momaine

A year ago I wondered the same thing. Today I KNOW they can get better. Nancy has it right. You need to find all the pieces to your particular puzzle and keep moving forward. If things are not moving in the right direction, its time to find another doctor. Today my dd is doing great (not 100% but fanfreakingtastic compared to a year ago) and I know she will one day get to 100% and maintain that. It just takes time. She was sick for over 3 years before we figured it out and another 7 months before she got her first ivig. We're on the right track. Healing just takes time.

I'd recommend the IGENEX testing for Lyme. You'd certainly want to rule it out, completely.

The Doubletree is 5 minutes from his office (norwalk) and if you call Dr. B's office, they can give you a code word to get a discount. You then call the sales department to make reservations. It's a nice hotel and has a pool.

Also, I meant to add that our doctor said it was safe to take an over the counter dose of Advil daily for an exteneded period of time. She said at that dose (we didn't even need a full dose) that it was considered very safe. Take it with food. (you can take an acid reducer with it too, if it causes probelms) We've had liver tests done on our dd and nothing has shown up even though she spent a year taking way more advil than I wish she had. It brought her such huge relief. If it is helping your dd, discuss it with your family doctor or with your Pandas specialist and see what they think.

I looked online and I couldn't find where it says how quickly ibuprofen leaves the body, but my dd behaviors come back within 24 hours after taking ibuprofen when she is in an exacerbation, so I would not think you would need to suffer needlessly for two weeks before your apt.

Well, you haven't given us much to go on, like when she started each medication and how much she is on or when behaviors started. But if she started sleeping better when she started Azith and now she looks worse, I'd be wondering if it were from the die off of bacteria. Are you giving her probiotics? Has she been allergy tested? Allergies can cause dark circles under the eyes, I believe. Personally, for my PANDAS child antibiotics have been life savers and I would talk to my doctor before I discontinued them. I'd have to have good evidence that they were doning more harm than good. My family doctor who first began treating my dd for PANDAS said she could stay on antibiotics unless she began to fail in her health, like losing weight and not being able to eat from stomach issues. THe probiotics have kept things in check with my dd.

Hugs. No words of wisdom, other than what has already been said. Wish the road to recovery was a straight one. Hang in there.

Last year I gave my daughter a bracelet for Christmas that said "Hope" on it.

I'm the one who wrote Dr Catherine Lockwood as helpful to us on our pandas journey, but she is just a family doctor who was open to treating with antibiotics when I brought her information on pandas. She has no ivig experience.

Sharing your story is one way of paying it forward. It gives others hope. I will share a short version of our story too, with the hopes of giving someone else some hope at this time of year. I am not on the forum very often these days. Busy living life, working again after being a stay at home mom for 16 years, and trying to focus on daily life rather than reading and worrying more. It means we have come a long way. One year ago we were desperate and frightened. Our 13 yo dd was completely incapacitated by her OCD. It was a nightmare. She is now post 3 HD IVIG's with another scheduled for Mon and Tues. She is doing amazingly well, though not perfect, having had two sinus infections post IVIG number 2 and 3. We are tweaking meds in the hopes of preventing any further sinus infections which do set her back. Once under control again (back on Augmentin along with her Zith), she continues to make progress, however. It's been a learning process. My dd, now 14, is happy and independent again. Right now she's at a friend's on an island and she took the ferry alone to get there. Recently, she and another friend took a train, complete with a train change and a short subway change, on a 16 hour journey to her friend's relatives for a weeks visit. She took her meds along and was very responsible while she was there. I was so proud of her. For us, the IVIG's have been key in her healing. We did antibiotics (a few combinations) for 8 months before IVIG with no sustained progess. I believe she will get to 100% if she can keep the sinus infections at bay.

I love Dr. Bouboulis. If you want to write to me privately, you can reach me at game-enthusiast@roadrunner.com

the health insurance company settles for a lot less than they are billed for. They billed like 12k for my dd but recieved under 8K. I believe you would only pay the 20% of what the insurnace company accepts from the doctor as the price they settle on.

