How do I do this?

[Lori Ann]

Hi everyone, I am new to posting on this forum, but have been reading it a lot lately for help. I suspect my seven year old has PANDAS, but I am having trouble getting the diagnosis and treatment he needs. I even picked a doctor that was recommended by other parents on this forum. My son fits the profile for PANDAS and even has elevated strep titers! Our doctor however, thinks that low iron and sleep problems are of more concern than PANDAS and is dragging his feet with a diagnosis. He did give us the collection tubes and paperwork for the cam kinase II test, but the paperwork looks dated and I can not get in touch with Dr. Cunningham's lab. I e-mailed Dr. K, but he told me to find a doc in my area (Charlotte, NC), as it would be an unneccessary expense to come and see him. Here are my questions: How do I get my doctor to diagnose PANDAS? How do I get him to treat for PANDAS? How do I get the doctor to understand the the absolute ###### that we are living in? (sorry for the lack of better terms) The longer we drag our feet, the more worried I become. Every day is a struggle. I am usually reduced to tears before lunch and I am dreading the start of school, which happens to be when I have to return to work too. We have tried four different anti-pyschotics and nothing touches his anxiety, OCD, hyperactivity, defience, or depression. It has been such a help listening to your stories and knowing that I am not alone, although it feels that way here in the real world.

[Suzan]

Hmmmm, my computer is not working, let me try this again and see if I lose my post.....

 

I am going to PM you to ask which doc you are using, I live in Charlotte too. Maybe I can help. I amsorry you are going through this!

 

Susan

[forjpj]

I'm so sorry you are in this, and so sorry you are not getting the help you need! I got a sinking feeling in my stomach, and my heart hurts cause those feelings are all too familiar!! I'm sure others have better advice than I can give but here is Kathy Alvarez's email at Dr. C's lab...she can get you a kit. Kathy-Alvarez@ouhsc.edu About the doctor...I'm sure others can help you with docs in Charlotte? Hopefully, there some more willing docs in your area? Finding the sympathetic doc is the key! How about Dr. Latimer in Maryland? Would it be easier to get there if you can't get help locally? Will your doc even give you short term antibiotics for the elevated strep titers? That could by you some time. A lot of people have luck with motrin reducing brain inflammation...try that for some immediate help. I also think most of our kids are on fish oil, not for immediate relief, but just for improved brain function. Sorry I'm not much help...others will chime in with better, more thought out advice, but you have my prayers!!

Sarah

[kimballot]

Hi everyone, I am new to posting on this forum, but have been reading it a lot lately for help. I suspect my seven year old has PANDAS, but I am having trouble getting the diagnosis and treatment he needs. I even picked a doctor that was recommended by other parents on this forum. My son fits the profile for PANDAS and even has elevated strep titers! Our doctor however, thinks that low iron and sleep problems are of more concern than PANDAS and is dragging his feet with a diagnosis. He did give us the collection tubes and paperwork for the cam kinase II test, but the paperwork looks dated and I can not get in touch with Dr. Cunningham's lab. I e-mailed Dr. K, but he told me to find a doc in my area (Charlotte, NC), as it would be an unneccessary expense to come and see him. Here are my questions: How do I get my doctor to diagnose PANDAS? How do I get him to treat for PANDAS? How do I get the doctor to understand the the absolute ###### that we are living in? (sorry for the lack of better terms) The longer we drag our feet, the more worried I become. Every day is a struggle. I am usually reduced to tears before lunch and I am dreading the start of school, which happens to be when I have to return to work too. We have tried four different anti-pyschotics and nothing touches his anxiety, OCD, hyperactivity, defience, or depression. It has been such a help listening to your stories and knowing that I am not alone, although it feels that way here in the real world.

 

I am sorry that you are going through this. I am hoping that the PM from Suzan can be of help to you. You mentioned that your son has elevated strep titers - is he being treated for that with antibiotics?

 

 

Low iron, of course, is not to be ignored, and it sounds like your doctor may be trying to treat the low iron while pursuing PANDAS diangosis using the cunninham test. When you say you cannot get in touch with Dr. Cunningham - have you emailed her lab? (info at http://www.pandasresourcenetwork.com/research-programs.html).

