tpotter

Thanks so much. I think I will ask our dr. to check my son's sinuses again, too. It started in his ethmoid sinuses!

What about sacchromyces boulardi (or just sacchromyces?) We were told to take that by Dr. K. Is Sacchromyces strep?

You're welcome. I would ask your dr. If s/he doesn't know, ask for a referral. Ask if you should see an allergist/immunologist, or someone else. But, from what I know (I know 2 children with EE, and my own children were tested for it...negative, thank goodness...that's the stomach one), it can indicate something serious. So, I wouldn't ignore it, but certainly check it out a little more thoroughly. Good luck.

They are a type of white blood cell, and when high, do indicate allergy. The main thing I've heard it with is: Eosonophilis Esophagitis (EE), which causes a person to have a lot of stomach problems (caused by allergy). In fact, to figure out what is going on, and then tx it, it is frequently necessary to do an elimination diet. If your dr hasn't already, ask if it is coming from the gut or somewhere else. Then see an allergist/immunologist, and if from the gut, a gastroenterologist, too. If you have EE, it definitely needs to be treated. Good luck.

Ooops...had a little problem there.

I don't think the PEX helped much with the OCD. But, a lot of parents are saying there is residual OCD. It's hard to know how much is PANDAS, and how much is other stuff (my son is also diagnosed with Asperger's Syndrome. I am in the process of finding someone who does ERP to work with my son. Other families have apparently found great success with that. But, the PEX definitely helped with the rages, tics, mood swings, and even not getting sick (immunomodulating effect). He was sick 32 days of school in 2008/2009 (he was dx by Dr. K. in 3/09). This year, he's had, maybe 8 or 9 absences, and 5 days was for the H1N1 flu.

I'll have you know that 4 years later my son actually went to sleep away camp for a week (he has now gone 2 years in a row) without ANY behavioral problems. In fact, he won the award for "most polite" one year! Having a child who is different is often painful and lonely. In the end, though, what really matters is person your child becomes. I have learned that many of the mothers who would not let their children play with my son when he was younger now call me for advice as their children have presented with challenges along the way. I wish you well on this journey. Thank you for giving me hope about camp. We have never been able to do it, because of all the fear of oncoming symptoms.

Oh my....this is just like me. My son was already sick, but we didn't have the dx,yet. It was only after our move here that we found out, and with all the time I spent trying to get dx, tx, school district issues, pulling him out of school, etc., etc., I have no close friends here, either. I feel SO much better (in a very strange sense...which only you guys can really understand.) Yes, I totally agree...this is very cathartic. Thank you all.

Does anyone know where I can go in Texas for IVIg. We are fixing to start the approval proces but I am not sure where to go. I would love to go somewhere there is a pediarician on call not just a center. There's an immunologist in the Dallas area I heard about. If you can't find him/her, contact me directly, and I'll check some sources, and find out for you.

Dr. L. She's in-network, and only a 2 1/2 hour car ride. Insurance paid.

Yes, my 16 yo son was dx by Dr. K. last year. We've done 1 round of PEX, which actually helped with almost everything except the OCD. Rage attacks have not been as bad. We had tried some SSRI's (not for long, though,) and they did nothing. We are now planning another round of PEX and/or IVIG. He is also on 1000 mg of Augmentin XR at this time. That's GREAT that your dr is willing to arrange the IVIG. I wish I could get ours to do it.

My boys are 14 and 17. We don't know for sure when 17 yo got sick, but we were lucky that 14 yo was more classic symptoms, and we found Dr. K, or we would never have figured out that 17 yo didn't just have "psychological problems", such as bipolar (he was already hospitalized once.) SSRI's did NOT help, and Dr. L. has testified to that at our Due Process hearing for school. Now, for the part about the learning problems (focus, attention to task, memory, math problems, etc.) As I mentioned, we were in Due Process (3 years...and trust me it's NO fun...may just be wrapping up, and we didn't get everything!) It does get worse if you don't deal with it. This horrible disorder does affect their ability to think. When my DS 14 took his first round of abx in Jan 2008, his response was: "my brain is compartmentalizing." This was in response to my question..."do you feel differently?" because I could actually see a massive change! After IVIG last June, we had a somewhat similar response, but when it was obvious he needed more (remember he has also been sick for 6 years now, and is post-pubescent,) we went with PEX. On the way home from IVIG, he suddenly started telling me how clear his brain was, how he suddenly was seriously interested in doing something that he couldn't even fathom doing the day before. It was even more dramatic after PEX. We are getting ready to repeat one of the two (preferably PEX, and then I'd like to followup with IVIG, to hopefully improve the T-cells, and close the blood brain barrier, but we're waiting on Dr. L. for final decision as to which.) Anyway, in answer to your concerns: 1) yes, I believe IVIG does work, and if abx is not sufficient, then I would jump at it, if you can. PEX also works, and I believe works faster in many cases, because it cleans the toxins out of the blood. As I said, I would like to do PEX followed by IVIG. 2) I firmly believe that we owe it to our children to get whatever we can to help them (no it is not a "cure", but sure does help a lot.) School could get nearly impossible later, and I do believe you'll regret it if you don't do something now. Good luck.

