beacuse I believe in the power of prayer.. i need your help

My almost 2 yr old son Ethan has been in the hospital since Wednesday, he will be there at least until this upcoming wednesday. They are unsure at this time what exactly is wrong with him but he has poor weight gain, failure to thrive, high white blood count, chronic infections and anemia (which has been a life long issue) he has had a 105 fever on and off for well over 9 weeks now and has been in and out of the hospital since the new year. This time however they are really being proactive on trying to figure out the Why and How he keeps getting the high fevers, where the infections are coming from. They have called in nearly half a dozen specialists to try to find out whats wrong with him...Right now were looking at Thalassemia, PIDD with subclass IgG deficiencies (Primary Immune deficiency disorder) his heart murmur may have been caused by his thalassemia and while unlikely possibly leukemia among other disorders/diseases. Unfortunately we do not have any concrete answers of diagnosis yet, these are the things they are going by right now. They have done several tests, blood, xray, exc resulting in blown/ collapsed veins in both arms, hands and ankles. they are having difficulty getting the blood they need because of his poor veins. If the diagnosis comes back he does NOT have PIDD then the gastro dr will move forward with a colanoscapy and (What ever the technical term is for intestinal "oscopy") among other things.. finally the drs are trying to figure out exactly what is wrong with him... this is the first time since wed i have been home and after posting this and taking a shower ill be headed back. I do have access to email/websites/im/exc on my phone but obviously this lengthly post is much easier to do with a full keyboard.

While we are keeping our heads and hopes high for our little boy we are understandably concerned about him. Please those of you who do believe in the power of prayer please keep him in your prayers. For those of you who dont, if you could keep him in your thoughts we would be forever appreciative.

Wow. You and your son are in my families prayers. I'm sure everything will turn out OK. Keep your head up and have faith.

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Originally Posted by AshleyB

My almost 2 yr old son Ethan has been in the hospital since Wednesday, he will be there at least until this upcoming wednesday. They are unsure at this time what exactly is wrong with him but he has poor weight gain, failure to thrive, high white blood count, chronic infections and anemia (which has been a life long issue) he has had a 105 fever on and off for well over 9 weeks now and has been in and out of the hospital since the new year. This time however they are really being proactive on trying to figure out the Why and How he keeps getting the high fevers, where the infections are coming from. They have called in nearly half a dozen specialists to try to find out whats wrong with him...Right now were looking at Thalassemia, PIDD with subclass IgG deficiencies (Primary Immune deficiency disorder) his heart murmur may have been caused by his thalassemia and while unlikely possibly leukemia among other disorders/diseases. Unfortunately we do not have any concrete answers of diagnosis yet, these are the things they are going by right now. They have done several tests, blood, xray, exc resulting in blown/ collapsed veins in both arms, hands and ankles. they are having difficulty getting the blood they need because of his poor veins. If the diagnosis comes back he does NOT have PIDD then the gastro dr will move forward with a colanoscapy and (What ever the technical term is for intestinal "oscopy") among other things.. finally the drs are trying to figure out exactly what is wrong with him... this is the first time since wed i have been home and after posting this and taking a shower ill be headed back. I do have access to email/websites/im/exc on my phone but obviously this lengthly post is much easier to do with a full keyboard.

While we are keeping our heads and hopes high for our little boy we are understandably concerned about him. Please those of you who do believe in the power of prayer please keep him in your prayers. For those of you who dont, if you could keep him in your thoughts we would be forever appreciative.

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Well you and yours will be in my prayers and remain there until its needed.Please keep us posted and take care :gj:

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Originally Posted by joepythons

Well you and yours will be in my prayers and remain there until its needed.Please keep us posted and take care :gj:

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Wow, I don't usually pray but for you and your son I will. My cousin does every night so i'll have her pray also. I hope all goes well.

