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Pediatrician just dumped my 16 yo DS


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I am completely blown away right now. I feel like I am going full circle, and ending up almost at square one!

 

This happened, because I dared to ask him to order some followup blood work, so I wouldn't have to go from doctor to doctor to get everything. DS has recently had high titers with ASO, AntiDNAse B, MycoP, Lyme, Erlichiosis, Bartonella, and Viral IgG. He's currently getting weekly bicillin injections, but we are working on getting IV abx through his DAN doctor if it is still needed. This pediatrician is physically giving him the bicillin injections, which were ordered by his LLMD.

 

His excuse? My DS is too complicated, and he's not comfortable interpreting and treating.

 

So, we should take a 16 yo to an internest?????

 

 

(BTW...I responded with a cc to my DH. I told him that I felt like he was dumping my DS, that there is a white paper coming out in the extremely near future, that he has been treating my DS for several years, that my DS is still a child, and that just because it's complicated is no reason to try to pawn this off onto an "adult" doctor for a pediatric illness. I also told him AGAIN that we have other doctors who interpret and treat, and he knows that quite well, but that I needed one doctor to coordinate, and do things like order the tests and treat acute illness.) I can take DS to the DAN doc, but he's 45 minutes away each way, plus the wait time, and the doc has early hours. So, there goes the rest of my work schedule!

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Egads! So sorry to hear this. Did he have a particular adult doctor in mind - or was he just dumping him.... and did he offer to continue seeing him until you get someone at least?

 

It's not like you can just pick up with someone new with all the history you have with this doc. I am truly sorry.

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Oh geez! So sorry! How do these doctors sleep at night?!? :angry:

 

 

That's what I want to know. The worst part, is that he has several kids (that I know of...how many that I don't know of) on his caseload with PANDAS. Everything he knows about PANDAS, he learned from me, and he very well knows the specialists we use (Dr. L, Dr. B, and the DAN doc.) He's spoken with them all, and has even corresponded with Dr. C. We've had our moments in the past (that's when I found the DAN doc, because DS had super high strep titers, enlarged spleen, elevated liver enzymes, and doc refused to treat, because he had no clue what to do.)

 

Basically, I'm not going to give him the option to dump us this way. I'll keep going there to get DS's bicillin injections (just too far to go to the DAN doc once a week.) If he tries to refuse, I'll tell him that he's abandoned my DS. This is totally unbelievable. All he had to do was tell me he wasn't comfortable ordering all the blood work. But, it is kind of scary that he's not willing to order blood work! Let's just let those kids keep suffering.

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Tpotter

Do you think he could be getting push-back from the insurance?

We used to see a pediatrician, right around the corner from the DAN you mention. Before our first appt with Dr. B 14 months ago, I went to her with the bloodwork he likes to have done before your initial appt. It was quite a bit as I'm sure you are aware. She was willing to order it (that one time) but told me it was risky for her because she didn't even know what some of the tests were....so how would she be able to justify them if questioned by insurance which was more probable due to the large number of labs and cost associated. She's the one on Cowpath. She had personal health issues and we left because her partner was a complete witch. Now we see the DAN/family doc you mention, but we are in North Wales, so it's only 15-20 minutes tops.

I'm just mentioning it based on that experience. Lord knows this could all get much worse with the changes in health care coming down the pike.

 

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Tpotter,

Sorry to hear of your troubles added on to your real issues with your child. Doctors are definately becoming scared to order tests and scared they won't be reimbursed for them. I asked my own doc to test. Me for mycoplasma because my son and mother kept getting it and she didn't refuse but did want me to sign something that I would pay of it want covered. I never did sign it but why would they think ins wouldn't cover blood work especially of a person exhibits symptoms? Socialized medicine !

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So sorry this is happening to you and your son. Just FYI, in the US, in order for a doctor to "legally dump" a patient, they have to write what is called a 30 day letter stating that 30 days from the date of the letter the doctor will no longer treat the patient. They HAVE to put it in writing and give you 30 days to seek treatment elsewhere, or else it is abandonment of a patient. So until this doctor does this he MUST treat your son. Hang in there, and hugs to you.

