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Very serious illness, not sure what

post #1 of 12
Thread Starter 
My 20 month old son has been "off" for quite a while. Symptoms included irritability, refusing to eat, occasional vomiting, pale complexion, and he was also unstable on his feet.

Blood tests were ordered and he had very low protein, albumin, iron, and hemoglobin. Hemoglobin was actually 4.1 so he was admitted to the hospital for a blood transfusion.

That occurred Wednesday night/Thursday morning. He did have a reaction towards the end of the transfusion, but after some benadryl, they were able to resume and complete the transfusion.

The doctors think some sort of GI issue is to blame and ran a bunch of tests. We meet with a GI specialist on Wednesday. They told us to take him off dairy, particularly milk.

His hemoglobin went up to 10.1 following the transfusion and we were discharged. He was subdued last night but we thought he was just tired/overwhelmed. In the middle of the night, he threw up the apple juice we gave him, but I figured it was just due to an empty stomach.

He kept breakfast down (a small amount of waffle and half a banana). He ate quite a bit of lunch (chicken & vegetables over rice) but vomited it up about five minutes later. The vomiting seems different than before the transfusion, a before he mostly seemed to their up due to some sort of texture aversion rather than stomach issues.

After awhile he was hungry again and had some iron fortified bread. Again, a short while after eating, he threw it all up.

He also continues to be very unstable on his feet, even worse than before the transfusion.

We called the hematologist and she thinks he possibly now has the flu. The other possibility is that he has something she's missing. She said his tests look good and it's not behaving like the cancers that generally would cause similar symptoms. She is, however, very concerned about the continued instability. She said she expected that to disappear after the transfusion.

She told me to give him small sips of Pedialyte to keep him hydrated. If he gets worse or dehydrated or if I simply feel like this is more than the flu, we are supposed to bring him in and have him readmitted. Her first step at that point would be a brain MRI. Otherwise, we have a followup scheduled with her after we see the GI specialist on Wednesday.

I guess what I'm looking for is whether anyone has any ideas, and advice on whether to wait or take him in now. I would definitely take the "better safe than sorry" route and go in more, except he was extremely traumatized by the hospital stay, to the point where he would scream whenever anyone entered the room, for fear he would be poked and prodded. Last night he had a total meltdown simply due to a middle of the night diaper change. So, I don't want to subject him to another hospital stay if I'm just being a paranoid mommy.

Thanks to everyone who made it through this marathon post.
post #2 of 12

I'm sorry your son is still unwell after his hospital stay.

I read your post to my DH and neither of us are sure what is going on with your son but we both think he needs more investigation. What sort of hospital was he in for the transfusion? Is there a children's hospital nearby? We both think it would be worth presenting at your nearest children's hospital for further investigation. The persistent ataxia is a significant concern in our opinion.
You can just present at the Emergency Dept. you don't need to have spoken to anyone beforehand.

If it was a children's hospital you were in previously then it sounds like the haematologist is willing to readmit your son so I would go that route.

All the best. I hope you get some answers soon

Kind regards

ETA - how long ago did the transfusion finish? The new red blood cells won't achieve their full oxygen-carrying potential for about 72 hours so, if it hasn't been that long yet, it is still possible that the ataxia could resolve. I wouldn't wait if you're still concerned though.
Edited by katelove - 1/11/13 at 8:12pm
post #3 of 12
He could be having a reaction to the transfusion.


If he were my child, I'd have someone take a look at him, probably going back to the hospital, given the hour.
post #4 of 12
Thread Starter 
We are back in the hospital, going to be running a bunch of tests.
post #5 of 12

no ideas, but just wanted you to know I am thinking of you and your son. I hope you get some answers really soon xxxx

post #6 of 12

did they check his blood lead (pb) levels?

post #7 of 12
I'm sorry he hasn't improved but I think you've made a good decision. I hope you get some answers soon.
post #8 of 12
Thread Starter 
Today he had head to toe x-rays, bone scan, and abdominal ultrasound. All were negative.

He had a complete meltdown after the tests... So overwhelming for such a little guy.

The brain MRI is scheduled for Monday. Since all his tests look good, it's not a critical emergency scan. We were given the option to go home and we decided to go. He seems a lot better tonight, and is eating well and keeping it down.

The thought at this point is a combination of too little food, too much milk, too much ibuprofen, and possibly a milk protein intolerance, along with the return of his acid reflux and possible behavioral issues/autism.

We're hopping for an uneventful night without any meltdowns!
post #9 of 12

Did they test him for celiac disease?

post #10 of 12

I was also going to say celiac.  Celiac can/will also have a milk allergy.  I was recently DX with celiac and I'm 38 yrs old. I can tell you any wheat/gluten/dairy makes me violently ill.  I would rather starve than risk eating if I'm not sure if the food is 'safe' or not.

post #11 of 12
My now 9 yo DS had really strange, atypical symptoms as a 2 yo. Many similar to what you describe and also out of the blue (seemingly) episodes of anaphyaxis. After years of misdiagnosis (including a negative test for celiac), we halted his symptoms with a gluten free diet. We still don't know whether he has a wheat allergy or not, we just avoid with great success.
post #12 of 12
Thread Starter 
He was tested for Celiac because I have it. The test came back negative.

His diet is practically gluten free because the meals I make are almost all gluten free. Occasionally he gets regular bread, waffles, etc., but mostly gluten few stuff.

He's doing great this morning, though the liquid iron nearly made him vomit. We'll have to figure some other way to give it to him.
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