Trevor

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Originally Posted by AshleyB

My almost 2 yr old son Ethan has been in the hospital since Wednesday, he will be there at least until this upcoming wednesday. They are unsure at this time what exactly is wrong with him but he has poor weight gain, failure to thrive, high white blood count, chronic infections and anemia (which has been a life long issue) he has had a 105 fever on and off for well over 9 weeks now and has been in and out of the hospital since the new year. This time however they are really being proactive on trying to figure out the Why and How he keeps getting the high fevers, where the infections are coming from. They have called in nearly half a dozen specialists to try to find out whats wrong with him...Right now were looking at Thalassemia, PIDD with subclass IgG deficiencies (Primary Immune deficiency disorder) his heart murmur may have been caused by his thalassemia and while unlikely possibly leukemia among other disorders/diseases. Unfortunately we do not have any concrete answers of diagnosis yet, these are the things they are going by right now. They have done several tests, blood, xray, exc resulting in blown/ collapsed veins in both arms, hands and ankles. they are having difficulty getting the blood they need because of his poor veins. If the diagnosis comes back he does NOT have PIDD then the gastro dr will move forward with a colanoscapy and (What ever the technical term is for intestinal "oscopy") among other things.. finally the drs are trying to figure out exactly what is wrong with him... this is the first time since wed i have been home and after posting this and taking a shower ill be headed back. I do have access to email/websites/im/exc on my phone but obviously this lengthly post is much easier to do with a full keyboard.

While we are keeping our heads and hopes high for our little boy we are understandably concerned about him. Please those of you who do believe in the power of prayer please keep him in your prayers. For those of you who dont, if you could keep him in your thoughts we would be forever appreciative.

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sorry quoted the wrong message.

You got it girl :hug:

thanks everyone I really do appreciate it. I will be heading out in a few, just feeding everyone now and leaving. thankfully we have family near by that can care for our older boy and husband has been working so hes had to come home everyday to keep everyone here taken care of as well. its the small things right :gj:

Ethan is such a strong brave little boy, hes really impressed me with his resilience, all the nurses know him by name already, he hops off the bed and as soon as his little feet his the ground hes out the door and down the hall...

Ashley from my momma's heart to yours....you, your son and your family will be in my thoughts and prayers. Stay strong but lean on the nearest kind shoulder when you can dear. I'm sure the whole community here is sending out good thoughts/prayers that the doctors will soon find and begin to deal with whatever is going on for your little guy.

Your son and your family will be in my thoughts & prayers.

Hang in there :hug:

Your son will be in my prayers....keep us updated
and God bless

Your son and family are in my prayers. Hopefully everything turns out to be okay.

Ashley, my thoughts and prayers are with you and your family. I hope the doctors find out what is wrong with Ethan and get him on the road to recovery soon, until then stay strong. :hug:

how long as he been getting the fevers?, last year my son caught a bug called roseola, we didn't know what it was at first, he was getting fevers spiking 105, he stopped breathing because of the fever so my wife raced him to the hospital, he was in isolation for a week, they ran every test they could think of on him, well after he was released we took him to his pediatrician, when we undressed him he was covered in a head to toe rash, the doctor was so happy!!it confused me but he told me he knew what it was defineately now, roseola is high fevers for a week then at the end of it they break out in a rash, maybe this may help you :)

Im sorry...I hope the best and will make a prayer for you Ash.

Oh Ashley. You are in our hearts and prayers that this ordeal will have a positive resolution and that your son is home again soon. ::hugs::

Ashley, I definately will keep him in my prayers. I as so sorry to hear about that. I hope that he gets well soon. With so many good doctors, I'm sure that he will.

I am praying right now for your little ethan to grow strong and healthy soon! May God bless your entire family.

Ethan, you and your family are all in my prayers and I have passed this along to my mom who meets with some women from her church twice per week, during which time they share prayer requests. Keep us up to date, and I hope the doctors will have some answers for you soon. :hug:

Sending prayers your way. Hope everything turns out well.

Our family's prayers and best wishes are with you and your faimily.

