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[Debbie1]

We are now 10 days into a steroid burst which Dr. Latimer prescribed for my daughter. My daughter has had neck and eye tics since late August, when she had a sleepover with a cousin. The cousin ended up having strep.

 

By day 7 of the steroid, we saw dramatic improvement. She still had tics, but the severity and frequency were greatly reduced. On day 8, we went down from 3 pills to 2, according to the directions. days 8 and 9 were stable - no improvement from day 7, but no worse either. Then, this afternoon, the tics are worse again. My husband noticed right away when he came home from work.

 

Why would this be happening? She had a clear improvement in that first week. Do I call Dr. Latimer? Do I wait it out?

 

She had a steroid burst once before in December 2008 given by our local neurologist. She was given a high dose for 7 days, then a quick taper. The dose was double what Dr. Latimer prescribes, but for a shorter time frame. After the December burst, she was tic free for six months. Dr. Latimer said it should not matter which way the steroid is administered, we should get the same result.

 

Can anyone give me some advice?

 

Thanks,

Debbie

[EAMom]

So your dd got strep from the cousin....or are you saying the cousin got strep from your dd?

 

Did you culture your dd (was she already on prophylactic abs)? What antibiotics/dose is she on now?

 

I would call Dr. Latimer and let her know what is going on.

[bronxmom2]

Hi, I just wanted to say that I also noticed a slip when my son went from 3 pills to 2 pills. For us it was a return of emotional volatility, and he started shouting instead of talking. I definitely became very disheartened. It seemed to stabilize again about 4 days into the second week (a few days past where you are)...

 

Now he has switched to one pill, I did not notice the same deterioration when he went from two pills to one.... he does seem to be steadily getting better, but it's so hard to tell...

 

I would call if you have concerns. Possibly your daughter can take the higher dose for longer?

[dcmom]

Hi Debbie-

 

At the same time my daughter was tapering down dosage in the steroid burst (still on daily zithromax), her best friend was diagnosed with strep. She had a flare up in symptoms, not horrible, but we definately lost quite a bit of improvement. She did however improve slowly over the next few weeks. I would call Dr Latimer- I think for one child she ended up extending the steroids for a couple of weeks.

 

Good luck,

 

Eileen

[bronxmom2]

yes, she did... she extended it by two weeks, at the end of the taper though. (not for my child)

[Debbie1]

My daughter was on phrophylactic amox (700 mg per day) when she had the sleepover with her cousin back in August. My daughter came home on a Sunday night. That night, her cousin started feeling sick and two days later the cousin tested positive for strep. The Sunday night that my daughter came home, she started complaining that her neck was bothering her, but had no visible neck tics. Two days after we found out that the cousin had strep, the neck tic started. I took my daughter for a throat culture and bloodwork at the time. Throat culture came back negative (but she was on prophylaxis), but titers were elevated.

 

Here's where the story gets tricky. She had two other exacerbations earlier in the summer. The first was at the end of June when her brother had strep. The second time was one day after she came home from camp in July (we don't know where the exposure was at that time, but her antiDNAse titers were on the rise; ASO didn't change). Both times she was put on 10 day courses of antibiotics. In June we used Duricef, In July we used Omnicef. Both times, we saw significant improvement from the antibiotics (75%-90% better), although symptoms were not totally gone before she had another exacerbation. Because her antiDNAse titers were already on the rise, our local neurologist said it was too soon for repeat titers to be relevant.

 

After the August episode, we had titers drawn again, despite what the doctor said, because she needed other bloodwork done anyway. AntiDNASe was up even more, but our doctor at the time said they are irrelevant because they were repeated too soon, and since she is not culturing positive (even though she was on prophlaxis), she doesn't have an active infection. She went on another 10 day round of antibiotics (Duricef again), but this time we saw no improvement. Her prophylaxis was changed to Duricef. She was bad the whole month of September and we went to see Dr. Latimer two weeks ago.

 

Dr. Latimer prescribed a month of steroid and reduced her prophylactic to 500 mg of amoxicillin per day. She did not want her on something stronger. That is what she has been on for the last two weeks. We have an appointment scheduled in November with an ENT practice that has seen many PANDAS patients.

 

I will call Dr. Latimer tomorrow. I just don't understand what is going on.

[dcmom]

Debbie-

 

Dr Latimer didn't really seem to believe that the kids react to someone with strep (while not contracting it). My dd has had three seperate minor episodes (while in a time of mostly remission of symptoms). All three times, her behavoir would increase fairly dramatically, and within a couple of days I would find out a friend, or a classmate she sits near, has strep. These episodes would be very limited, 3 to 7 days- and much less severe than full blown pandas episode. She has always been on prophylactic abs at the time. The episode has never lasted long enough to go to the doc.

 

I have no other explanation for these occurances. Do other kids react to strep without getting it? This is really tough, in these young ages it seems like someone in the class always has it. Could pex (or IVIG) stop this?

 

Keep us posted as to what dr Latimer thinks.... I hope she lengthens your steroid burst....

 

Eilen

[Debbie1]

Thank you for all of your quick replies. It is comforting to know that my daughter is not the only one who has had a setback in week 2. There is still hope that this will work for her. I'll keep you posted on Dr. Latimer's response.

 

Eileen -

 

My pediatrician told me that several PANDAS parents have reported that their kids react when around strep without ever contracting the infection. He does not understand how this happens. In my daughter's case at least, she has rising antiDNAse titers with these episodes, so something is definitely going on with her immune system. I am hoping the ENT can shed some light on how to control these strep reactions. At the moment, we are considered to mild for IVIG/PEX.

