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Going to see new immunologist

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We will be seeing a new immunologist for DS, 13 on Thursday. We had been seeing Dr. B and I still love his practice, his style and believe in him wholeheartedly, but we have good reasons for possibly switching to someone new. #1) Insurance will not pay for DS's IVIg even though they precertified his treatment. So, I am hoping this second opinion will verify the first doctor's opinion and thus force the insurance to pay. (Precertification is even more involved and binding than a simple preapproval. We have retained a lawyer to work on the appeal, but meanwhile DS is getting sicker and more fatigued.) #2) The travel was just killing us financially, mentally, and physically. #3) This doctor is across the state, but still within the state borders, so possible IVIg could be obtained at our local hospital or CORAM or something similar if needed and doctor agrees.


Our doctor was recommened by the Immune Deficiency Foundation and he is part of the Jeffrey Modell Foundation's network of doctors. If you have not looked at their websites, I highly encourage you to do so!


I am not 100% sure of what to take to this new doctor. I am reluctant to say PANDAs until I feel out his reaction to the topic. In my packet I have copies of all of the labs from the last several years. Most of the results are horrible and consistent with primary immunodeficiency. Also, I have listed the contact information of the docs we have seen in the past year (DR B, DR J, and Dr T) and his local pediatrician who is very supportive and believes that Ryan is showing improved results. I have listed all of his medications and the few supplements he takes. I have pictures of the Bartonella rash that flared right after his first IVIg. The rash looks different now, but it is still there. I also thought about taking pictures that show the changes in his smile and posture??? He went from a typical smile to a full on grimace that has lasted a loooonnnnggg time.


What else should I take with me? Should I take copies of Swedo's published work?


Truth be told, I am scared. The last time we went to a hospital that dealt with children we saw an infectious disease doc that did no blood or lab testing and told us we need to see a psychiatrist. Right after that is when Dr. B found the intracellular strep in his nose...


Let me know if I have missed anything.



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We are seeing an new immunologist on the 4th. Can you call in advance and find out what their approach is towards PANDAS, or is it simply not relevant as you need an immunologist regardless of their view on PANDAS?


I am taking with us:


1. A print out of kiddos medical history that I made on this site: https://www.onemedicalpassport.com/lobby/lobby.asp?bhcp=1. It puts all the major history into one place so I do not have to remember it all or carry the 5" binder with me with all the dates.


2. All past lab work.


3. A filled out Pediatric Acute Neuropsychiatric Symptom Scale (but I know our immunologist is on board for PANDAS).


4. Her past MRIs (for other medical conditions).


5. A copy of the lab culture for her recent T & A and the JAMA medical article on how to treat her specific bacterial infection.


6. A list of her SX at time of onset.


7. Logs of changes as they occurred after introduction of treatment.


8. List of all meds and dosage, including homeopathic (which is on that medical history report).


9. Copy of immunization records.


10. A log of recent illnesses, the dates, the treatment plan, and the outcome.


I will look at what articles I took to the pedi that helped get her on board for at least a little while. I know it was an NIMH article, but do not remember which one. Good luck.

Edited by Mayzoo
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Cobbie, what state are you in? Who is the Immuno? I know a few of them from conventions. Go with the Immuno diagnosis if you have that. Then approach them about the Pandas. Most are not receptive to it. Fyi. You cab pm me if you want. My kids are both Immuno. One on ivig for years

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