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  #1  
June 10th, 2011, 06:47 AM
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I am really sick of doctors just brushing things off. I am going to copy this from my blog (6/7) and delete the irrelevant stuff....

The schedule interruptions have completely thrown his eating off. He is starting to get back on track a little today but has been down to about 8-900 calories per day for almost 2 weeks. He seems to have stayed around the same weight still which is good. I called his GI today to try and reschedule his appointment since we will be out of town with my parents when he was supposed to go back but they are now scheduling out into August! o.O I just left a message for the nutritionist in her office to see if she wanted us to see her before we leave of if she wants to work us in somewhere. This is getting really old though. Either Danny gets in quickly to a doctor that refuses to help him or he has to wait for a long time to see a doctor that might do something but we haven't seen often enough for me to know if the wait is even going to be worth it or not. I also called his hematologist who Cincinnati requested follow him monthly to monitor his blood counts and they now don't want to see him again "unless Cincinnati says otherwise" when we go on the 21st. I am so aggravated. They completely ignore what his other doctors acknowledge as a problem and won't even monitor his blood counts.

copy over... We have only been monitoring his blood counts monthly since Feb...not a long time or enough to catch cycles by any means. The bad ones we caught before were flukes. ANC 1.0, 1.0, 1.3, 1.3, 1.6, etc. They aren't horribly low but they weren't when he was sick. He was perfectly healthy when those dropped. I had called to ask Hem/Onc if they would go ahead and monitor the CBC's and they said no. He has been bruising like crazy, had a papercut sized cut on his finger that wouldn't stop bleeding for 10 minutes and they still refused to do a CBC saying that his history didn't show any need for them to follow him. Forget that the pediatrician that said he should have seen hem/onc months ago used to work in the hem/onc office... I am so sick of all of this. I just want them to get their act together and at least continue to do the monthly CBCs. I called Cinci and the person that I normally talk to was out that day so I got the person that had just returned from maternity leave...like that day. I have never talked to her before... She said that if our local hem/onc didn't want to follow him than Dr. Harris probably wouldn't want to do anything different...I am guessing that means at least until we see him but that is not what she said. I am incredibly ticked off right now. On top of refusing to do blood counts Danny now has a sore throat (since yesterday morning) that is red, swollen glands (noticed today), a stomach ache (the past 1-2 weeks), and has had super smelly diarrhea (the last two days). I need to leave for the doctor now but I am sure there will be a part two to this one when we get back.
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  #2  
June 10th, 2011, 01:38 PM
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" This is getting really old though. Either Danny gets in quickly to a doctor that refuses to help him or he has to wait for a long time to see a doctor that might do something but we haven't seen often enough for me to know if the wait is even going to be worth it or not."

I know that frustration all too well! I'm sorry you're dealing with it too.

That is SO stupid that they won't do his CBC if they're doing monthly blood work anyway. Can you start from the ground up on that one? Like talk to his pedi to have it put in instead of asking whoever is already doing it? I'd raise hell about their reluctance to follow the ANC since you already have been doing it and nothing has changed to stop it. I'd call the patient rep in the hospital, but that's just me.

