bigmighty

http://oxford-ct.patch.com/articles/oxford-high-students-cook-for-ronald-mcdonald-house

Huh? We just finished the NIH IVIG clinical trial. They recommended remaining on antibiotics until age 18 - possibly 21. They also strongly cautioned against SSRI medications.

I seem to recall being told that biaxin is used to combat the cystic form of lyme. Not sure I'm getting this right - heard it from a doc about a year ago. But I believe she told me that a few days into a course of biaxin, the lyme would start reproducing like crazy in an attempt not to be destroyed. I was told that this would make the child feel awful and behave as if having a major flare-up. If your child had some benign lyme, that could be one reason for what you are seeing.

How in the world did you or the doc know to look for strep with no symptoms???? And to look 17 times????? Once when DS was three, he was acting oddly, so I took him to doc to check for ear infection. No fever, no sore throat, no real symptoms, but he was definitely not acting like himself. Doc said that strep was going around - like she had seen 10 cases that morning, so she took culture just to rule it out. It popped positive. From then on, about every six months or so, DS would act that same atypical way and I'd go in and request culture. I had the only four year old in town who would wake up in the morning and say "may I please have a throat culture?" He just knew when he was sick. Obviously, looking back, he has had PANDAS since he was about three. We just were so quick to race to doc for antibiotics that it never went further than a week or two of being out of sorts. That is, until last December...

DS had strep 17 times as a young child and never once had a fever or sore throat.

I have heard very good things about Dr. Lisi Levishon at Weinfeld Group - http://www.weinfeldeducationgroup.com/weg-staff.html. I was given the impression that the cost would be over $1k for testing and that it was not covered by most insurance, though.

I'm confused about/interested in something. I have spoken with two psychiatrist ERP specialists who have pandas patients. Both indicated to me that the worst thing a person with any OCD tendency can do is to "give in" to the desire to perform a ritual or behavior. Apparently, doing a behavior can give an actual serotonin rush that is rather addictive and makes a person want/need to do the behavior the same way repeatedly to get the brain chemical pay-off. The belief is that ERP is something like helping a person to quit smoking. Even if you wear a nicotine patch, you still crave the physical activity of holding the cigarette and inhaling. In addition to having been addicted to the nicotine, you are addicted to the accompanying smoker behavior and get an actual calming rush when you go through the physical motions related to smoking. So it is very hard to stop. I am under the impression that continuing to do any OCD behavior is embedding the behavior and making it much more difficult to stop doing in the future. I have been told that, even if the medical side of treatment is 100% successful for PANDAS patients, they still have an extreme amount of emotional work to do in order to unlearn the rituals they actually chemically crave - even after they are treated and "well." I just listened to an audio clip on Saving Sammy website. Sammy mentions that the most challenging part of recovery was ERP - and stopping himself from doing his compulsions (6 1/2 - 7 minutes?). But he also states that the best help his family was able to give him while going through his illness was that they left him alone and gave him the space and time to perform all of his desired rituals and compulsions (2 minutes). So, the professionals are telling me that we need to nip everything in the bud and not get the rituals embedded in the first place, even if the child is still medically sick. But the recovered child is saying that the only thing that a parent could do that would be helpful to the sick child is basically to do the opposite of that - to let the child have time and space to do the compulsions. How would one know when a child with multiple embedded OCD Pandas-caused behaviors is well enough to make the switch from "parents need to be supportive and let me perform my rituals" to "child is now ready to start attempting to eliminate behaviors?" Since it seems that most children with embedded OCD behaviors would WANT to hang onto them, wouldn't there always be resistance to ERP? As parents, do you just magically know when your child is ready to make this transition? audio clip - http://www.savingsammy.net/sg_userfiles/Sammy_QA.mp3

Glad to hear the good news. Can you tell us, please, what his main symptoms were and what recovery process was like? Did you do CBT/ERP? Thanks for posting. Best, Suzanne

I called the last week in Oct and we have an appt next week. So, for us, it was only six or seven weeks.

