IVIG, no improvement yet, and worse.

[lmkmip67]

I am starting to really lose hope that IVIG will help my son. It is going on the 6th week and he is still much worse than before. I worried about making him worse, and it does seem to be the case. He has tics and OCD that not even Motrin can touch. I was waiting and waiting to see things improve, I know they can get worse before they get better. But they got worse, and remain so. I know it can take time. But after 6 weeks, i was even told at the doctor's office it could take up to 6 weeks. I figured that meant I would see SOME improvement, instead of none. Now I am afraid he will be stuck dealing with these tics that bother him so much. Poor guy. He is an augmentin as well. He was tested for a co-infection of lyme, and was fine. I don't see what else we can do. we are going for another treatment in a month. But my hopes are not high at this point.

 

Lisa

[beeskneesmommy]

Lisa - hang in there! We are likely heading in the direction of IVig, but have not been there yet. I just felt the need to respond because I know the deep worried feeling and despair that comes with your child being ill with PANDAS. Maybe you can get in with the doc and have a discussion about what's going on? I will send positive thoughts your way!

[lmkmip67]

Thanks. I am trying. I don't expect miracles in 6 weeks. I really don't. But I was told I should see some improvement and he is only worse. I expected worsening, but not for weeks on end with no improvement. I will keep hoping as I can't do anything else. But it just makes me think this won't likely help him as much as it seems to for so many others.

[kimballot]

Lisa - My son had a very bad exacerbation after IVIG 14 weeks ago. He had a second IVIG about 5 weeks ago. In our case, the exacerbation was OCD and depression. We are JUST starting to see improvement over the past 3 week or so. He is getting his sense of humor back, and rages are flaring only at night when both he and I are tired.

 

In our case, I think the singulair he was taking was contributing to his depression, and we did see that lift a bit when we stopped singulair about 3 weeks ago.

 

I have also been very regular with giving him charcoal capsules for detox. I was giving it to him once in the morning, but now am doing it after school too (no rage last night - first night with after school charcoal). It is difficult because charcoal, antibiotics, and probiotics have to be taken at least 2 hours apart from each other.

 

My son is also undergoing an "antibiotic challenge" test right now for lyme. He is taking doxycyline and flagyl for 3 weeks in an attempt to make any lyme come out of hiding. Many people warned me that we would see a big flare of symptoms once we started these antibiotics, due to herxing, which is why I have been so careful with charcoal. We saw a small flare for about one day, but he is actually looking BETTER on these antibiotics than he did on zith. So... you might want to ask the doctor if you could add or change antibiotics. I am planning to ask about switching off of zith once these antibiotics stop. I think we need to change antibiotics periodically in our kids.

 

 

Hang in there - I know it is an AWFUL feeling to think you may have chosen a medical procedure that made your child worse... but it is just one more hurdle for us.

[lmkmip67]

Thanks, Kim. It is hard when he says, "I hate IVIG. It made the sounds come back!" The vocal tics bother him a lot. He isn't being teased at school, but kids notice and he feels insecure. At 7 he knows what is going on. He had vocal tics bad last summer, before we started treatment but they totally went away. Maybe would surface for a day when exposure to strep. We were on Zith. but it didn't do a lot, so Dr. B switched him to Augementin. At one point we were on two antibiotics and didn't really see any change with the two, so we took him off. My son doesn't take anything else for allergies or anything. But I will try the charcoal. It can't hurt. I hate this disease.

[kimballot]

It is VERY hard. I feel so badly for you and your son. I just kept telling my son that it takes a while for his body to get rid of all the bad antibodies, but we are going to do another IVIG so that the bad antibodies stay away and cannot come back once they leave. I hope you see more healing with the second IVIG.

 

Was the lyme and coinfection test completely negative - or did you have some "indeterminate" bands?

[LNN]

I am starting to really lose hope that IVIG will help my son. It is going on the 6th week and he is still much worse than before. I worried about making him worse, and it does seem to be the case. He has tics and OCD that not even Motrin can touch. I was waiting and waiting to see things improve, I know they can get worse before they get better. But they got worse, and remain so. I know it can take time. But after 6 weeks, i was even told at the doctor's office it could take up to 6 weeks. I figured that meant I would see SOME improvement, instead of none. Now I am afraid he will be stuck dealing with these tics that bother him so much. Poor guy. He is an augmentin as well. He was tested for a co-infection of lyme, and was fine. I don't see what else we can do. we are going for another treatment in a month. But my hopes are not high at this point.

