Anyone here who can help me understand my son's blood test results?

a reply to: paperdoll

The only other words used were "oblong" shaped. His nurse told me that. He says that his legs hurt but when I ask him to tell me where he points to just one spot. Always the same spot. Circulation is good. This is why we were sent to the pediatric rheumatologist first. I haven't been give the x-ray results yet.

a reply to: Kentuckymama

Has anyone ever mentioned Hemochromatosis?

a reply to: BarefootInWinter

Thank you. I have resisted looking online because I know that it can only cause more fear. That is why I asked here. Dr Gotte has been great so far about answering questions we have. It was very late when I made this post hoping for someone with some experience to speak up. It just wasn't practical to call the Dr then.

a reply to: ckhk3

Thank you.

a reply to: Bedlam

No mouth ulcers. Occasionally he says his throat hurts.

a reply to: DBCowboy

No, haven't heard that one yet.

I am reminded once more as to what a family ATS is, despite those who are a bit patronizing. As a worried parent, there is no such thing as too much information. And some of these sharings and answers you are viewing are fascinating.

What I like about what you are doing is that you now have a whole lot of other ideas to either look into or set aside if the professionals start running out of ideas. My two cents are probably not worth two cents here and now, but I remember hearing someplace at the human medical conferences we used to attend, that parasites can cause symptoms that can be on 6 week cycles. That's probably way low on the totem pole of considerations, but something for the miscellaneous file.

My prayers and support are with you, as I am sure with lots of others who are reading this but not posting!

Methemoglobinemia, Just a thought, also found hereditary in Kentucky. The Blue Fugate Family,...I hope you find the answers you seek, Our children are the most precious thing we have.

I have a lot of sympathy for you, but diagnosis by Internet is dangerous. No ethical medical professional would attempt it. People say ATS is "like a family," and that's probably true. Would you trust Aunt Gladys, who has no medical training, to diagnose your son's illnesses? You can certainly rely on ATS for lots of political opinions, but to rely on ATS for medical issues is insane.

a reply to: schuyler

Again, I'm gonna say that I'm not looking for a diagnosis. I am already seeing all the specialists I can handle. I'm looking for opinions from others that have been through a similar situation or has enough medical knowledge to help me learn more.

Not asking Aunt Gladys. Not doing internet searches. Not asking a neighbor. I'm asking what I know to be a very knowledgeable group of people.

Okay, editing to apologize if I sounded mean. I just wanted everyone who read this to understand that I am not looking for any diagnosis from anyone other than his Dr. I just want to have opinions. Asking in a place where I know there to be very knowledgeable people is what I'm doing instead of randomly searching the internet. I know this can be bad. Very bad. I have never been so scared in my life.

a reply to: ClownFish
You are right. It's a great group. I knew there would be a few people who either wouldn't read before commenting or would be less than helpful. It's worth it if only for the chance to hear from the people who care. I have will keep the parasites issue in mind. Thank you.

a reply to: Kentuckymama

I am curious about your little guy's personality. Is he a high, medium, or low energy kind of kid? Disposition, too?

a reply to: schuyler

She isn't relying on ATS, at all. Clearly her son is being seen by his pediatrician and a specialist.

a reply to: MotherMayEye

Robbie is the most loving child I have. My other 2 are as cuddly as a cactus. Energy wise, he's your typical 5 year old until right before the fevers and for about 2 days after. He's smart, he's kind. Happy with everything and everyone. Thank you for replying.

a reply to: Kentuckymama

I'm a Kentucky mama, too. I'm in Louisville. I have a 2, 9, and 25 year old. I sympathize with you, mama.

The reason I asked those particular questions is because I know that 'how they are acting' is an important indicator of how they feel. My nine year old has allergies. He behaves like he is uncomfortable, a lot of the time. It sounds like other than the pain your son is verbalizing he isn't always uncomfortable. And that is so important.

I've been doing some digging today -- I have no medical insight to contribute, sorry -- but I do think you will likely get answers from the testing that's being done. Try to hang on for it. However, I am like you -- I'd ask anyone and everyone to brainstorm, looking for leads.

Still, do your best to try to hang on a bit and know that your little guy is happy and loving -- and doesn't seem to be dealing with debilitating ongoing pain. There is a mystery here though and you have my support in turning over every rock to try to find an answer.

I just wanted to share what I thought. *hugs*

You are awesome. Thank you so much for your concern. That's a big age difference in your kids. My oldest is 12, my girl is 9, then Robbie Rotten. We aren't too far apart in distance. I'm in the Owensboro area.

a reply to: Kentuckymama

I am still looking around. Do you notice any other things like bruising easily or falling down more than normal? Little things can sometimes be a clue.

It is good that they are doing genetic tests too. I can't imagine not knowing and having to wait.

I live in Nashville, so if you ever need anything while in town like directions or something, feel free to ask! Hopefully you can get answers and find a doctor closer to you...or better yet, not need one at all!

Not sure if you believe in prayer, so please, I don't mean to offend ya, but I said one for your family. If you don't, then just think of it as a little positive energy.

Like the others I though SCA, but I won't attempt any other guesses, and that's all it would be. I just wanted to tell you that I know you are scared, anybody would be. I hope they find the cause and it's treatable. I'm so sorry he's sick. Poor little guy. I wish him to be well. My eyes are welling up with tears thinking about him feeling so bad. Fever makes you so miserable.
I will keep him in my prayers every day. Keep us posted. My best to you both. I wish there was something I could do to make it all better.

Stay positive, for him and for you.

Bless.

a reply to: Kentuckymama

It never hurts to ask around and brainstorm. I would be to, who knows -- you might hit on something that might be helpful, and of course, you discard the rest.

Let us know.

a reply to: BarefootInWinter

He does get bruised easier than my other two, but the bruises don't seem worse or last longer than normal. Dr Gotte asked me that question also. Thanks for the offer about directions. We just went down the night before because it's about a 3 hour trip and we are unfamiliar with the area. Good thing we did. Pretty town, but the traffic was crazy. So many roads turning here and there. Thank you for the prayer. No one should ever be offended by someone saying a prayer for them. I'm certainly not. Born and raised Catholic here. You have been very kind to me. Thank you. We go back on May 10th, so hopefully there will be at least some answers then. I just wish I could go through this for him. He doesn't deserve this.