Update on Pixie :(

[EAMom]

I guess my train of thought is... Why bother to put her through a strep test and another dr appt when Dr K said it doesn't matter. He did not care if she had strep right now or not and didn't even LOOK at her throat when we were there a couple of days ago. We even asked if we needed to be swabbed to see if we were carriers before she started any treatment and he looked like we had 3 heads and said, "No, why? You can't keep her in a bubble!" When we were describing all the behaviors that had been ramping up since ending the steroid treatment, he said, "It doesn't matter WHY she is having these behaviors- the steroids, strep, another infection.. that is in the past."

 

So...?? I guess, I am saying, isn't he the expert? (Not that I inherently trust doctors- oh, don't get me started on THAT!) but if HE doesn't care whether she has strep and isn't willing to put her on ANYTHING until IVIG (his words, not mine) then what good would it do me to have a positive 72 hr culture for her??

 

*I read this outloud to my DH and realized it sounded kind of snarky... not meaning to be at ALL. Just confused what good the KNOWING would do, if we are set to have IVIG on Thurs anyway.. now if we have to wait LONGER, I might push the issue with giving her something NOW to help... but?????

 

Hi Pixiesmommy,

 

I would say I don't agree with Dr. K. on this one. I suspect that if you had been on abs you would have seen the benefit of steroids without the big crash and burn family huge family trauma that you just went through. That is the point of swabbing her, or even if you don't swab (or regardless of the results) having her on abs. But even if you do swab and get a positive, you know all the more to check family members (to see if they are carriers.) If a carrier is in the family that could result in re-exposure, even months down the line, that could cause an issue post-IVIG necessitating a repeat IVIG treatment (no smal deal, esp if you are paying out of pocket for the IVIG!). This is from Swedo's 1999 PEX/IVIG study http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf (I added the bold):

 

At 1 year after treatment, 17 children initially assigned

active treatment were reassessed (plasma exchange, eight;

IVIG, nine). Three children had had a second course of

immunomodulatory therapy in the intervening months.

One child in the plasma-exchange group was retreated with

plasma exchange for a symptom exacerbation 10 weeks

after initial treatment, one was treated with IVIG at 4

months, and one in the IVIG group had a second IVIG

treatment at 2 months. At the time of their symptom

exacerbations, all three children had a history of

streptococcal exposure and increased antistreptococcal

titres despite prescription of oral penicillin prophylaxis.

 

Personally (although I there are no studies to prove this) I also suspect that if a child has a lingering strep infection (perhaps low levels,hiding out in the sinuses) that could potentially cause a failure of IVIG, just as strep exposure post-IVIG could cause a problem. Nobody (at this point) understands completely why IVIG works, so I don't think they can say with certainty a strep infection during/after IVIG isn't going to matter...or that having a recovering PANDAS child exposed to strep isn't going to matter. There are too many unknowns. Perhaps if we were more aggressive with the abs (including using higher doses of abs and more azith.) perhaps the success rate of IVIG would go up from 80% to 98%. We just don't know.

 

And clearly Dr. K, Dr. Latimer, Dr. Swedo etc. aren't all in complete agreement re the correct way to handle PANDAS either...this is where medicine is an art and we are still learning a lot about this disease. Swedo is much more cautious about IVIG but like prophylactic abs. Dr. Latimer seems to lean towards Pex/steroids/abs but doesn't seem to favor Azith.. Dr. K is pro-IVIG and likes Augmentin. I also do know (is it colleen that told me?) that at least one of the original Swedo families put all 4 of their kids on antibiotics after their PANDAS child had IVIG (until she hit puberty) to keep strep out of the household. So, sure, you can't keep your kids in a bubble, but you can sure do your best to keep the strep exposure to a minimum if there is a chance that will enhance the sucess of IVIG and decrease stress on the child/family.

[T_Mom]

I guess my train of thought is... Why bother to put her through a strep test and another dr appt when Dr K said it doesn't matter. He did not care if she had strep right now or not and didn't even LOOK at her throat when we were there a couple of days ago. We even asked if we needed to be swabbed to see if we were carriers before she started any treatment and he looked like we had 3 heads and said, "No, why? You can't keep her in a bubble!" When we were describing all the behaviors that had been ramping up since ending the steroid treatment, he said, "It doesn't matter WHY she is having these behaviors- the steroids, strep, another infection.. that is in the past."

 

So...?? I guess, I am saying, isn't he the expert? (Not that I inherently trust doctors- oh, don't get me started on THAT!) but if HE doesn't care whether she has strep and isn't willing to put her on ANYTHING until IVIG (his words, not mine) then what good would it do me to have a positive 72 hr culture for her??

 

*I read this outloud to my DH and realized it sounded kind of snarky... not meaning to be at ALL. Just confused what good the KNOWING would do, if we are set to have IVIG on Thurs anyway.. now if we have to wait LONGER, I might push the issue with giving her something NOW to help... but?????

 

Hi Pixiesparents--I guess the question in my mind is IF a child were to have strep shouldn't she/he be on antibiotics regardless of getting IVIG within the week? I honestly do not know enough to know, but I'd suggest a call to Dr. K's number this weekend to definitely find out-- Did Dr K know she was saying she had a sore throat? What if she does have strep--would this impact the results?

 

The whole issue of untreated strep may have gotten some of us into this situation in the first place, know what I mean? Is there any problem with giving antibiotics prior to IVIG? Does anybody know? --Colleen? EAMom? -- oops, even as I wrote this EAMom was posting (above). Pixie's parents, you are in our thoughts and prayers as you sort this out. If you get a definitive answer from Dr K I'd be curious to know what he replies-- I guess to be honest, if it were my child I'd just ask him if there is any harm in starting the antibiotics now and go ahead and test for strep just to document.