Congrats on the coverage. Just wanted to let you know that IVIG has been the best thing we could have ever done for our daughter. I was scared too but it has truly been miraculous. Still has a bit of healing to do, but we are miles away from where she was before the first IVIG treatment. Bit of advice. Benedryl and prednisone can prevent serious headaches. STaying on antibiotics is important.

It's funny the things that make me cry these days, but this was one of them. I am so happy for you and your dd. My almost 14 yo and 16 went to a few houses last night before going to the movies. It's a little sad to have them growing out of that stage. Thanks for sharing your joy!

Yay! Thanks for the update. I hope things continue to improve. Angela - doing a happy dance for you

I have always homeschooled my girls in a VERY relaxed fashion. You might call it interest-based learning. It has never been what people envision when they hear "homeschooling." (sitting at the table for hours every day with a boxed curriculum) It has not hindered them in any way, and in fact, I consider their free childhood a gift that I was able to give them, to allow them to grow up and learn at their own pace and in their own ways, following their own interests. My dd who has PANDAS has decided to take classes at the high school this year as a freshman. She's a young freshman, having just turned 14 a couple weeks ago. She made the transition into high school with ease. (She's a smart girl.) For the last year she had been unable to read or write. (or pretty much do anything at all except watch tv) I can see learning in almost everything , but she did little that even I would consider educational because she was so ill. It did not hinder her at all. As of today, she has an 89 in her English class (never taken a formal class before, so she is learning what is expected of her) and a 96 in her Art class. (which isn't all fun and has quite a bit of art history in it.) My point is, don't worry. School curriculum repeat material over and over. Most kids with PANDAS are smart kids and they will adapt and catch up quickly if they re-enter public school at some point. These children are already filled with anxiety. Make his life as sweet as it can be while he is sick. See the learning in everything he does, from watching TV (even cartoons touch on history, etc.) to talking, being read to, helping you at the grocery store, playing games, etc. Seriously, it just doesn't matter that much. If you have to fudge the records in your state, fudge them. But in my state, I've found a teacher who believes like I do, that learning happens all the time and if you foster a love of learning then everything will fall into place. She is supportive of the way I homeschool. Read the laws for your state carefully and if you're evaluator is rigid, find another one.

We just found out that as of Jan 1st, we no longer will have United Healthcare, but will have Anthem for health insurance. Has anyone gotten IVIG coverage with Dr. B with Anthem when their child failed a pneumococcal antibody panel and had an elevated C3d? I'm hoping one more will get my dd to 100% but worried like ###### that if she needs another, we won't be able to get one after the first of the year.

My dd, who I believe is strictly pandas (still awaiting igenex test results but not expecting positive based on symptoms and benefits of hdivig) failed all 12 of the pneumococcal antibody panel. She had elevated C3d and normal aso and anti-dnase b titers.

Sorry that I misread that and got off track. yes, I would think if the kids do well off antibiotics, that the most recent infection is gone. My only concern with my own child going off anitibiotics would be that she would relapse if infected again, even more often than she might while on prophylactic antibiotics. I guess the key will be to get them into such a good place (through ivig) that they don't have worsening pandas symptoms when they get an infection. Can't wait until we are there.

Do you know what dose IVIG he had? Low dose can actually worsen pandas symptoms for some kids but high dose (over 1.5g/kg) has anti inflammatory effects and seems to work better with pandas kids in most cases. I'm so sorry to read your of your suffering and hope things turn around soon.

this is where I wish I had more medical background but I'll throw some stuff out there and maybe someone can comment on it. But I think that some antibiotics can help with autoimmune symtpoms even after the infection is gone because they are immune modulating. Not exactly sure what that means though I think I've heard it mentioned before. Maybe someone esle can comment on that.