I am glad you still have the appt. w/Dr. B. set up. Sorry about the study.

From the day they received my initial phone call to the day DS entered the hospital at NIH for his 1st visit was three weeks. They returned that first call within 48 hours, sent me forms/paperwork to complete the day after that. I turned those around fast and fed-Xed them up to Yale. They had a couple of conference calls within one week. Within two weeks of my initial contact, they had called me back to say they would like to arrange an in-person meeting. My 1st contact to the study was 4/10 and DS's 1st visit to NIH began on 5/1.

From the day they received my initial phone call to the day DS entered the hospital at NIH for his 1st visit was three weeks. They returned that first call within 48 hours, sent me forms/paperwork to complete the day after that. I turned those around fast and fed-Xed them up to Yale. They had a couple of conference calls within one week. Within two weeks of my initial contact, they had called me back to say they would like to arrange an in-person meeting. My 1st contact to the study was 4/10 and DS's 1st visit to NIH began on 5/1.

Yes. Maybe 30 minutes to an hour after ingesting corn he'd become a totally different person. Light switch different. Somebody we did not recognize. Bigmighty, so did you see an almost immediate reaction to the corn when he was younger then? I am under the impression that it could take days to react to a food, but perhaps I am wrong about that. I wish this all felt like more science and less mystery to me. I like the idea about testing and observing - idea could be very useful with the long holiday break coming up in December.

Hydration is key. DS had a very significant and long-lasting headache after the first IVIG. For the 24 hours prior to the 2nd IVIG, we were told to give him at least 8 ounces of liquid every hour while he was awake. After the 2nd IVIG, the docs ran IV fluids for an hour. He was fine. No symptoms whatsoever.

Forgot to add - DS's corn sensitivity resolved fully and completely after his 2nd IVIG in June. When he got strep in July, it returned in full.

When DS was 3 (now 13) we realized that anything containing corn made him become wildly out of control. He has always been very low-key and easy going. With corn, he runs around in circles smacking himself in the face. A couple of taco chips used to be enough to make us worry that he would race out into traffic. It was astounding to see the difference between DS on and off corn. We had him allergy tested for corn and it was negative. However, it was obvious that corn was a significant problem. At this age/weight, DS can have limited corn if he has consumed a meal first (like one twizzler red licorice after dinner). But if he eats too much corn or eats it on an empty stomach, he struggles to keep his behavior within the bounds of acceptable. So far, you are the only other person we have heard of in 10+ years that has experienced corn-related metabolism challenges. The only thing I can think of that you could do with respect to tracking the symptoms is probably to keep a journal during a period of time when there is little chance for outside influence - like a long weekend - when there is no corn introduced whatsoever. Then introduce limited corn and see what happens and document. Best, Suzanne

When DS was 4, he was in OT therapy. The therapist requested that we try the Wilbarger brushing protocol. Basically, you rub the kid's arms, legs, and back with a brush that looks like a mushroom brush (very inexpensive- costs a couple of bucks). Then you briefly do joint compression. DS was in OT for dysgraphia, and brushing did not help, so we stopped. I never thought much of it again (DS is now 13). But a couple of days ago, I saw a brief article mentioning research into saliva cortisol levels and wilbarger brushing. A couple of other articles referenced anxiety and OCD being tied to cortisol and there was one article that mentioned frequent restroom trips sometimes resulting when cortisol is high. The brushing research indicated that cortisol was lower after brushing. I am just wondering if you got yourself a brush and tried to squeeze in brushing a couple of times a day (if your DS is willing) what it could hurt to give it a try. If you told him that, with brushing, some people release less of the stress hormone that makes them feel the urge to rush to the restroom, would he give it a try? It would cost practically nothing and take less than 10 minutes a day. Honestly, I may be grasping at straws here, but it popped into my head as I was reading your post and I thought it couldn't hurt to share. I am so sorry he is experiencing the urge to use the restroom frequently. I hope you find a way to lessen that unpleasant feeling for him. Best, Suzanne

