IVIG numer two

[momaine]

Dd13 had her second IVIG this week with Dr. B. (can't say enough good things about him and his staff) She got through it with NO PROBLEMS at all.

 

They gave her 40mg prednisone once per day at noon. They also gave her 400mg motrin and 50mg Benedryl just before IVIG, then six hours later, then again six hours later. Repeat on day two of IVIG. She also got an an IV bag of fluids at the same time which helps too and she drinks as much as she can stand. Seems to be the magic formula for my dd.

 

I asked Dr. B why he felt multiple IVIG's were needed and it made sense to me, though I'm not sure I can explalin it well and I don't want to put words in his mouth. What I can say for sure though is that he is looking to get these kids back to 100% and keep them there. His goal is the same as mine. I feel great having my dd under his care.

[saidie10]

so glad you had such a great experience and your dd is doing well! it is so nice to have an amazing doctor on your side...you can just sit back and be mom for the day instead of researcher extraordinar!

[PhillyPA]

So what did Dr. B say? I know that you don't want to put words in his mouth, but in general, what is the reason for multiple ivig's?

[nevergiveup]

From my dd's (just turned 14 yrs old) experience multiple ivigs was the key. Each one helped a little more. Unfortunately she still has set backs if she gets sick, but with the next ivig we see improvement again. She now does every 21 days and we are hoping this will help eliminate or reduce any setbacks from illness. My dd's symptoms go into dramatic remission about 72 hours after ivig. She maintains this improvement about 9 days and then slowly starts to see symptoms again. This is why we switched to every 21 days to try to eliminate the last week and half of symptom relapse each month. My dd cannot wait for her next ivig, each month, she looks forward to symptom relief. She will most likely be getting her dosage upped, doc says to eliminate autoimmune disease with ivig, dd must maintain an igg level of at least 1700 at all times. Right now she ony maintains that for approx. 9 - 10 days. We are measuring her levels over next three weeks with new 21 day protocol, and will change dose as soon as blood levels are done. Anxious to see how long her improvement lasts with higher dosing. DD has had 9 ivigs to date, and her pattern of remission has been very consistent, except for last May when she had a high fever and resp infection, her remission from ivig lasted less time and her symptoms were much stronger, Finally resolved after second ivig. I hope ur dd continues to do well. Please keep us posted. Sharing of this info is so helpful for all of us to determine which dosage and protocol are working for our kids!!

[KeithandElizabeth]

Nevergiveup:

 

We had a very similar experience when we were doing the monthly low dose IVIG's! We saw an immediate relief and then a worsening of symptoms. We went from IVIG's every 28 days to IVIG's every 21 days.

 

We finally did the higher dose (1.5) on February 4th and have not done another IVIG since. The higher dose was sooo much more effective than the lower dose and the longer we waited after the higher dose, the better things became. Granted, our son also has lyme disease (which we did not know) and we began the multiple antibiotic regime 6 weeks after the high dose IVIG.

 

So, I guess I am wondering if your doctor would allow you to do the higher dose IVIG and possibly wait the Dr. K protocol of 12 weeks in between? What are you thoughts on this?

 

Elizabeth

[nevergiveup]

Elizabeth, I hear so much contrast on this subject, not to mention differences in opinions from docs too. What was your dose that was given every 21 days? There are families on the forum and whom I have met that do monthly and have seen complete resolution of symptoms, some who, symptoms got worse. I would rather do less frequent since this would be better and easier for my dd, but my docs look at me funny when I ask if monthly could make symptoms worse. I am confused, some families say monthly made children worse, I am not saying worse she is night and day from last year, but tics and ocd start to show up about 10 -12 days after ivig, remiss with next ivig again.(I have seen this consistent pattern 8 months now) Makes me think not strong enough dose, rather than wosening of symptoms. Not a cure though either at this point. So for those that did monthly, were symptoms worse than ever or just creepimg back. And did u see resolution of symptoms after each ivig for a little while, or did symptoms progressively get worse with each ivig? I know dosage is key, I am still looking for answers and complete resolution. Thanks elizabeth- I am glad ur son is doing better!!

 

Nevergiveup:

 

We had a very similar experience when we were doing the monthly low dose IVIG's! We saw an immediate relief and then a worsening of symptoms. We went from IVIG's every 28 days to IVIG's every 21 days.

 

We finally did the higher dose (1.5) on February 4th and have not done another IVIG since. The higher dose was sooo much more effective than the lower dose and the longer we waited after the higher dose, the better things became. Granted, our son also has lyme disease (which we did not know) and we began the multiple antibiotic regime 6 weeks after the high dose IVIG.

