momaine

Awesome! Thanks for sharing your success. I just want to add one more thing to those worrying about the worsening of symptoms post IVIG. I was scared because of what I had read on here. It really wasn't that bad though. (at least for us) Yes, some symptoms worsened, but some got better right off the bat. So, even though my dd was repeating more, she wasn't even a tenth as anxious about it. She didn't rage or cry or want to die. She just repeated, sort of matter of factly. She'd have some moments where she got more emotional, (last night she was a bit frustrated, we are 4 days post 2nd ivig) but she got over it quickly and went to sleep. The difference in my child post IVIG is astounding. I cannot wait to see what the next few weeks bring. Instead of dreading them, I am looking forward to them. I have more hope than I've had since we started this journey.

I hope you are able to find someone locally to help you. Maybe all you will need is antibiotics and your family doctor can provide these and you'll be all set. But that is not what most of the parents on this forum have experienced. BTW, Dr. Geller's private practice costs $2000 out of pocket to get through the door. They don't deal with insurance. I am going to say something harsh and I'm sorry that it may hurt your feelings but if it saves your child from going through what mine went through, then I'm not sorry I've said it. If your child was dying, would you drive 3 hours to see a doctor to save him? It seems so short sighted and selfish to say you cannot drive 3 hours to have your child correctly diagnosed by a professional who understands and offers more than one option to treat this horrible disorder that typically continues to worsen with time or exposure to strep. Maybe I'm biased, but when my dd begged me to kill her every night and I knew that she truly would have been better off dead than continuing to live like she was, the six hour drive we made (and continue to make) was nothing. I'm sure you are not at that point yet, but for us it started out mildly and then worsened considerably until she was non-functional. (over 4 years which I wish I could get back) My child has gone through ###### and my goal is to save some other family from the pain we've been through. I do know that Dr. Bouboulis is not the only one who can and has helped kids with PANDAS, but he's only 3 hours from you and that sounds like such a blessing to me.

If I were you, I'd go through the list of doctors on this sight that have helped with PANDAS and choose one that people seem like they've had a lot of success with. Having moved from antibiotics, to steroids, and now to IVIG, if I could do it again, I'd go right to an immunologist who offers IVIG because then you have all options available to you right under one roof. (well, except maybe PEX) I can't say enough good about Dr. Bouboulis in CT. He's been a life saver for us.

I can't advise you strongly enough to make the trip to see Dr. Bouboulis in CT. SO worth the drive. Wish I'd done that first.

As far as the 100% and stays that way comment that I made, I'm talking with this particular exacerbation. Not to say it can't come back at some later date and she'll need it again. I can't comment on anything else as I just don't have the knowedge to do so, but I did think I had read on this forum before that when Dr.'s B and K talked that they came to agree on the dose and also on the time frame for future IVIG's which I thought I read was between 8-12 weeks. REally can't comment further as I don't understand it all. Just trying to share what I thought I had learned from him. I was hesitant to do so as I can't back it up or explain it. It seemed to make sense to me though.

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

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.

Have you ever had a pneumococcal antibody panel done to see if you have the antibodies to fight strep?

Yay!

We have done both a 6 day burst and 20 day tapers with GREAT success for our 13 year old dd while she waited for IVIG. We also gave Advil at the same time with no problems. On the longer taper, she started with 40mg for 5 or 6 days, went to 30mg...same, then 20mg, then 10. At the time she weighed around a 100lbs. I consider it one of her miracle drugs.

I know someone whose children had it with a 4 hour drip and they felt quite miserable afterwards for days. My dd had it done with Dr. B at the slower rate and did just fine with some prophylactic drugs. (prednisone, motrin, benedryl, and a bad of iv fluids)

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.

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.

Congrats! My dd13 (110 lbs now) has had IVIG two times without any negative side effects. We give her 400mg motrin and 50mg Benedryl just before IVIG, then six hours later, then again six hours later. Repeat on day two of IVIG. Also, the nurse gives her an IV bag of fluids at the same time which helps too and she drinks as much as she can stand. And at noon each day she got 40mg of prednisone just the one time. For my dd this has kept all side effects at bay. (edited this because I made it sound like she got the prednisone every 6 hours and she did NOT, just once per day)

I pushed fluids for a few days before plus Dr. B gave dd iv fluids at the same time as IVIG. Also gave dd 13 (100lbs) 50mg benedryl, 400mg motrin, and 40mg prednisone on the days that she had IVIG (repeated motrin and benedryl six hours later) She had no side effects last time and I'm hoping for the same this next time.

This brought tears to my eyes. Thank you for sharing.

My dd had a few difficult days around that time post ivig, then things leveled off again and are holding steady, it seems. It's hard to put a number to it but my dd13 (who has had this for 4 years now) is at least 60-70% better than she was pre-ivig. We have a second one this week and I'm hoping for more improvement. It's hard to not panic when things take a downward turn. I think journaling with a graph of behaviors is the best way to look at the big picture. I have to do it periodically and compare it to where we were last winter when I'm getting worried. It alwyas makes me feel better. Hang in there. Angela

Is it possible that you could add an antibiotic instead of switching? My dd was one Azith and Augmentin at the same time for quite a while. Have you tested to see if your child is able to fight strep? The test is called a pneumococcal antibody panel.

Since your already working with Dr. K, can't you get him to do a phone consult with your prescribing doctor and tell him why the high dose is neccesary? Angela

My dd also experienced frequent urination which was at its worst in the first exacerbation. It lasted a really long time (years??) but did lessen over time. When she started antibiotics (3 years in) it went away and has never returned. Angela

The only thingi I can think of is allergies. Interestingly, my dd's last exacerbation began last August. We have since discovered she does have allergies that affect her sinuses. It was not obvious but she did have head aches and told us in hind site that she never breathed through her nose very well. I say, definitely while you wait for an apt. you could try an over the counter allergy medication and/or try to Neti Pot sinus rinses. They seem to work really well.

I thought I had read on this forum previously that when Dr's B and K talked, they agreed that between 8-12 weeks would be optimum time at 1.5g/kg. That said, Dr. B has scheduled us 8 weeks apart between numbers 1 and 2. That will be next week for us. I will say that the last two weeks or so have been pretty much the same daily. I don't know if that means things have settled down or not. It's hard to choose a percentage of improvement, but if I had to choose a number at this point and be a bit on the concervative side, I would say that at this point, my dd is 60-70% improved. That means, i am leaving room for 30% more improvement, but really if I had to compare how she can interact with the world NOW, compared to when she was in her worst exacerbation, the difference is night and day. Dr. B told me a second treatment should bring her further relief.

the slower drip can definitely lessen side effects. also, being dydrated lowers the chance of side effects. My dd got iv fluids with her ivig, I also put the liquids to her, she got benedryl, motrin, and prednisone and seh had no side effects but is definitley much improved 7 weeks post ivig. going for round two middle of next week. Hoping for even more improvements after round 2.

can you request a different nurse, one experience with children and IV's? Put the fluids to him too! Sorry you had such an awful experience! Angela

Thanks for that EAMom. It does make sense that the antibiotics might kill the strep in her mouth as well (as long as it would be the same type of antibiotic that is effective against that type of strep) and I have to wonder since my dd failed all 12 of the pneumococcal antibody panel if it's likely that she also is/became immune deficient to the type of strep that causes cavities? (Can you develop immune deficiency or are you born with it?) (no cavities at all pre-pandas) Just throwing some thoughts out there. Angela