Yes. It's a big problem. We ended up having to pull our ds 13 out, and fight the school district for 3 years (1 1/2 years while in a private school,) because he was too sick to attend, and school refusal...plus phobia was out of control. We were lucky, though, and found a school in our area that caters to children who have severe anxiety and school refusal. They understand that children can't learn while they are too stressed to learn, and my ds grades are back up to A's and B's (had dropped to F's.) Good luck. If you contact me directly, I can give you more information about this school (I don't know what part of the country you are in, but maybe you're somewhere near me.

I totally feel for you. Had an even worse experience at CHOP (Children's Hospital of Philadelphia). When my DS was hospitalized last year (admitted via ambulance as a transfer from local hospital for 4 days with Syd. Chorea, Scarlet Fever, 104 degree temp, and suspected ARF.) I told them he was already diagnosed with PANDAS. Neurologist told me it was "voodoo!" I called all the other neurologists...they refer only to psych. Went to immunol. there (after being told that they DO tx PANDAS.) Left there in tears (obviously they don't.) Personally, I wouldn't spend time with Dr. T. (my personal opinion based on experience...and it is all I will say online.) 1) If you have Pedi and Immunol. in Dallas who are seeing and treating PANDAS, I would go there (if they wait time is fast.) 2) Phone consult with Dr. K. would be good if you have someone locally who will follow his directions (he will consult with your dr. afterwards, and tell him what tests, meds, etc. to do.) 3) I don't know if Dr. B. can do anything more for you than Dr. K. (only because I haven't seen him...but have heard wonderful things about him.) 4) Dr. L. is fantastic, and can do PEX if she thinks it is warranted (only person I know who will do it.) Personally, I prefer PEX to IVIG, but again...my personal opinion.

Fantastic article, Buster. Thank you so much for sharing.

I read your emails, and feel so sad (and I totally understand.) First, you haven't ruined him...don't beat yourself up over this. Trust me, I've been through a lot of the same with BOTH my boys. We don't know, and what we don't know, we can't beat ourselves up over. The best part is that now you know, and you CAN do something to correct it. You can't even begin to imagine how much it will help him if you do talk to him like Peg suggested, and tell him you didn't know before, but now you do, and you are going to help him. Keep telling him that, so he really gets that you mean it. My boys started coming to me for help when they realized I really meant what I was saying. Secondly, as far as academics is concerned. This is huge. My DS14 was in the same boat. We have been fighting our school district for 3 years (finally in Due Process.) Very, very nasty case, b/c they refused to honor a support plan that would have stopped most of the terrible anxiety that finally caused him to get so out of control he couldn't even think about school without having a panic attack. Grades were down to F's, he was hospitalized for 4 days with Syd Chorea, high fever, scarlet fever and PANDAS exacerbations, and the district STILL refused to help him! We finally put him in a very expensive private school that caters to children with anxiety and school phobias, and although he does miss a fair amount of school (because he's still sick), he finally likes school again, and grades are back up to A's and B's. We are still fighting the school district to get our money back, because we have borrowed money, used retirement money, etc. to pay for the school, BUT, as I promised him...we would do everything we could to help him. So, for your son's benefit, go straight to him, tell him that you are sorry, but didn't know, and you want to help him as much as possible. don't wait for him to come to you (the OCD might not let him), but rather constantly go to him, give him a hug, and ask him how his day is going. Ask him pointed questions if you need to to make sure his needs are being met, and see if there's something you can do to help him. He will so appreciate that, so that in time, he may even forget about everything you *didn't* do for him when you didn't know.

When my son's IgA came back low (not nearly as low as your dd), I had to consult with an immunologist for Dr. L. If Dr. K. is saying no IVIG, I wouldn't do it. But, Dr. L. does PEX. Try to get an appointment with her.

Amy, I would definitely either do the f/u with Dr. Latimer or go to Dr. B (I know he's closer.) The only thing is that Dr. L. has already seen her, done everything else, and may have a better idea what to do at this time (I know that Dr. B. is supposed to be great, too.) Maybe you could get an appointment with Dr. B. (if it takes a long time), and in the meantime, do the f/u with Dr. L, so she gets the tx. She may need a steroid burst and/or PEX or IVIG at this point, and you need a good dr who can tell you (Dr. L does both, while Dr. B. does IVIG only.)

Melanie, I'm glad you have an appointment with Dr. Latimer. It will be really good for you to have her opinion. Let me know how it goes.

I am having no trouble voting for myself, but I signed up both my sons and my husband 2 days ago, and had no trouble getting them in to vote. Then, yesterday, it said it didn't recognize any of their information. So, I clicked on reset. I have now reset them 3 times, and still can't get in. Couldn't vote for them yesterday. Any ideas? There's nothing to click on for help.

I 2nd everything Mati'sMom just said

Our pediatrician was kind enough to give my DS 14 steroids yesterday, because I told him that we really needed to calm his symptoms down while we wait for the PEX he's scheduled to get, hopefully in the next few weeks. he's also on abx. He would call Dr. L, but she's been a bit hard to get hold of lately, so he did prescribe them. Dosage seems a bit high, and it's not tapered down (like mine are for my asthma.) The pharamacist said that it is usually tapered down. He is on 3 10 mg pills twice a day of prednisone a day for 7 days (that's 6 pills a day...more than my max dosage). The pediatrician wasn't sure how much to put him on, and I don't want overkill. Any ideas? Also, typically, how long is a steroid burst? The only time we have ever done one was a year ago, when Dr. K. was first diagnosing him. Thanks.