Neil

Keep the faith. :)

We'll be thinking of Ethan and your family in our prayers as well. :hug::hug:

Ashley, so sorry to hear about this. Sending all my best... :grouphug:

Your family and son are in my prayers.
God Bless.

many hugs.

I will certainly pray. JEHOVAH-RAPHA is still in the business of healing!

I wish you and your family the best of luck with everything. I'm so sorry to hear about this.:hug:

Ashley, I am really sad to hear of this news. This is the most difficult path that any parent can walk and you will walk it through to its resolution. There are no prescribed methods of how to best deal with the uncertainty, fear, and immense sorrow you must be feeling and so understand in your heart of hearts that you are doing everything the way you are supposed to do it.
My daughter has chronic myeloid leukemia and is young and is female and so it is a very atypical occurrence. Leave no stone unturned in the diagnostic process....
My heart is with yours and mostly with your son Ethan; there are no words that make this better. Just accept that people are holding your family in the light and thinking good thoughts for all of you.
With hugs, McKinsey

sending love and reiki hugs... any update?

Hope everything is well Ashley. God bless

Thank you everyone for your thoughts and prayers, they have certainly worked!

Ethan came home this afternoon around 4pm. He has quite a few follow-up consults with specialists and it will only be then do we know his true diagnosis. Right now he definetly has an iron deficiency (which we knew) they ruled out PIDD which is fantastic news.. the subclass deficiencies also came back negative which is great.

They are moving onto some kind of inflammatory bowel disease (crohns or ulcerative colitis) we will be a bit closer to knowing during our follow up when we get the results in, if symptoms still point in that direction they will move forward with doing an endoscopy and colonoscapy.. they will also let us know if he has thalassemia, which is another type of anemia. So for now thats what were dealing with. A whole lot better than leukemia which they have ruled out.

so thank you all again for all your support we cant thank you all enough!

this is a pic i snapped while he was in the hospital
http://farm3.static.flickr.com/2371/...d2bc31a347.jpg

Ashley, glad to hear your son is home where he belongs. I know waiting for those results will feel like forever, but you have plenty of support here while you wait.

I am so glad that he got to go home, Ashley. I will still be thinking about your family in my prayers. :hug::hug:

dang double postings.. sorry about that...

thank you :D the doctors wanted to keep him until the results came in but that was going to be another week from now! Were thankful he got to come home, hes reading a book as i type.. bed time is fast approaching, im looking forward to trying to get back in routine!

Even though you don't have a definitive diagnosis, I'm sure it's wonderful to have a few of those scary diseases marked off the list. I'm so glad that your baby is home, and I hope they find a treatment that works soon! :hug:

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Originally Posted by tigerlily

Even though you don't have a definitive diagnosis, I'm sure it's wonderful to have a few of those scary diseases marked off the list. I'm so glad that your baby is home, and I hope they find a treatment that works soon! :hug:

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:) thanks christie as a mother im sure you know what its like... something being wrong & it being totally out of your hands it is great having a few very scarey ones marked off. its been a very long almost 2 years with him.

So glad to hear all is looking up. Happy to hear that he's back home and doing better.:) The little ones will worry you till your old and gray . I thought when mine were grown my worries were over. Not true. You can't help but worry about your kids.

Ashely, has Ethan been tested for pernicious anemia (also known as megaloblastic anemia). Also for celiac disease, which can be the root cause of this type of anemia as well as other very confusing symptoms.

The reason I ask is I have an older sister that had this type of anemia and it went undiagnosed for years. Some of your son's symptoms sound awfully close to what she suffered before she got the right diagnosis.

The other thing that kind of red flagged for me was celiac disease. We have good friends that had a child Ethan's age with a lot of failure to thrive stuff and again, a lot of what you are describing as symptoms. Many, many doctors came up with many, many ideas but nothing really worked and the poor kid was literally fading away. One doctor finally said "maybe celiac???". Bingo, it was celiac, it's now being dealt with and that child is amazingly well and growing like a weed now. Celiac disease untreated can cause anemia as well as a host of other serious, long term health concerns.

