NancyD

Hi Dawn, Welcome to the forum! Back when my daughter had her first PANDAS episode (age 3) it looked more like perseverate behavior commonly associated with ASD, which made sense since she had ASD. But what she has been experiencing in the past year or two (at age 13) is very different. At first she had the obsessions but no cumpulsions. But now she has both. This is definitely closer to traditional OCD though I know it's associated with the PANDAS. As your son goes through prepubescent years and into puberty you may find the quality and intensity of the symptoms change over time. Unless, of course, you are able to eradicate the symptons before then. I thought I read in a previous post of yours that you were going to do IVIG? I hope it is successful for you! I don't know why the infusions have helped with most of the symptoms but not OCD. It's possible that the OCD will be the last thing to fade. Nancy

Hi Darla, Thanks so much for your suggestion. We tried inositol years ago but it really activates my daughter and makes the moods much worse. She's very sensitive to so many things. She can't take b6, b12, d, most probiotics (only bifido factor), and a list of many other supplements. Nancy

I just just googled "strep" and "horses" and, although horses can get strep it's strep C that they can get and is easily transferred from horse to person to horse. This causes Strangles, which is deadly for horses. But strep A is not a worry.

Wow...this is a lot to digest. Thanks, Vickie, for this very lenthy explanation! I will have to read it again carefully after a good night's sleep and see if I can begin to peel apart the layers of her ritual. And thank you for suggesting the books! Nancy

Thanks Susan...this is very helpful! I have already emailed the executive director at my daughter's school (it's a therapeutic-based school) to see if any of the clinicians there are familiar with ERP. They may not be but it's a good place to start. He used to work in the psychiatric department at a major Children's Hospital and has a lot of good contacts. And thanks for the suggested books. I'll order them. I've tried the "talking back to OCD" with her but that doesn't seem to work. Thanks again, Susan. Nancy

Hi Vickie, I can't say for certain, but I think it's a combination of the two: (1) one week until her next infusion and, as Sam suggests, the Igg is at its lowest level; and (2) I think she may be in the middle of a PANDAS episode. Should you increase the antibiotic every time they are in an episode even while on IVIG? If I am understanding you correctly, Vickie, I should not reassure her that her worry is nothing to worry about and I should not offer to tell the person to whom she wishes to confess about her worry, otherwise I am reinforcing her need to keep worrying? All of my training has been in developmental-based therapies and not in behavioral-based therapies so I am new to this. Thanks Vickie! Nancy

Although she's had PANDAS for 11 years, the OCD component has not been as debilitating as it has been this past year, so I am not up to speed with the OCD treatments like I am the ASD or PANDAS treatments. ERP is not a treatment with which I am familiar, so I just checked it out online and found a research study--it looks rather interesting. I assume it's a form of CBT. Thank you, Meg's Mom...I will look into this. It sounds like something that could really help. If I come up empty I will email you, but thank you! Nancy

Hi Sam, That makes sense. We do check her levels every other month and they have been running high since starting the infusions so they don"t want to increase dosage. That may be the same with respect to upping the frequency, but I will ask. How long have you been doing the infusions? Has your doctor indicated how long you will be doing them? Have you considered PEX? I would think Sarah would be a good candidate for it. Nancy

For the past year (and some days are worse than others), my 13 yo daughter has been beseiged with daily intrusive and obsessional worries (usually over something inconsequential though she blows it out of proportion) and the only way she can get rid of it is if she confesses her worries to someone. She wants me to tell the other person and then insists that the other person not talk with her about it. Sometimes that works and other times not. And often, if she does let go of that worry, she starts all over again with something else she is worried about. It could even be something that happened two years ago. It's driving her (and me!!) crazy. Does anyone know if the need to confess is typical of PANDAS? And if so, anything that works for you? After having a great year with monthly IVIG infusions she has had a bit of a setback. Some major meltdowns this week and a definite increase in her obsessional/intrusive worries with a need to confess. I figured she was exposed to someone at school with strep. I have consistently noticed a little bit of regression the week before her IVIG (and this is exactly one week before her next infusion), but this is considerably worse. I was thinking of asking our rheumatologist if we could do the infusions every 3 weeks instead of every 4 weeks. NAC is not helping, so I'm thinking of stopping that. Daily Motrin does help when she gets it 3x/day, but some days she skips lunch and the nurse won't give her Motrin on an empty stomach. I emailed her today to see if she could insist on her eating something and taking the Motrin. I'm also wondering if we should be upping her Pen VK for 7-10 days. She takes 250mg 2x daily. Would love to hear from anyone who has any suggestions. Thanks! Nancy

