momaine

My dd had quite a set back with the H1N1 shot last year. I do not plan on repeating it. I'll take my chances with the flu.

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)

I want to share our good news but I am also afraid that the minute I post it that things will go to ######. Dd (14yrs and suffering with PANDAS for 4 years now)is 3 days post 3rd HD IVIG and she is doing fantastically well. If I had to give it a number, I'd say she's 85 percent better. We started decreasing Celexa 3 days ago, which is a little scary. In the past on day 3, she's fallen apart completely, but she's in such a better starting place, that I'm hoping that won't happen this time. I'd be happy to answer any questions. She's in school with a busy social life and she is so happy. we were in despair this time last year.

Dr. B did a C3d test which if positive, can show that an autoimmune process is going on which may help get it covered by insurance. He also does a Pneumoccocal antibody panel which my dd failed and combined with the C3d test and synmptoms, if was enough to get the IVIG covered by insurance which has made a HUGE difference for us. My dd just had her 3rd HD ivig with Dr. B and she is doing marvelously. I cannot put into words how thankful I am to him and his staff for saving my daughter. It makes me cry to even contemplate what life would be like right now without having had those IVIG's. She just had the 3rd one yesterday and the day befroe and so far no headaches or other side effects and so far no worseneing of her ocd symptoms either. She's in school and she is doing things she just could not do before. After years of needing me to sleep with her, she has slept alone for a month now. I tuck her in, address a couple minor ocd issues, and she stays alone and goes to sleep. Today she rode a horse at the barn where she normally takes lessons but for a long time she couldn't ride if no one was around due to multiple ocd issues. Today she went up there and did everything herself and no one was around to make it easier. I asked her if her symtpoms has worsened today (due to just having a treatment) and she said no. Hopefully it'll stay that way. And we are reducing the celexa now too. that didn't go well two previous times we tried, but hopefully this time will be different because she is SO much better to begin with.

Yes, our insurance covers it. Well, except for travel expenses. ;P Can't have everything, right? Angela

Best of luck to you. So glad to read your update.

My dd also got a cold that set her back. It was the second week post HDIVIG#2 and she worsened slightly. But the following week she worsened significantly and we figured out she had a sinus infection. It took a couple more weeks before she started making forward gains again and now only slowly, but mostly steady with a bad day (or half day like yesterday) here and there. I had to laugh about your eating at the restaurant comments. I could totally picture you scarfing your food in private only to be discovered with a guilty look on your face. I know it's stressful (understatment of the year) but your family here on latitudes does understand. Which tests can your son NOT take for the IGENEX testing for Lyme while he is on antibiotics? I'm now wondering if I just threw away some money as our doctor told us we could have the lyme and co-infection panel done while still on antibiotics and my dd had the draw on Tuesday. From what I've read, esp. if you son has had this for a long time, 8 weeks is a litlte too early to completely beat this thing. I think you will probably have to be patient and do your best to keep any infections of any kind at bay. That seems to be the ticket. Best of luck to you.

We use Diflucan to address the yeast issue. Prescribed by our dr. Have you had allergy testing done? the low level head aches and stomach aches were they only symptoms of allergies that my dd complained about. The amount of phlegm she had running down her throat caused the stomach aches and the heach aches were sinus headaches. She is on Singulair to help control the allergies but at this time of year she's still having some phlegm issues because of the pollen levels. We had no idea she had allergies because she had no obvious symptoms like red itchy eyes or running nose, etc.

The nurse who works in the infusion center is really fantastic with the kids in there. She is very attentive and caring. I can't say enough good things about her. We travel 6 hours to have it done there. I've thought about trying to have it done locally, but I've decided that knowing that we in in such good hands is worth the drive. We feel at home there and know that they will use every weapon in their arsenal to make sure she had as few side effects as possible and that she is comfortable.

Hopefully that will be the ticket for continued improvement. Best of luck to you.

Unless you can find a doctor in your area who will follow Dr. K's protocol, (maybe an immunologist?) you may have to travel to see him. When your antibiotics for your son run out, go back and have his ears rechecked and see if they will give you another 5 days. Good luck!

Unfortunately for my dd, the benefits of prednisone did not last. She did however suffer from PANDAS for over 3 years before being diagnosed and treated with antibiotics and prednisone. It was extrememly helpful though while we waited for IVIG, to be able to use prednisone to keep the sanity in our home. It really was a wonder drug for my dd. Angela

Joan, You said your son is 16, right? These older kids who have suffered with PANDAS for years just may take more treatments before they see the benefits?? I wouldn't give up after one. I am so sorry your son and family are suffering right now. We've been there, done that. I pray that you can call family and friends to come over and help you through these tough times.

I believe our doc said that the slower the infusion, the less chance of side effects. If he is going to be there anyway, can't they slow the drip way down to help prevent side effects?

oh, and I wanted to second the suggestions to make a chart. List each bahavior that is troublesome then give it a number from like 1-9 each day. I did 1-3 noticable to me, but not interupting life. 4-6 interferes with daily life, but not debilitating. 7-9 debilitating. It made it easier to see a pattern. I'd add the numbers for the day adn could see when the good days were with a glance. I used Excel.

