15 Month Old w/ Undiagnosed Symptoms

[Heathmcmi]

Our daughter has been diagnosed with a large ASD, hiatal hernia, and now ulcers with inflammation. They have run biopsies and allergy testing and nothing is coming up for why she has these ulcers. They're found in the duodenum and large intestine. She has chronic weight loss, and loss of appetite. Her blood work has come back with slightly elevated white blood cell counts across the board, bun/creatine ratio levels, and low RBC levels. As a mother I have a gut-wrenching feeling that there is something else going on that hasn't been found. Were searching for an answer, but it's so difficult.
These are the rest of her levels that were flagged.

BUN/Creatine levels were a 55 (range 8-27)
Neutrophils were 11 (range 22-60)
Lymphs were 74 (range 28-66)
Monocytes were 13 (range 3-10)
Lymphs absolute 8.1 (range 1.6-5.6)
Monocyctes absolute 1.4 (range 0.2-0.8)

Side Note: She is on prevacid 15mg, and pepcid 1 ML

[crackerjack4u2]

Poor little gal.  I know your heart is breaking and you have to be worried sick.   Was her temp really high at the time?  An extremely high temp or an infection that has gotten into the blood stream-(sepsis) can cause seizures/seizure like symptoms as well.  Also, has she been checked for meningitis?  There are soooo many things that could have caused this but the other symptoms should help narrow the search some.    I believe she needs to stay at the hospital like her neurologist suggested until they find the cause and if they don't find one shortly, I'd be searching for other specialists who possibly can.  Someone out there has the answer, and has seen all these symptoms before.  Hopefully you can find your answers soon and get your little angel home, well, and happy. Reilly ,You and Your Family are in my Prayers.  God Bless

[Heathmcmi]

Well, sadly Reilly was admitted into the hospital around 1:30am on Tuesday, because they felt she had a seizure. She woke up screaming, then her whole body was twitching, her breathing was irradic, and her pupils were RAPIDLY changing sizes. She's currently attached to a video EEG, however, they haven't seen anything even though her entire body keeps spasming. The neurologist is defintly concerned and will not be sending her home until she's acting like herself again. They'll aslo be running an MRI within the next day or two. She's also, stopped eating again. I hate the feeling of I'm afraid to go to sleep.

[crackerjack4u2]

Yes, please keep posting the findings and I'll keep this on my watch list.  The main thing is if she isn't getting better or you're not getting answers regarding the cause etc.  Do Not hesitate to tell the doctor to refer her to 50 different doctors if that's what it takes to help get her well.  Good Luck & God Bless.  I hope they find the cause, & she get's better real soon.  

[Heathmcmi]

Thank you for your response!!

Her ASD will actually require open heart surgery to close because of where it's positioned. Of course, it needs to be right next to the "pace maker" muscle of the heart. However, our cardiologist is WONDERFUL and is doing everything he can to make sure she gets the best care. We'll also, be going to Children's Hospital of Philadelphia!

Her hernia hasn't been decided on whether it'll actually be surgically closed or not, I believe they are waiting to see if things improve or not.

Her stools have all been tested numerous times, and everything has come back normal. I'm just glad her body is fighting off what-ever it is that is going on. I still have the feeling that someone is missing something. She's also started sleeping A LOT more! I mean more than her fair share. We see her ped. of Wednesday.


However, I will keep you updated, and again thank you, and God bless!

[crackerjack4u2]

Bless here little heart, she's too young to have to be going through all this.

Have you noticed any blood in her stool or are her stools dark/tarry in color, like coffee ground color?  

It is my impression that she actually has 3 different problems going on at the same time, and only 2 appear to POSSIBLY be related to the same cause.

1) ASD- a cognitive defect that she was either born with or formed shortly there after- may close itself, or may need surgery in the future.  This appears to be a separate problem from the next 2.

2)Hiatal hernia-an anatomical abnormality which again she was probably born with.  Allows for gastric juice regurgitation which may possibly be contributing to #3.
If you get this fixed #3 may disappear but there are a couple of tests for #3 that I think definitely needs to be checked before any type of surgery should even be considered.  

, 3) ulcers and inflammation of the duodenum and large intestines. The ulcer would be a deuodonal ulcer. - It is possible this is related to the hiatal hernia but there is a
Bacteria called Helicobacter pylori or H. pylori that I would ask the doctors to check for first.  The reason I'm thinking this may be a good possibility is that the symptoms are the same deuodonal ulcers inflammation in the large intestines, and her neutrophil count is low  which is the white blood cell in the body responsible for keeping out Bacteria-which makes me think it probably is a bacteria infection of some sort. Her mono absolute and monocytes are high and that shows they are fighting some organism in the body.  Monocytes expecially recognize gram negative bacteria, and it just so happens that  H. pylori is a gram negative bacteria.  

I could be way off base on this, but I'd definitely have them rule this out before any major decisions are made on the hiatal hernia.

To check for H. pyloric they need to do a blood antibody test or a stool test specifically looking for this bacteria.

The other test results High BUN could be from dehydration- which I'd almost bet this is the cause, but could also show a problem with her kidneys.  

The lymph high readings shows her body is doing it's job trying to fight off an infection which is probably in the GI tract where the inflammation and/or bacteria is at.  Inflammation/Infection generally go hand in hand.

I hope this helps.  Please keep me posted on what you find out.  Good Luck