Looking for help for my daughter

[AmySLP]

Hi! I cannot thank all of you enough who have provided me with such wonderful knowledge over the past several weeks as I have read so many threads on this forum. I have acted on much of the advice and have many appointments lined up.

 

A brief overview of my daughter's story....

Allison is 4 1/2. Since last August my daughter has been diagnosed with strep via throat culture. For the weeks prior to that she was having tremendous behavioral issues, heightened sensory issues (hyperacusis-inability to withstand noise), and repetitive vaginal touching/itching. For weeks the doctors were treating her for a yeast infection, then a bacterial infection when the Nystatin did not work. THis began while we were at he beach, so the thought was she picked up some kind of bacteria from the water (no one else apparently was affected?). At that time, she had blistering in her inner thigh area. When that blistering would not go away after treatment topically, our pediatrician felt that it might be a staph/strep infection and put her on oral antiobiotics. That seemed to work to cure the blisters/rash. Then about three-four weeks later, the same behavioral changes, repetitive vaginal touching, and sensory issues. To make a long story short, this has been the patterning since that time. She is on oral antibiotics for 10-14 days and then on day 21-30 diagnosed again with strep via throat culture. The odd thing, my daughter has never had strep throat in all this or enlarged tonsils. It is now, in hindsight, that I have discovered what makes me suspect strep each time-it is these behavioral changes etc. Occasionally she also gets the strep rash on her chest.

 

Come December 30th, 2008 something seemed terribly off with Allison( huge neck from enlarged glands, very fatigued, feverish, not responsive). Her pediatrician diagnosed her on the 30th with tonsillitis (for the first time) (tonsils were 3+ size) and of course, she was positive for strep (no surprise, but was not the primary diagnosis). Started on Antiobiotics and worsened over the next 2 days. Jan. 1st 2009-saw covering Pediatrician who immediately said it was likely Mono. Blood testing confirmed that on 1/5/09 with an Epstein Barr Panel. She was on steroids for the swelling and it was during that time that I noticed the eye tics. I can't say that they were present before. The MD said it was a side effect of the steroid, so we stopped that, but they have never gone away. I now suspect that these have been present for some time but that it was the week I took off of work to be home with her for the mono that made me take notice. These eye tics/blinking are now more exagerated and now also involve pulling the corner of her mouth upward as she blinks. During episodes of strep, I have also noticed some vocal tics (somewhere between a throat clear and a cough, but not loud-she barely initiates voicing).

 

Since that time, we have been back to the same pattern with the strep. Two more in Mid-January and then February. I now have her on prophylaxis antiobiotics (the doctor prescribed Amox 400mg 2 tsp daily). This seems to have eliminated all but the facial tics, which are less exagerated at this time.

 

From the pediatrician's standpoint, I have not made the right choice. SHe feels that the answer and the cure is to remove her tonsils. In October and late November, we saw a pediatric ENT (well respected) at Upstate Medical University in Syracuse, NY. He felt that b/c Allison did not have strep throat or enlarged tonsils, it was not warranted to remove the tonsils. The research and his cardiac and immunology colleagues do not recommended this as it is not shown to be effective. Exactly my opinion from all the research and info I had read. We did not pursue this path. My pediatrician completely disagrees with the ENT and myself for not doing the surgery. Since finding this website, I have made an appt. with an immunologist/infectious disease doc. (March 11th) and with a neurologist at Boston Children's Hospital who has PANDAS indicated as an area of interest and research. The ENT is willing to do the tonsillectomy on April 1st if the infectious disease doc recommends it.

 

So here's my question.... On Feb 6th (a day after a new strep dx and approx. six weeks since the last dx. of strep via throat swab) I had the ASO and the other I can't recall the name of (---nase) and my daughter's results just don't make sense. Her ASO was 5 and the other negative (a number was not provided b/c it could not be detected). My understanding is that these titers should be elevated b/c they measure antibodies that should be there in the weeks/months after strep infection. My daughter has had 6-7+ positive rapid strep tests in the last 7 months. Shouldn't she have developed some antibodies and therefore have elevated titers? My pediatrician told me that she can't answer that. I am the one who asked for the titers. She says wait for the immunologist (who I scheduled the appt. with independent of her-no recommendation to pursue anything other than tonsillectomy). Can someone please help me understand these titer results?

