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Somebody calm me down


Suzan
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OMG, I'm so upset. I had an appt with the immunologist on 11/23 that I have been desperately waiting for. Our psych appt was postponed until 11/30 because the therapist had the flu. I called the immunologist office to see if this was OK that the psych appt occured after 11/23 or should I find another place for the evaluation. The nurse called today to say that the immunologist has indicated we should wait and not come until our end of January 2010 appt.

 

The last time I spoke on the phone with the immunologist, she told me January was too far away, that I should come in on 11/23 after she finishes her PANDAS research so we can talk about what she is going to do, that she was talking with the "experts". Then I get this call with the nurse telling me that the notes say there is no indication that there is anything wrong immunologically. How can they keep telling me that? And we have not met since all her tests were completed. Last time I saw her she was talking IVIG and now I can't even get in to see her.

 

So I told the nurse all this, that I needed her to go back to the doc to tell her that I didn't understand why she was changing her plan. The nurse refused! She just kept saying the doc's notes were perfectly clear, that I also asked the nurse to tell the doc that I was going to bump her zith back up to every day. That things here were getting worse not better, to be sure the doc knew that. This nurse was not going to give my message. I finally said "Well I guess this conversation is over" and we both hung up. we would do allergy shots and the new allergy medication and that there is nothing wrong with her immunity. I want to scream! I left another message asking nicely to have the doctor call me but it's Friday and I'm sure I won't hear anything until next week

 

Plus, I have to pick an insurance at work that has no out of network benefits. I think I'm going ot be sick.

 

Susan

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Sorry Suzan. I can not tell you how long I played these games with doctors before we went to Dr. K. I am very grateful for him. I was tired of trying to convince doctors of things. Finally Dr. K told me it was PANDAS, not me telling them. It was definately worth the flight to see him and I wish I did not waste that first year running around to other doctors!

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I wish I knew what to say to help you calm down...but I so understand your being angry and upset. Why did the immuno want to wait for the psych eval anyway? My experience is that's where they send you when they feel they have nothing to offer. Did he want a baseline of OCD scores before treatment?

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OMG, I'm so upset. I had an appt with the immunologist on 11/23 that I have been desperately waiting for. Our psych appt was postponed until 11/30 because the therapist had the flu. I called the immunologist office to see if this was OK that the psych appt occured after 11/23 or should I find another place for the evaluation. The nurse called today to say that the immunologist has indicated we should wait and not come until our end of January 2010 appt.

 

The last time I spoke on the phone with the immunologist, she told me January was too far away, that I should come in on 11/23 after she finishes her PANDAS research so we can talk about what she is going to do, that she was talking with the "experts". Then I get this call with the nurse telling me that the notes say there is no indication that there is anything wrong immunologically. How can they keep telling me that? And we have not met since all her tests were completed. Last time I saw her she was talking IVIG and now I can't even get in to see her.

 

So I told the nurse all this, that I needed her to go back to the doc to tell her that I didn't understand why she was changing her plan. The nurse refused! She just kept saying the doc's notes were perfectly clear, that I also asked the nurse to tell the doc that I was going to bump her zith back up to every day. That things here were getting worse not better, to be sure the doc knew that. This nurse was not going to give my message. I finally said "Well I guess this conversation is over" and we both hung up. we would do allergy shots and the new allergy medication and that there is nothing wrong with her immunity. I want to scream! I left another message asking nicely to have the doctor call me but it's Friday and I'm sure I won't hear anything until next week

 

Plus, I have to pick an insurance at work that has no out of network benefits. I think I'm going ot be sick.

 

Susan

 

Hi Susan, I am so sorry to hear about your experience today with the nurse. I know it is so disappointing to wait for an appointment that you think will offer help and it to be changed. Could you get an e-mail address for the DR?

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I wish I knew what to say to help you calm down...but I so understand your being angry and upset. Why did the immuno want to wait for the psych eval anyway? My experience is that's where they send you when they feel they have nothing to offer. Did he want a baseline of OCD scores before treatment?