My ex-mother-in-law wasn't diagnosed with celiac until her 60's. She'd been called a hypochondriac her whole life and was always skinny, unhealthy, tired and sickly. It was celiac. The medical community is starting to realize that this reaction to gluten is a lot more common and a lot more serious than once thought.

I'm not doctor hon, but I believe a parent's best defense is to do as much research as they can and be as pro-active as they can. I've included a bunch of links for you to do some reading and see if some of this fits Ethan's health issues.

http://www.webmd.com/a-to-z-guides/u...-anemia-basics (especially page 2)

http://www.childrenshospital.org/az/...geS1287P0.html

http://www.kidshealth.org/teen/disea...ve/celiac.html

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/#2

I noted you mentioned a possibility of crohn's disease. Please note in those links above they mention crohn's as yet another result of undiagnosed celiac disease.

Wow I can't believe I missed this thread


I am so glad to hear your little boy is at home! :hug:

Prayers to your son, you, and your family from the Fat Boy Crew.

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Originally Posted by AshleyB

:) thanks christie as a mother im sure you know what its like... something being wrong & it being totally out of your hands it is great having a few very scarey ones marked off. its been a very long almost 2 years with him.

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That's the absolute worst feeling in the world. My son had to have surgery when he was 2, and the doctors woke him up before the pain meds had a chance to kick in. Those were some of the worst moments of my life, but through all that all my son wanted was me. To be held by me. Such a humbling experience.

I'm glad your sons have you to lean on. It sounds like you're a great mom. :yes:

Ashley ...I was about to post about celiac disease , my eldest suffers from it ....when I saw Frankykeno post.

I have a very strong feeling about this .

A duodenal biopsy should show if it is celiac disease .

If it is this , its diet controlled ...ie Gluten free diet


It can be hereditry as well , tho can skip a generation .

Foul smelling fecal matter can be another indication , as can distended abdomen in toddlers .

Either way I am sending Healing rays your way Ashley

i will be praying for your son and your family.

God bless.

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Originally Posted by Royal Tartan

Ashley ...I was about to post about celiac disease , my eldest suffers from it ....when I saw Frankykeno post.

I have a very strong feeling about this .

A duodenal biopsy should show if it is celiac disease .

If it is this , its diet controlled ...ie Gluten free diet


It can be hereditry as well , tho can skip a generation .

Foul smelling fecal matter can be another indication , as can distended abdomen in toddlers .

Either way I am sending Healing rays your way Ashley

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That's what they are doing with the little guy I know with celiac. A special diet (there a tons of excellent cookbooks for cooking for the celiac child out there). I literally cannot believe that turn around that child showed. He went from being skinny with that belly, being sick all the time, not thriving or growing right and a few months later, the kid is racing around the backyard like any 3 year old. It was like a miracle! The sad thing is how often celiac isn't diagnosed quickly enough. This particular child was ill for most of his life, in and out of doctor's office, his parents were even scared that someone would think they were neglecting him - and it ends up being something that can be managed with a special diet. It's been 3 years now since his diagnosis and he's doing beautifully, even knows to tell people what he can and cannot eat. :)

thanks everyone again for the thoughts and prayers..

Joanna, I will ask the ped this afternoon when we go in (routine check him over now that hes home visit, schedule specialists, exc) I do know the ENT wants to also do a silia (different than ciliac?) biopsy and see if its that. I will certainly mentain what you wrote, in fact ill write down the exact name so not to mess it up. :gj: thanks for the suggestions (you too royal), at this point im no doctor either but they have made ALOT of misdiagnosis's along the lines, from cystic fibrosis to autism with him (no joke, they were so certain about CF they even did the gene test after the sweat test was negative) anything is worth bringing up at this point, the creepy thing is he does have a distended stomach area (like a small ball under the skin on his abdomen) and has some FOUL poops, we have always said that! thanks so much for the input. :bow:

Ashley, there's a number of tests I believe to diagnose celiac disease. Some are blood tests (though in very young kids my reading says they can come back false negative), as well as a couple of more invasive but necessary tests. If I was you before that appointment today I'd be googling my butt off about celiac disease and young children.

