saw tooth recovery

[mom md]

My son is 5-6 weeks post IVIG and was doing well until about 1 week ago. He started having behavior issues at school(poor impulse control, shouting out rude comments) which we are not seeing at home. This is exactly what we saw last year before we had the diagnosis of PANDAS. I did a rapid strep on him which was negative and feel like we are "turning back the pages" but wanted to see what you all thought. He is supposed to get his next IVIG on March 18th (1mg/kg for 2 days). We have noticed MULTIPLE improvements since the IVIG but will take several steps forward and then some back. I know people have said this is normal but I just want to hear it again.

Thanks,

Claire

[dcmom]

Is it possible he is reacting to strep exposure?

[sf_mom]

I am finding that every time we are having 'flipping of the pages' there has been an exposure to strep. He doesn't necessarily have a full blown infection but is responsive..... its like an allergic reaction. 3 weeks ago he went to school one kid, came home as another... pulled him immediately from school until I could determine what had happened. The following day a little girl in his class was sent home with 104 fever and later confirmed with strep throat. Our sons uptick in symptoms lasted about 48 hours and then he seemed to get better, better than even prior to exposure. Apparently, their reactivity to strep should decrease over time as healing continues.

 

Our son, has been exposed at least six times since his first IVIG in September. We have had 3 larger dose IVIG and can tell his body is finally able to combat exposures.

[mom md]

Did you recheck titers or change antibiotics? He is on azith 250mg with a negative rapid strep.

I am finding that every time we are having 'flipping of the pages' there has been an exposure to strep. He doesn't necessarily have a full blown infection but is responsive..... its like an allergic reaction. 3 weeks ago he went to school one kid, came home as another... pulled him immediately from school until I could determine what had happened. The following day a little girl in his class was sent home with 104 fever and later confirmed with strep throat. Our sons uptick in symptoms lasted about 48 hours and then he seemed to get better, better than even prior to exposure. Apparently, their reactivity to strep should decrease over time as healing continues.

 

Our son, has been exposed at least six times since his first IVIG in September. We have had 3 larger dose IVIG and can tell his body is finally able to combat exposures.

[colleenrn]

MDMom,

 

My kids are on Zithromax 250/day and when they are exposed to strep still have a flareup in PANDAS symptoms.

 

When I know they have had prolonged exposure (slept in the same bed with cousins with strep- did not know cousins had strep at the time) I have increased my older kids (85 lb. and 120 lb.) to 500mg/day for 3-5 days. How much does Carter weigh? My sister's pediatrician puts her 65 lb. and 80 lb. children on 500 of Zith when they have strep and she is a very conservative physician.

 

Also, when my children have strep, their rapid test rarely comes back positive. I have no faith left in rapids. I do them just to see if we can get a positive before waiting for the culture, but never rely on a negative rapid.

 

Good luck with the next IVIG!

 

 

Colleen

[sf_mom]

We do not recheck titers but are more watching symptomatically and tracking exposures. Dr. K typically recommends we up his antibiotic for 14 days when these exposures happen. We've finally gave up after his last IVIG and have been keeping him at the higher dose until he is out of 'the woods.... so to speak' and the winter months have passed. He is on 500 m.g. Azithromycin per day. He was exposed on Feb 3rd, Feb 8th, Feb 26th and March 1st (some of these are exposures were from the same child that was sent to school still sick). We hope to lower his antibiotic slowly starting May 15th. We are also working with a nutritionist that is well versed in high dose probiotic and eliminating toxins. I think this has been very supportive with the higher dose antibiotic and our son has stopped complaining of stomach issues.

 

-Wendy

 

 

 

 

 

Did you recheck titers or change antibiotics? He is on azith 250mg with a negative rapid strep.

I am finding that every time we are having 'flipping of the pages' there has been an exposure to strep. He doesn't necessarily have a full blown infection but is responsive..... its like an allergic reaction. 3 weeks ago he went to school one kid, came home as another... pulled him immediately from school until I could determine what had happened. The following day a little girl in his class was sent home with 104 fever and later confirmed with strep throat. Our sons uptick in symptoms lasted about 48 hours and then he seemed to get better, better than even prior to exposure. Apparently, their reactivity to strep should decrease over time as healing continues.

 

Our son, has been exposed at least six times since his first IVIG in September. We have had 3 larger dose IVIG and can tell his body is finally able to combat exposures.

[bronxmom2]

Hi Claire, as you may remember, my son also did PEX and then IVIG, and the first IVIG made him worse. I think after you've seen the PEX and its immediate direct dramatic results, the IVIG is harder to watch... but I am quite sure you are doing the right thing!

[mom md]

Good point about the dramatic PEX results vs. the more sawtooth IVIG recovery. We tried some behaviorial therapy guidance today and he did great without shouting out. I may up his antibiotics just to be sure. Thanks for all the input. My maternal instinct tells me it is all part of healing but I may up the antibiotic for a while to be sure.

[melanie]

Mom md

 

Are you continuing with the monthly iVs?

 

Melanie

[Suzan]

Claire, I am sorry you are experiencing a regression. I hope the saw tooth recovery and/or exposure to strep is the only culprit. We are struggling very much right now. I don't know if it's the allergy shots or exposure to strep or something else. We see Dr. C on the 22nd and Dr. O in April. I'll be begging for IVIG, new abx and if neither help or if we don't get help, I will stop the allergy shots. If things get any worse, I'll stop them.

