Really Confused

[cara615]

I just found a "leading PANDAS specialist" according to the PANDAS Network website, here in Atlanta. i called and spoke with his nurse. i told her my story. She says it sounds completely like PANDAS. I felt such relief speaking with her. My anxiety levels have been through the roof lately. If our current holistic MD does not get on board with a PANDAS dx then I am going to see this new doctor. He is a psychiatrist (which is odd?) but is very up to date and has a lot of success treating PANDAS here in Atlanta. I would prefer to stick with the holistic MD but if she is going to get all hung up on rising titres then I may need to go elsewhere.

 

I don't even understand the point of checking titres when you have a positive STREP test in hand, right?

[peglem]

Right. Hope you find what you need. Seems like a lot of people are getting hung up on those darn titers.

[cara615]

I emailed Dr. Swedo and one of her clinicians, Paul Grant emailed me back. I then called him to chat with him and we spoke for a bit. He agrees that what i am dealing with very well could be PANDAS. But according to him and the NIH there is no definitive test and its only trial and error with the abx. He thinks that if we see improvement with the abx that i should get my son on prophylactic abx. Paul was willing to talk to my doctor if she disagrees. I thought that was very nice of him and promised I would follow up with him in 20 days after i finish the amoxi and cephalexin.

 

My son's teacher has been keeping an eye on his tics. She said they were more frequent on Friday but still consistent throughout the day today. right now his tic of choice is a loud "eh". Its like fingernails on a chalkboard for me! But I think we may be heading in the right direction. Very very small improvements as the days go on.

[JoyBop]

I would do the same. Finish one then take the other.

[LNN]

I was actually thinking switch to the stronger one first and then finish up the amox. No sense letting the buggers survive while you finish the amox. JMO

[cara615]

Interesting point! if it doesn't matter then I will do it that way!

[T_Anna]

Go with the stronger abx. Why mess with the amoxicillin unless it is giving you a real improvement.

 

T.Anna

[cara615]

Just want opinions here. If my son's symptoms get better on the antibiotics can I be sure its PANDAS?

[nicklemama]

PANDAS is a clinical diagnosis. There is no one such 'test'. It's the bigger picture of many symptoms and behaviors. A child getting better on abx is one such clue. You really need a doctor who understands PANDAS to make the determination but I'd be inclined to say if symptoms get better on abx that's definitely pointing in the direction if PANDAS/PANS.

[rowingmom]

PANDAS is a clinical diagnosis. There is no one such 'test'. It's the bigger picture of many symptoms and behaviors. A child getting better on abx is one such clue. You really need a doctor who understands PANDAS to make the determination but I'd be inclined to say if symptoms get better on abx that's definitely pointing in the direction if PANDAS/PANS.

 

And the antibiotic that finally gives some resolution is a clue as well. If strep abx aren't working after some time, look for different infection(s) that may be causing the PANS/PANDAS reaction. DD tested positive for bartonella, but treatment for cysts/protozoa is what gave her lasting improvement. That along with MTHFR support.

 

Medicine hasn't gotten to the point yet where all infections can be properly diagnosed. Doctors are only now figuring out that gut bacteria are a very important piece of the immune system.

 

Medicine isn't as advanced as we would like to think it is. The key is to find resolution not the exact cause, which could be any combination of genetics, gut health, immune status, toxic load (pesticides, heavy metals, EMFs) and infection.

[Mayzoo]

I have not read all the responses yet, but wanted to mention my daughter has very low titers even when she had a confirmed strep infection for almost 60 straight days (positive rapid test every ten days). Her titers were ASO 6 and Anti-Dnaase 95. They never rose. In testing her immune system, we found she has a primary immune deficiency that explains no rise in titers.

 

The titers are a gauge if high, but not concrete evidence of anything by themselves if they are low.

[Mayzoo]

I emailed Dr. Swedo and one of her clinicians, Paul Grant emailed me back. I then called him to chat with him and we spoke for a bit. He agrees that what i am dealing with very well could be PANDAS. But according to him and the NIH there is no definitive test and its only trial and error with the abx. He thinks that if we see improvement with the abx that i should get my son on prophylactic abx. Paul was willing to talk to my doctor if she disagrees. I thought that was very nice of him and promised I would follow up with him in 20 days after i finish the amoxi and cephalexin.

 

My son's teacher has been keeping an eye on his tics. She said they were more frequent on Friday but still consistent throughout the day today. right now his tic of choice is a loud "eh". Its like fingernails on a chalkboard for me! But I think we may be heading in the right direction. Very very small improvements as the days go on.

 

My daughter has a loud vocal tic that I call a "holler". It is just short of a scream of the sound AAAAAHHHHH. It comes and goes and may be gone for weeks to months at a time. My kiddo is verbally delayed.

 

One thing that has helped me cope with it is that about a year ago she began begging me to make it go away. I was a bit baffled why it bother her so much since she was the one making the noise after all. Then I started to ponder at great length, how would I feel if I frequently lost control of my body and it started moving or saying things I could no longer control? As if someone else had taken over my body. And then I pondered, how much more upsetting would this be if I was young enough to not understand at all what was even happening to me. The more I pondered this, the more I realized how very disturbing this tic disorder can be for the person experiencing it and that this is truly beyond her control as who would choose this? Knowing deep down this is out of her control and it really bothers her, helps me cope since what I have to go through is minor compared to what she goes through. We always have generic excedrin on hand to help me cope as well .

 

Now when kiddo kiddo asks about the vocal tic, I tell her sometimes it comes to "visit" her and other times it is "visiting" another little girl or boy. She then knows that she is not the only one with this issue, and I try to make it out like "no big deal" either way. When it is here, it is here. When it is gone, that is great too , but I assure her I love her either way and it is no big deal.

Edited November 19, 2013 by Mayzoo

[cara615]

We switched my son to the cephalexin last night (from the amoxi) and I saw a slight increase in tics. Could it be that its a stronger abx and it killing off the STREP more effectively thus an increase in tics?

 

I don't want to freak out because slowly but surely he was improving on the amoxi. Now we switch to something stronger and we take a little step back.

 

Any thoughts?

[qannie47]

Hold tight...When new to this disorder, I made lots of changes rapidly anytime I saw a negative response. This caused a lot of confusion for me, and in the end made it difficult to get a good "read" on the situation. Allow some time to pass before making any quick changes. Even when on the right course, you will still experience good days/ bad days....The difficult part is discerning what is just a "quirk" that comes with this disorder, and what is a red flag that requires attention/action. Time will lend itself to that. One thing that I have learned over time, is that it is impossible to make perfect judgement calls 100% of the time. It takes time to figure things out for your unique child. The good news is that the sky does not fall with the wrong call...What is wronged....can always be righted....I share this to give you some confidence and to lessen your stress level. It was my constant "Am I doing the right thing?", that just drove me crazy.....

[cara615]

Thank you qannie47 - I know, big picture, big picture. I am so mired down in the minutia right now, its actually aging me. I look about 5 years older than I did last year. Its very sad.

 

But the good news is that my son is improving. I was all scared yesterday because I saw an increase in tics after the new abx was given but when I spoke to his teacher she told me he was MUCH better in school than the day before. So its been a slow and steady improvement and it keeps on going.

 

We should have blood tests for titres back by Friday (Mon the latest) and we will know more then. Our regular pediatrician is willing to prescribe more abx if we feel we need it! How wonderful is that? I am trying to get her to go to the conference here in Atlanta in Feb.

 

I signed up for the conference with the woman I met the other day who has a PANDAS son in 5th grade and a son in my son's class. We are going to go together.

 

I finally feel like there is HOPE for us.