 

So, I guess I am wondering if your doctor would allow you to do the higher dose IVIG and possibly wait the Dr. K protocol of 12 weeks in between? What are you thoughts on this?

 

Elizabeth

[melanie]

Hi Im in the same boat 1g every 21 days .danny does great for a week than not great and then ok days 15-18 then not great OCD rises then tics lower .OMG what a freaking roller coaster ride.We have done 9 Ivs and #10 is comming next friday.Danny also has HF ASD and is 16 so Im not sure if thats the factor that changes our Drs.His Dr is a immunologist (ped) she swears DR K is doing wrong with this dosage .I wish the papers published would say 1.5g!!!! But they dont. I will not leave Dr J right now.I saw Dr B and liked him,my insurance oked the IV with him ,Im concerned ,he never called me back,schedulled the IV and when I called to ask medical questions wouldnt return calls.That freaked me and my husband ou.Im not saying i wouldnt ever use him or that hes not an unbelievale Dr just Im confiendent that Dr J really perfect for Danny.

[momaine]

I'll try to explain what I got out of the conversation, but I know I'm lacking in medical knowledge to really understand it let alone explain it. (sorry Dr. B if I mess this up) Someone else correct me if something sounds off.

 

Your immune system has a memory. You get an infection and your body makes antibodies to fight the infection. It remembers this so the next time you are infected with the same bacteria, your immune system goes into action from the memory it has to make antibodies to fight it much quicker.

 

In an autoimmune disorder, the antibodies (autoantibodies?) attack the self. (in this case the basal ganglia) The immune system still remembers how to make these antibodies, even though they are bad and even once the infection is gone.

 

When you introduce good antibodies through IVIG, the bad antibodies get quieted down, and the good antibodies are present and stronger??. (plus it reduces inflammation, etc) As time goes by, (not sure if the antibodies wear off, or get used up, or what??) and the good antibodies are no longer present, your immune system goes back to its strongest memory and starts making the bad antibodies again. So, you do another IVIG to introduce new good antibodies. Eventually, the good antibodies will be the strongest memory your immune system has and it will begin to make good antibodies instead of bad ones. The time frame for this will differ with each child and depend on whether or not they stay healthy otherwise, plus how long they have suffered with the autoimmune disorder.

 

I got the impression that other autoimmune disorders that are treated with IVIG are never put into remission with just one IVIG. The need for multiple IVIG's is the norm.

 

He said he expects that dd will get better and better with each IVIG she has (barring any illness that could set her back) and when she gets to and stays at 100% then she will no longer need them.

 

 

I asked why some doctors think one IVIG should be enough to be successful and he said that their idea of successful and his idea of successful were different. His idea of a successful treatment is to get kids back to 100% and have them stay that way. I liked his answer.

 

I hope I didn't butcher what he said too badly. He did say that sometimes he says something, and when it gets to this forum, it is not explained correctly. I'd hate to add to that.

 

Anyway, I am SOOOOOO glad that my dd is being treated by him. She's already so much better than she was....hugely. and on her first night home from ivig number 2 she slept alone in her room. (only second time this year) and she is doing fantastic so far. I am feeling very blessed.

[PhillyPA]

Well done Momaine! I finally get it. Thank you! Did Dr. B say how many ivig's were typically necessary or is it different with every child? Is there a particular number of ivig's that are typically needed to heal a child?

[momaine]

Well done Momaine! I finally get it. Thank you! Did Dr. B say how many ivig's were typically necessary or is it different with every child? Is there a particular number of ivig's that are typically needed to heal a child?

I didn't ask and he didn't say. I did say to him, so I should plan to come for regular IVIG's until she is 100% and stays that way, and he said yes. I know one mom whose child is 98% after 3 ivigs.

 

My dd reached about 70% after the first one. I am already seeing improvement after number two. (with one ocd behavior getting a little more difficult, for the moment) He expects I should see a lot more improvement over the next 8 weeks.

[Betty04]

Momaine,

 

Would you mind sharing whether your child has immune deficiencies and the dose of the IVIG?

Thanks!

[sptcmom]

Well done Momaine! I finally get it. Thank you! Did Dr. B say how many ivig's were typically necessary or is it different with every child? Is there a particular number of ivig's that are typically needed to heal a child?

I didn't ask and he didn't say. I did say to him, so I should plan to come for regular IVIG's until she is 100% and stays that way, and he said yes. I know one mom whose child is 98% after 3 ivigs.

 

My dd reached about 70% after the first one. I am already seeing improvement after number two. (with one ocd behavior getting a little more difficult, for the moment) He expects I should see a lot more improvement over the next 8 weeks.

