Well at least the test showed something?

ToastieSimons · July 2012

DS1 is neutropenic. Now we have to find out if it's intermittent or chronic. We're still waiting on the rest of his bloodwork for IgG and IgA levels. Also, we took him to the ER last year during one of his fever flares. They took blood through a finger prick because after poking him 4 times they couldn't get a vein. THEY NEVER RAN A CBC! The only records they have are a urinalysis. I know for a fact they drew blood because it was the worst attempt ever followed by them squeezing his finger for 10 minutes to fill a vial.

So now I have to attempt to possibly get records from another hospital when he was sick one other time. But of course it's 400 miles away and we still have to unearth our printer after moving.

So now we have to talk to the rheumatologist about starting cymetidine and PFAPA and the fact that we didn't have bloodwork drawn. And possibly going to hematology/oncology and immunology.

DH and I are really getting to the point where we're considering moving back in with my parents. We're still trying to pay off our debt on top of taking care of 2 kids. And with DS2 having issues now and DS1's getting worse, I don't know how we can afford all the copays and coinsurances, pay off our debt and stay sane. On top of that I'm take lugging 2 kids (one of which screams all day and the other who is sick all the time) to and from appointments and to and from therapy. We have no friends or family close to us here. If we need a baby sitter I have to drive the kids 45 miles and drop them off, then pick them up. And even then they're usually not able to watch them when we need them to.

Thank goodness my mom has been staying with us this whole time. She even extended her stay by 2 days so she can babysit DS1 while DS2 has his surgery follow up and VCUG and ultrasound. But I have no idea how we're going to do this after she leaves.

realisticdreams · July 2012

ToastieSimons:

DS1 is neutropenic. Now we have to find out if it's intermittent or chronic. We're still waiting on the rest of his bloodwork for IgG and IgA levels. Also, we took him to the ER last year during one of his fever flares. They took blood through a finger prick because after poking him 4 times they couldn't get a vein. THEY NEVER RAN A CBC! The only records they have are a urinalysis. I know for a fact they drew blood because it was the worst attempt ever followed by them squeezing his finger for 10 minutes to fill a vial.

Ms IgG/IgA/IgM were all tested early on and have been repeat tested every 6 weeks or so. The first two were practilly non-existant, one was completely non-existant. Her titers after initial shots were negative as well. I remember initially with regular CBC's her neutrophils were super low as well, and sometimes atypical. The atypical is why they sent us to hem/ong. They basically just 'ruled' out a pre-leukemic state via more labwork and also checked for a neuroblastoma because they felt a mass in her belly. Her neutrophils would go up/down depending on how 'sick' she was, etc.

So now I have to attempt to possibly get records from another hospital when he was sick one other time. But of course it's 400 miles away and we still have to unearth our printer after moving.

So now we have to talk to the rheumatologist about starting cymetidine and PFAPA and the fact that we didn't have bloodwork drawn. And possibly going to hematology/oncology and immunology.

Our first course of treatment is a dose of orapred at onset of fever and in many cases within 24 hours the fever will vanish. How long does your LO's fever last? I know cimetidine is another option but do you take it at onset or daily?

DH and I are really getting to the point where we're considering moving back in with my parents. We're still trying to pay off our debt on top of taking care of 2 kids. And with DS2 having issues now and DS1's getting worse, I don't know how we can afford all the copays and coinsurances, pay off our debt and stay sane. On top of that I'm take lugging 2 kids (one of which screams all day and the other who is sick all the time) to and from appointments and to and from therapy. We have no friends or family close to us here. If we need a baby sitter I have to drive the kids 45 miles and drop them off, then pick them up. And even then they're usually not able to watch them when we need them to.

I don't think this is a bad idea, and I dont' see how anyone could possibly fault you for it. I am so lucky to have my gramma close but she is limited on what she can help with. I don't have parents and H's parents are out of state (and were not supportive in the beginning of this when we did live near them, with P's diagnosis, etc). Have you looked into a medicaid waiver or SSI for your dd1?

Thank goodness my mom has been staying with us this whole time. She even extended her stay by 2 days so she can babysit DS1 while DS2 has his surgery follow up and VCUG and ultrasound. But I have no idea how we're going to do this after she leaves.

How did the vcug/ultrasound go?

