our pediatrician wants to take over
I'm not really sure what to do. Our pediatrician has said that we should be going through her. (I was in there for a few of our other kids and was filling her in.) She has heard of Dr. Heston, but when I told her that we would need to see a rhematologist, she said that anything would go through her. She is a great doctor and we've been with her since Erika was a baby, so I do trust her. However, I'm not sure where to go from here. I'm definitely keeping our appointment with Dr. Heston, but have an appointment with our pediatrician the week after.
often the pediatrician is involved in the care of kids with uveitis. the specialsts send them reports and they help to get referral to other specialsts and to order tests. the question becomes does she have knowledge of MODERN treatment of uveitis in kids or know the connection to many of the underlying conditions related to uveitis and their treatment? rarely do the 'general practice' doctors know the causes and treatments of this stuff. Dr Heston should be controlling tests and treatment of the uveitis and if he requires a rheumatologist to help with monitoring medication's effect on the eyes and other symptoms he can get the appointment set up for your child. to me for a GP doctor to demand control is strange to say the least.
I don't know if this helps at all, but my husband Bob has several docs here in Baton Rouge who use all the info in Dr. Foster's letters to them to take care of Bob. Some shots he needs only his primary care doc would agree to give to him. Although his remicaid is ordered by the gastrodoc it is also for his eyes, not just the crohns. There is a rheumy who follows Bobs reactions to the remicade and orders it his clinic instead of gasto doc bc the rheumy monitors the effects on eyes thru the letter from Dr. Foster. The gastro doc is ok with bc he gets letters from Dr. Foster.
Also some insurance commpanies require precerts from the primary doc or they won't cover specialists, but usualy if the specialist keeps the general doc involved that gets done really easily.
I can tell you that Bob's docs all being informed by copies of the letters from Dr. Foster addrssed to them as well, has given Bob about 75 percent or better care than possible with out it.
I can understand why they want to know how the other treatment affects what they do, and I have had insurance bf that requires PCPs to be involved. We are supposed to have coordination of care for better continuity of care in this country, but most of the time the doctors get too busy to ask they staff to send a fax of a letter to 3 to 5 doctors. Takes about 3 mins, and provides life giving care to people, but most of the time it is not done.
I hope that if you will ask them to keep the Pediatrician in the loop you will see the fantastic results that Bob gets from that coordination. If they will just type a name of the docs as copy on the letter you can even send them yourself if the specialists office cannot spare 3 to 5 mins to fax them for you.
The docs here, in all specialities,, even eyes have no knowledge of how to treat Uveitis or how those meds interact with or affect other issues, but are always honored to do whatever they can for Bob once they get the info in a letter to keep them informed, and I am sure to allow them to give coordinated treatment with verifiable information only the specialist doc can give.
Re: our pediatrician wants to take over
Dr. Heston from Canada? Have you and Lori been in contact with each other, yet? Keeping your childrens doctors in the "loop" of communication is very important, but the person who is prescribing, monitoring meds and eyes, needs to be the one in control.
Re: our pediatrician wants to take over
She doesn't want to be in charge of treating her uveitis; she wants to be in charge of assembling the team that does.
Heston worked with Dr. Foster on a complicated case. He is not a trained ocular immunologist. He is qutie wonderful and will know what he can handle and what additional resources you may need.
See him and ask him to draft a note to the pediatrician with his recommendations about a care plan. If he has specialists he works with well, he can mention them.
I'm with the other's in suggesing you get Lori to help guied you here. Her kids had a pediatrician and team that was spectacular and worked with Heston/Foster. If you find that your team can't, build a new one.
Re: our pediatrician wants to take over
Thanks for all the advice! I felt a little uncomfortable in the beginning of the conversation, as if I was stepping on her toes, but by the end, I think that she was relaxing a little- hopefully! I will definitely keep everyone in the loop. She said that because the uveitis can be systemic (I think that is the right way to put it.?), that she would be the one to get the tests done. I told her that we were seeing Dr. Heston in a week and I would make an appointment with her after that... and we will be seeing her the next week. That should give her enough time to get the info.
Do you know... can I get copies of Erika's file from the dr.? (specifically our current opthamologist) I know that I need to request them to send copies to Dr. Heston, but I would like copies myself.
Also, no, I have not been in contact or contacted by Lori. I've heard her name mentioned a number of times, but have not had the opportunity.
You should be able to pay a "photocopying fee" to get all the records from her doctor. I did that to assemble Tara's records when we went to see Dr. Foster. I think they have to release this information to you(?)
If Dr. Heston is your main Uveitis man you should be okay. Just make sure he is getting copies of all test results that the Pediatrician is ordering and consult with him on whether any other tests should be run. Sometimes no cause is found, systemic or otherwise, and then it really falls into the hands of the Uveitis specialist to solve. If a cause IS found then you will be sent off to that particular specialist (while still deeing Dr. Heston to see how the Uveitis is going). It is probably because you don't know any of this yet that the Pediatrician wants to coordinate the testing, and the direction that Erika's care will go.
Re: Doctor stuff
Donna,
do you have Lori' Q's email address? I lost it when I accidentally deleted some of them.
could you contact her if you do and get her to help with this?
I got Rachelle here from Iritis.org to interact with you and Lori to help her get care. she made the appointment with Dr Heston at my recommmendation for her very young child as a steroid only approach was all that was provided to her by local doctors (she has to travel to Edmonton) I did give her Dr K's contact information as well for consideration.
wish you the best,
Mike
Edited by: MikeBartolatz at: 10/6/09 7:10 pm
Re: Doctor stuff
Thanks Liz,
I do hope that all of this can be sorted out for Rachelle and her child and that some type of steroid sparing approach can be implemented soon. this stuff can be so very difficult to treat in the kids. I wish CSF could be there for them.