 

Susan

[mom md]

We have never done monthly IVIG, just our first in January. We will have our second in two weeks, which is 8 weeks after our last. He was almost perfect for the initial month after the IVIG (with the exception of the initial exacerbation the first week) and he appears perfect at home. The only thing we are seeing are a few issues at school (primarily poor impulse control issues). It definitely fits with the "turning back the pages " description and it appears at about 5 weeks post IVIG which is right around the half-life of the treatment. I did up his azith this morning. I am also going to start researching neurofeedback as well as the brain train program and see if they could help. It makes sense that with any other brain injury you would do some form of rehab.

Susan, I am so sorry you feel like you are slipping backwards. It is so frustrating not to know what the cause is. Typically with weekly allergy shots the immune system is stimulated for about 5 days so you may see if day 6 or 7 you seem to be seeing a little improvement. If you do, it may be the shots stirring up the immune system and symptoms. You also may want to try to get an appointment with Tess Nelson on the books. She is supposed to be "the best" and she told Dr. O she is excited to see us in April. She said she is fascinated with this disease. I will be interested to see what she has to add. I know she books almost 6-9 months out but maybe if you set something up and things get worse Dr. O could try to get you in sooner. (She got us in in 5 months!). As far as I am concerned another opinion is never a bad idea.

I just wish I was a pediatrician and not a ob/gyn. I swear I would close my practice and start treating these kids like Dr. K. I am too tired though to go back and be a resident!

Claire, I am sorry you are experiencing a regression. I hope the saw tooth recovery and/or exposure to strep is the only culprit. We are struggling very much right now. I don't know if it's the allergy shots or exposure to strep or something else. We see Dr. C on the 22nd and Dr. O in April. I'll be begging for IVIG, new abx and if neither help or if we don't get help, I will stop the allergy shots. If things get any worse, I'll stop them.

 

Susan

[Fixit]

Hi Claire, as you may remember, my son also did PEX and then IVIG, and the first IVIG made him worse. I think after you've seen the PEX and its immediate direct dramatic results, the IVIG is harder to watch... but I am quite sure you are doing the right thing!

 

HOw is your boy doing now??

did the twitching stop...

how many weeks post ivig are you??

do you have a next step in the works or just holding tight?

 

i 'm sorry if this is a repeat....why did doc L want to do pex as opposted to other....

why did you pursue ivig as opposed to another pex...

 

thank you!!

[KeithandElizabeth]

Hi Claire:

 

We are now 12 weeks post IVIG's and we are still having bumps, but they do not last as long and the low's are not as low. I do believe in the brain healing aspect of this illness.

 

I feel that we see both bumps in relation to exposures as well as just plain healing bumps. Initially, the bumps could last as long as 4 to 5 days and now we are down to 1 bad day followed by several great days. Dr. Kovacevic did warn us about this, although, I do become paralyzed with every bump.

 

Elizabeth

[mom md]

We are still doing pretty well. I still see bumps though and we are 6 weeks after the second IVIG. Out bumps only last very briefly, sometimes even minutes and seem to be more along the lines of mood swings or anger outbursts. Call it a mother's instinct but I know it is related to the disease and not normal.

We saw a pediatric neurologist lass week (Tess Nelson) who is supposed to be the best. It took us a year to get in. She felt this was an autoimmune basal ganglian syndrome and the PANDAS/SC was a symptom of a bigger issue with his immune system. She felt we might need IVIG every 3-6 months to keep him at baseline and that this was not an isolated strep issue. She also asked about my other children and said it often runs in families. We have been seeing subtle signs in my 6 year old and took him in. His strep culture was negative, ASO was 384. Very interesting.

I keep trying to look at the big picture and not the details to some extent. We are MUCH better than one year ago. Excelling in school and now with some minor impulse issues. I still walk on eggshells because I know it can turn on a dime though. At least I know we are doing something right. He has only hada few REALLY bad days in the last year compared to before when they were all bad. I am afriad though that this new doctor is right. This may be more autoimmune and chronic. I hope she is wrong.

I do think this healing though is very sawtooth. Five steps forward and two back. Very nerve wracking to watch. Hang in there.

Hi Claire:

 

We are now 12 weeks post IVIG's and we are still having bumps, but they do not last as long and the low's are not as low. I do believe in the brain healing aspect of this illness.

 

I feel that we see both bumps in relation to exposures as well as just plain healing bumps. Initially, the bumps could last as long as 4 to 5 days and now we are down to 1 bad day followed by several great days. Dr. Kovacevic did warn us about this, although, I do become paralyzed with every bump.

 

Elizabeth

[T_Mom]

"We saw a pediatric neurologist lass week (Tess Nelson) who is supposed to be the best. It took us a year to get in. She felt this was an autoimmune basal ganglian syndrome and the PANDAS/SC was a symptom of a bigger issue with his immune system. She felt we might need IVIG every 3-6 months to keep him at baseline and that this was not an isolated strep issue. She also asked about my other children and said it often runs in families. We have been seeing subtle signs in my 6 year old and took him in. His strep culture was negative, ASO was 384. Very interesting."

 

Hi Claire--

Tess Nelson sounds wonderful and like another "I recognize Pandas" doctor, where is she? Is she a pediatric neurologist?