For a disease that some doctors seem to think is "fairly rare" there's a LOT of links, research sites, parent support sites, etc. Arm yourself well with this stuff, heck print stuff out if you want to show your peds doctor. It sure sounds like your little guy has some of the signs of celiac so it's something to definitely discuss with the doctor today.

I know before the little guy we know was diagnosed they asked the parents to NOT put him on a gluten-free diet as they needed to get the reactions in testing. Then he went on his gluten-free lifestyle and it's a remarkable change. It was a relatively fast diagnosis though after all the years of nobody knowing what was wrong and this child just going downhill more each year.

From what I read on some of those sites I posted for you, there are even blood tests to see if you and his dad carry the markers that mean he could have inherited celiac as it's a genetic disease. Do you know of anyone in your family or your husband's that has irritable bowel disease, crohn's, delayed puberty, unusually short stature, failure to thrive babies, etc.?

Another thing Ashley, think back. At what age did your son start to just not "look right" to you, your gut instincts as a mom were sort of triggered. Was he a healthy nursing infant but that started to change after the introduction of baby or table foods? Lots of commerical baby food has gluten in it as well as things as innocent looking and popular with kids as ketchup. I'd sit down and go back in your mind to the time when he was healthier and at what age these health issues began to manifest themselves, even if it was only you that saw them at first and the doctors blew you off (some do and think we are "just a nervous mother").

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.....have a distended stomach area (like a small ball under the skin on his abdomen) and has some FOUL poops,

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Ashley , these are CLASSIC symtoms of the disease . It is very often not picked up by peds.

Gluten attacks the digestive tract , specifically the villi , Gluten makes these villi useless. Its the villi that extract the nutrients from digested food . If it is not extracted by the villi , it rots in the digestive tract ...hence foul smelling poops.

Swollen abdomen is also indication of digestive problems with Gluten .

The only 100% sure fire way to tell is invasive sadly ...duodenal biopsy .

As has been stated , once diagnosed ( if it is that ) it is very easily sorted and also the change is startling ...I have witnessed my daughter transformed after being diagnosed ( BTW of which I had to fight our peds here , they had lack of knowledge also ) .

Also , sadly , there is no known cure for it but there are heaps of support groups around .

Well, i just got off the phone with one of his specialists and he doesnt have HIV :rolleyes: (uh yeah, knew that one!) and he does NOT have celiac disease either, turns out they DID do blood tests on him (As well as lots of stool tests, turns out his are just stinky but he has wonderful nutrician absorption) back to the drawing board.. there are still LOTS of tests that havnt come back yet but as the results come in they will be calling us.

Joanne, Ethan fell off the growth chart when he turned 3mos old. His growth slowed, as did his development. he never even walked until he was well over 17mos. he nursed until he was 18mos, never had processed baby food and never had a drop of formula... we made everything he ate. even later on now that he eats regular foods (stirfry, raw fruits, veggies, exc) nothing has gotten better or worse this all started a LONG time ago. My sisters were VERY premature twins but other then them we dont have any history of "failure to thrive" everything down the lines had a reason (uncle was small had some sort of disease, cant remember what, twins were premature with LOTS of health issues, Darren (ethan dad) was skinney but is a normal sized man now) so otherwise no. Aside from obesity on paternal side, my side has some diabettes, all late onset. We have some history of high blood pressure also late onset, most likely caused by diet. so really overall were a pretty clean slate in terms of health. But like my mother says jokingly (so messed up i swear) two donkeys cant make a racehorse lol.. the doctors said realistically if blood tests come back fine and colonoscapy and endoscopy come back fine he will leave the dr with a diagnosis of "failure to thrive with developmental delay" which is exactly where he stands now.. plus iron deficiency anemia which likely caused his heart murmur... thanks for your input everyone.. im not about to give up now :gj: we will exhaust every effort to find out something! 3pm is his dr appt