So glad to hear it. It sound like she likely had some infectino brewing and you got to it quickly. Do you know where she typically gets a strep infection? throat or sinus or other? My dd got a sinus infection post 2nd hd ivig and she was spiraling downward till we added Augmentin back in and then 24 hours later she woke up saying she felt SO much better. Then over the next week she stayed the same then the following week things began to improve again. Best of luck to you!

Before 4 years ago, my dd was the most carefree kids ever. And all her symptoms did not come on over night. It started with some anxiety and ocd type questions and then gradually worsened. After a months of therapy we put her on zoloft and it did seem to ease her anxiety. She was okay for 6 months. Then she worsened. We upped the zoloft and she did okay for about a year and a half, then her symtpoms EXPLODED. She was completely incapacitated by ocd and developed vocal and motor tics. After starting augmentin, her anxiety reduced at first. Then we added in Zith and her vocal tic went away in two days. Then we did short steroid bursts with good outcomes. Then we knew how good it could be and eventaully did longer steroid tapers, then eventually ivig because the benefits of prednisone were not permanant. Yes, she had rages, extreme seperation anxiety, and milk maid grip, but never noticable hand writing issues because she really just didn't write and its always messy anyway, so it was hard to tell. This is day 5 of reducing celexa as well as 5 days post ivig and she's had a slight worsening of symptoms but nothing alarming so far. I have no idea if she will need future ivig's but our Dr. seems to think that its not likely after one or two more. He wants her to be back to 100% and stay there. His educated guess was that she would not need more but we won't know that till we get there, I guess. So far, everything he has said has been true for my dd. I really trust him and feel such a sense of gratitude for him and all the doctors who have helped us on this path. Each one helped us in some way. I will be forever grateful!

Here's hoping, but we're planning on another, just in case. It really depends on whether she stays infection free, I think. Right after the last IVIG, she got a sinus infection which set the healing back. She still gained in those 8 weeks over all, but not nearly as much as she gained after the first one when she was infection free. But she's well enough to try to stop using the Celexa and we're back on just Zith after adding Augmentin back in when she had the sinus infection. The doctor did mention that if we can't keep her from getting repeated sinus infections, that he would recommend allergy shots because he believes it is her allergies that make her sinuses such a welcome place for bacteria to grow. I am so thrilled with her progress. I'm hoping cutting back on Celexa goes well. Last night was slightly more difficult (3rd night reduced) but this morning was a good morning. Last two times we tried to cut back, on the third day she completely fell apart. Nothing like today, but the nights will really be all telling. I'm hoping and praying it goes well. We're also awaiting Igenex results but neither the doctor or I feel that she will be positive based on how well IVIG has worked as well as prednisone (in the past) momaine- Can I ask how long after IVIG you did the Igenex test? 7 weeks after

Here's hoping, but we're planning on another, just in case. It really depends on whether she stays infection free, I think. Right after the last IVIG, she got a sinus infection which set the healing back. She still gained in those 8 weeks over all, but not nearly as much as she gained after the first one when she was infection free. But she's well enough to try to stop using the Celexa and we're back on just Zith after adding Augmentin back in when she had the sinus infection. The doctor did mention that if we can't keep her from getting repeated sinus infections, that he would recommend allergy shots because he believes it is her allergies that make her sinuses such a welcome place for bacteria to grow. I am so thrilled with her progress. I'm hoping cutting back on Celexa goes well. Last night was slightly more difficult (3rd night reduced) but this morning was a good morning. Last two times we tried to cut back, on the third day she completely fell apart. Nothing like today, but the nights will really be all telling. I'm hoping and praying it goes well. We're also awaiting Igenex results but neither the doctor or I feel that she will be positive based on how well IVIG has worked as well as prednisone (in the past) Momaine, Can you remind us how her 3 IVIGs were spread out? She had 1.5g/kg every 8 weeks for a total of 3 times so far. Her last one was Monday and Tuesday of this week.