Update on Jess and a New Question

[susiestar]

I took Jess to the pediatrician for the follow-up yesterday. The pediatrician told us that it is "extra paramital movement" and most likely is caused by the amitryptyline we started her on to prevent migraines.

The pediatrician said if it doesn't go away in a few days to let her know and she will call the neuro to try to figure it out.

She DID stop to look at the info I had on Pediatric Tremors from the site wemove.org . Thanks Beth for giving me that link, I really appreciated it. This type of medication IS listed as potentially causing this tremor - and treatment if this medication causes it is to not take the medication.

The pediatrician did tell us to give her 1-2 benadryl caplets every 4 hours until the tremor stops. She "thought" it would help. She did try to look it up, but after spending 25 mins going in and out of our room and her office to try to find out, couldn't spend anymore time looking it up.

Jessie's allergies are acting up, so that is fine. Otherwise we problem wouldn't try the benedryl so much.

I DO have another medical problem with Jessie though.

The pediatrician told us that she is not comfortable prescribing ANYTHING to jess since Jess is on "so much medicine" and is so very sensitive to medications.

Jess is on Keppra daily and on midrin and skelaxin as needed for migraines and muscle spasms in her back, respectively. It surely doesn't seem like a whole lot of medications, esp as she is pretty stable on those.

The pediatrician basicly said that Jessie will need to see a specialist for ALL medical needs from here on out.

So what do I do for a sinus infection? I guess I try to see one of the other docs, but I am just uncomfortable. This doctor knows Jess quite well. And Jess does have odd reactions to medications. JEss HATES teh male docs in the practice because they treat her like an idiot. They treat girls VERY differently than boys, at least from how they treat MY girl and boys. For an emergency I will tolerate them.

I would go to another pediatrics practice, but there is only 1 other. They are not tied into the local hospital, so they can't pull up labs and scans on the computers. They put a LOT of pressure on parents to have the whole family seen there - they are more a 'family' practice than a pediatric practice, AND 1 of the partners almost killed me a few years ago.by overprescribing a medication to prevent migraines. It is NOT a medication that is used frwquently to prevent migraiens, and the doctor started me at a level that is way too high anyway. I am just very leery of the entire practice.

The other problem with the pediatrician not wanting to treat Jess is that the specialist WON'T. They tell us to go tot he pediatrician and then have the pediatrician call them. The neuro is the worst about it, but all of them do it. I am going to have to write a nice letter to the neuro to ask how to handle things. I am confused. This really IS something that the neuro should have treated after the ER ruled out everything "obvious". At least from what I ahve learned online about it.

Do I keep taking Jess into the current pediatrician practice and only schedule her with other peds?

Why is it always some STRANGE reaction with Jess? Oh, right. She is related to me. And husband.

(Is this proof husband really ID an alien???)

Thanks for any advice/opinions/suggestions. I really appreciate them, and am quite nervous about having a child that NONE of the docs really want to treat.

And I can't give her back. The warranty expired.

 

[Jena]

I am very confused. I know you wanted an "enlightened" response, yet hmmm

Ok if Jess gets sick, as you said sinus infection, etc. their basically stating she is on too many medications to treat a basic infection with-antibiotics?? This makes absolutely no sense to me at all.

Is there an administrator for this particular practice in which you could go sit down with and get some clarity? It makes absolutely no sense to me that when she gets sick that they will then refer her to or you should go to a specialist.

?

 

[totoro]

I wonder if this doctor feels she is in over her head? Like this is beyond her area of knowledge? Do you think?
Maybe she is afraid of things getting worse or having to make a call that she is not comfortable with and this was her *way out*... why did it take her so long to get the info for the Benadryl?
Shouldn't she have followed through?

I don't really have any other thoughts... Doctors just flat out confuse me at times!

It was like when K's psychiatrist kept medicating her for a behaviour problem... I kept saying, "But she does not have a behaviour issue?"
He would not listen, he was doing what he only knew. Talking around me and trying to make it sound right...

If she is not supposed to be on these medications, um, then why is she? And if this Doctor really has a concern regarding her amount of medications, SPEAK up! Tell you as a parent what the concern is.
If this Doctor has a better plan, tell you.
Sorry just venting for you!!!

I hope you can find her something and someone that Jess is comfortable with.

 

[Jena]

What T just said is what I was thinking as well with it.

 

[everywoman]

Susie, I am not comfortable with a dr. refusing to treat a child who is an established patient. Did she prescribe the medications Jess is currently taking? Is she possibly worried about a medication reaction? I would continue to see her. Just because she isn't comfortable, doesn't mean that Jess or you should be made uncomfortable by having to switch.

 

[susiestar]

The ONLY medication Jess takes on a daily basis is the Keppra. the other medications are ONLY taken IF Jess has a problem.