I know one little girl that was diagnosed within the first month and after a month of antibiotics she was pretty much back to herself. With my dd, who had PANDAS for 3+ years before diagnosis, within two days we saw improvements on antibiotics, but the prednisone took longer to see the benefits, though they were greater than with the antibiotics alone. The quickest was a week before we saw improvements and the longest was 13 days before we saw improvements. The improvements really only lasted until maybe a week after we stopped the prednisone then it was back to where we started. With the the first IVIG, the improvements lasted the full 8 weeks with one blip of worsening around 5.5 weeks post. She had a second one but got sick a week later and worsened before slowly beginning to improve. So, we're seeing improvements after IVIG #2, but very slowly. (with a bad day now and then)

I have a couple thoughts to throw out there. First, high dose IVIG is believed to reduce inflammationi while lower doses actually can cause inflammation. That is why they believe high dose works better for PANDAS because its also helping with the inflammation in the basal ganglia. Sometimes kids who have lyme as an underlying infection worsen on prednisone as well as antibiotics. With the antibiotics is because of the die off of bacteria flooding which initially worsens symptoms but that means the antibiotics are working. Could also be true with pandas if he had a present infection of strep and had a high die off, I would think?? The reason kids with lyme worsen on prednisone is because it lowers their immune response so the bacteria can take hold better. There is one lab that does a lyme western blot that checks all bands, including those that were taken out because of a lyme vaccine they were trying to develop and they didn't want everyone who was vaccinated with it to test positive for lyme so they removed some bands from the traditional western blot. Obviously those bands can cause problems or they wouldnt' have been trying to make a vaccine that would protect you from them. The lab that does that test is called IGenex. They can also check for other bacteria like babesia. (sp) If you do a higher dose IVIG in the future, I would suggest you ask your doctor for prednisone to prevent headaches and nausea. Our doctor also gives benedryl and Motrin to prevent side effects. Between those three things she did not suffer any side effects with two high dose (1.5g/kg) ivig treatments. I'm so sorry you are dealing with autism and PANDAS. I do wonder if some issues that you think are from autism are really pandas issues that will go away in time, with treatment for the pandas. I'd be interested in hearing more about what you learned (a web site maybe) about autism as an autoimmune disorder becasue I have a nephew and a friend's son with autism. One of them was developing normally till age two and I wonder if it was infection mediated. And his sister has a stutter which I've read can also be from infection or autoimmune, possibly, but never found anything that I could really share with them for information other than causual mentioning of it on PANDAS sites. Best of luck.

My dd got a sinus infection in the third week post 2nd Hd IVIG. It took a week back on Augmentin (along with the azith she was already on) for things to begin to improve. Though, 24 hours after the first dose of Augmentin, she stopped back sliding and symptoms evened out. My dd cannot be bribed or bought and she has difficulty at times taking medicine because of OCD issues, but when I keep pounding it into her head that she WILL MOST LIKELY gets worse without them, she eventually takes them. I stand there and hold them with the cup of water until she does. Once, in extreme frustration, I said, OK, I give up, don't take them. Get worse but don't expect me to be there to pick up the pieces when you won't even take your medicine. It wasn't nice but it had an impact and she took the medication. Sometimes though, she just likes to ###### and complain a little about having to take them. She just wants to be heard. It is so frustrating to have to take medication ALL the time. She just wants to be normal. I make sure she knows I 'm listening and that I empathise with her. Then she takes them more easily. Best of luck. The one thing that helps the most is that she does KNOW she is doing better because of them and she trusts that I have her best interests at heart.

My dd is 14 years old and she has had two hd ivig and she is willing to talk with him on Facebook and tell him how much it helped her. If you want to give him her facebook info, send me a private message and I'll send it to you. She is not 100% but admits it has helped a LOT and she's glad she's having another soon.

Have you tried Diflucan for yeast? It has made all the difference for my dd.

No, they are getting 1.5g/kg split into two days.

I personally witnessed Dr. B recently sitting inside the lobby in the main foyer of his office complex when a family came for their first consult and the child refused to go into any exam room. Dr. B, without hesitating grabbed two chairs and moved them into this open foyer (where the child would agree to go and he could talk somewhat privately to mom). You had to be there. It stopped me in my tracks when I saw this! It confirmed in stone what I already knew...that this man truly does this for the children. Your visit will go well. If you are going on Wednesday you will see him at his Stamford office (much, much smaller than his main office and it gets a little crowded) but he makes it work! Good luck (we will be in his Darien office at the same time for day one of Lauren's IVIG)! How is Lauren doing? We'll be there soon too. Good luck!

Not sure what you heard about Culturelle but I can tell you that if my dd doesn't take her Culturelle, she gets diarhea from the antibiotics. I am not familiar with the product you are using but if he still has yeast, you need something else. Our dr. put our dd on Diflucan as soon as he learned she was struggling with yeast. When she was having yeast problems, she also had a worsening on her PANDAS symtptoms. It's been crucial for us to control the yeast.

Yay! Pray things continue just as well. So happy for you!

This wasn't posted to me but I'd like to add my two cents worth. Dr. B figured out my daughter has allergies that make her sinuses a great place for infection to grow. He diagnosed her with a sinus infection on our first visit despite 6 months of doubled up antibiotics. It wasn't until we used his protocal that the infection abated. (allergy meds, sinus rinses and sprays, combined with the antibiotics) He did a vast amount of testing and figured out she has no antibodies to fight strep and he got our insurance to cover IVIG (1.5g/kg), which was badly needed. After the first IVIG she improved at least 70%. After the second one she got another sinus infection and backslid a bit but we quickly figured out what the problem was and treated it aggressively and she's back on the rebound and things are moving in the right direction again. Now if we can just prevent her from getting another one, we'll be doing well. She is scheduled for another IVIG in mid-Oct. and I feel confident that it is a good choice for her under the circumstances.