What Should I Do?

[lynn2]

DS14 had IVIG in late August and has a second IVIG scheduled 6 1/2 weeks later in October. We have not seen any gains. What we did see was substantial negative progress which has slowly recovered to a level below baseline. Ability to focus is about baseline, OCD is worse than baseline, rages and tics are way worse than baseline. Admittedly, it has been "only" four weeks, but DH, who already feels that he has been led up the garden path (abx didn't help, nor did steroids, but DS has had whatever it is since 6, now he is 14), is pretty adamant that if we don't see any gains, we should stop all treatment and assume it is Tourette's plus comorbid OCD. Cunningham was 150, not in exacerbation. He is deficient in 12 of 13 s. pneumonia titers.

 

So that's the question, IVIG, even if there is no gain, or assume that he does not have PANDAS? Please advise!!

[dcmom]

I haven't done IVIG- but am her all of the time so I will give you a thought...

 

Who is your treating doc?

 

I know Dr K, who sees a lot of the kids, and has done the most ivig- is pretty adamant about some things. The first is that (I think) it takes at least 6 weeks to start to see improvement, and during those 6 weeks kids often get worse.

 

The other thing is, I think he prefers to wait about 3 mos in between treatments.

 

I would consider a consult with him if you are unsure.....

 

The other thing is, I would be sure to test for possible underlying infection and/or allergies prior to ivig #2 (if you didn't do so already).

[Priscilla]

my dd had 1st IVIG july 31, 2nd Aug 29. It has been a ###### ride since the 1st, but just this past week we have seen pretty drastic improvement. OCD (fears) have been the worst of it and she is making ALOT of progress. So the thought is, she is 7-8 weeks post the 1st IVIG for us to see this progress. You may just need a little more time. Trust me, I know how bad it is, we ended up in ER for sedation 1 week after 1st. Seemed to have milder reaction 1 week after 2nd, but she was still having a herxing/ turning pages type reaction. I suspect we have had this for almost 8yrs, so I think healing will take time. I want to keep going this direction, it is so scary to think she could regress, but I have to say, we are about 75-80% better. I am even seeing the personality I thought was gone d/t age. She is so much more friendly and compassionate like she used to be. I haven't seen that in years- I thought it was just disappearing as she grew, but now I know it is part of the illness. Keep faith and hope alive, I believe it is absolutely necessary and I believe our faith is pushing us forward. Best thoughts and prayers to you.

[peglem]

If I was you, had gone through all that treatment, and the result was worsening- I wouldn't keep trying those same treatments unless the doc had some very detailed facts to convince me this is the right direction. I would need some serious, credible explanation/evidence of what is going on. That being said, I personally do not believe anything is "just" TS or "just" OCD. I think those are symptoms indicating that there is something else going on. People have to decide if they want to just live with and manage those symptoms, or try to find the underlying cause and treat that. But, I'm not a doctor and don't even play one on TV, so just a personal viewpoint.

[lynn2]

First, thank you guys for your posts and support!

 

Peggy, I agree that I would like to have some forward progress before proceeding. I might consider doing the second IVIG without this, but DH, whose cynicism I use as my truth check, would not support it. However, I am also not willing to go forward with DS' symptoms as they are if there is a reasonable intervention. I should add that I absolutely agree that TS and OCD are symptom labels and no one knows what they actually represent. That's why I spent so long turning down treatments that just hid the symptoms!

 

Priscilla it sounds like you basically had the same protocol that I do. Did you see any gains in between the two IVIGs?

 

DCMom, I am glad to see that 6 weeks time frame. I have been looking through old posts and I've seen a lot of people who saw progress in the first two or 3 weeks, and I have been sitting here sadly thinking, well, that didn't happen. Looking back further, it appears that Dr K has said that for teenagers who have had this for a long time, the time frame might be more than 2 months. Yikes. But that is basically what I am hearing from Priscilla too.

 

Well, it is 4 weeks today. Maybe I don't have to make this decision right now. I will see what today brings! DS got so angry yesterday that he broke my glasses (He has had an obsession with them for a few weeks, but I think/hope breaking them was an accident.) but just now he called and said he was walking around the school area with his friends (!) I haven't heard about doing things with friends for years!