 

I am surprised that Dr. K said to find someone in your area... that is making me wonder if he is also thinking this is not PANDAS for some reason.

 

How long do you think your son has had PANDAS symptoms? Has your son had antibiotics in the past (for any illness), and has he gotten relief of his neuropsychiatric symptoms from them?

 

Best wishes to you as you navigate to finding help for your son.

[thereishope]

When my son first went to the pediatrician with his behavior changes (before we knew he had strep and PANDAS), she too asked about iron levels and possible anemia because of he very fair skin. Well, it wasn't iron, it was an active strep infection without a sore throat or fever and it was/is PANDAS. Follow your Mommy gut.

Edited August 8, 2010 by Vickie

[Suzan]

I must be doing something wrong. When I try to PM you, my screen goes dark and I can't do anything. Can you PM me?

 

Susan

 

edit... OK, I figured it out, I'm a dork

Edited August 8, 2010 by Suzan

[bgbarnes]

Hi everyone, I am new to posting on this forum, but have been reading it a lot lately for help. I suspect my seven year old has PANDAS, but I am having trouble getting the diagnosis and treatment he needs. I even picked a doctor that was recommended by other parents on this forum. My son fits the profile for PANDAS and even has elevated strep titers! Our doctor however, thinks that low iron and sleep problems are of more concern than PANDAS and is dragging his feet with a diagnosis. He did give us the collection tubes and paperwork for the cam kinase II test, but the paperwork looks dated and I can not get in touch with Dr. Cunningham's lab. I e-mailed Dr. K, but he told me to find a doc in my area (Charlotte, NC), as it would be an unneccessary expense to come and see him. Here are my questions: How do I get my doctor to diagnose PANDAS? How do I get him to treat for PANDAS? How do I get the doctor to understand the the absolute ###### that we are living in? (sorry for the lack of better terms) The longer we drag our feet, the more worried I become. Every day is a struggle. I am usually reduced to tears before lunch and I am dreading the start of school, which happens to be when I have to return to work too. We have tried four different anti-pyschotics and nothing touches his anxiety, OCD, hyperactivity, defience, or depression. It has been such a help listening to your stories and knowing that I am not alone, although it feels that way here in the real world.

I don't know any Doctors in Charlotte- but I do have a Sorority sister who is a Dr in Sparta that has treated PANDAS patients before(found out on Facebook when I was posting about the Pepsi contest). Let me know if you want her information. I don't know how involved she is but she is aware, believes and is a wonderful woman. good Luck- keep fighting and trust your Mommy Gut!

Brandy

[EAMom]

Every day is a struggle. I am usually reduced to tears before lunch and I am dreading the start of school, which happens to be when I have to return to work too. We have tried four different anti-pyschotics and nothing touches his anxiety, OCD, hyperactivity, defience, or depression. It has been such a help listening to your stories and knowing that I am not alone, although it feels that way here in the real world.

 

Hugs!

 

Does advil help at all?

 

I would also get current throat cultures (even with elevated titers) b/c if they are positive then that might make it easier to get antibiotics. Also culture family members since PANDAS kids can react if a family member is positive.

 

It really burns me up that a child could be on 4 different anti-psychotics (without sucess) but a parent has to struggle to get antibiotics.

[Lori Ann]

Thanks for the help. We are taking the iron seriously and he is on iron supplements right now. Thanks for the information on Dr. C's lab. I did e-mail Kathy, but I have not heard from her yet. I am considering seeing Dr. Latimer if we don't get moving on this soon. I will talk to my doctor on Monday to change CJ's meds for the 5th time. I might ask him to try a short course of steroids to see if this helps at all and to determine if it is PANDAS? We have tried antibiotics. They helped bring down the titers a bit, but did not help his symptoms. A couple of years ago we noticed behavior problems and a few transient tics. After having his tonsils and adenoids removed, he improved tremendously, I don't know if this qualifies as an earlier episode or not.

