Blood test results - now what?

[mom23boys]

My nephew was diagnosed with PANDAS a year or so ago. At the beginning of the school year, my son (9 years old) started exhibiting tics. My husband is a doctor and said transient childhood tics. His pediatrician said the same thing. My son is very type A and had changed schools at the beginning of the year, so much of this I attributed to stress.

 

Many of the tics have come and gone, but he still has an eye blinking tic. No other movement disorders.

 

We have seen some emotional issues (some defiance (very out of character) and other such things which I always chalked up to getting older).

 

However, PANDAS was always in the back of my mind. Our family has a history of rheumatic fever as well.

 

I had my son's blood tested last week (March 18th), and got the result back.

 

His ASO was elevated 466.2

 

His Anti DNase B was elevated 1:1920

 

His throat culture was negative.

 

He did have a strep infection in October (throat culture positive Oct 13th).

 

Are these titers still elevated because of the October infection?

 

What should we do next???

[swim]

My nephew was diagnosed with PANDAS a year or so ago. At the beginning of the school year, my son (9 years old) started exhibiting tics. My husband is a doctor and said transient childhood tics. His pediatrician said the same thing. My son is very type A and had changed schools at the beginning of the year, so much of this I attributed to stress.

 

Many of the tics have come and gone, but he still has an eye blinking tic. No other movement disorders.

 

We have seen some emotional issues (some defiance (very out of character) and other such things which I always chalked up to getting older).

 

However, PANDAS was always in the back of my mind. Our family has a history of rheumatic fever as well.

 

I had my son's blood tested last week (March 18th), and got the result back.

 

His ASO was elevated 466.2

 

His Anti DNase B was elevated 1:1920

 

His throat culture was negative.

 

He did have a strep infection in October (throat culture positive Oct 13th).

 

Are these titers still elevated because of the October infection?

 

What should we do next???

 

I'm not much of an expert on the titer question, so I will leave that to someone else. We were also diagnosed with transient childhood tics in the beginning, but that was not right. We also had emotional issues and sleep problems. PANDAS symptoms get worse over time and with every infection if left untreated. Recovery time also gets longer. I would suggest trying 30 days of antibiotics and see how tics/attitude react. Don't just do 14 days - that will not be long enough. We do 500 mg of keflex twice a day for 11 year old son that is about 62 pounds. When we tried to reduce him to 250 mg twice a day, symptoms came back. He was not ready. We have also had him up to 500 mg keflex 3 times a day to get symptoms under control following exposure. Your situation certainly sounds like PANDAS should be given serious consideration.

[swim]

I'm not much of an expert on the titer question, so I will leave that to someone else. We were also diagnosed with transient childhood tics in the beginning, but that was not right. We also had emotional issues and sleep problems. PANDAS symptoms get worse over time and with every infection if left untreated. Recovery time also gets longer. I would suggest trying 30 days of antibiotics and see how tics/attitude react. Don't just do 14 days - that will not be long enough. We do 500 mg of keflex twice a day for 11 year old son that is about 62 pounds. When we tried to reduce him to 250 mg twice a day, symptoms came back. He was not ready. We have also had him up to 500 mg keflex 3 times a day to get symptoms under control following exposure. Your situation certainly sounds like PANDAS should be given serious consideration.

[smartyjones]

His ASO was elevated 466.2

 

His Anti DNase B was elevated 1:1920

 

His throat culture was negative.

 

mom - i don't want to freak you out but my son is one whose had high titers and i think your son's dnase b is extremely high. i think you need to get with someone who understands pandas to evaluate. i believe most are doing phone consults - you could start there. i also believe there is a strong genetic link in our family so if you have a nephew diagnosed with pandas, to me, that is very suspect.

 

my son's aso was 898 at time of initial onset - well, a few months after when we finally tested. his ped blew it off. we switched peds and the new one said, "you don't get an aso that high over night". he did a ct scan of his sinuses and all 6 cavities were infected. he'd had a strange eye ache 9 months before that i believe to have been sinus trouble and strep 2 years earlier. i believe he probably never really kicked that initial strep infection. he had a neg culture one time during those years when he was reacting very extremely to potty training and the dr thought his throat looked like strep.

 

as far as your husband being an MD, my dad is also. he just kind of shrugged his shoulders and said, "who knows - we don't really test people's strep titers - who knows what any of our's would be." i think you really need to consult with a pandas expert - it's just kind of out of the realm of experience for drs who are not familiar with it.

 

good luck.

[mom23boys]

Thanks for the responses! Just got off the phone with my sister who is mommd on this forum and she is of the firm belief that it may well be PANDAS. Thankfully, she has been through all of this and knows a lot about the disease and who to talk to or see. . . just hoping my husband will get on board as well.

 

Apparently my son's anti Dnase B titer is much higher than my nephew's and Dr. Lattimer told my sister his was in the top 2 percent.

 

I guess the trick now is to find a doctor in Georgia who believes in this disease.

 

Our pediatrician absolutely does not at all, as I found out when I was telling him about my nephew's issues when I was asking about my son's tics.

 

Thankfully the symptoms are very mild now (tics being the only real issue), although that may make it harder to find a doctor to agree that it may be PANDAS. There have been no problems at school at all - to the contrary. No attention issues, no handwriting issues, etc. Hopefully the titers will help in this regard.

[colleenrn]

Did you do a culture or rapid? Do you know how long they grew out the culture?

When he had strep in Oct., what was he on, how much, and for how long. Sometimes the antibiotics and/or doses kids are given is not sufficient to clear the strep.

 

My children have PANDAS and so do my sister's children.

 

It is so unfortunate that your ped does not believe in PANDAS. This is what I would do in your situation. Get him on antibiotics (not amox/pen) for 2 weeks at a treatment dose. Then observe for improvements.

 

His titers are high. The throat is just one of the multitude of places where strep can hide. Does he have any (at all) skin changes? Maybe not your "typical" impetigo, but anything similiar? Does he have any signs of redness around his anus? That is applace strep likes to live. Tghen yu have the gut, which you could test his stool for strep.

 

Perhaps b/c your husband is an MD, he could call Dr Trifiletti himself for guidance.

 

Colleen

[mom23boys]

We did a throat culture (not rapid). No idea how long they grew it out. It was negative.

 

My sister suggested a 250mg per day dosage of azith for 30 days, and then a 5 day steroid boost a couple of weeks in . My husband's partner called in the azith. As you can see, I am not one to watch and wait (husband would have been content to retest in 6 weeks). We will start on that today. In the meantime, I will hopefully get some docs lined up who believe in this disease.

 

We were actually in the process of switching peds as they are no longer preferred under our new insurance, as I found out when I got the bill for my boys flu shots!!!

[colleenrn]

That is great that you got the Zithromax and a good dose. Just observe him closely for any improvements! Good luck.

Colleen