This is a note from the "famous" Lori; she is traveling and can't respond, but will when she gets back. She asked me to post this for her:
Quote:I am on the berry and can't respond via the site but please let Rachelle know that she should ask her pediatrician for a referral to a pediatric rheumatologist to look for the autoimmune disorders. Dr. Heston did not prescribe the mtx and chlorambucil. Dr. Ellsworth at the Stollery childrens hospital oversaw the immunomodulation with Dr. Heston providing the update on the eyes.
So, now you know the name of the rheumatologist (Dr. Ellsworth at Stollery) that was the other half of the team. I'm sure Dr. Heston would be thrilled to put together another such team with your pediatrician's support.
I assume Lori is out of Edmonton on a FERRY rather than a 'berry'. :-) we need to archive this for future reference since it gives the name of the rheumatolgist. I wonder if CSF would work the Dr Heston and the Rheumatologist to get the 'mix' right of drugs for the girl?
You don't have to get rid of your pediatrician doctor.
My daughter Rosanna has 7 doctors she sees throughout the
year and its like a marriage. They work together also to learn.
She has a pediatrician opthomologist...and now she got trained under Dr.Kherani as a Retinal Specialist...because it helps with children Uveitis Cases. She also worked with Dr.Foster and encouraged us to go down.
Dr.Kherani is adult opthomologist and deals with Uveitis cases and clinic. Than she has a gluacomo specialist Dr.Chricton as well...she does not have gluacomo but just monitoring.
She has Dr.Gimbel who checks her yearly for lens implants she had and confirm things.
She also has Rhuemotologist ...Dr.Reenenbaum at children.
And Dr.Foster who she has seen twice....who helped us here in Canada with her case.
So really I can't see her not working with all the doctors...she just would be part of the team.
You need more than one ophtomologist with severe and chronic cases.
I sat down with Dr.Ells the peditrician and told her she was doing great but did not want to regret 10 years from now not trying to find best treatment if they were not sure themselves. She agreed. Sent a referral to Dr.Foster and all the other doctors were on board and have in last 6-7 years helped many other cases.
If they had children with same condition they would go see Dr.Foster or Dr.Gimbel they all told me....so I would really try my best to get a team.
The GIMBEL CENTRE is in EDMONTON too...I am sure they can get you a referral to Dr.Heston as well.
Looks like you are seeing him and I am sure they will all work together.
You do always have a right to get copies of your medical files or your da's. We never had any problems before HIPPA rules, but now it is even spelled out in HIPPA rules. Some offices charge for the copies yet some do not, guess it matters how many copies.
You also have a right to review any medical records and ask for any mistakes to be corrected. That applies to mental health records as well. Our insurance companies have also told us that we have a right to our medical tests, so we have films in some cases or xrays we keep on a medical file with an online company.
Hope that helps.
I don't know what Bob would do without the dedicated team of physicians who have helped him. I do know that he would be blind now.
The doctors here in our home town are always so pleased to get copies of Dr. Foster's letters. He saw the Rheumy yesterday and the gluacoma doc today, and it helps so much to have them all included in the team and that they have the results of the office exam almost two weeks ago by Dr. Foster.
You have great support here from what I see, sounds like you are getting great advice.
Re: our pediatrician wants to take over
I don't know what I'd do without our pediatrician! He is involved in all of Drew's care. By that I mean, any referral we, his general illness and even these weird rashes that no one can figure out. He receives notes from all of his specialists- opthamologist, rheumatologist, uveitis specialist etc. He orders Drew's lab work routinely but send copies to others. Anytime there is a problem I call or email him and have an answer almost immediately. Plus he is close to us whereas, Drew's specialist are several hours away. This is just my experience but I honestly don't know what I'd do without him! At one point in time, he even covered Drew's remicade infusions because the peds hem/onc left.
thanks for the advice
This is all great advice! Thank you!! I suppose we will see over the next couple weeks what course of action we will be on. We see her opthamologist we've already been seeing, tomorrow. I'm going to ask for all her records and hopefully they will give me a copy, otherwise I guess I will at least ask them to forward her file on to Dr. Heston and our pediatrician.
From there, we see Dr. Heston this next week Wed. and our pediatrician the next week. From there, I guess we will be on our way! I will take in that dr.s name at the Stollery and see where we go from here. I think I have everything in order in the way of information.
I'm still reading lots and feel like I still don't know anything and don't have answers for Erika. I'm hoping that after seeing Dr. Heston, we will have more answers and at least get a game plan.
Thanks again. I will update in a separate post after tomorrow.
Our pediatrician was central to Mike's care and was part of the team. he was the easiest to get into see if there were any prpblems and was certainly the fastest responder when Mike had cellulitis and got us immediately into the hospital. He was included in all communications and after a while it became verbal updates that were given, and he asked to play that role. We really appreciate his efforts and support as he was the first doc Mike had
Once the rheumy got involved she was refers to the pediatrician as well. The difficulty is that she has such a busy practice when you have issues such as possible infection etc, you wont go to her. You still need that pediatrician.
Rachelle, start a notebook and make sure that you record all info, meds, eye exam results, etc frome very doc and visit as you will become the cheif "coordinator" of this team. Unfortunately we haven't been able to clone Dr. Foster and have one person
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