ToastieSimons · July 2012

realisticdreams:
ToastieSimons:

DS1 is neutropenic. Now we have to find out if it's intermittent or chronic. We're still waiting on the rest of his bloodwork for IgG and IgA levels. Also, we took him to the ER last year during one of his fever flares. They took blood through a finger prick because after poking him 4 times they couldn't get a vein. THEY NEVER RAN A CBC! The only records they have are a urinalysis. I know for a fact they drew blood because it was the worst attempt ever followed by them squeezing his finger for 10 minutes to fill a vial.

Ms IgG/IgA/IgM were all tested early on and have been repeat tested every 6 weeks or so. The first two were practilly non-existant, one was completely non-existant. Her titers after initial shots were negative as well. I remember initially with regular CBC's her neutrophils were super low as well, and sometimes atypical. The atypical is why they sent us to hem/ong. They basically just 'ruled' out a pre-leukemic state via more labwork and also checked for a neuroblastoma because they felt a mass in her belly. Her neutrophils would go up/down depending on how 'sick' she was, etc.

So now I have to attempt to possibly get records from another hospital when he was sick one other time. But of course it's 400 miles away and we still have to unearth our printer after moving.

So now we have to talk to the rheumatologist about starting cymetidine and PFAPA and the fact that we didn't have bloodwork drawn. And possibly going to hematology/oncology and immunology.

Our first course of treatment is a dose of orapred at onset of fever and in many cases within 24 hours the fever will vanish. How long does your LO's fever last? I know cimetidine is another option but do you take it at onset or daily?

DH and I are really getting to the point where we're considering moving back in with my parents. We're still trying to pay off our debt on top of taking care of 2 kids. And with DS2 having issues now and DS1's getting worse, I don't know how we can afford all the copays and coinsurances, pay off our debt and stay sane. On top of that I'm take lugging 2 kids (one of which screams all day and the other who is sick all the time) to and from appointments and to and from therapy. We have no friends or family close to us here. If we need a baby sitter I have to drive the kids 45 miles and drop them off, then pick them up. And even then they're usually not able to watch them when we need them to.

I don't think this is a bad idea, and I dont' see how anyone could possibly fault you for it. I am so lucky to have my gramma close but she is limited on what she can help with. I don't have parents and H's parents are out of state (and were not supportive in the beginning of this when we did live near them, with P's diagnosis, etc). Have you looked into a medicaid waiver or SSI for your dd1?

Thank goodness my mom has been staying with us this whole time. She even extended her stay by 2 days so she can babysit DS1 while DS2 has his surgery follow up and VCUG and ultrasound. But I have no idea how we're going to do this after she leaves.

How did the vcug/ultrasound go?

right now he's sick along with the fevers. he has a runny nose and he's vomiting intermittently. so they're presuming that his body does a fine job of fighting the virus initially but it loses steam as soon as he starts to seem better and the virus comes right back.

the doctor also ran bloodwork to check his pneumococcal antibodies to make sure that his body reacted to the vaccine because that could be another concern.

the cimetidine is a daily medication 3x/day but it's non steroidal so it doesn't have the same concerns as a steroid medication.

DS2's vcug is on thursday so we don't have anything to report back yet.

Jcrab · July 2012

As far as the hospital not having the CBC results, I'm pretty certain it would have clotted and thus been useless given the collection technique you mentioned.

Moving in with your parents is definitely a tough idea. Assuming they are willing it sounds like it would be great to have more support, less overhead financially and thus possibly a little less stress. Could your DH still commute to his same job? Would your son's need to start over with an all new medical team? I wish you peace in your decision. Good luck!

annibes · July 2012

Jcrab:
As far as the hospital not having the CBC results, I'm pretty certain it would have clotted and thus been useless given the collection technique you mentioned.

this. But the lab should have a record of that, even, if the CBC was ordered. In place of the results it might say something like "specimen clotted" or something.

Good luck on your decision to move. I would lean toward the same thing, I think. When you have so much going on, it's a great thing to be able to alleviate some of the pressure, even of only for the short term.

realisticdreams · July 2012

We have had hospitals (mainly ER) Not order our PFAPA lab protocol even with order AND letter from immunology. I don't understand ER doctor's sometimes.

grbnik · July 2012

Good luck with everything. I think that moving back with your parents may be a very wise move, as long as you all get along.

We do what we have to do. Hugs to you!

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