The doctor appointment

[susiestar]

We went to see the third neurologist yesterday. I intended to post this last night but I kept getting distracted - partially by Jess and husband because our new phones arrived yesterday. (The new phones are cool!)

We went to the doctor and got there, I thought, Late. Turns out we were way early. Thank Heavens, because they changed all the road signs and we spent twenty minutes driving around in circles.

We get the infernal paperwork filled out and the doctor comes into the room. He starts off telling us that he has read all the info on her and there is no movement disorder. It is anxiety. Period. He then says that she does not have the Absence Epilepsy because it was not seen on the 20 minute EEG. I ask what he is using to rule out a movement disorder and he very arrogantly says that he has seen all the movement disorders and this just isn't one. I was getting MAD.

So we go over what the docs say. Turns out he MISSED a doctor. Has no info from the second neuro. So he leaves the room to go find out what that doctor had to say.

Jess is MAD. I had to keep her from walking out. I assured her that we are NOT giving up. Not under any circumstanced, gg/c there are a LOT of disorders that most docs never even read of in a medical journal. She is relieved. Had truly thought there was nowhere to turn if the DOCTOR said it was "all in her head" as she thought of the anxiety (because the old pediatrician and the second neuro both told us this using this phrase.)

This doctor is SURE it is anxiety before he sets eyes on her. Totally refused to think of anything else because he is so sure. I walked, but if nothing else we need to get help to get her on different epilepsy medications.

This neuro had a REPORT from a Dr. G, a psychologist that we "saw". He INSISTED that we "saw" this doctor. She is the one that was in the room when the pain doctor refused to do anything. Said maybe 3 sentences to us to suggest biofeedback. I told her we were already doing it and she left the room. It was incredible to me that she could write a "report" based on less than 3 minutes in a room with us. Literally 180 seconds. I told the doctor that I did NOT find her "report" credible because she spent less than 3 minutes in the room with us and had no chance to figure out anything or examine Jessica in any way. I intend to write this doctor a letter because I think it was irresponsible of her to "diagnose" Jessica this way.

The doctor came back from talking to neuro #2. Said that he was up on that. Nothing in the report about anything other than anxiety. I told him that I had no clue what the doctor wrote in the report since those were not shared with patients. ALL I knew is what he told us. Period. What he TOLD us, exactly, was that he was not interested in figuring out what this movement disorder was.

I am so sick of docs telling us one thing and writing another. Or writing things up when they have not done a responsible exam. There were reports by the frimpin' medication STUDENTS that were with the pain doctor giving THEIR opinions. Number 3 mentioned these as though they were GOSPEL!

Number 2 did say he wanted to help. He says that her migraine history makes her more likely to experience pain more intensely than other people. Apparently research now says that if you have a person with migraines and one without and they experience the same pain, the one with migraines will experience it more severely, so more severe treatment must be taken.

At least he will try some treatment. I did point out that the EEG that showed "no absence epilepsy" was done on both lamictal AND keppra and that maybe no seizures were shown because she was on medications. I did not think the conclusion that she has outgrown the epilepsy was correct. The doctor changed his thinking and said that we needed to go to a stronger dose on her medications rather than taking her off.

He actually used my notebook to write out his medication plan for her. Usually they either use a form or expect me to write it all down. It was a nice change. So was seeing him change his mind on something he was adamant about.

We are weaning off the keppra over 6 weeks, increasing the lamictal over 2 weeks, lowering the aleve, stopping zantac and tylenol, increasing the prilosec and lyrica, continuing with lidoderm, midrin and albuterol, stopping the soma and starting norgesic forte and vitamin b6.

At least we have some kind of PLAN. It is worth trying while I do some work at finding more info on my own about it.

Anyway, that is where we are now. I hope we can relieve some of her pain with this new plan.

Thanks for all the good thoughts and prayers and everything. They are much appreciated.

Jess wants to tell you all thank you. She really appreciates all the support and the help trying to us figure this out. Thanks.

 

[Wiped Out]

Susie,
Jess remains in my daily prayers and I think of her often. I'm am horrified by the way the docs have treated this. It's good that the doctor was able to see some reason and wrote down the plan. Praying the pain is relieved soon.

 

[ML]

Tell Jess her board aunites love her. Tell her that we are on her side and that we understand a good part of her anxiety stems from the fact that the doctors have been either disengaged, too busy, incompetent or unwilling to go the extra mile because her symptoms don't fall into a neat package. We will never give up believing in her mother and in her. Love, ML

 

[klmno]

I'm probably repeating things I've said before but this is all just sooooo frustrating. First, true anxiety and a problem "being all in your head" (as in imaginary) are two completely different things. But as you point out, there's no credibility in any diagnosis that isn't based on a thorough evaluation. If they wanted to do major surgery on her based on a 3 min evaluation, I wouldn't run with that either.