 

She told me she wanted a "full picture" and that maybe some OCD treatment would help us make it through until we had our treatment plan in place. I'm under the impression that she is onboard with PANDAS, wanted to make sure there was no underlying issue. But then things like this happen and completely throw me off. I'm scared that I'm going to select this insurance and then have no options when I have to fly to Dr. K or Dr. Latimer. I guess I'll have to fully re-think the insurance thing. Our other options are not great for those who have a lot of medical bills.

 

Susan

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I am SO sorry you are going through this!! I've had a frustrating day and am feeling upset as well, but I have to say, I haven't spoken to Nurse Ratchett today (but it sounds like you did! :ph34r: ). Try to hang in there - you will solve this. Is it a big office? Sometimes when I get someone unhelpful or difficult on the phone, I just say thanks and hang up, then call right back hoping I'll get someone else. If you get someone else, you could say there was a mistake and try to get back on her schedule, or at least maybe they will pass your message along. I don't know how you feel about this, but I might be tempted to tell them that I did get a psych appointment after all. You could then try to get one before the immuno appointment, or just tell her it fell through when you get there.

 

After I read through your post, I did wonder if she never got around to calling the "experts" and is just trying to stall. Who knows what's behind it though.

 

Not sure how helpful any of this is, but I do hope your day gets better!

 

Jennifer

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Somebody calm me down

 

 

oKAY then.... meet us at the tiki bar... ;)

 

 

susan, was the immuno suggesting IVIG based on the deficiency? or was this to kind of use as an adjunct to the PANDAS dx? does she believe in PANDAS? why do you think she acted like she "knew" your child had deficiency? and now the blood tests showed none? did she say why she pushed the appt? and she wouldn't give your message?? :ph34r:

 

my feeling is (and I'm just venturing a guess) that she "spoke to her experts", who in turn, cooled her to the idea. you have to get this doc on the phone, unless you think you can wait for the appt., but I'd complain, maybe mention your insurance problem.

 

Faith

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Good morning and thanks you guys! I really appreciate being able to come here and vent and look for support. I feel wasted today, I think the stress from being so angry and scared last night probably wiped my already failing adrenals. I feel like I won't be able to make it through, like it's taking all my energy to just walk around, much less to be a good mom. Today we are running errands and then going ice skating. I must be insane. :blink:

 

I have drafted a letter to the immunologist and I also have a call out to my Uncle who is a family doc to ask him his oppinion of my conversation with the nurse to get his thoughts on how he would react if one of his nurses had a conversation like that with a patient. I feel like I want to get a sense of how the immunologist will react to my complaint of the conversation. I'm keeping it as neutral as I can and just stating the facts and letting her know about my insurance dilema. But it's hard to talk about that without saying "are you going to do what I want or not?" She's not that kind of doc and it's a fast way to probably make her resistant. It helped me anyway to write it down.

 

Oh yeah, I also am going to get an appt with our Dan! doc in the mean time to see if I can get dd's zith prescription renewed to hopefully stash enough antibiotics to get us through and I'm going to up her to a daily dose instead of every other day. I want to do a trial of 500 mg daily for a week or two to see if this helps. I don't know if our Dan! will agree. Does anyone know if for an 8 yr old, 68 lb girl, would this be OK to try?

 

Is it unreasonable to ask the doc to clue me in on her thoughts now if we do have to wait until January to see her so I can feel assured she is going to work with us?

 

Susan

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Susan,

 

I like the letter idea. The nurse can't prevent the doctor from seeing that! If it would help, you could probably post it here and ask for people's comments. Talking to your uncle also sounds like an excellent idea. 500 mg for 10 days is a full dose, but not overdoing it (as far as I know) for a 68 lb girl. My son is 58 lbs and did 10 days of 500 mgs and is now on 375mg daily. In addition, we are working with a DAN doc to make sure any hidden strep colonies in his gut are eradicated. You can look at my posts on biofilm (a few days ago) for more on this. In one of the threads someone posted a link to a lecture by Dr. Usman on biofilms that is very informative (if you're interested).