I'm sorry you're going through this. As if it wasn't hard enough to get our kid help, summer is SO much worse.
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  #3  
June 10th, 2011, 01:54 PM
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The ped ordered one when we went in for the sick visit. Danny's platelet counts have always been 3-400+ but today they were 246. Normal is from 150-500 but he also hasn't been bruising for 3-4 days so it has likely gone up already. His ANC is 3.0 so that is fine, his WBC is 6.86 which points more to a virus which is good, his hemoglobin was 38.2 which is borderline low but still fine. What royally ticks me off is that if they had drawn the CBC early this week when I asked them to they would have seen that it was low. Now it is Danny low but normal so probably on the uphill climb. I am so sick of KNOWING what is going on with my child but not being able to prove it because the stupid doctors won't listen!!!! The doctors aren't under the hospital's authority for outpatient visits...only for inpatient stuff, observations, and outpatient surgeries. I am going to try to call his allergist Monday to see if they will continue the blood counts and write me a script for one that I can use if something like this happens between the standing order's schedule... I am just so sick of having nothing to show for what I know is going on. It should NOT take a paper-cut 10 minutes to stop bleeding and my son should not get a bruise the size of a quarter from someone bumping into his back with their elbow. It wasn't even hard enough for him to be pushed at all! He had bruising around his knees too which is a clear sign that a CBC should have been done, but did anyone listen to me? NO! GRRRRRR!!!!
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  #4  
June 10th, 2011, 02:09 PM
C&K'sMama's Avatar Platinum Supermommy
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I understand that! It shouldn't take a parent fighting that hard to be heard but even though they're not under anyone's authority, ruffling feathers (in my experience) makes docs more prone to doing things, even if just to get you to hush. They may not get in trouble, but it makes higher ups see that there is an unhappy mama and that often gets results without disciplinary action even.
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  #5  
June 10th, 2011, 02:55 PM
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I mixed it up...RBC was 32.7 not 38.2...
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  #6  
June 10th, 2011, 03:05 PM
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I am sooooo going to try this one on Monday. I am sick of docs not doing their jobs... I just sent this email to my contact in Cincinnati because I am so frustrated. If this is going to affect what they can do diagnosis wise I am going to be royally ticked off...

Mrs. Cole,
I am really frustrated and am not really sure what to do or where to turn. I don't feel like Danny's hematologist here has really looked at the whole situation. At this point no one is monitoring his blood counts on a regular basis. He was having monthly blood draws to try and track blood counts and start setting a consistent record. We have only been intentionally following them since January or February so I am having a hard time understanding why everyone has ruled out any reason to follow them any longer. This past week has been extremely frustrating because from around the 1st of June until Monday or Tuesday Danny was bruising constantly, had bruises around his knees even in spots that he couldn't have hit hard enough to bruise, and got a paper cut type cut on his finger on Monday that it took me 10 minutes to get to stop bleeding. We were on vacation until Sunday so I couldn't get anything done while we were gone. I called the local hem/onc clinic early this week to tell them what was going on and ask if they would order a CBC. Our doctor has left the practice after our first visit and the doctor that took over for her told the nurse that our old doctor said we didn't need to come back in so he didn't see a reason that a CBC was needed. Danny went in to the pediatrician this morning for a sick visit. The ped thinks he has adenitis and a mild stomach bug and ordered a CBC since we were in but by now everything is pretty much in normal ranges. His WBC was high-6.86 but that just further indicates the viruses. His hematocrit is borderline low but okay at 32.7. His ANC is 3.0 and his platelets are now 248. He has not bruised at all since Tuesday and the small scrape he had yesterday stopped bleeding after less than a minute. I am really frustrated that even when I KNOW that something is off I can't get Danny's doctors to order the test needed to record it or at least check it. I understand that it is difficult to pin down an odd diagnosis without recorded symptoms and this is just one more negative point on Danny's side of finding an answer. I feel like the doctors that should be following various things are dismissing them rather than monitoring them. The hem/onc doc that we saw initially all but ruled out SDS or SDS-like illness after looking over the limited records that she had because he hasn't had any systemic infections and she couldn't find a pattern in his neutropenia episodes. She found at least two more CBC's in hospital records that had ANC's of 1.0 and 1.3 but didn't take into account that we have only been actively monitoring CBC's since Jan or Feb. Should I push harder for CBC's next time or is keeping a record of symptoms going to be okay?

I called earlier this week and spoke with the lady that just got back from maternity leave. She said that she would check with you to figure out which records you haven't received yet. Do I need to call the offices if there are any that have not been sent? I want to make sure that everything is in before we get up there.

I know that this was really scatter-brained but this week has been extremely aggravating for me with the local doctors and since you guys are the ones that are being trusted to diagnose or rule out SDS/SDS-like illness I would rather ask you what will suffice for history. Thank you again for everything.

End email...

I am just so sick of this... The docs need to do their jobs rather than dismissing a currently normal looking child as normal. Just because he has normal blood counts when they actually check them doesn't mean that they are normal all the time. He gets one draw a month usually...since Jan or Feb...what about the other 30 or so days??? Just because it doesn't show up on a test doesn't mean it doesn't happen! I really really really am getting crazy sick of this... I am considering making Cinci his main GI and just driving there for appointments because they got us in for a new patient appointment faster than our local GI could get us in for a scheduled visit! UGH!!!

