Why would you have a setback 20 d post IVIG?

[FallingApart]

We had our second round of IVIG for DD only 20 days ago. Earlier this week we had 2 sleep episodes that were completely PANDAS. DD woke up at 1 am and was unable togo back to sleep even with the help of Benadryl until 6 am. 2 days later we had the same thing but this time it only lasted for 2 hours. This morning, we were awoken with her pre-IVIG wakeup ritual of 4:30 for the day. This was followed by a rapid return of all of her PANDAS symptoms. Just like last month, the symtoms returned hourly. She is not yet as bad as she was last month, but I am completely devastated over here by today's events.

 

I know there is the topic of turning back the pages. But I feel this is too similar to what happened last month where she needed another round of IVIG. Obviously, right now she doesn't need another round since ith as only been 20 days. But, I feel this is more than just turning back the pages. I'm starting to feel that I am on the wrong forum or need an additional forum to PANDAS. There must be something else going on here. The lifespan of the antibodies is more than 20 days isn't it?

[EAMom]

Have you checked (throat culture) other family members (esp. siblings) to make sure there are no strep carriers?

 

What dose of antibiotics is your dd on? is it possible there is a low grade strep infection hiding out somewhere (sinuses etc.) that isn't being killed off by a lower prophylactic dose?

[thereishope]

But you see improvement with IVIG, right? Even if it doesn't last, it does help for a certain amount of time? Do you see any improvement going on simultaneously with the setback (if that makes sense). I saw that with my son's second PANDAS episode. It was bizzare.

 

I remember you saying you have a dog. Have you tested it? I think you said your girls occassionally dip into the dog food,right? Or was that someone else who said that. We need bios posted on each person in a single thread. My memory isn't as good as it use to be. I think dealing with PANDAS killed some of MY brain cells. And I'm serious about that.

[FallingApart]

I completely agree about the loss of your own brain. Mine isn't functioning as well either.

 

I do understnad your question and yes, she is definitely better even though her symptoms have returned. The rages are very short and the behaviors are manageable, they are all just there. And they take so much effort and energy to manage.

 

We do have a dog and did have him tested. He was negative. I also had some abx that I never used on DD that I gave to the dog just in case. I'm wondering if when we were at the ped's for our regular consultation if she was exposed to strep.

[melanie]

I completely agree about the loss of your own brain. Mine isn't functioning as well either.

 

I do understnad your question and yes, she is definitely better even though her symptoms have returned. The rages are very short and the behaviors are manageable, they are all just there. And they take so much effort and energy to manage.

 

We do have a dog and did have him tested. He was negative. I also had some abx that I never used on DD that I gave to the dog just in case. I'm wondering if when we were at the ped's for our regular consultation if she was exposed to strep.

 

 

were about 20 days also 1st IVIG some good days and some ok days My dog is sick and on antibiotics Im going to get a strep test in the am cause my throat is feeling weird danny has allergys daughter has a cold Danny was tic free for about 5 days they are alot less but back non the less DOes it get better or not?

[T_Mom]

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[T_Mom]

We had our second round of IVIG for DD only 20 days ago. Earlier this week we had 2 sleep episodes that were completely PANDAS. DD woke up at 1 am and was unable togo back to sleep even with the help of Benadryl until 6 am. 2 days later we had the same thing but this time it only lasted for 2 hours. This morning, we were awoken with her pre-IVIG wakeup ritual of 4:30 for the day. This was followed by a rapid return of all of her PANDAS symptoms. Just like last month, the symtoms returned hourly. She is not yet as bad as she was last month, but I am completely devastated over here by today's events.

 

I know there is the topic of turning back the pages. But I feel this is too similar to what happened last month where she needed another round of IVIG. Obviously, right now she doesn't need another round since ith as only been 20 days. But, I feel this is more than just turning back the pages. I'm starting to feel that I am on the wrong forum or need an additional forum to PANDAS. There must be something else going on here. The lifespan of the antibodies is more than 20 days isn't it?

 

Hi--I am so sorry this post-IVIG time has been up and down.

 

Is your daughter on full strength antibiotics right now? I can't help wondering if that would be worth a try.

[thereishope]

I hate the peds' office. There are times when I feel maybe he needs to go but I need to weigh if he'll be exposed to something.

 

As a reminder, adults need to request cultures too. My husband's rapid came back negative. He demanded a culture (that they did not want to do) and that came back +.

 

Also simple things like cleaning stuffed animals they sleep with is important.

[FallingApart]

So, an update is that yesterday was better than Saturday. Not perfect, but better. I will certainly take better!!! As long as we don't go downhill, I can probably handle it.