[pixiesdaddy]

It's 10:40 p.m. - both children have been asleep since 8:30, thankfully.

 

Both Pixiesmommy and I have realized we can barely speak, we're so tired tonight. Actually, Pixie was good today, if incredibly manic. Hyperactive, ideas and words rolling faster than she could think, lots of physicality - swinging really high on the swings, volume really loud, etc.

 

But, she didn't hit anyone or murder anyone today. It was a good day.

 

Actually, she's been okay for two days now. But both of us can tell it's kind of a thin veneer. Nothing has pushed or challenged her, so she hasn't had to deal with frustration for a day or two.

 

Dan

[thereishope]

.

Edited October 18, 2016 by vickie

[thereishope]

.

Edited October 18, 2016 by vickie

[colleenrn]

Pixiesmommy and pixiesdaddy,

 

I will give you my opinion and I will not hold back, but it is my opinion.

 

It is NEVER safe to leave a child or anyone with untreated strep. Based on your daughter's symptoms (bedwetting, nasal soreness, sore throat, screaming) I would be highly suspicious that she has strep right now. While I respect Dr. K, the work he does for PANDAS families, and his knowledge in this area, I 100% disagree with him and I am confused as to why he would tell you that it is irrelevant whether or not she has strep. It is great that you will be getting IVIG, but in the meantime it is imperative to protect your daughter from strep. When a child with PANDAS has untrerated strep, they are a ticking time bomb, b/c at any point their symptoms can go from bad to terrrible. Even in a non-PANDAS child, you never want to let strep go untreated b/c of the possibility of rheumatic fever (causes cardiac problems), glomerulonephritis (causes kidney problems and can be very serious), sepsis (strep enters into bloodstream) and infects entire body and all it's systems.

 

I am NOT in any way trying to scare you, but if I were you I would want to be told these possibilities. I also can't understand why Dr. K would say that she does not need to be on antibiotics prior to IVIG. This whole thing has me very confused, but I truly feel it is in your daughter's best interset to get a 72 hour throat culture done ASAP (do the rapid in case that comes back positive- then you won't have to do the culture, but if rapid is neg. follow up with culture).

 

Good luck and hang in there! I am thinking of you.

Collen

[bronxmom2]

I have also been wondering why she is not on antibiotics.

 

I'm glad she is feeling a little better. I know what it's like to live so precariously with your child. Good luck!

[pixiesmommy]

It is not that I disagree with you... it's just that I can't take her in each time she has symptoms because, well, frankly, she ALWAYS has symptoms. I have not posted our story because it goes back 9 years and it's just too much to type out in one sitting. She has probably had PANDAS from birth or near birth. She complains DAILY of a sore throat (the nose is new, granted,) sore legs, sores in her mouth, tired... she's always irritable, it's always us walking on eggshells. There is no "good" anymore, there is "we survived the day!" and "OMG we almost didn't survive the day!" and that is about it. While she was on the steroids, it was a breath of fresh air. She was not only "easy" to get along with and get through the day with, but she was ENJOYABLE to be around, which is rare. I don't mean to say this like it's nothing, but right now since we are in crisis mode, my emotions are on hold because I can't afford to mourn or weep or any of the other things that I *want* to do!! I'm really not trying to be cold, it's just a coping method for me at this point to get to the facts.

 

Anyway, yes, we have seen her symptoms ramp up in the past few weeks. We tried to get a culture at the ped office but he saw no reason to, Dr K saw no reason to, and taking her to a quick-care place IS an option but the wait there is HOURS because it is a walk-in only and it is full of VERY sick people without insurance who have waited and waited until they absolutely HAVE to see a doctor. That means sitting there in a FILTHY waiting room (believe me here.. I had fleas biting me the one time I had to go for a sinus infection) for hours and hoping we don't get something ELSE while people cough and vomit all around us. Top it all off with the fact that the staff there is horribly mean and my gut tells me they would not do a strep test no matter how we begged (even though we are insured).... arghh!!! THEN add to that the fact that it's the holiday weekend, so we can't get in with her ped (who would do it if we begged, I bet) until Tuesday IF IF IF they have an opening that day....

 

I just feel like I am hitting a brick wall. I'm not intentionally letting my child sit with strep, by any means. We are seeing doctor after doctor and are, quite frankly, exhausted. None of our doctors are even ANYWHERE near each other and we can't get the psych to call us back to save our souls. The therapist is on vacation, though we have a tentative appt next Friday (assuming we are not in IVIG) and add to that the fact that Dr K says he wants her drug-free for the IVIG....???? Again, hitting that wall.

 

We're dosing with Motrin and Benadryl and struggling to get through the day. If there were a magical place where I could go get a strep test, I would be there. There just isn't. Not until Tuesday, at least.

[EAMom]

I wonder if there is some kind of misunderstanding when Dr. K. says he wants her "drug free"...perhaps he didn't really mean "no antibiotics" (just psych. drugs?) As far as I know, all the other kids that have gone to Dr. K. for IVIG have been on antibiotics of some type and he generally recommends Augmentin post IVIG (for at least 1year, although most people do more).

[thereishope]

.

Edited October 18, 2016 by vickie

[colleenrn]

Please don't think that I am implying you are not doing all you can or you are letting her sit with strep b/c that is not my intention at all! It was my mommy mode that kicks in when I read your post. What about emailing Dr. K and hoping he sees it soon and telling him all her PANDAS symptoms are on the increase, along with the physical symptoms (bedwetting and sore throat) and see if he would help you get at least a course of antibiotics. I wonder if somehow he does not think she has strep right now, but if he thought she did, he would treat? I just can't believe that a physician of any type would not treat if it were strep. Could he have misunderstood? I am sorry for what you all are going through!

 

Colleen