[Priscilla]

I would have to say not really any gains substanial enough to call them that until now (almost 8 weeks post 1st) OCD actually got worse, rage also. Her tics seemed to have subsided with abx treatment before IVIG. Maybe some very mild things could be considered tics, but OCD and rage are the worst. Just 1-2 wks ago, there were so many things she was avoiding, she was angry most of the day, if I asked her to do anything. Just this week, it seems almost all of her fears are gone. She goes into carport, no hesitation, puts clothes over head instead of steppin into, walks in and out of doorways like nothing. Her worst trigger for rage has been the word "back" I am so gunshy to say it, but she hasn't reacted to it in the last 2 days. Still some frustration and rage when faced with doing homework, or being rushed, but calms herself much easier. As I am writing I am realizing that she has made substantial improvement over the last week. We have been on abx since april with only about 1 week totally off. This is the best she has been since 1st course of abx. Even better in some ways (personality wise). We are treating aggressively with the ivig- 2gm/kg every 4 wks. We have been under some scrutiny for that, but my doctor, as well as all the others, are doing "experimental" treatments, and he doesn't charge me to discuss treatment over the phone. All I know is my dd is improving, and I hope and pray we continue. Follow your gut instinct as a mom. Mine has been right over the doctor's opinions too many times to count. Best wishes to you and your family.

[fuelforall]

Hi

I find Cunningham to be pretty authoritative. My son did not do too well either and he's had it for a long time, though not as long as yours.

I think the second IVIG is worth it but we are waiting at this point before doing so. DS10 has been less bad lately. I'll post when I have more info on what I am doing. Not sure when. Cryptic, I know.

 

Michael

[Fixit]

If I was you, had gone through all that treatment, and the result was worsening- I wouldn't keep trying those same treatments unless the doc had some very detailed facts to convince me this is the right direction. I would need some serious, credible explanation/evidence of what is going on. That being said, I personally do not believe anything is "just" TS or "just" OCD. I think those are symptoms indicating that there is something else going on. People have to decide if they want to just live with and manage those symptoms, or try to find the underlying cause and treat that. But, I'm not a doctor and don't even play one on TV, so just a personal viewpoint.

 

Agree!!!

[momaine]

I would really appreciate it if when people talk about the IVIG's that their kids have had, if they would also put the dosage. It makes a difference on what advice you might recieve since higher dose (1.5g/mg) is thought to be better for PANDAS because at that dose it reduces inflammation rather than increases it.

 

I have heard it can take up to 8 weeks to see benefit, though that wasn't the care with my dd. (within a week or so we saw benefits)

 

Have you ruled out Lyme with an Igenex test? (it tests bands that were removed from other western blots due to a vaccine that was in the works so everyone tested for Lyme wouldn't come out positive if they had the vaccine)

 

Also, has your son been ill at all during this time? cold, bacterial infection?

 

My dd improved a lot after the first ivig. Unfortunately, after the second she got another sinus infection. We're only 4 weeks out from that one and still hoping for more progress, but I'm certain that the sinus infection set her back a little.

 

Hang in there.

[Priscilla]

Now that I am thinking about it, It could either be the time lapse from the 1st ivig, or the fact that we did a 2nd so close and gave it her system some extra umph to fight. We are 4 weeks post 2nd, so maybe the 2nd is what is helping now. It is really hard to know. My dr did say he has had to give at least 3 to get better results. I have also read healing can take 6mos to a year. IVIG is not something that you can just write off quickly. I don't look at it as a quick medication to mask symptoms, rather a adjunct to help her body HEAL itself. Healing takes time. Many other parents will tell you it doesn't happen overnight. Abx are no quick fix either, that is why so many have been on them upwards of a year, then regress when weaned. My thought was I want to give dd a chance to HEAL while giving abx to help keep other things at bay. I am hoping that the ivig will help us to have better success weaning from abx in the future. IVIG also helps to fight underlying mycoplasma infections.

[lynn2]

DS had a 1.5 mg/kg dose. He did get a low grade fever and muscle aches last week, after his grandmother had the same bug. That seemed to be over quite quickly, but it could have exascerbated things.

 

Priscilla--I am so happy for you!!

[EAMom]

What antibiotic is your son on? and dose? IMO that can be very important for IVIG success. (Worried Dad's case is a good example.)

 

I would also culture family members to make sure there isn't a strep carrier in the house.

 

But, I also agree with those that have said that 1 mo. is too early to say IVIG's not working.

[lynn2]

Right now DS is on treatment strength Omnicef. He did not do at all well with Zith and augmentin did not seem to have any effect during a one month trial. Family all cultures negative. I haven't done lyme with igenex, but regular western blot was entirely negative.

 

Michael, I am increasingly wondering what you are doing and await your revelations!

[NancyD]

Lynn,

 

My DD14 --who has had PANDAS since age 2-- has had two HD IVIg infusions (1.5 g/kg) and both times it took her exactly 10 weeks to show steady improvement. I also think the change from Pen VK to Augmentin XR right after the second infusion made a big difference. As hard as it may be, try and hang in there a little longer. I really hope you start to see improvement soon!

 

Nancy