 

Yes, she is on full strnght abx. But a question there. The ped said she should do 3 days of Zithromax and that is equal to one full dose. Is that accurate? Or should we do more?

 

That is a good call on the animals. I am pretty good about washing them, but will gather them all again today and do them, just in case.

[T_Mom]

So, an update is that yesterday was better than Saturday. Not perfect, but better. I will certainly take better!!! As long as we don't go downhill, I can probably handle it.

 

Yes, she is on full strnght abx. But a question there. The ped said she should do 3 days of Zithromax and that is equal to one full dose. Is that accurate? Or should we do more?

 

That is a good call on the animals. I am pretty good about washing them, but will gather them all again today and do them, just in case.

 

 

 

Was it "only" 3 days of Zithro? ...or is that a bump-up within a month or more of antibiotic full strength treatment???

 

We are seeing good holding with full strength antibiotics long term.

[FallingApart]

She is on 200mg of Zithromax twice/week as a preventetive abx. The ped said to give her 1 full dose, which would be 3 days, as an additional.

[EAMom]

She is on 200mg of Zithromax twice/week as a preventetive abx. The ped said to give her 1 full dose, which would be 3 days, as an additional.

 

My dd is getting 250mg/day of Azith (now 54 pounds, was 43 when she started at that dose). How much does your dd weigh? I would vote for 200-250mg/day every single day. IMO you ped is being way too conservative in his dosing.

[FallingApart]

Very interesting- DD weighs 41 lbs.

 

EA Mom, didn't your DD just do IVIG as well? How long will she be on this dose for? My ped is open to listening to whatever I suggest. I also have plenty of meds to just start giving daily meds to DD. But, our ped said that the half life or the shelf life or whatever it is called-the time it stays in the body to fight off an infection is 3 weeks. So she said that DD's body is protected from infection for 3 weeks after taking a dose. Now, she did say this several months ago before we really knew exactly what we were dealing with.

 

I'm happy to up DD's meds to every day. I'd love more input from all of you.

[T_Mom]

In our case we find that full strength antibiotics daily is holding her steady--there is NO doubt in our d that antibiotics as a treatment has been KEY.

As EAMom has pointed out before--it may be an anti-inflammatory and/or immunomodulatory effect and that may be the key here--

 

With our daughter, she was on a prophylactic dose when all her symptoms ramped sky-high last December.

We upped it to full strength January 3rd and has worked ever since and she is still on it. Seeing Sammy I am reticent to change a thing--

 

Our daughter takes 500mg of Amoxicillan 2 times a day so a total of 1000mg-- Weighs 95 pounds.

To us this was a very benign thing to try--compared to what she was going through--

[EAMom]

there are a few possibilities:

1) there may be strep hiding out in the body that isn't being wiped out by lower prophylactic doses of antibiotics

2) the higher doses are immune-modulating

3) IMO PANDAS kids don't seem to have a "normal" immune system against strep, so you can't assume their immune system is doing much to fight off a strep infection. So, perhaps even the treatment level doses aren't always enough if there is strep hiding out in the body somewhere. The antibiotics have to do more of the work, vs. the immune system plus antibiotics in a normal kid.

 

This seems to have held true with Sammy (Saving Sammy)...he responded to long term high doses of Augmentin.

 

(my theory) I also believe if there is exposure/infection/colonization with strep, that can cause a set-back post IVIG or even a failure for it to work long term. In the 1999 lancet study, there were a few Swedo kids that had to have repeat IVIG or pex just because they were exposed to strep. They didn't actually get full-blown infections (they were on pen prophylaxisis).

 

Yes, my dd had IVIG in August 09. She's been on Azith. 250mg/day since June 08. Over the course of last year we were seeing a "baseline change" and exacerbations (although nothing compared to the ###### of Sping 08) with strep exposure (when family member were positive) and with other illnesses (fifth's, the flu) so we decided it was time to do IVIG. I think it is too early to tell how well it worked. Overall she is doing pretty well, definitely some PANDAS-sy moments (anger, irritibility, anxiety) but overall pretty good. She hasn't had any illnesses or known strep exposure since IVIG. 1/4 of her class came down with the flu at the beginning of the year but she was fine (she already likely had h1n1 in June). In about 6-12 mo., if all is doing well, we might try dropping her azith. down to 125mg/day...at least that is my plan. My dd might also be a more severe case...during an exacerbation her CaM kinase ll was 253%...the highest Dr. Cunningham has ever seen.

 

Also, don't forget to change toothbrushes and toothpaste!