are doctors allowed to share info to other doctors

[AmyB]

I was curious if it is allowed for the neurologist to send info. and opinions dictating the care of my child. I had 2 neurologist at Childrens Boston send letters with out permission to the ped. telling her not to give my son any abx unless he had a pos. strep test. He hardly ever tests pos. for it and I don't think his trigger is just strep related but more infection related. So he is now ticcing like crazy just getting worse and I cannot get an abx because of the letters they wrote to the ped. I feel like a junky trying to get abx from my ped. for my son. I'm curious if DAN doctors can give ABX. The ped. is now on board trying some new heavier psych meds and mental health providers. She was open minded but now not at all. Its amazing how some parts of the country doctors will treat your child correctly and other parts they won't acknowledge the illness as in MA. This ignorance is not tolerable at the hands of our children. There should be repercussions for these doctors who poorly treat, incorrectly treat, or just plain ignore PANDAS and or PITANDS patients. I cannot believe living in the Boston area I cannot find medical help for my child. Sorry ladies just angry and venting. Please tell me some of you feel my pain today. I guess when DS9 gets worse I get angry.

 

I thin Dr.B is next in July. Thanx for listening.

[colleendonny]

I was curious if it is allowed for the neurologist to send info. and opinions dictating the care of my child. I had 2 neurologist at Childrens Boston send letters with out permission to the ped. telling her not to give my son any abx unless he had a pos. strep test. He hardly ever tests pos. for it and I don't think his trigger is just strep related but more infection related. So he is now ticcing like crazy just getting worse and I cannot get an abx because of the letters they wrote to the ped. I feel like a junky trying to get abx from my ped. for my son. I'm curious if DAN doctors can give ABX. The ped. is now on board trying some new heavier psych meds and mental health providers. She was open minded but now not at all. Its amazing how some parts of the country doctors will treat your child correctly and other parts they won't acknowledge the illness as in MA. This ignorance is not tolerable at the hands of our children. There should be repercussions for these doctors who poorly treat, incorrectly treat, or just plain ignore PANDAS and or PITANDS patients. I cannot believe living in the Boston area I cannot find medical help for my child. Sorry ladies just angry and venting. Please tell me some of you feel my pain today. I guess when DS9 gets worse I get angry.

 

I thin Dr.B is next in July. Thanx for listening.

[colleendonny]

I'm sorry for what your son is going through. I do not have an answer to your question, but am wondering an answer as well. We see Dr. B. We actually have our 2nd appointment with him on Tuesday. Do you see him as well, or did you say you are going in July?

P.S. We are in the Boston area too and find it frusterating that our CHB wanted to prescribe SSRI's. We haven't done so, we tried the abx route, which hasn't quite worked for us yet either...

I'd like to find a pedi here in the area that will treat or acknowledge PANDAS.

Where abouts are you guys? You can PM me if you like.

[JAG10]

Hi AmyB,

 

Did your pediatrician "refer" your son for the neurology consults? If so, that may be why they are allowed to communicate treatment suggestions. It seems that families who have pandas/pans-cooperative pediatricians are more the exception than the rule. And they can get grief from their partners. There are some, but not the norm by a long shot. Most peds are parrots of the AAP. I switched my girls' ped in August 2011, went through the whole, long history and where we were with each girls' treatment with Dr. B and when I was done all he could say to me about my then dd11 was "so, when can I catch her up on her meningitis vaccine?" Yeah, that was the only nugget from him and I wasn't even asking him for abx! We switched again to a family doctor as the ped was useless to us.

 

A DAN doctor to compliment a pandas/pans specialist is a great idea. Your child doesn't need to be diagnosed with any flavor or even symptoms of ASD to see a DAN doctor. They are more likely to be cooperative with labs, vaccines if necessary, and abx. If you can find an "in-network" DAN, that is a fantastic option. Some parents, even if Lyme isn't an issue, have found cooperation with LLMDs, but cost can be a factor there as well. If not, Dr. B will prescribe abx and order labs, but he can't be your son's only doctor. I think parents who want to depend on Dr. B's office for too much can set themselves up for dissappointment. Actually, I think that is true of most of the specialists mentioned frequently here.

 

In a way, it comes down to evaluating your own resources. Are you big on personality (like a salesman), scientific research and time, but low on funds? You may want to "interview" different peds trying to get them to see pandas/pans the way you see it. That's not my personality, I'm a shorter on time, working mom with enough financial resources to obtain the path of least resistance for the best care we can afford for our girls. I personally don't seem to have the power to persuade "mainstream" physicians nor do I have the energy to work at it. There are definitely some in this community who do though.

 

It stinks to have a sick, suffering child and have to manipulate your specific set of variables to get them treatment because the medical community is full of play-it-safe group (lack of) thinkers. It is reality though. If there are areas of the country where members seem to have more success it is because they know who the sympathetic docs are. Not all are posted here. There is doctor hoarding, not out of selfishness, but fear that posting names online could result in a tsunami of inquiries that could turn the doctor uncooperative. So, try and determine other members who live near you and network with them as well.

 

Good luck sounds trite, but I really hope you are successful finding a cooperative doctor soon.

Jill

[EAMom]

Hi Amy,

You might send NancyD a msg...she is in your area. Also, here's a previous thread on Boston area docs with some names: http://www.latitudes.org/forums/index.php?showtopic=8904

There is also the helpful docs list http://www.latitudes.org/forums/index.php?showtopic=5023&st=45

 

Here are some from the list (can't vouch for them personally)

Dr. Kenneth Bock in Rhinebeck, NY (specializes in integrative medicine and also a DAN doctor)

Dr. Robert Fuhlbrigge in Boston, MA (pediatric rheumatologist at Children's Hospital Boston)

Dr. Raif Geha in Boston (pediatric immunologist at Children's Hospital Boston; specializes in immunodeficiency)

 

and

 

Dr. Dan Geller at Mass General 617-724-6300 (augmentin only?)