 

Lisa

We had a very rough time post-ivig. it took 10 weeks before he started to come out of the tail spin, another 4 to stabilize. When he didn't respond the way we expected, we tested for lyme via Igenex. Standard western blot prior to IVIG had been completely negative, but Igenex showed lyme. Initially, treatment for bartonella/lyme brought amazing progress. It's been a bumpy road since, but detox is crucial. My son has really struggled whenever we've been aggressive (IVIG, tindamax abx for lyme). So we're now testing to see if he's genetically predisposed to having trouble shedding toxins and fighting bacteria (see the HLA-DR4 threads on the lyme forum). If so, our plan will have to be much slower, with a much greater emphasis on supporting the body and managing inflammation.

 

My son was also a big ticcer. Ibuprofen/aleve don't help the tics, but they help mood and take the edge of behavioral challenges. Only time and detox help the tics subside. For us, subsequent IVIGs aren't part of the plan. It's more than he can handle. I don't mean to be negative on IVIG - I know it's very helpful for many. Just wanted to mention the HLA-DR4 genetic aspect in case that helps. 25% of the population has this genetic variant. So if you're concerned, it may be worth testing prior to the next IVIG (test must be done by Labcorp). You can PM me if you want to discuss further.

 

Laura

[lmkmip67]

We did the full panel through Igenex for lyme and it was negative. It isn't just his tics, his OCD is worse, too. As is behavior. It is like everything is just ramped way up. I will keep waiting, nothing else I can do. I won't do tons of IVIG. If we don't see improvement after 3, I can't see the point in doing more. At that point it would be a waiting game.

[kimballot]

We did the full panel through Igenex for lyme and it was negative. It isn't just his tics, his OCD is worse, too. As is behavior. It is like everything is just ramped way up. I will keep waiting, nothing else I can do. I won't do tons of IVIG. If we don't see improvement after 3, I can't see the point in doing more. At that point it would be a waiting game.

 

I have been thinking about you all morning. Tics are so painful to watch. My son does not get them often, but when he does I hate it. I agree that 3 IVIGs is giving it more than enough of a chance to work. I am hoping you will see improvement around 12 weeks post IVIG #1

[lmkmip67]

We did the full panel through Igenex for lyme and it was negative. It isn't just his tics, his OCD is worse, too. As is behavior. It is like everything is just ramped way up. I will keep waiting, nothing else I can do. I won't do tons of IVIG. If we don't see improvement after 3, I can't see the point in doing more. At that point it would be a waiting game.

 

I have been thinking about you all morning. Tics are so painful to watch. My son does not get them often, but when he does I hate it. I agree that 3 IVIGs is giving it more than enough of a chance to work. I am hoping you will see improvement around 12 weeks post IVIG #1

 

Thanks, Kim! I do appreciate it! We are going at 8 weeks for a second IVIG. I hope to see some improvement when we go back so I feel like we are doing it for a reason, you know? I realize it takes time. School will be out then, and summer will be here. Granted he is in camps (I have to work, so can't just keep him home). But hopefully not as much junk is going around in the summer and he will be able to give the second IVIG a chance to take hold before school starts.

[PhillyPA]

Ivig brings everything to a head. It is like a big zit and it is just waiting to pop. The first ivig my son went crazy until about the 8 week mark. Then, improvement. It wasn't until his 4th ivig that things really started to turn around. The fifth one was amazing. The sixth one even better. I was almost crying yesterday watching my son playing with his brother. Life is so different than it was a year ago. There is so much hope in this house.

 

Just keep telling your son that he will be alright. He will be. Expect a miracle.

[philamom]

I'm going to keep this short - it's not my place to talk about lyme & co-infections here. But, I'm not a huge fan of testing for Bartonella with Igenex. I wish our immuniologist (same as yours) would use the lab (for Bart--which is associated with ocd) that the LLMD he recommends, uses. It's a more specific test and covered by insurance.

