seriousness. usually affects the lungs and causes a short-term, treatable lung infection. When it affects other parts of the body, it is called disseminated histoplasmosis.People get histoplasmosis when they breathe in dust that contains the fungus. You don't have to worry because it is is treatable with fungus-killing medicines.For us to prevent this disease, avoid exposure to dust from soil that might be contaminated with bat or bird droppings and avoid disturbing accumulations of bat or bird droppings.
hope this helps you. just keep on praying. have a nice day!
@barbiegirl13 (1588)
• United States
30 Dec 08
Yes my son has Disseminated Histoplasmosis. It affected and greatly enlarged his spleen and liver. I do not know where he contracted this. All of the family was tested including my other child and we all tested negative. He is an infant and is never outside. God only knows where this came from.
1 person likes this
@lvaldean (1612)
• United States
31 Dec 08
http://archpedi.ama-assn.org/cgi/content/full/157/2/201
I am so sorry for what you are going through right now. It is horrible to watch children, especially infants suffer.
The link above seems to offer some hope though. I found a couple of others as well, unfortunately they are not open to the public. I did note reading through the other postings that you are working with St. Judes, they are are the best!
Please keep us posted on progress.
@barbiegirl13 (1588)
• United States
31 Dec 08
Yes, today I am waiting to hear from his doctor about getting us referred to St. Jude. Thank you for the link I will look into it.
@barbiegirl13 (1588)
• United States
31 Dec 08
Thank you again for your link. I looked at it and it was everything that my son had! The only differenc was that this little girl recieved a bone marrow test to rule out cancer. I know that they do this test because lots of people including infants can contract disseminated histo because of cancer or other underlying diseases. I will demand that he too has a bone marrow test. I have printed off this article and will be armed with it our next visit.
@lvaldean (1612)
• United States
31 Dec 08
I wish you all the luck in the world. Information is everything in the world today. I wish I had more time I would do a more complete search for you.
I do love St. Judes though, I think they are one of the best in the world for treating children. They are one of the charitable organizations I give to regularly because of the work they do.
I will keep you in my thoughts and hope for all the best for your son.
@carolbee (16230)
• United States
30 Dec 08
First let me say I am so sorry and will pray for your son. I just can't imagine what you are going through at this point. Have you tried to contact the Mayo Clinic to see if they have any suggestions, recommendations? Are you talking about the histo that effects the eyes that can be caused from bird droppings?
Please accept my offer of prayers for both you and your son.
carolbee
@carolbee (16230)
• United States
31 Dec 08
I am so sorry but one thing positive is the liver is a self healing organ so hopefully that will help ease your mind a little bit. Our oldest daughter contracted this disease from a client's home who had birds. She has scarring on one eye and limited vision. I had never heard of it until this all happened to her. She's an adult and suffers no other problems as a result.
@barbiegirl13 (1588)
• United States
31 Dec 08
Yes Mayo Clinic is involved and in fact, A lot of his metobolic testing is sent there. Just today St. Jude called me back and are willing to help him with the referral from one of his specialists. And yes this is the same bird and bat dropping disease. Just for some reason in him it is very severe. I mean this could happen to anyone's baby. But what does not fit the puzzle is that I stay home with my son and has little exposer to this fungus. NO one has been able to explain how he contracted this and he can suffer damage to the heart,eyes, and brain. His liver already has damage. This disease affects people differently my sons case is the worste with it being disseminated and affecting major organs.
@nixxi76 (3191)
• Canada
31 Dec 08
What you're doing right now by writing this on mylot is taking the first positive step, you are making readers aware of what this decease is. Your next step is to search deeper and find out as much as you can about it then start an awareness group by teaching others and getting them to join you with spreading the word about it. Sort of like a foundation.
You can use your son as an example and make fliers to help awareness. It's worth it.
I hope soon that your son gets healthy and you find out the root cause of this.
Good luck and my thoughts and prayers are with you and your son
All the best in 2009
@barbiegirl13 (1588)
• United States
31 Dec 08
I am looking into starting a foundation. It will be very hard to do. What I can't help to think is , this happened to my baby and there is nothing stopping it from happening to some one else's. My son was mis-diagnosed with a viral disease before I went out and got 2nd and 3rd opinions. Rural doctors like we have around here just do not know anything about this disease. I fear that there might be lots of babies that have this disease but are being mis-diagnosed . I have done my part by calling local doctors around here and letting them know about this so that they in the future can be on the lookout for the signs. This disease carries almost no symtoms and needs no treatment for adults and older children but is always fatal without treatment when it occurs in infants. When I actually found a doctor that knew there was something wrong I was told that without treatment that he would have never made it through the week. I thank god for helping me demand anwsers and getting him to the doctors he needed for this. You never think that a short walk outside with your baby can make them sick but it happened to us. A little bird droppings and soil can harm an infant. I am sorry my posts are so long but I just have so much to say about this.
1 person likes this
@sunil_008 (1269)
• India
31 Dec 08
i can understand how you must be feeling now but since i don't have much knowledge about this disease so i can only help you in suggesting to go through the website www.healthline.com. i am sure you will get some answers to your questions there.Also you can visit the site www.bestdoctors.com.hope your son will be okay soon. god bless him
@rashmi1979 (112)
• United States
30 Dec 08
Hi Barbie! I do not have nay new information for you but Sure will Pray for Wyatte and hope that he gets well very very soon. Your son is very brave and you are great parents! May God be with you guys throughout...I'll keep praying..
@barbiegirl13 (1588)
• United States
31 Dec 08
Thank you for your prayers. They are greatly appreciated. God Bless!
@marketing07 (6266)
• South Korea
30 Dec 08
hello barbie,i was moved by your story..im sorry i havent heard of someone who has the same condition as your son...i hope i can help you...but all i can do is to pray f
or him...and i do hope doctors can find way to cure him...
or him...and i do hope doctors can find way to cure him...@barbiegirl13 (1588)
• United States
31 Dec 08
Thank you for praying for him. Thank you and God Bless you and your family.
@rodveiga (333)
• Portugal
30 Dec 08
I was looking for this kind of disease and found this
http://www.ncbi.nlm.nih.gov/pubmed/10972016?ordinalpos=14&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
I'm sorry the link is so long but... this is a small hope, you'll see
Hope your boy be well soon. My youngest son had a kidney illness when he was born and now he is well. I imagine what you are suffering...
May your New Year bring you more peace and joy than this one.
@barbiegirl13 (1588)
• United States
31 Dec 08
I am so sorry to hear that your son has had a kidney disease but I am so thankful that he is healthy again. Thank you for sharring your story. It hits and hurts the most when it happens to someone you love , especially when it is your child.
@Zanetti (71)
• China
31 Dec 08
uh,I am a stranger here.but I find that people all over the world here are very passion.if you've issue and left it here,many people will respond to it.It's very kind of them and the people who is in trouble can get so many suggstions.Everything goes easy.Enjoy the time at mylot.