We've been taking NAC for a few months now and I have not seen anything. I was hoping... Nancy

Did Dr. Latimer say anything about horses?? My daughter is around her horse every day. This past week she had her first setback since starting monthly IVIG infusions last year. I figured she was exposed to someone at school. I never considered her horse... Nancy

My daughter is about the same weight and her doctor says she can have up to 600 mg motrin. Nancy

Hi Elizabeth, Prior to beginning IVIG infusions my daughter had not slept through the night completely since she was 3 (when she had her first overnight onset of PANDAS symptoms), unless she was sleeping in my bed. I gave her melatonin every night and that always helped her get to sleep but she would awake around midnight and then a few times after that. Since the second or third infusion (at the age of 12) she has been sleeping in her own bed by herself completely through the night. If Quinn was having sleep problems before I'm guessing what you are experiencing now may be part of the PANDAS issues. But that's just a guess. I sure hope it improves soon! Nancy

Hi Melanie, First, GREAT news that you were able to get coverage for the IVIG! I hope this is as successful for your son as it has been for my daughter. There are a few key things to keeping the headaches away: Before IVIG 1. Always be sure your son eats a meal and drinks lots of water before starting the IVIG 2. Be sure they give him Motrin and Benedryl before administering the IVIG. Motrin is better than Tylenol because Tylenol lowers the glutathione levels. During IVIG 3. Drink LOTS of water during the IVIG (I make my daughter drink ~ 16 oz per hour) After IVIG 4. Following the IVIG drink LOTS of water for a few days (I give my daughter a water bottle wherever she is) 5. Give Motrin every 6 hours for 3 days following the IVIG 6. If the headache is bad I also give Benedryl Hope this helps! Keep us posted on how Dan does. Nancy

This is GREAT...I concur...it's very valuable having this insight into PEX. Thank you! I wait to hear updates in the future. Nancy

Oh Melanie, I wish I could tell you I had a secret, but I can't. It took me years (and lots of appeals and advocating) to find an insurance company that would cover it and it was quite by accident that I found Harvard Pilgrim Health. As far as I have heard, it is the only insurance company that will cover IVIG for PANDAS. But I know there must be others. Most people do better if they can get their doctor to code it as something else that will cover IVIG. I know that BCBS (and many others) will cover it if the immune levels are low enough. Ours were low but not that low. Nancy Tell me your secret how did you get them to pay they havent turned me down yet but Im preparing myself

She does outpatient at Boston Children's infusion center. We're usually in at 11am and out by 3pm. It has become a very routine part of each month. I sure hope you can get insurance to cover, Melanie! Nancy

Interesting...thanks Buster. I suspected this and I don't want to switch unless I hear that others are having as much success with the others.

Sam, After I sent you my earlier response in another thread I went to look at Sarah's test results. The only test I don't see is the Pneumococcal Titers. Do they call it something else? If we were to take it now would it be affected by the IVIG? Her titers for ALL vaccines have been high eversince she was 5 so she has been exempt from all other vaccines and has not had one since. And, as I said earlier, her IGG levels were always low but not low enough to be classified as immune deficient. Do you want results prior to IVIG? Do you also want ASO and Anti-DNASE B or no? Nancy

This is EXCELLENT, Sam...thank you (and Diana) for doing this terrific work!! Wouldn't it be great if we could develop an in-depth questionnaire and start collecting data on all our kids -- data that could be used in a research study. Any ideas, Buster?? Nancy

Amen!

Here's a link to the DAN doctors: http://www.autismwebsite.com/practitioners/us_lc.htm

YEAH...GREAT news, Vickie!! Maybe you can educate him the rest of the way. Nancy

Has anyone tested the difference between Motrin, Aleve, and Celebrex in how it works for your child's OCD symptoms? Most everyone mentions Motrin and that is what I give my daughter, but because it has a half life of about 4 hours, a dose only lasts 6-8 hours. I am considering switching to Aleve or Celebrex so I only have to give it to her twice daily. I know Aleve is supposed to have an almost identical chemical structure (I don't know about Celebrex), but I'd love to hear from anyone who has tested it. Thanks! Nancy

Hi Sam, Yes, solely based on PANDAS diagnosis. It"s being coded as PANDAS and insurance is covering it. She did have low IGG levels but not low enough. She's had full immun workup a few times over the years. Nancy