I am so sorry about the symptoms and also the school/counselor situation. Have you thought about writing some of your son's insights down in a journal that you keep for yourself? There may be times when it will be helpful for you to go back through and reflect on his thoughs yourself - or to remind him of some of them. Also, there may be times when one of his insights helps when you are meeting with a future year's teacher or counselor. My vote would be to document and save his wisdom until there is someone appropriate to share it with. Hugs - Suzanne

Yippee! Anything you are willing to share will certainly be useful. Congrats on this success. Best, Suzanne

I was told that we could not remain on antibiotics that might be considered to be at a "curative dose" level and were required to switch to a lower prophylactic dose. No idea what all they specifically viewed the "curative" properties of higher doses of antibiotics to be. Sorry. They did not elaborate.

How have you been able to decide which expert advice to go with when you get conflicting recommendations? So far, we have had 10 medical professionals involved in DS's care during the past 10 months, since diagnosis. Half insist that tonsils must stay in, half want to remove. Same divide pretty much goes for SSRIs, remaining in a school environment, CBT/ERP, pursuing additional IVIG, which antibiotic to use and at what dose, whether supplements are beneficial, etc. It is very confusing. There are times when I think I am simply choosing what is convenient for me, rather than what is best for my child. I certainly read up on all of these topics. But when the literature is as divided as the expert opinions, I feel like I may as well just be tossing a coin. Then you never know how long to go with choice A, if it does not seem to be working, before possibly pursuing the opposite of A. I also wonder if, at times, I am getting to the point where I would simply shop for whatever specialist told me what I wanted to hear. And while, on some level, I do know my child's medical situation better than anyone else, I don't have the answers and could use good solid medical advice. But I have been getting whiplash from the conflicting good solid medical advice I have been getting. How do you usually figure out which expert opinions to trust? Thanks. ~ Suzanne

Forgot to add - the prophylactic antibiotic in DS's case was azithro 500 mg weekly. They wanted DS to take it all at once, but his stomach would not tolerate it. So he took 100 mg daily on week days. In our case, the antibiotic was chosen because, at the time, there was a suspected sensitivity or allergy to amox. After DS got strep again, we did the allergy testing and ruled that out. The reason for the very low dose of antibiotic is that they need to make sure it is at a low enough level not to offer possible curative benefits, that might be confused with benefits from the IVIG.

Hi. Wanted to introduce myself and thank everyone for the assistance and information. DS (recently turned 13) just finished the NIH clinical trial. After the 2nd set of IVIG infusions, he was 90+% improved. In addition to all of the OCD and anxiety going away, DS’s life-long hypotonia, sensory integration challenges, and sensitivity to corn all disappeared entirely. It was amazing! We were given prophylactic antibiotics by NIH and told that since DS would not get strep while on the medication, all would be well. Unfortunately, DS got strep 3 ½ weeks later (that was in July). Once he got strep, he was significantly worse than before we started with NIH – even after the strep was treated. Presently, DS is in a holding pattern on 1,000 mg keflex daily plus ibuprofen 3x daily – plus probiotics. He is doing about 40% better than when he had active strep, but it is very much tied to the medications. Even taking a pill an hour late results in a noticeable decline. Obviously, there is no way of knowing if the improvements we saw through the NIH clinical trial would have remained. But it is hard not to wonder what might have happened if he had not gotten strep. DS is just starting with a wonderful CBT/ERP therapist. we have an initial meeting with Dr. B. in December to see if one more round of IVIG is a possibility. Anyone interested in specifics about the clinical trial is free to e-mail me directly. Best, Suzanne

I didn't realize you were there now! I hope all goes well. Call me when you can to catch up. Glad things are going well, so far and hoping that all continues to be so!