15 weeks post ivig

[greeneyes48072]

I must admit, I have not been checking in very often at all. I'm a still drained, so I am just going to copy and paste the update I just sent Dr K and my local ped at the 13 week mark. I still hope that maybe it's just taking longer for him, but my heart breaks that even at this point it has seemed not to work on the tics...

 

Our one week follow up with Dr. Kovacevic:

 

Sunday-tics less, in good mood, only visible tics were a nose sniffle and squeak/asthma like gasp. In good mood, but fairly hyper.

 

Monday-tics even less, only a nose sniffle this day. Still in good mood, still hyper.

 

Tuesday-tics increased, yelling/loud talking tic returned. Not so hyper, but kind of a nasty attitude.

 

Wednesday-tics still increased, still has nose sniffle, squeak/gasp and yelling/loud talking. Still has bad attitude.

 

Thursday-tics still increased, still has all three, sniffle, squeak/gasp, yelling. Still has bad attitude.

 

Friday-nose sniffle has stopped, but still has the squeak/asthma like gasp and yelling/loud talking. Also saw a few mouth opening tics. Still has bad attitude.

 

Saturday-so far (as of 11am) still has squeak/asthma like gasp and yelling/loud talking. No sniffle tic seen since Thursday. Have not seen mouth opening tic yet, but only been awake three hours so far. Not sure about attitude yet, no defiant behavior yet today...

 

One month follow up:

 

As of today, Sunday 7-26-09, he still has the yelling/loud talking tic. It pretty much starts first thing in the morning. Have not seen the nose sniffle or the gasp like tic in about a week. He seems to be having a slight eye tic, but cannot tell for sure, not happening often. His mood is still irritable and he is still very emotional, easily brought to tears. Eyes to not appear very dilated, but not sure how bad they were before (hard to notice with his thick glasses). He is still having trouble falling asleep and afraid to sleep alone. He is not urinating more than usual. We are really hoping to see a reduction with the yelling tic, as it is upsetting him. He is on all vitamins and azithromycin as ordered.

 

Three month follow up:

 

The first four to five weeks post IVIG he had a blow up of his tics. Through week five to six they were changing daily and finally settled down to just a nose sniffle and occasional yell outburst and facial grimace. That lasted for about four weeks (almost symptom free these four weeks), then in the 10th week post IVIG his yelling tic started showing up a few times at night. Then by the 11th week he was fully blown up with his yelling tic, his nose sniffle was back and a physical tic where he would shrug, looking as if he was trying to adjust his shirt was pretty constant. This lasted constant, all day long through week 12 and just now, at the end of the 13th week things have settled down. The yelling tic is completely gone, but he still has an occasional nose sniffle, facial grimace and shrug...I would say not more than a few throughout the day. As far as behavior, his mood has been better, he currently loves school (he hated it last year), even wants to go to latchkey early to play with the other kids. Bed time is better, he needed a night light for awhile and it could take up to two hours for him to fall to sleep...now he has no problem sleeping in his own bed, in the dark (no night light needed) and falls asleep in 15-30 minutes. During his 11th week blow up though, his pupils did appear larger...but I'm not good at rating that.

 

Week 14 showed a flare up yet again. His yelling tic was back again, all day long from the moment he woke up. Prior to IVIG his tics would be quiet in the morning and get worse as the day progressed. Now they started as soon as he wakes. He also has facial tics, multiple now, some head shaking as well, and looks like some chorea arm movements. These continued constant and now at week 15 the yelling tic is slowing again, but since it only left for a week the last time, I really doubt it will stay gone....

[KeithandElizabeth]

I am so sorry you are going through this stress right now. Have you thought about increasing the Augmentin like Worried Dad did? Have you checked for strep?? I would check his ASO titers as well? Did you do the immunological work up? Maybe you will be one of the families that needs additional IVIG?

 

Keep in mind that whether it be additional IVIG or higher dose antibiotics, there is so much hope!!!!

[faith]

wow, sorry, that certainly is discouraging. . the vocal tic you describe sounds like what my son has. did he have that prior to embarking on this protocol? did the abx seem to help that at all prior to this IVIG? is this the first one? I know you are drained of all this, but anything you think might be going on, please let us know. maybe things will lighten up at the eleventh hour. good luck and praying for you.

 

Faith

[EAMom]

What dose of antibotic is your son on?

[greeneyes48072]

I know there have been a lot of new faces since I was on this forum daily. I will copy and paste our history for you guys, since a lot of you were not here back then. Yes he did have the yelling tic prior to IVIG,but it would not start as soon as he woke up...it would develop as the day passed. He did not have any issues prior to his strep infection (though we believe the damage started after his second to last step infection, he had a throat clearing thing that we contributed to allergies, but in hindsight, think it was a minor tic). He is currently on 1000mg of azith weekly, 500mg Mon/500mg Thurs-Dr's K's protocol. He is allergic to penn and sulfa. Prior to the IVIG the antibiotics did not help, we had him on them daily for a month. The only thing that showed temporary improvement was the steroid burst, but when we tried to do it again, it lost it's effect. We did the IVIG in chicago with Dr. K on 6-26 and 6-27. Our history below...