 

 

 

 

 

 

 

 

Hi everyone, I am new to posting on this forum, but have been reading it a lot lately for help. I suspect my seven year old has PANDAS, but I am having trouble getting the diagnosis and treatment he needs. I even picked a doctor that was recommended by other parents on this forum. My son fits the profile for PANDAS and even has elevated strep titers! Our doctor however, thinks that low iron and sleep problems are of more concern than PANDAS and is dragging his feet with a diagnosis. He did give us the collection tubes and paperwork for the cam kinase II test, but the paperwork looks dated and I can not get in touch with Dr. Cunningham's lab. I e-mailed Dr. K, but he told me to find a doc in my area (Charlotte, NC), as it would be an unneccessary expense to come and see him. Here are my questions: How do I get my doctor to diagnose PANDAS? How do I get him to treat for PANDAS? How do I get the doctor to understand the the absolute ###### that we are living in? (sorry for the lack of better terms) The longer we drag our feet, the more worried I become. Every day is a struggle. I am usually reduced to tears before lunch and I am dreading the start of school, which happens to be when I have to return to work too. We have tried four different anti-pyschotics and nothing touches his anxiety, OCD, hyperactivity, defience, or depression. It has been such a help listening to your stories and knowing that I am not alone, although it feels that way here in the real world.

 

I am sorry that you are going through this. I am hoping that the PM from Suzan can be of help to you. You mentioned that your son has elevated strep titers - is he being treated for that with antibiotics?

 

 

Low iron, of course, is not to be ignored, and it sounds like your doctor may be trying to treat the low iron while pursuing PANDAS diangosis using the cunninham test. When you say you cannot get in touch with Dr. Cunningham - have you emailed her lab? (info at http://www.pandasresourcenetwork.com/research-programs.html).

 

I am surprised that Dr. K said to find someone in your area... that is making me wonder if he is also thinking this is not PANDAS for some reason.

 

How long do you think your son has had PANDAS symptoms? Has your son had antibiotics in the past (for any illness), and has he gotten relief of his neuropsychiatric symptoms from them?

 

Best wishes to you as you navigate to finding help for your son.

[Lori Ann]

My "mommy gut" has always been right in the past and it is now telling me that this is not Tourette's or OCD or any other mood disorder. I think I will be more vocal with the doc and express my concerns more clearly.

 

 

 

 

 

 

 

When my son first went to the pediatrician with his behavior changes (before we knew he had strep and PANDAS), she too asked about iron levels and possible anemia because of he very fair skin. Well, it wasn't iron, it was an active strep infection without a sore throat or fever and it was/is PANDAS. Follow your Mommy gut.

[Lori Ann]

Just started some advil this morning to see if there is any difference. Will ask doc for steroid course to see if inflammation is the problem. Thanks for your help! You are all wonderful support!

[EAMom]

Just started some advil this morning to see if there is any difference. Will ask doc for steroid course to see if inflammation is the problem. Thanks for your help! You are all wonderful support!

 

Personally, I would try at least month or 2 of big gun (Augmentin XR or Azith.) antibiotics before doing steroids. That's just me, since I have a concern (no research to back it up!!) that using steroids too early in the game (if infection is still lurking) can make remission harder to achieve in the long run.

 

Also, for us (we've done a burst 2 different times) steroids have never been a huge help. While our dd was on the steroids, she almost seemed worse, then she'd improve 2 weeks later, for about a week.

Edited August 8, 2010 by EAMom

[thereishope]

Also, if you want to do the Cunningham test, steroids should not be taken before or during the time of the test.

[sptcmom]

My DS had decreasing Ferritin ( stored iron) levels. We got our IVIG with Dr K. We spoke to him at length while there. Dr K strongly advised us to stop any iron supplements and to eat iron rich foods instead. He said Iron supplements increase the risk of infections in a child with PANDAS. So we stopped supplements a few weeks before IVIG (as soon as I spoke to Dr K for the 1st time)and have since been doing an iron rich diet. Please do email Dr K again to verify if you like.Iron rich diets can easily be googled and those will give you info on what to add on like vit c rich foods to help iron absorption and what to stay away from like carrots, lots of cjeese etc as vit A and excessive calcium will hinder irron absorption. Also animal (heme) iron is better than vegetarian iron.

[melanie]

Why no carrots?? Danny eats zillions of carrots!!