See, here's where the waters get murky. Dr B used to do 1g/kg IVIGgs monthly until recently. He kept an open mind, learned from Dr K's experience I believe and since February or so ( as per my info and I could be way off) he's now doing the high dose. The high dose has a very scientific guidelines behind it Dr K explained that as per calculations for an antiinflammatory dose for PANDAS its exactly 1.47 gms/kg and its ok to round off 10% plus minus and hence the 1.5 gms round off.Higher inflammations of the brain like in Guillian Barre syndrome (also autoimmune) require an even higher dose of 2 gms/kg and those kids need multiple too. My friend's son was TOTALLY paralyzed waist down at age of 18 months for 3 months before NY Presbyterian diagnosed him with GB syndrome. He received 4 IVIGs at 10 to 12 week intervals and is now 8 years old and been in full remission since age 4.5.

I personally think every doc is still learning and thank the Lord they are willing to keep researching and learning for our children's sake. I don't feel comfortable having any doc in charge. I feel I have to get all the suggestions and choose my own options. I don't agree with Dr K and his low dose augmentin post IVIG. I also don't agree with Dr B and his repeat IVIGs. I don't agree with Dr T saying IVIG should be the last option.

We've been to so many many specialists like all of us here and am totally jaded.

Now immune system explanation

Dr K says: post IVIG, increase in antibodies, so own bone marrow shuts down production, once donor antibodies reach low levels in blood own body detects and restarts the bone marrow production of antibodies. At this point at around 12 weeks is when Dr K believes a lot of children will reboot their bone marrow- the body actually learns from the donor antibodies. The donor antibodies reprogram the bonemarrow to produce normal antibodies. Those of you who have experienced the epiphany moment thats exactly what happened.

I personally and professionally believe that children's bodies have an immense capacity for self help and learning. The immune system should be given a chance to reboot, learn- just enough time to try to heal itself.Evenly spaced out IVIGs as per DR K's philosophy afford the body that chance to try to regroup.

About autoimmune- I don't think there is ever 100% forever. Most achieve a 100% remission. Any major stress can reactivate the autoimmune mechanism, the system can morph into another autoimmune disease or restart the last one. This has been my exerience with Vitiligo and PANDAS with DS. Dr T gave me a few research studies on the vitiligo gene in the DNA and its correlation to several other autoimmune diseases.

[nevergiveup]

Momaine, that's the exact info I got from my immunologist also. So the theory is to retrain antibodies and get rid of memory of old b cells, takes about a year to do that, b cells last over a year. Dr L says it can take up to two years for the brain to heal. quote name='Betty04' date='21 August 2010 - 05:28 PM' timestamp='1282426086' post='80723']

Momaine,

 

Would you mind sharing whether your child has immune deficiencies and the dose of the IVIG?

Thanks!

[momto2pandas]

Based on their levels of immune deficiency, Dr. B predicted that my ds6 would need 6 months of IVIG (and our new immuno says 6-12), and that ds4 would need them "indefinitely" - couldn't yet tell.

 

I've put this in other threads, but I'll summarize our experience again. My boys had 1.5 g/kg with Dr. B in April, followed by 0.75 g/kg more or less monthly since. They've now had 5 treatments. Tics and digestive issues, poor appetite, and anything resembling depression resolved basically completely after the very first treatment, and never came back. After the first dose, we had some "turning back of the pages" for a couple of weeks, then it stabilized, then we got some mood detioration after a few weeks -- whining is what it boiled down to. After each of the next two doses (0.75), one of the 2 kids had one noticeably bad-mood day immediately after dosing (different kid each time), then what we considered total remission, then mild to moderate whining (primarily ds6) during the last few days before the next dose. After that, things stabilized completely (no deterioration prior to next dose) except for some whining in ds6 for a couple of days while we did a 10-day trial off of antibiotics, during which time both boys got impetigo (likely strep). Moreover, around this time we noticed resolution of things that we hadn't even considered problematic. Even minor sensory issues disappeared, very minor bedtime anxiety disappeared, minor shyness disappeared. I'm very curious to see if we'll notice additional changes over the next few months.

 

Honestly, ds6's whining, when it was happening, was nothing that I don't see all the time in his peers - probably even not as bad as his peers - so I'm not sure it was anything significant except that for a while there was a pattern to it. Ds4 hasn't even flinched mentally for quite a while now.

[momaine]

Momaine,

 

Would you mind sharing whether your child has immune deficiencies and the dose of the IVIG?

Thanks!

She failed all 12 tests on the pneumococcal panel. She got 1.5g/kg