 

Amy

[amy s]

Well, in your case with positive cultures, my first thought is laboratory error. But to be honest, titers have always been a mystery to me as many times there seems to be no rhyme or reason as to why it is so high on some kids and not with others. Unless you are willing to subject your child to constant needle sticks in order to show the level trending over time, I don't think they show much. Sometimes in order to prove this diagnosis we have to do just that, though.

 

Welcome to the board. I'm sorry that your child is sick. You will learn a lot hanging around here.

Regards,

amy s

[peglem]

My daughter had chronic strep with only behavioral symptoms (no swollen tonsils, fever, etc) until we put her on phrophilactic abx. Durinr that time her titers were checked 3 times and were low, except for once very slightly elevated ASO. I wonder if the Mono did something to quash your daughter's immune response.

 

We did see an immunologist (who did not know much about PANDAS) and immune testing showed a poor antibody response. My daughter was given a pneumococal vaccine challenge and the first time the immune response was very poor. It was repeated and the second time the response was deemed adequate. We were told that this stimulated her immune system and that she would likely begin fighting off the strep. She didn't.

 

It may also interest you that we did do a tonsillectomy and the chronic strep came back anyway.

 

Here is an article on chronic neuroimmune disease that helped me gain a slight understanding of the immune system and what may be going on here.

http://www.anapsid.org/cnd/diagnosis/cheneyis.html

[Diana]

Yes - and please hang in there - your dd has excellent medical care unlike most of the PANDAS kids- so keep working at it.

I am working with Susan Swedo and some of her colleagues - the gal who "discovered" PANDAS at the NIMH.

 

For PANDAS one needs to see EITHER a postiive strep test OR High ASO Titers or D-NASE. YOU DO NOT NEED BOTH! And even in that there is wiggle room I won't bore you with now. Dr. Swedo had to put up ridiculously strict parameters on the NIMH website cuz she was getting a lot of heat for this "new illness."

 

Given your dd's assault with continued PANDAS episodes, from the 50 parents w/pandas I've talked to - a Tonsilectomy and Adnoidectomy make sense or one of them at least. Strep experts (I can hook you up with a good woman strep expert in NY) - know there are forms of "oxygen hating" strep that lie in the tonsils or other odd places for many years. This can cause Pandas or other related diseases of strep. Doctors won't absolutely recommend it a T&A because - well you just can't out and out tell everyone to take out the tonsils/adnoids. The research has not been extensive enough. I can tell you more privately if you'd like.

 

An MRI may be warranted to I would think. I will contact you in a private email. Take care - you have great doctors it sounds like - she'll get better. diana

[dut]

Our dd has had 2 classic PANDAS episodes, both times her ASO and anti DNase B were low, very low. However, during the second episode we also ran a PANDAS/OCD panel (from Neuroimmunology) and it showed abnormal elevations in strep M proteins and streptozyme but only in her IgM not IgG.. not sure if this skewed the original titers? We were going to go on and do a general immunology panel but we're back to no symptoms for now and are just sick of doctors and needles etc and are letting her have a rest from it all for a bit.

 

I certainly feel that titers in isolation don't tell you much....looking at hers she's not PANDAS but everything else points to it....

[michele]

Welcome and I hope you find great info here. These boards are our saving grace. Remember to document everything with dates and symptoms and timelines. The waxing and waning of symptoms and the saw toothed course of the episodes is what will help you see the pattern of the PANDAS.

 

Diana and DCmom and others,

Will Sweedo give out a list of Dr's to see in different states for the PANDAS? Could I call her?

I read on here DCmom's posting that Sweedo recommended Dr. Perlmutter for her. How do you get to talk to Sweedo personally and get these recommendations.