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Tpotter, I feel for you and your son. I know that all of these doctors are put in a bad place because of insurance companies and what they will reimburse. Our pediatrician is still owed almost a thousand dollars by us because the insurance company would not reimburse him for his office giving ds the Bicillin injections. We are paying out of our own pocket (slowly). Our ped. doesn't understand all of the science either, but he has given us a measure of trust because we go to the same church and I taught their son at parochial school. The Lord works in mysterious ways. Also, the doc has Charcot-Marie Tooth Syndrome as does his son. I don't know if that makes him more understanding or able to look outside the box a little bit, or what. So glad he will do that.

 

Please try to have a conversation with the pediatrician, and let them know how much you count on them in this time of need. If all else fails, ask for a recommendation of another doc.

 

This is horrible on top of everything else you have been through, but I know you will overcome this, too.

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T potter I thought your son was doing well and in remission. :(

 

 

Definitely not in remission. DS19 is doing much better, and I'm holding my breath (although he does keep having some fairly short-lived flairups.) DS-16 is still having a fair number of problems (resistent strep, lyme, and has high IgG to about 6 viruses, and mycoP.) So, he's chronically sick, but nowhere near as bad as prior to PEX and IVIG.

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tpotter, so sorry to hear this and so " unethical".

 

I am sick to my stomach when I hear stuff like this, you go into medicine to help. Do they not remember their Hippocratic Oath?

 

 

I mentioned about the Hippocratic Oath in my response email this morning. I didn't think about the whole insurance thing. It really does make a lot of sense, but still so incredibly ridiculous. Especially since he is in the position he chose to be in, because he would help me in the first place.

 

He did write me saying I should find another doctor, because he can't keep treating my son, but never gave me the 30 day notice. My fingers are crossed, though that my personal doctor will take him on (I spoke with their office today, and also sent her a fax with details on what I need.) I guess I will need to address the issue of paying for the injections privately if necessary. This is so utterly ridiculous. They'll pay for tons of oral abx, even when it's clearly not working, but then not pay for the next level...argh!

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T potter I thought your son was doing well and in remission. :(

 

 

Definitely not in remission. DS19 is doing much better, and I'm holding my breath (although he does keep having some fairly short-lived flairups.) DS-16 is still having a fair number of problems (resistent strep, lyme, and has high IgG to about 6 viruses, and mycoP.) So, he's chronically sick, but nowhere near as bad as prior to PEX and IVIG.

 

 

When you say "much better" what do you mean? Does he still have OCD and tics? Prayers that he gets better soon.

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T potter I thought your son was doing well and in remission. :(

 

 

Definitely not in remission. DS19 is doing much better, and I'm holding my breath (although he does keep having some fairly short-lived flairups.) DS-16 is still having a fair number of problems (resistent strep, lyme, and has high IgG to about 6 viruses, and mycoP.) So, he's chronically sick, but nowhere near as bad as prior to PEX and IVIG.

 

 

When you say "much better" what do you mean? Does he still have OCD and tics? Prayers that he gets better soon.

 

 

Thank you for the prayers. He still has some OCD...nothing even close to as bad as it was. He still gets some rages, but he feels them coming, and runs to his room. Occasional tics, but doesn't take his breath away. BUT, he has a lot of chest pain, just started having palpitations (2 cardiologists think it's related to infection), enlarged spleen, fluctuating tone, and fluctuating memory and executive function. He definitely has strep (ASO titers keep jumping way up), was exposed to mycoP by me (and I'm still fighting it after 1 1/2 years), has the bartonella rash, and tests positive for erlichiosis. We're desperately fighting infection, and it's just getting terribly frustrating. 2 cardiologists, 1 pediatric neurologist, 1 immunologist and 1 LLMD all say he needs to treat the infection. Well, in order to treat the infection, we have to test for it, and treat it properly, and if oral abx aren't work, then we go to the next step.

 

But, our pediatrician dumed him, because I asked him to do followup blood work, and give him shots of bicillin, so I don't have to travel 3 hours to get it....that just makes me even madder.

 

I really have to question the whole hippocratic oath, because it seems like too many doctors just don't seem to "get it."!

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