My pediatrician won't follow Dr. K's advice..ugh

[FLmom]

I had a phone consult with Dr. K in Chicago yesterday regarding my 13 year old son.(I posted a more detailed description of his issues/bloodwork a few days ago under something like "neurological symptoms only-lyme".) Dr. K suggested he do a two week trial of Augmentin, followed by a steroid burst, if no improvement was seen while on the antibiotic. I was to call my pediatrician to request this.

 

I just got a call from my ped's office saying that they will not give it to me. That she wants me to see a local infectious disease specialist, and that she looked up Dr. K and saw he was more 'alternative' and would not just give out medicine like that.

 

I've got a call in to Dr. K to see what he recommends. I'm very frustrated. Has anyone else had issues getting their ped to go along with his, or another specialists, recommendations?

[nicklemama]

What a laugh. There is absolutely nothing alternative about Dr K, other than he is open minded enough to recognize and treat PANS. Have you printed out the literature and research supporting treatment and given it to her?

[LNN]

You can show your pediatrician Page 3 (last full paragraph, bottom right of the page) http://www.ocfoundation.org/uploadedfiles/MainContent/About_OCD/PANDAS%20to%20PANS%20-%20Final%20form%20for%20Pediatrics%20%20Therapeutics%202012.pdf where Dr K was one of 6 physicians who provided clinical input to the NIMH and Dr Swedo as they developed the criteria and clinical descriptions of Pandas/Pans. I doubt the National Institute of Mental Health would be considered "alternative" or invite alternative doctors to participate in establishing criteria for a peridatric disease. Perhaps this wll give him some credibility in your pediatrician's eyes. If not, it may be time to travel to someone who can help.

 

All this said, please reaize Dr K is not known for his willingness to test for or treat lyme and I know this is on your radar. The augmentin by itself will not address the lyme.

Edited November 26, 2013 by lmatheos

[nicklemama]

Pandasnetwork has all the literature and research posted on the site. Look through and find what you think is relevant for your pediatrician.

 

The unfortunate reality is many, if not most of us, get no help from our pediatricians. It took me a bit more than two years after diagnosis to find local help.

[LNN]

The updated Latitudes site also has a long list of peer reviewed research studies and articles http://latitudes.org/research-pandas-pans/ You need to be logged in with your user name to access this part of the site. Lots of good articles for parents too.

[pr40]

you may want to change to another pediatrician. what yours is doing is refusing to follow an advice by the specialist. you can say that NIH recommends the same treatment that K suggested. Also, you can ask K to send this report to your pedi and make it a part of your kid's file. THat way pedi has his covered. If he is not willing to do it even then, tell him/her you'll move eslewhere.

[qannie47]

go to another doctor

[qannie47]

although I don't understand why dr k does not write abx prescription....he always did for us

[FLmom]

Dr. K's office said that because he hasn't actually seen my son, he could not write a prescription. Did he see your child before prescribing?

[qannie47]

Yes. That makes sense though. WE are fortunate that we live 20 minutes from his office.

I can understand dr. K's position, I think he is bound by that legally. Can you have Dr. I talk to your peds doc? UGH..I can sense your frustration.

[qannie47]

Yes. I pm you.

[searching_for_help]

If I remember correctly, there is another Dr. K (same last spelling and all, I remember thinking how strange that was!),but the one you are referring to in Chicago is the doc we used, and he is definitely NOT alternative! I think they may have mistaken him for the other doc, who I think may have even been female. The doc you are referring to has the first name of Miroslav - so maybe if you give your ped the correct first name this will all be straightened out.

[FLmom]

I just talked to the PA who has seen my son and is more of an alternative practitioner. He agreed to call in the Augmentin with major reservations. He said it is an extremely high dose and is wondering why Dr. K did not mention giving him probiotics to keep the gut healthy.

 

I'm concerned now that it is such a high doseage that my son will have ill side effects from it (upset stomach etc) and will begin to refuse to take it.

[nicklemama]

There are many of us who are Dr K patients. I can't imagine it's an extremely high dose but it may be higher than they are accustomed to seeing. Dr K is not going to give you long course abx. He does recommend probiotics when he rx's for long term prophylactic doses. He will not write an rx without having seen your child. I'd start the probiotics with the rx. Saccromyces boulliardi is a beneficial yeast that is also good to take with abx.

 

Dr K rx'd augmentin 250 mg 2x a day when DS was 7. He's currently on 500 mg twice a day. Those dose has changed as he's gotten older and larger. In an acute episode of strep, the dosing can be much higher, as in 1000 mgs. Don't be alarmed.

[LNN]

My son was on 1000mg Augmentin EX daily for many months when he was 8-9 yrs old. At other times, he was on 875mg augmentin for extended periods.

 

But yes, probiotics are very important, preferrably taken during times when the stomach acid is low, like between meals or at bedtime, and always at least 2 hrs away from antibiotics. FWIW, some here really like Sacc Boullardi and it can be given at the same time as abx. But my son cannot tolerate Sacc Boullardi at all. Makes him very angry. We use CP-1 these days. But have used other brands over the years. Just look for ones that have good lactobacillus and bifido blends if you don't want to try the Sacc B or want another option.