Spoke to Dr. Nijjar's Secretary

[trintiybella]

She keeps insisting I see Psych. Nuerologist. I insisted it was not a psych. problem and would send her psychiatrists notes stating this. She insists I send all medical records from 2012 to review them so she can present them for the doctors to make a decision. Right now all I have it a possitive test for lyme and bartonella, some blood work that shows Vitamin D3 levels=11, and not much else. Her tests are alway fine. I have old EEG's but she doesn't want them. How can I make my case to get into to see this man? Should I have psychiatrist call or Dr. T. or one of her doctors call them?? Thanks for any help.

[T_Anna]

Suggestions:

1. Write a summary of child's history.

2. Ask any doctor's who you think will, to write a brief opinion regarding your child.

3. Write a cover letter that states your case for seeking a comprehensive a.e. workup.

 

As for the last suggestion, you could probably post your proposed letter here and there are some gifted writers/experienced parents who may be able to critique/help edit the letter.

 

T.Anna

DS15

[sf_mom]

Can I make a suggestion.

 

I am not sure who your LLMD or Lyme treating Dr. is currently but you have one of the best LLMDs in the county in NY. His name is Dr. Richard Horowitz and located in Hype Park, NY. It is common for people with LYME et al to have an inability to sleep. I met one person recently with the same issues..... literally up for weeks on end which is turn caused many psychiatric issues. Dr. Horowitz will know how to help your DD. Please call and explain the situation and see if you can't get in on a cancelation a.s.a.p. I understand an appointment with his NP is just as good if you can not see him immediately.

 

There are others on this board that see him and would be happy to explain how he has helped their children.

[trintiybella]

Great suggestions. I will call Dr Horowitz now. What is a.e. work up Anna?

[Mayzoo]

Offer to fill out a medical request form so Dr. Najjir's office can request the medical records straight from any relevant physician. You will need one request form filled out for each doctor you want records from. Often doc's have these forms on their websites, or they can e-mail it to you and you can fax/e-mail it back to them.

 

You could also get doc N's fax number and request your docs to fax her records to them if they will. Sometimes this works, sometimes it is a waste of time as they say they sent them and the receiving doc says they never get them, and you have no idea which is the truth.

 

For the future, I would get request forms from all the relevant docs and order a set of medical records from each of them for your personal use. You may have to pay for them, but having them is priceless IMO. Then you can just photo copy them for other docs you may see to save time. I have also found in reviewing the records myself, I often find things that I overlooked at first, or comments from the docs that were never mentioned to me.

Edited July 25, 2013 by Sheila Rogers

[cobbiemommy]

This is just my personal observation, one M.D. calling another can carry more impact than a dozen calls from you to the office. I know it is not fair, but think of it as chess game and the Queen (you) will win if you outmaneuver your opponent (disease). Have any or all of your doctors call Dr. N. Ask as many of them as you think could help you, because only one may have the time to actually make the call. Good luck.

[trintiybella]

I have all of her medical records on my computer. I study them frequently! I have found things that doctors have overlooked, so I get what your saying. That is a good idea about having the doctors call him. I am going to send her medical records to secretary too since she was super ADAMANT and would not budge about me getting in for an appointment! Thanks. I also just spoke to Dr. T., and he said lower vitamin D3. Her levels are only up to 44 but it is the one thing I have been raising for the last two weeks and things keep getting worse and worse. Perhaps it's just too much too soon. Not sure. Thanks so much.

[Guest]

I've already sent in everything to them recently. The secretary said they need:

 

#1. Referral from another physician (my psychiatrist referred me and wrote a short brief letter explaining my issues and that nobody has been able to help me, I've literally tried every psych. medication available without any response, and haven't received help from the many doctors I've seen, and that I need a diagnosis)

#2. Include all records from 2012 to now (they don't want anything else and I think will get irritated if you try to include it, I can't explain it, but I had loads and loads of records and labs so I just sent what they asked for from 12 - present)

#3. All recent labs.

#4. Cover letter stating how you heard about him, with referral, with records, all together and send. (I put everything organized neatly in a folder)

 

This is the way they want it done. I don't even know when I'll hear from them or if I ever will but I just followed the layout. You have to be referred though and they want the referral, I would suggest getting the referring doctor to write out the problems, write out what you are seeking, what's been tried, etc.

 

She told you to see a psych neurologist? That is certainly bothersome to say the least. I've certainly tried that and got no where. What else was said?

[T_Anna]

From what Ophelia wrote, trying the ER, may not be the worst thing, since any referrals would be within NYU itself.

 

T.Anna

[Guest]

Yea that's exactly what they told me to do. She said it may be months before I hear back and even more months before I can get an appt.

 

Good luck.

[LaurenK]

I just saw Dr. N today. He has admitted me for 3 times over the past 3 years for IV steroids. Now, I'm following his IVIG protocol starting in early August. He is absolutely wonderful but he is a neurologist. I see him for PANDAS, but I have severe autoimmune mediated tics. I think if you don't have any neurological problems, it wouldn't make sense to see a neuro. PANDAS can be purely psychiatric. Just my two cents.

Edited July 25, 2013 by Sheila Rogers

[JoyBop]

Lauren, I'm glad you are getting such great results. However, I disagree with the comment you made about only seeing a neuro for neurological issues. PANDAS is a brain issue and there are many neuros who do specialize in PANDAS or treat pts with it who do not present with neurological presentations. My DS is seeing a neuro and he does not have any tics and presents with no neurological symptoms. Likewise we see a psych regularly for psych issues. She's the one who diagnosed PANDAS but she does not prescribe abx. There are some psychs who excel at treating with abx for this disorder. The point is, you can't put a specialist into a box and decide what or how they would treat based on title. We have to keep fighting until we each find that special doctor who can and will treat the whole child. Not just one small aspect of what this disorder presents.

 

If I may throw in my two cents, I would keep searching if a doctor was that hesitant to see my child. If he were interested in the pandas case he would be scheduling your child as soon as possible. My point is we have to respect each doctors interests. Sounds like this one might now be the right one if you have to fight so hard to get in.

[LaurenK]

PANDAS is an autoimmune disease- not a brain issue.

[cobbiemommy]

PANDAS is an autoimmune disease- not a brain issue.

I will respectfully disagree. Ds, 14, has Lyme/Bart and previously had strep which led to full blown PANDAs. His brain was so inflamed that he could not think rationally. The autoimmunity led to brain issues. He could not walk properly, had horrible balance, memory and cognition problems. These are all neuro issues. I do not believe they can be neatly separated into unrelated categories; the body and brain are two parts of the one person. An insightful doctor, of whatever specialty may be able to help with the whole person.

[LaurenK]

I agree, but PANDAS is origin is an autoimmune disease, not an innate chemical unbalance. After if a child has other infections that have caused pych or neuro issues, that's different in my opinion. I respect your point of view.