THIS doctor added the amitryptiline to prevent Jess' migraines. And this medication was removed by this doctor.

The doctor basically said she is uncomfortable adding ANY medication to Jess' body because JEss has had "atypical" reactions to a few medications.

Um, kids becoming disinhibited (or higher than a kite, in layman's terms) on prozac is NOT atypical. And it is the only other reaction that this doctor has records/knowledge of.

JEss did have considerable problems when getting onto an anti-seizure medication. But htat was all done through the neuro. And none of her reactions were atypical. Just too much dulling from the topomax and she felt like she had a cold for 2 months with the keppra at first.

Most medications bug her stomach, but they always have. So she eats before seh takes them if possible, and it is common for kids to react this way.

I can't figure out how ONE medication is too many medications to be on for the doctor to prescribe other medications for.

She wouldn't really answer, just started easing out of the room. RIGHT as Jess started shaking and wanted me to hold her. JEss was up on the table, which isway above normal seating height. So I didn't want her to fall.

I am glad I was not the only one confused. I could see if Jess took 3 medications daily, but it is just the one.

HEck, thank you takes advair, singulair, claritin and generic zantac every day (over the counter zantac for GERD - goes with asthma). The docs have never even suggested he SEE a specialist, much less go to one for everything because he is on "too much medication".

I don't want to bring up thank you, because I don't want to have to take him to the specialist all the time either.

It takes 3 months MINIMUM to see any specialist. And the neuro charges $10 per prescription written or called in between visits.

 

[flutterbee]

I don't see any specialist seeing a patient with an illness treatable by the primary care physician. They just won't do it.

That said, my GYN told me that I'm very lucky to have the doctor that I have because a lot of doctors would have dumped me because I'm a complicated case - they either don't have time or don't know what else to do, so they don't. Pretty sad, huh.

 

[house of cards]

Sounds like she is feeling guilty for rxing the amitrytriline. I think she is way overreacting though. What a tough spot to be in, and what's with charging you for writing a rx??He is a doctor, it is what doctors do.

 

[Josie]

I think it is what Wyntersgrace said. Your daughter is not a simple case and the doctor doesn't want to be responsible for her.

I've had one doctor stop treating my daughter and another one refuse her as a patient because they didn't want to deal with her diagnosis.

Do you have the doctor in a box places you can go for routine problems like strep and sinus infections?

 

[susiestar]

I think you are right about her not wanting to take responsibility for a complex case. She has only owrked about 1/2 tim for over 20 years. She is in Wed-Fri and about 1 weekend every 2 months. BUT with the short schedule she is the doctor who is most likely to keep up on research, which is one reason I like her. If the problem is unknown she doesn't just throw stuff at it, she researches it or cultures it and looks for the reason.

I guess I will have to schedule jess with the other female doctor I like. She works fulltime plus, and that has its benefits too.

As for charging to write a prescription, the doctor is the top pediatrician neuro in the state, hands down. He teaches, publishes, and has a huge caseload of extremely complex pediatic neuro problems - many of htem medicaid patients. He wants you to bring ALL your medications to the appointment and they will write 3 motnhs worth, or however many until your appointment.

It is dangerous to skip appts, but it got to be a problem with parents of kids on medications that both had to be monitored and couldn't just be stopped. The parent would not come to the appointment but need all sorts of prescriptions written with-o the doctor monitoring things. So the fee, which MUST be paid in full BEFORE the next prescription is due and CAN'T be charged to medicaid, si the docs way of ensuring that he actually SEES the patient regularly - not just get roped into rxing and then having all sorts of problems because he doesn't get to see the kid.

He actually used to go chase down some patients at their homes if it was severe and they missed 2 appts. I have heard from parents that by the time he is done with the adults, they dont' miss appts again. But he is ALWAYS great with the kids. Even difficult children. He kept Wiz laughing his head off for a full 45 min appointment - and we had not see Wiz smile in over a year at the time! The office rules are a pain, but the doctor WILL explain why they are there - so it makes it easier to tolerate them.

Anyway, if ANY of you think neurological problems are going on, it may well be worth a trip here to consult this doctor. He truly IS this good. And he is FUNNY!

When that was explained, I was OK with thtepolicy. It just can be a pain sometimes.

 

[house of cards]

Wow, when you explain it, he goes from a strange doctor to a very smart, caring one.

 

[susiestar]

yeah, I had real problems with the rule until the doctor himself explained it to me.The office staff just said it was policy. I knew how complex some of the cases were from talking to people in the waiting room. You don't often see kids under a year old who have had more than 3 brain surgeries, but there are some I run into regularly there. And I have heard other docs and nurses talking about him, when they were around the corner from us during various waits for testing, etc... (and Jess sees another doctor in the same building).

Anyway, isn't it interesting how much the outlook on a policy can change when you know "the rest of the story"?