[EAMom]

Debbie-

 

Dr Latimer didn't really seem to believe that the kids react to someone with strep (while not contracting it). My dd has had three seperate minor episodes (while in a time of mostly remission of symptoms). All three times, her behavoir would increase fairly dramatically, and within a couple of days I would find out a friend, or a classmate she sits near, has strep. These episodes would be very limited, 3 to 7 days- and much less severe than full blown pandas episode. She has always been on prophylactic abs at the time. The episode has never lasted long enough to go to the doc.

 

I have no other explanation for these occurances. Do other kids react to strep without getting it? This is really tough, in these young ages it seems like someone in the class always has it. Could pex (or IVIG) stop this?

 

Keep us posted as to what dr Latimer thinks.... I hope she lengthens your steroid burst....

 

Eilen

 

Our PANDAS dd definitely reacts to other people having strep! Even on 250mg/day Azith (54 pounds), she reacted when her sister (assymptomatic carrier) was culture positive Nov 08 and Dec 08 and also when I (symptomatic) had strep (positive on rapid) April 09.

 

Dh had contacted Dr. Swedo about our dd...she says she is reacting to COLONIZATION (strep on epithileal cells) with strep. Which is different from INFECTION (which is actual an overwhelming of the immune system, strep in the bloodstream.) Antibiotics can help stop an infection but not colonization.

[sf_mom]

Debbie, my son's case was considered mild and he was still treated with IVIG. His PANDAs score was 124... 106 is normal, he was 11 days post predisone burst which might have lowered the score some. He is 18 days post treatment and I would say 150% improved in areas I didn't realize were symptoms, 98% in relationship to TICs (tic free day today) and about 95% better with regards to mood liability. I'd keep pushing for IVIG as I think the opportunity to jump start her system is big in mild cases.

[Debbie1]

Hi SF Mom,

 

I am so glad to hear your son is doing so well!

 

When you say "his PANDAS score was 124" do you mean on the Cunningham test? We are still waiting for results on that (we did it before starting steroids).

 

You probably posted this information previously, so please forgive me, but did you use Dr. K or another doctor? Were you able to get IVIG covered by insurance for a mild case?

 

My daughter is somewhat better today. Definitely not as bad as last night so I am hoping we are back on the rebound.

 

Debbie

[sf_mom]

Yes, PANDAS score was from Cunningham test but it was post steroid burst. I plan to following Buster's/EAMom lead and retest 7 weeks post IVIG and will post those results. We did use Dr. K and its unclear at this point how much our insurance will cover. We are a PPO, self insured with a $5,000 deductable.... so, I'm assuming not much.

 

I'm sorry but I have problems with the word MILD. Based on our son's baseline, it was severe.... but compared to others on the forum it might be considered MILD. Beside what insurance company is going to be able to determine the difference. If you haven't done immunological testing, I'd got that route and see if you can't get it covered based on PIDD.

 

-Wendy

 

 

 

 

Hi SF Mom,

 

I am so glad to hear your son is doing so well!

 

When you say "his PANDAS score was 124" do you mean on the Cunningham test? We are still waiting for results on that (we did it before starting steroids).

 

You probably posted this information previously, so please forgive me, but did you use Dr. K or another doctor? Were you able to get IVIG covered by insurance for a mild case?

 

My daughter is somewhat better today. Definitely not as bad as last night so I am hoping we are back on the rebound.

 

Debbie

[bronxmom2]

Hi Debbi, I'm glad you're daughter's a little better, I worried about this all night, because it sounds much like my son's experience... a definite dip in improvement after the switch from 3 to 2 pills, then stabilization and further improvement. We are on the third week now, and he is definitely better, stabler, etc.

HOWEVER.

When I was where you are right now (last week), I was totally freaking out and feeling like I was losing my mind, I called Dr. L and explained what was happening... and she authorized the IVIG. She was extremely nice during that call and I cried with gratitude.

Huge, huge relief because I feel this is what he needs, and was skeptical about the steroids all along, though I understood why we were doing them.

 

However I do have the Dr. Cunningham score (yes that's what SFMom was referring to), which for my ds was 160. I doubt she will authorize the IVIG without that number. So perhaps it will take a little patience on your part.

 

They seem to have gotten the IVIG preapproved by the insurance company too, we have a date and everything (Oct. 26)... it all seems too good to be true, I didn't even want to share this information with you because I'm so scared it won't go through somehow, I am holding my breath until this happens.

 

Good luck, hold firm, insist on the treatment that you believe your daughter needs.

[dcmom]

[Debbie, Bronxmom 2-

 

We had the same exact story here. My dd did really well on steroids. But, on the taper down (also exposed to strep) she had a flare in symptoms. It is at that point that we had a follow up with Dr Latimer. She decided to pursue pex for dd. ( We also had Cam Kinase results back at that appt of 161%) We also have been approved by insurance, and are scheduled for October 20th. My dd is actually doing pretty well right now (bracing for a setback post pex).

 

Bronxmom- what made Dr L chose IVIG and not PEX for your child? Just curious?

 

thanks

 

Eileen

[bronxmom2]

I'm don't know, I have wondered a bit, I see that she orders PEX a lot of the time but it wasn't even mentioned for us. I didn't question it because based on what I've read here I think IVIG is the right thing for him too... his issues are mainly behavioral, OCD not tics, emotional volatility, etc... though she did find some chorea-- maybe she thinks that PEX is better for ticcy kids, IVIG for OCD kids?

Good luck with the PEX!!!!

I too am bracing for setbacks.