 

 

 

Son Age, 7(now 8) Onset 11/28/08

Michigan

 

Child gets strep about once a year (as does the mother).

 

Positive rapid strep test was done on 11-26-08.

 

Tics started on 11-28-08 , but not completely apparent until 11-30-08 . Child never had tics prior to these dates.

 

-at this point tics were verbal only and consisted of a cyclical routine of saying “jeez”, then clucking his tongue and clearing his throat. There was also an episode of squeaking, which caused difficulty breathing (not to mention panic), resulting in a trip to the ER.

 

Child taken to Children’s Hospital-Detroit 11-30-08-bloodwork done, advised by staff that the results were normal (still attempting to get the numbers). Dr (child neurologist) refused to discuss the possibility of PANDAS and would only mention Tourettes and could not see the child again for 8 weeks.

 

Appointment made with a different pediatric neurologist out of Ann Arbor for 12-9-08 . Same result, didn’t seem to believe in PANDAS, though he knew of it, and prescribed Tenex (typical Tourettes Rx).

-by this appointment motor tics developed, head shaking, and super hyper activity.

 

The tenex made his tics much worse, so bad he could barely get through the day. The next day an email was sent to Dr. K with his symptoms thus far and he indicated that it did indeed sound like PANDAS. This email was forwarded to the Ann Arbor neurologist along with being advised that the Tenex was making it worse. His response was “you are obviously going to do what you want against medical advice”…the search for a new doctor continued.

 

The child’s regular pediatrician was contacted to request a steroid burst. Request was denied and response was similar to that of the Ann Arbor doctor…looks like a new pediatrician would be needed as well…

 

On 12-11-09 child met with current pediatrician. He confirmed that it appeared to be PANDAS and also explained a similar disorder Sydenham’s Chorea. He prescribed Klonopin that same date along with Bactrim as a prophylactic. He started him at .005mg a day to start, then increased to .01mg a day. After a few days at the .01mg a day his tics increased yet again. The Klonopin was discontinued and the tics reduced back to their starting frequency.

 

On 12-23-08 he started a 6 day methylprednisolone steroid pack. On 12-27-08 an 80% reduction was seen. Improvement continued for approximately a week and a half. Tics then starting returning to higher/original frequency.

 

On 1-6-09 he was started back on 4mg of methylprednisolone in an attempt to reduce the tics enough to get him through school. Tics reduced by 90% after first day of use. The effect of the steroid became ineffective after about a week and a half.

 

On 1-14-09 child reported trouble breathing and it was considered a possible allergic reaction to the Bactrim (sulfa). He was removed from the Bactrim and put on Clarithromycin. Tics continued to increase.

 

On 1-23-09 he was removed from the steroid and clarithromycin and was put on a full 6 days dose of Azithromycin, with a preventative daily dose of 250mg a day thereafter.

-first week no reduction of tics, but an improvement in mood and ability to fall asleep.

 

-as of 2-8-09 , reduction in verbal tics, but continues to have motor tics(currently head turning and mouth opening). Since 1-23, he also started to display facial tics along with temporary inability to use his vocal cords (duration a couple hours) which has occurred a few times. Child will continue on the Azithromycin for now.

 

(we did only azith from that time up until the IVIG, with no improvements)

 

***Side notes: In hindsight, onset may have occurred after a strep infection in 12/07. Child started to show trouble sleeping and a fear of the dark. Also had some excessive throat clearing, which was thought to be related to allergy season.

 

Possible Genetic Family Connection: Mother has been getting strep at least once a year, all through childhood and adulthood. Also has trichotellomania which started around the age of six or seven. Was also hospitalized at the age of 4 during a strep infection due to strange delirious like behavior. Could this have been PANDAS as well??

[Worried_Dad]

So sorry, greeneyes... we can totally relate to that drained, desperate feeling post-IVIG when things have stagnated or even seem to be going backward! Us Michiganders need to stick together, eh?

 

Can't remember if you and I exchanged posts or PMs about this before, but have you tried Dr. Harry Chugani at Children's in Detroit? I've heard that his colleagues in the ped neuro dept there aren't very receptive, but he seems to be different. Our son did a PET scan study with him in March 2008 (showed inflammation in basal ganglia). Never really did treatment with him (he's 3+ hours away), but he was awesome about responding to e-mails and personally intervened to get us an appt with our local ped neuro dept (in SW MI). He also advised us via e-mail that he would recommend 3-4 IVIG infusions for kids with severe symptoms like our son's. I know that Mustang Carole has raved about how helpful and open-minded he has been in treating her son.

