why NOT antibiotics,waiting on Lyme, why cunningham high

[eljomom]

I am very unsettled after our apt. with Dr. Latimer. I posted how it went, that she seemed very pandas-dx while going over daughter's history, etc. Then after seeing her, and how calm she sat in her office (well, her wingman--8 year old sis--was right next to her, and she was so anxious that she seemed calm) and no tics. Then she said---think it's probably a tourette's disorder---after talking about testing the dog, etc. We are running Igenix....and waiting another 2 weeks. I just read the article someone posted by Leckman, Murphy and one other....and really would like to try abx...I think.

 

Here's the thing---how can the cunningham being 168 NOT be pandas???? Plus she has symptoms---so Cunningham would still be high if PITANDS too, right?? What i guess I don't understand is WHAT MAKES CUNNINGHAM HIGH???

 

Is there an abx to start that would help if it is Lyme in the meantime??

[kimballot]

Some folks have reported on this forum that Dr. Cunningham has seen elevated Cam K with lyme. I don't think that is in any articles at this point.

 

I don't know why Dr. L is waiting on ABX, but I suspect there is a good reason. I know they prefer you be off abx for some of the lyme tests. Perhaps she thought your daughter was calm enough to wait it out until the testing was done? When do you see her again? If it will be a while - Why don't you call her and ask for clarification on the no abx idea?

[eljomom]

well, after seeing my daughter, who seemed "calm" but to me was "paralyzed with anxiety"---she just said that her handwriting and drawing are fine, and no chorea. that you usually see a decline in handwriting...it gets really really bad, etc....

[thereishope]

I really don't have an answer for you about antibiotics. Again, all I can say is my son who is definitely PANDAS experienced no change in hand writing, drew nicely, no tics or chorea. If I had taken him to appt while in exacerbation, I suspect he would sit still unless they tried to do a physical. But he was also 5 years old at the time. I don't know how he would react to a physical during an exacerbation now. If you wish your child to be put on antibiotics while waiting for the Lyme test to be run, I would contact her, express your concern and see what she has to say. Right now, where is she is right now in terms of any symptoms?

Edited November 12, 2010 by Vickie

[PhillyPA]

Why don't you e-mail Dr. Cunningham and ask her? Tell her that your daughter has a score of 168 and you have seen Dr. Latimer. Tell her that Dr. Latimer is doubting a PANDAS diagnosis. Ask her what else could cause a score that high. I am sure that she will say Lyme but maybe something else too. Maybe she will say that in her opinion it is PANDAS. Share whatever info Cunningham gives you with Latimer. Dr. Cunningham will e-mail you back.

 

My son had a score of 161 but he also had chorea, mutism, loss of handwriting, frequent urination, and a host of other symptoms. He is also a patient of Dr. Latimer's.

 

I also think that Latimer wants to rule out Lyme before starting anything.

Edited November 13, 2010 by PhillyPA

[P_Mom]

well, after seeing my daughter, who seemed "calm" but to me was "paralyzed with anxiety"---she just said that her handwriting and drawing are fine, and no chorea. that you usually see a decline in handwriting...it gets really really bad, etc....

 

 

This is all odd to me why Dr. Latimer is saying that because a child is doing well at the appointment...it means no PANDAS.....really odd. Yes, their handwriting CAN get really bad, chorea, etc.....but, not all PANDAS kids and not if not in exacerbation. My sons, also clearly PANDAS (no Lyme here).....were bad, especially my younger son, at one point, but, with proper treatment, they got well. My younger son did have deterioration in handwriting, etc....but, NOT when he saw Latimer. When they saw her, both were doing well.......didn't show much of anything to her, however, based on history she still agreed with the PANDAS diagnosis they had already received. Very odd.....PANDAS kids, well, a lot of them, are not bad all the time..their symptoms wax and wane....doesn't make them not PANDAS if they are doing well..... I would keep pushing if I were you.

 

Oh, I really don't think you will get a clear cut answer from Cunningham on why the CamK is elevated.......MANY pathogens (not just Lyme and strep) can cause a rise.....she is very careful on what she says. She will not diagnosis your child, or, tell you what to do as far as treatment.

Edited November 13, 2010 by P.Mom