I just don't even know where to dump my frustrations anymore. It seems like just when I think things are going to get better they just keep getting worse...
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  #7  
June 10th, 2011, 04:20 PM
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Are his platelets low? What is his hemoglobin?
I've never known anc to effect bruising/bleeding.
His anc isn't extremely low, thankfully.
I'd wait to see what Cinci says, ask for a script for monthly cbcs from them, and see what they want for his care. I've lost faith in his old doctors.
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  #8  
June 10th, 2011, 06:20 PM
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"I just don't even know where to dump my frustrations anymore. It seems like just when I think things are going to get better they just keep getting worse..."


I'm sorry I feel like this a lot. They don't listen and by the time they take action, the things that caused my concerns have ebbed and I have no leg to stand on.

I love your email There is nothing wrong with letting someone know that you aren't being listened to.
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  #9  
June 10th, 2011, 06:57 PM
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His platelets were low from about the 1st of June until probably Monday or Tuesday...to the point that he had joint bleeding where just the impact of walking was causing his knees to bruise. I may have mixed up hematocrit and hemoglobin terms... I will try and call tomorrow and see if they can tell me the hemoglobin value...I think I asked about the hematocrit which is given in a % and normal is between 34 and 40 so the 32.7 would be borderline low. The only major issues he has had have been with his ANC and his platelets. I think the platelet thing happened once before for about 3 months. I didn't know about this then or I would have known to ask about getting a CBC done. He had at least a dozen bruises on every extremity (including his head...front, back and sides of all extremeties) for about 3 months. He was about 18 months old and his docs chalked it up to falling. He didn't fall that much and when he did someone caught him except on the rare occasion that he would actually hit something and get a 3 inch diameter bruise. They always said it must have been the way he hit or something stupid. I am hoping that Cinci is better than these guys. The only one I like now is his allergy/asthma doc who is simply a Godsend. He has been the biggest blessing through all of this. He has ordered tests that had nothing to do with allergy/asthma because he knew they needed done and his other docs wouldn't do it. He even did the referral to Cinci when the GI refused and said if Danny got so lethargic that he wouldn't move from not eating that he would call in a direct admission to the hospital for fluids and make a new GI referral because the hospital that the old GI had privileges at was not the same one. (His old GI said that even if Danny was just laying on the couch...pretty much unresponsive from not eating during a feeding aversion period a few months back that as long as he was on the charts he wouldn't do anything about it. It was a point blank question and he said he wouldn't do anything as long as Danny was on the charts.) Danny's allergy/asthma doc is simply amazing. He is the only doctor I would dearly miss and will likely drive great distances to see him if we move away...
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  #10  
June 11th, 2011, 06:54 AM
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official totals...

WBC-6.86
ANC-3.0
Platelets-248
Hematocrit-32.7
Hemoglobin-11.6

So on hemoglobin he is pretty much normal but the limits are 11-16 so he is kinda close. I don't know if there is any significance in that though...
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  #11  
June 11th, 2011, 07:55 AM
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I would think even with "normal" results they'd be concerned about the bruising
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  #12  
June 11th, 2011, 08:26 AM
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The bruising was fron 6/1 until Tuesday...he has only had one bruise since Tuesday and that one was earned. So that explains the ped's lack of concern and the "normal" lab results... It royally ticks me off that hem/onc didn't listen or care enough to order a CBC... It isn't a hard test to justify or draw and it isn't like I am asking them to fly me to the moon... It is just so dumb that they wouldn't even say something like come in and let us look at him then we will decide...
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  #13  
June 13th, 2011, 04:03 PM
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Oh my gosh! I'm overwhelmed just reading all of this! So sorry you have to deal with it.

Quote:
Originally Posted by Ditzzy View Post
I'd wait to see what Cinci says, ask for a script for monthly cbcs from them, and see what they want for his care. I've lost faith in his old doctors.
I agree with this for sure. I also like your e-mail. I hope it helps you get what you need. Just keep fighting hon. And get your complaints in writing as much as possible. (seems like you're already doig this) Sorry I don't have more advice. Good luck.
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