 

Also, I just posted about the apparent effect we've seen (after slow, discouraging progress since 2 more rounds of full-dose IVIG with Dr. K this summer) from trying "Saving Sammy" Maloney mega-dose of augmentin. ( http://www.latitudes.org/forums/index.php?...ost&p=40568 ) It's still early days for us, but it might be worth a try for your son, too?

 

Wish I had better advice. I still wonder if some of these kids need monthly IVIG infusions for a while to totally overcome PANDAS. (SF Mom posted about a Dr. K patient who had monthly infusions for about a year before he finally reached that "conversion event" and symptoms resolved.) For us, though, we had to pay up-front again for the 2 rounds this summer, so we just can't afford it.

 

Best of luck. Feel free to PM me if I can help in any other way.

[greeneyes48072]

Yes, you were actually one of the first people who contacted me back when we started down this road. It was this forum that really kept me going when all this started. I check in on your posts when I wander in, your story breaks my heart so much. Our trip down this road doesn't even compare to yours. We also had to pre pay, but have rec'd about 75% back so far. We have already had multiple bad experiences with Children's, so we are done with them. Dr. K is the best, and is good about working with us via email, so I am comfortable with that. If we need to do another round, we will try to do it local, but you know darn well I will make sure it is exactley the same, right down to the brand of the IG and the use of saline before and after the infusion. Though before that I would think we would try an increase in his antibiotics or try another steroid burst...I hope things go well for you guys, I know it was getting really hard...

[Worried_Dad]

Oh, okay, glad you have a support system with Dr. K! And that sucks about Children's. It baffles me how one doctor in a dept can be excellent, open-minded, and completely accept PANDAS as real, while all of his colleagues in the same dept can be utterly close-minded. And Dr. C is head of the dept there - you'd think other docs would follow his lead! It's like they never compare notes....

 

FYI: just got an e-mail response from Dr. K to our 3-month status update. He actually wants to increase our son's daily augmentin dose now, from 1750 mg to 2000 mg (same daily dose as Sammy Maloney)! I'm supposed to have our pharmacy call his office on Monday.

 

So it appears he's open to this approach when things aren't progressing. You might want to bounce this off him, too.

 

Good luck!!!

 

 

Yes, you were actually one of the first people who contacted me back when we started down this road. It was this forum that really kept me going when all this started. I check in on your posts when I wander in, your story breaks my heart so much. Our trip down this road doesn't even compare to yours. We also had to pre pay, but have rec'd about 75% back so far. We have already had multiple bad experiences with Children's, so we are done with them. Dr. K is the best, and is good about working with us via email, so I am comfortable with that. If we need to do another round, we will try to do it local, but you know darn well I will make sure it is exactley the same, right down to the brand of the IG and the use of saline before and after the infusion. Though before that I would think we would try an increase in his antibiotics or try another steroid burst...I hope things go well for you guys, I know it was getting really hard...

[dcmom]

Worried dad- I am interested in the Augmentin dosing. Can you tell me what your son is on- I saw in another post- but do you know is he at a treatment dose for his age/size, or is it higher? (my dd is little- 36lbs- so I am wondering what type of dose that would be)

 

I hope you have the same results as Saving Sammy!

[Worried_Dad]

Hi, DCMom:

 

My son is 13 now and weighs about 105 lbs. He has been on 500 mg daily augmentin for prophylaxis (per Dr. K) since Sept 2008. That dose didn't work. Even after IVIG in Oct 2008, our son had 2 exacerbations (mini one in Jan, major one in March) while on that dose. His recent ASO titer was double what it was last Feb (before the "exacerbation from Hades"), so it seems apparent that strep A did him in again despite the abx.

 

Dr. K agreed to try an increased dose (875 mg augmentin twice daily, total of 1750 mg) for 2 weeks. Because it appears to be helping, he now wants to try upping the dose again (1000 mg twice daily, total of 2000 mg) for another month. This is the same dose Sammy Maloney took for a year. (Sammy was almost the same age and weight as our son at that time.) As I understand it, this would be considered a "mega dose" at the upper limit for kids this age and weight? (Maybe somebody with more abx expertise can chime in on that one?)

 

Hope that helps. We'll keep ya posted!

 

 

Worried dad- I am interested in the Augmentin dosing. Can you tell me what your son is on- I saw in another post- but do you know is he at a treatment dose for his age/size, or is it higher? (my dd is little- 36lbs- so I am wondering what type of dose that would be)

 

I hope you have the same results as Saving Sammy!

[faith]

worried dad,

so your child is one of the kids that DOES show high ASO titers? also, the strep after IVIG--do you mean he was exposed to it or he got it? Is he one that also shows outward symptoms of strept or does not?