 

I don't think it's unreasonable at all to ask her to give you a quick call and then try to determine where she's headed, what her "experts" told her, who they were, etc. If she won't even call you, I'd find a new doctor.

 

Good luck! It will all work out.

 

 

Good morning and thanks you guys! I really appreciate being able to come here and vent and look for support. I feel wasted today, I think the stress from being so angry and scared last night probably wiped my already failing adrenals. I feel like I won't be able to make it through, like it's taking all my energy to just walk around, much less to be a good mom. Today we are running errands and then going ice skating. I must be insane. :blink:

 

I have drafted a letter to the immunologist and I also have a call out to my Uncle who is a family doc to ask him his oppinion of my conversation with the nurse to get his thoughts on how he would react if one of his nurses had a conversation like that with a patient. I feel like I want to get a sense of how the immunologist will react to my complaint of the conversation. I'm keeping it as neutral as I can and just stating the facts and letting her know about my insurance dilema. But it's hard to talk about that without saying "are you going to do what I want or not?" She's not that kind of doc and it's a fast way to probably make her resistant. It helped me anyway to write it down.

 

Oh yeah, I also am going to get an appt with our Dan! doc in the mean time to see if I can get dd's zith prescription renewed to hopefully stash enough antibiotics to get us through and I'm going to up her to a daily dose instead of every other day. I want to do a trial of 500 mg daily for a week or two to see if this helps. I don't know if our Dan! will agree. Does anyone know if for an 8 yr old, 68 lb girl, would this be OK to try?

 

Is it unreasonable to ask the doc to clue me in on her thoughts now if we do have to wait until January to see her so I can feel assured she is going to work with us?

 

Susan

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Hey Suz- I am so sorry. I know you were really hoping for an underlying immunilogical issue for a lot of reasons - as are we. This remains one of my concerns, that the test results may show nothing more. I agree with the "two roads" comment. It's so hard to do and I know how much you have on your plate with all this. But I am definitely less concerned about the results of the Immuno testing now that we are on board with Dr. Latimer. I am just not sure that she'll be confident in treating Meg without that. We are also looking for a ped that will consult with Dr. L - I'll post when we find one.

 

In the meantime, I'd say the letter seems reasonable - I do know that she was going to be out of the office during much of Nov & Dec, so that may be part of the issue - still no excuse for that nurse. I'd also immediately ask for a copy of the records including those test results. You may review them & also say "ok, nothing immuno" - in which case, another doc will be more appropriate - Dr. K or Dr. L. I also think that continuing the psych road at the same time, is really wise. You can always stop if you want - and Dr. Dan is wonderful, so I think you'll feel good there.

 

Hope you are finding support for yourself as well.

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Susan, where do you live? Do you currently have out of network benefits, just not next year?

 

I live in Charlotte. NC and yes I currently do have out of network benefits until 12/31. After that, I can choose a plan that has out of network benefits, but the only plans available are plans that have % payments. There is no co-pay available for any office visits or perscriptions so I wouls pay a % for anything which makes it impossible to predict the costs. If I knew I had to select that plan for a reason I would but otherwise, since we are big insurance users, I have to go with the in-network, copay plan.

 

Susan

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If you went to who I think you went to... Dr O? Then, yeah, even her Concord office back in the day was horrible. I liked her (herself) a lot, but here we are, 4 yrs later and they still won't give me Pixie's records!

 

Boo! So sorry you are dealing with this. Too bad you can't speak directly to her... wonder what the deal is!?

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If you went to who I think you went to... Dr O? Then, yeah, even her Concord office back in the day was horrible. I liked her (herself) a lot, but here we are, 4 yrs later and they still won't give me Pixie's records!

 

Boo! So sorry you are dealing with this. Too bad you can't speak directly to her... wonder what the deal is!?

 

Oh my gosh! They won't give you your daughter's records??!! I don't think that's legal!

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