 

Dr. Robert Fuhlbrigge in Boston, MA Assistant Professor of Pediatrics(pediatric rheumatologist at Children's Hospital Boston)

Dr. Raif Geha in Boston (pediatric immunologist at Children's Hospital Boston; specializes in immunodeficiency)

Childrens Hospital Boston

Rheumatology /Fegan 6

300 Longwood Ave.

Boston ,Ma 02115

0ffice # 617 355-5727

page 617 355-6369

email robert

robert.fuhlbrigge@childrens.harvard.edu

Edited January 8, 2012 by EAMom

[911RN]

I was curious if it is allowed for the neurologist to send info. and opinions dictating the care of my child. I had 2 neurologist at Childrens Boston send letters with out permission to the ped. telling her not to give my son any abx unless he had a pos. strep test. He hardly ever tests pos. for it and I don't think his trigger is just strep related but more infection related. So he is now ticcing like crazy just getting worse and I cannot get an abx because of the letters they wrote to the ped. I feel like a junky trying to get abx from my ped. for my son. I'm curious if DAN doctors can give ABX. The ped. is now on board trying some new heavier psych meds and mental health providers. She was open minded but now not at all. Its amazing how some parts of the country doctors will treat your child correctly and other parts they won't acknowledge the illness as in MA. This ignorance is not tolerable at the hands of our children. There should be repercussions for these doctors who poorly treat, incorrectly treat, or just plain ignore PANDAS and or PITANDS patients. I cannot believe living in the Boston area I cannot find medical help for my child. Sorry ladies just angry and venting. Please tell me some of you feel my pain today. I guess when DS9 gets worse I get angry.

 

I thin Dr.B is next in July. Thanx for listening.

 

Short answer- yes. Specialist usually write "consult note" to Peds after each visit with child. This usually happens even if Peds was not referring MD. Peds/PCP is considered captain of the ship- all info funnels to them from specialists. This is due to fact that often specialists drop in/ drop out from child's care but the Peds does not. Example- go to ENT for referral- have T&A- have a post op visit and ENT does not need to see child anymore unless there are further issues requiring his/her expertise. They tell you to come back as needed but schedule no further appts. Peds has that note and MD's disposition at their disposal.

 

If a child has a chronic problem requiring regular visit with Neuro, Nephro, Allergy etc- the specialists communicate so that Peds in "in the loop" about what specialists are following. Example- my son is on Antiseizure meds- followed by Neuro. Peds is not responsible for Rxs and changes in meds but he needs to know what Neuro's assessments and opinions are regarding his tolerance of medication and continued use. Typically, specialists focus on their specialty and Peds is supposed to be looking at the whole being.

 

Last visit to my Neuro- my son had Impetigo- I had been treating with Bactroban for weeks. I had been "chasing" lesions as they popped up. Neuro even volunteered he might need oral antibiotics to treat it systemically just to stop it all at once. Neuro can certainly treat Impetigo and could have written a Rx for oral antibiotic but he told me to follow up with Peds. Why, I suspect because it is not his specialty area and he didn't want to be bothered or overstep his bounds of responsisbility on why he is seeing my son. Sounds crazy, but that is how some docs think.I ended up clearing infection with Bactroban, alone, but I thought this was a good example of how the docs separate their responsibilities.

 

They don't need "permission" to write a consult note to primary doc- this is how the system is set up for contiunity of care and communiction between docs. If they have seen your child and are involved in their care- that is inherent in the consent agreement for treatment- you likely signed something to that effect when they have you sign the HIPPA notification.

 

HTH!

[NancyD]

I have a good pedi up north who understands PANDAS. He prescribes abx and also wrote letters of support for IVIg for DD. For a specialist we have been to most Boston-area MDs -- frankly, you're much better off seeing Dr. B In CT. We have been to both Dr. B and Dr. L. We have also been seeing a GREAT DAN doctor in upstate NY for over 8 years (Ken Bock). He's treating DD's PANDAS/Lyme/Bartonella and also my Lyme/Bartonella. If we have to do an outside lab our pedi orders it so insurance will cover it. Feel free to pm me for more specifics.

Edited January 8, 2012 by NancyD

[3boysmom]

Is that the same Kenneth Bock that wrote the book: Healing the New Childhood Epidemics. (Aitism, ADHD, Asthma, and Allergies). ? Love that book! I bet it is him because the book mentions PANDAS

 

I bet he is a wonderful and dedicated man!

[tpotter]

All good responses. The only thing I will add is not to hesitate switching drs if you aren't happy with them. I switched pediatricians 4 times, before I finally found one that is "open." But, we still have our occasional issues with him, and I still take my kids to the PANDAS specialists, and to a DAN doc (we would use only him, as he is board certified in Family Practice, but he is about 45 minutes each way.) Yes, DAN docs can definitely write prescriptions, and even if your child does not have autism, the doc tends to think more open minded.

[NancyD]

Yes, that's him. My DD is one of the case studies in his book. He's really TERRIFIC...my absolute favorite doctor!!!

 

Is that the same Kenneth Bock that wrote the book: Healing the New Childhood Epidemics. (Aitism, ADHD, Asthma, and Allergies). ? Love that book! I bet it is him because the book mentions PANDAS

 

I bet he is a wonderful and dedicated man!