 

thanks, some of these things may be clues to which kids respond better to things like abx or the IVIG and which ones have a rocky time.

 

Faith

[Worried_Dad]

Hmmm... wish I had a simple answer to that one.

 

Our son definitely shows a rise in ASO titer following exacerbations. Whether it's "high" or not depends on whom you ask. When our son first became ill, he was diagnosed with ARF and SC based on an ASO titer that came back from the lab as "off the scale." Unfortunately, that lab usually tests adults and considered anything above 200 to be off the scale. So we have no way of knowing whether our son's titer was 201 or 1201. As a result, many specialists we saw dismissed his 1st 2 elevated ASO titers because some medical resources consider anything up to 330 to be "normal" for a child our son's age and we could not prove that it was over 330.

 

His titer did come down into the 130-140 range between exacerbations and went above 200 following exacerbations, so the trend seems convincing to us... but not to many of the local docs we've seen. Neither was the PET scan, nor the Cunningham blood test result. Frankly, sometimes it seems like nothing will convince a "PANDAS skeptic."

 

Anyway, I've seen other posters point out that with ASO and Anti DNAse, it's the trend that matters more than the absolute number. So in that sense, I think our son follows the pattern described by Dr. Swedo in the early days.

 

As far as strep or symptoms - our son has mostly been out of school for 2 years so is only exposed to what his brothers bring home. We don't know that he was exposed to strep in Jan or March, and he doesn't show classic strep symptoms (no sore throat); we only have the indirect evidence of the rising ASO titers (and the behaviors). In January he was actually back at school (after 1st IVIG, we got him back to school for about a month) when he came home and said he felt "hot, sweaty, nauseous" right before the Jan exacerbation. Didn't do a throat culture then because our family doc said the augmentin would "skew the result." The major March exacerbation seemed to hit after he got an upper respiratory infection I brought home from work. Nobody in our family had a known case of strep, and the rest of us all cultured negative (tested the whole family as a precaution). Our PANDAS son's throat culture in May was also negative (he's never had a positive throat culture).

 

Sigh. Nothing is ever simple, consistent, or straightforward with PANDAS, is it? Hope that helps!

 

 

worried dad,

so your child is one of the kids that DOES show high ASO titers? also, the strep after IVIG--do you mean he was exposed to it or he got it? Is he one that also shows outward symptoms of strept or does not?

 

thanks, some of these things may be clues to which kids respond better to things like abx or the IVIG and which ones have a rocky time.

 

Faith

[bmom]

Worried Dad,

I was just curious if it is regular Augmentin. When I read the "Saving Sammy" book, her son was on what she said was Augmentin XR (I think it is extended release). Does it have to be that to go to high levels? I currently have my son on 1000 mg for a few weeks- 500 a.m. and 500 p.m. I was just wondering if I need to ask Dr. K to switch it to extended. Have you tried other antibiotics? Like Zithromax? if so, did he do any better? What about steroid burst?

[faith]

thanks worried dad,

so from that I see your child DOES at least show titers that move upward and downward and have been considered hi,......so that might be one clue. wondering if all those who manage to have titers that are up there seem to have, let's say a more complicated case that may take some time to respond to treatments?

 

That you say doesn't show symptoms to strep or culture positive would be another category. But yet, he did get an upper respiratory illness that did show? ..... So again, I'm wondering how kids who actually "get" the strep do (or how severe their symptoms are) vs. those who do not get it or show symptoms or positive swabs/cultures, in other words are probably just carriers.

 

So far our experience is low titers two times (talking 60) and doesn't get strep throat on any regular basis or get positive swabs and cultures. I am only aware of one time the doc diagnosed strep for my son and he WAS sick and WAS showing an exacerbation of symptoms (more than 2 yrs ago). after that, just chased our tails.

 

btw, did you have to take him out of school because his symptoms were bad? do you homeschool?

 

**just as a reminder, I'm new on board this train and don't know where we stand yet, and havn't got our cam kinase levels back yet. I'm just trying to play Sherlock Holmes in the meantime.

 

Faith

[EAMom]

Greeneyes...I know you mentioned saline. Did you use Gamunex 10% for the IVIG? Gamunex 10% is incompatible with saline. I don't know how saline was used in your son, but dh (Buster) wouldn't even let the nurse flush dd's line with saline (the nurse was like "oh yeah, I forgot").

 

Gamunex, which is available as a 10 percent liquid, is incompatible with saline but can be diluted with 5 percent dextrose in water (D5W).

 

 

Also, have you done Cunningham's blood tests?

 

Also, I do wonder if the kids with tics do better with plasmaphereis.

 

Have you cultured family members recently to make sure there are no carriers?

 

How much does your son weigh?