I know you have, and are continuing to, explore every avenue available so you've probably already looked into this idea that just croseed my mind, but I'll throw it out anyway. After I took my son to a neuro just to make sure there was no problem in that area, I learned from difficult child's psychiatrist that he (the psychiatrist) was also specially trained in neurology. I knew he was certified as a child/adolescent psychiatrist, but hadn't known he also had neuro training. This makes me think that maybe someone who has more knowledge in several specialized areas (MD, psychiatrist, neuro) might be more helpful for Jess than an expert in only one of these areas. Also, since the bigger problem you seem to be running into is doctors blowing this off, not results from a thorough evaluation, I'm wondering if someone with less experience in their career might take this more serious than an older dr who's set in his/her ways. Not necessarily for any serious treatment, but just to help with a diagnosis.

 

[klmno]

Also, this would be time consuming but I think you can request (in writing) a copy of medication records from each of these doctors and then ask them to corrrect any wrong info in them. If inaccurate info is getting passed to other doctors, that could be a big part of the problem.

 

[witzend]

It's so very frustrating to go through. I hope that you will continue to make forward progress with this doctor.

 

[susiestar]

I forgot to mention one thing. The neuro wants her to see a specific therapist to treat this. Neuro sends all his migraine patients to this man.

He is a neuropsychologist!! Does more patient care/therapy than testing and has an excellent record. It is rare that patients post things on the one doctor site that asks for patient reviews of the docs. It comes up in google searches on doctors. This dr has several parents who rated him with the best score they can give! You have to have done something fairly dramatic to get patients to think about rating them online.

We are hoping maybe he can help see something.

Thanks for the idea of a newer doctor being more likely to look into things. The 2nd neuro is quite new. Less than 3 years in practice (a baby in the words of one other doctor who liked him but said he may be too new to know what he is doing with this.)

We will look for docs who are fairly new because I also have had the experience that new docs are more aware of the latest research and are more likely to do research on problems. It is how I figured out some of my own health issues. So thanks for the advice, it is a good idea.

I have not given up. Won't ever give up. Will keep working on this for as long as I live or until we get it figured out.


Oh, the doctor is NOT going to be happy. I do NOT give permission for any doctor to get notes from treating therapists. Some things need to be private and therapy for emotional things is one, even if they relate to or include anxiety.

It is one reason I was so shocked when the neuro said he had an evaluation by a psychologist. This Dr. G was not qualified, in my opinion, to write up anything on Jessica. Not when she spent so little time with her and it was in a room with 4 other docs or learning to be docs plus myself and a nurse. It just was not possible for her to do an evaluation.

The anxiety diagnosis is esp frustrating when the therapist we see says that the only anxiety contributing is her anxiety over this long lasting illness.

But, if the doctor is willing to work with us we will stick with him. So far he is the only doctor willing to look at the ENTIRE medication list and change it to something reasonable. I have been very worried about the effect of having the sheer number of medications on her liver and kidneys, plus the potential destruction of the lining of her esophagus/stomach/etc....

The neuro did say that regardless of what caused the problem it will not go away immediately, that it will take several months. That seemed like a wise view, esp if it means he will keep working with us until it is better or he cannot think of anything that will help that we have not tried. A big part of our frustration was having docs just say "not interested".

Again, we really appreciate all the love and support you send. We could not get through this without it. Thanks.
We are supposed to get a call on Monday or Tuesday with the appointment for the neuropsychologist and the follow up with the neuro.

 

[Shari]

I hope finally she is going to get some help. This has been frustrating for ME!

Many hugs. Keep us posted.

 

[timer lady]

Susie, neurologists are an arrogant lot. Having said that, the years that my seizures were not controlled my anxiety went through the roof. I walked around terrifed - when is the next seizure going to hit. I couldn't relax.

Sweetie, it may be a combo of both. It took years to find the right medication to gain control over my seizures. I'm not saying that will happen with J ~ just want you to remember just being ill like this will make the anxiety worse which will make the physical illness worse, which will make the anxiety worse, etc, etc, etc,

See where I'm going here. I had help from a therapist; I stopped seeing myself as a seizure, if you will, & began having a life. J, if at all possible with a chronic condition, needs to try the same. Don't let J take on the "sick role".

Please don't take this as a criticism - it's not meant that way. Just a way to deal with the day to day life while you are looking for answers. J needs to be a kid while you & the docs figure this out.