 

In July, I tested my daughter for Lyme (Bb) and co-infections through Igenex. I was fortunate to get a positive Western Blot (Bb) and IFA result. Her co-infections were all normal. Had her western blot been negative, it would have been the end of my search for more answers. She already had three IVIG's before the lyme results. I took her to an llmd who ran additional test and she was postive for Bartonella with Specialty Lab (now a division of Quest) and RMSF through Quest. Both test are covered by insurance. She also has numerous elevated Igg's of infections which she never had any symptoms of (Mycoplasma, Cytomegalovirus, C. Pneumoniae, HSV 1, Herpes 6, Epstein Barr Virus VCA & EBNA). She also has elevated LFT's & Cholesterol. These elevations are commonly seen with Lyme. My daughter has had a total of five IVIG's. We feel she is dealing with Lyme & PANDAS (or PITAND).

 

With that said, many people on here don't see results until 3 months post IVIG. But if you don't see improvements, you may want to consider additional testing.

 

Hoping you see results soon!!

Edited June 2, 2011 by philamom

[Mary M]

The wait for results post IVIg can be grueling. In your rational mind you know you've read about the "gets worse before better" and "turning back the pages" BUT your heart says I did this treatment for my child's better health...and I'm not seeing health. The road to any recovery feels so long and arduous. We are 11 weeks post HDIVIg #2...the movement disorders have been painful...both to observe and experience (for my dd she complains that parts of her body hurt--of course they do, anyone's body would hurt from all that purposeless movement). As for the OCD--that's painful too...seems to torment my dd. But, on the bright side...we did IVIg#2 because we did see improvement after IVIg #1. Granted, it was a LONG time after (started after 6 weeks, slowly, painfully slowly...and continued slowly, painfully slowly for months) until reinfection returned her to dysfunction again but not nearly as bad (mostly because we got IVIg faster). So there is hope for healing...and perhaps someday none of us will second guess our treatment choices. But for now, unfortunately, that seems to be one of the many challenges of living with PANDAS.

Mary

from Michigan

[kimballot]

I took her to an llmd who ran additional test and she was postive for Bartonella with Specialty Lab (now a division of Quest) and RMSF through Quest. Both test are covered by insurance. She also has numerous elevated Igg's of infections which she never had any symptoms of (Mycoplasma, Cytomegalovirus, C. Pneumoniae, HSV 1, Herpes 6, Epstein Barr Virus VCA & EBNA). She also has elevated LFT's & Cholesterol. These elevations are commonly seen with Lyme. My daughter has had a total of five IVIG's. We feel she is dealing with Lyme & PANDAS (or PITAND).

 

With that said, many people on here don't see results until 3 months post IVIG. But if you don't see improvements, you may want to consider additional testing.

 

Hoping you see results soon!!

 

Philamom-

 

My immunologist recommended we use specialty labs, but the llmd uses igenex... could you tell me more about specialty labs, and also about the RMSF (what is that?)... My insurance (currently) does not participate with quest, but I do have out of network coverage I could use.

 

I don't want to hijack this thread, so I am going to start another thread - on the lyme forum. Thanks!

Edited June 2, 2011 by kimballot

[NancyD]

Each time we did HD IVIg it took DD exactly 10 weeks to show results. The first one we did was in 2008 and her tics (both vocal and motor) subsided ~ 70-75%. I had emailed Dr. K just prior to our infusion and he was doubtful we would have success because she was 12. But we did. It took up to a year for the tics to disappear 100% and thankfully they never came back (even after subsequent exacerbations). The rages also disappeared but they did come back after subsequent exacerbactions. The anxiety and OCD did not improve at all and in 2010 she tested positive for Lyme. I'm guessing it's congenital because I have it too. While some symptoms cleared up after 6 months of treating Lyme the anxiety and OCD only continued to get worse. Even though she tested negative for Bartonella and Babesia twice we decided to take a leap and switch abx to treat Bartonella (Biaxin and Rifampin). Within 2 weeks she had a Bartonella rash. It has only been ~ 2 months and for the first time we have seen some decline in her anxiety and OCD. It's been a long road for us (15 years) but I am so glad that I started looking at Lyme and other co-infections. Am I sorry I did IVIg? No, since it stopped DD's tics, helped her to sleep in her own bed by herself for the first time in 10 years, improved her grades from Cs and Ds to As and Bs, and improved her rages so much so we were able to take her off Risperdal for the first time in 10 years. That was 2 years ago. And now I'm hopeful that treatment for Bartonella will get us the rest of the way. Patience and Perseverence was (is) key!