 

Here in Ohio no Dr's seem to understand or believe in PANDAS they will call it tourettes but not treat the PANDAS only the neuropsychiatric symptoms with meds. I have called many hospitals been seen at three, and been told no we don't treat PANDAS (even when they had their names on PANDAS OCD articles on the Cleveland Clinic website). I was wondering who Sweedo suggests seeing in OH? Dr. D. Gilbert is a neurologist in Cincinnati (six hours away from me) on lots of research articles for PANDAS. I have emailed him but he won't tell me his treatment beliefs for PANDAS. I really am hesitant to go to Chicago to Dr. K because I got burned on that before in going to T Murphy in Florida and she wouldn't treat over the state lines.

 

We just stopped Concerta because the behaviors were worse and vocal tics have come out and he couldn't sleep or eat well on it. Tomorrow back to the psychiatrist . However these Dr's aren't getting anything but my money! I talked to Dr. K and he suggested a steroid burst but no Dr. I have seen will do it. We do have an appointment in Toledo next month with a rheumotologist who said she would treat PANDAS. Maybe she will try the burst but I may drive six hours to find she won't do anything or know anything more then the rest of these Dr's.

 

My son's reaction to the ADHD meds really scared me. His verbal tics and echos have been bad for several days. Even Dr. Murphy suggested ADHD meds like Ritalin and tic medication (Tenex), and she worked with Sweedo on the studies. Also Dr. Murphy said taking out tonsils will not take the PANDAS away. She said with in months the symptoms will return and people are back to her with the same problems.

 

Michele

Yes - and please hang in there - your dd has excellent medical care unlike most of the PANDAS kids- so keep working at it.

I am working with Susan Swedo and some of her colleagues - the gal who "discovered" PANDAS at the NIMH.

 

For PANDAS one needs to see EITHER a postiive strep test OR High ASO Titers or D-NASE. YOU DO NOT NEED BOTH! And even in that there is wiggle room I won't bore you with now. Dr. Swedo had to put up ridiculously strict parameters on the NIMH website cuz she was getting a lot of heat for this "new illness."

 

Given your dd's assault with continued PANDAS episodes, from the 50 parents w/pandas I've talked to - a Tonsilectomy and Adnoidectomy make sense or one of them at least. Strep experts (I can hook you up with a good woman strep expert in NY) - know there are forms of "oxygen hating" strep that lie in the tonsils or other odd places for many years. This can cause Pandas or other related diseases of strep. Doctors won't absolutely recommend it a T&A because - well you just can't out and out tell everyone to take out the tonsils/adnoids. The research has not been extensive enough. I can tell you more privately if you'd like.

 

An MRI may be warranted to I would think. I will contact you in a private email. Take care - you have great doctors it sounds like - she'll get better. diana

[dut]

Diana - you said

 

"For PANDAS one needs to see EITHER a postiive strep test OR High ASO Titers or D-NASE. YOU DO NOT NEED BOTH! And even in that there is wiggle room I won't bore you with now. Dr. Swedo had to put up ridiculously strict parameters on the NIMH website cuz she was getting a lot of heat for this "new illness."

 

would you mind telling me more?

 

Thanks, Danuta.

[EAMom]

Our dd also had low titers (tested twice, 2 and 3 mo. after FEVER/onset of behavior change) in the face of positive step cultures and full blown psychotic PANDAS symptoms (suicidal statements, anorexia nervosa, tics, depression, OCD). Needless to say, we don't bother with titers anymore. Some kids just don't make a lot of ASO or anti-dnase B .

 

The titer issue is confusing (esp. for docs). The NIMH website is a bit misleading on that issue as well. They really need to clarify that you can have PANDAS with low strep titers.

 

Here is some very helpful and well-researched info: http://www.latitudes.org/forums/index.php?...art=#entry25312

(be sure to read both the Aug. 24 and Jan 11 posts)... stuff you can give you doc if necessary.

 

In anycase, do not fret about the low titers numbers. Positive strep tests (cultures or rapid) are all the evidence you need to show that your dd had/has strep.

[Diana]

Diana - you said

 

"For PANDAS one needs to see EITHER a postiive strep test OR High ASO Titers or D-NASE. YOU DO NOT NEED BOTH! And even in that there is wiggle room I won't bore you with now. Dr. Swedo had to put up ridiculously strict parameters on the NIMH website cuz she was getting a lot of heat for this "new illness."

 

would you mind telling me more?

 

Thanks, Danuta.