qannie47

I know this is the last thing you want to hear...but I use the BEST behavior mod program out there. It works well for kids who are chronically sick, and keeps everybody else sane as well. I don't know what I would do without it. Howard Glaser, The Nurtured Heart Approach. It will help. Not make everything perfect, but it will see you through everyday. I've tried them all.

I think sensory issues are very widespread. I agree, differentiating between OCD and sensory could be difficult. That being said, I can see how a sensory driven behavior like wrapping one's self in a blanket, could run into an OCD need.

Ok, I am telling myself that if there really was something to worry about, somebody would have called instead of just mailing this.... All other tests for LP normal. Except for Two well defined "O" bands. The report went on to say suggestive of MS.........WHAT? But then went on to say not definitive, and needs to be collaborative with other tests. A note at bottom read, " Contacted patient's PCP (his peds doc?), and noted to him the 2 positive O bands. Because his Protein levels are borderline low and all other CFS tests are not remarkable, we do not find these bands clinically signifigant". When I researched on internet, 2 O bands can be indicative of MS. Anybody know anything about this? Also, it also stated that these O bonds are inhibiting "synthethis of Gammuglobin" which, when I read on that is all apart of the immune system, autoimmune, and effects the central nervous system.... So if not MS, could this be indicative of big picture of central nervous system issues caused by autoimmune issues that could be indicative of Pandas? This is an afterthought. UGH....what I really want to know is about these O bands though....

I would say we are a little over two weeks where I saw ds start to turn corner for the positive....He is still doing well....I have to remember that 7 year old boys are still 7 year old boys....when I take that into account, I would put him at about 90%, the remaining 10% are just little blips on the radar a couple times a day that he is self regulating himself out of almost immediately....Fingers crossed.

Well, you do want to know if the strep is gone....when my ds was first diagnosed with Pandas it took 6 weeks to clear up strep infection. Between each round, they had us wait 2 days with no abx before testing to make sure they were not going to get a false negative. Each time in between he tested positive, so they resumed abx.

mdmom, How did you get all those IVIG treatments covered?

I just re-read your IVIG post and I am going to take a leap and guess that he is HYPER-Sensory. My Hyper-sensory child HATED showers, face washing, teeth brushing, dressing, food textures were a problem, clothing, loud sounds, a room that was too busy, to loud too bright....this all caused him stress. I am wondering if his bathroom rituals are really about him agonizing about the feel of the water hitting his body, running over his face, etc...His limited food selections could be very much tied to textures: does he prefer foods that chew easily? Does he hate things that are a little tough and more likely to cause choking? Does he get stuck on wearing the same clothing? The clothing that he chooses, are they extra soft and very worn in? Do they tend to fit him almost perfectly in shoulder and waist? Is he a creature of habit? Wanting to sit in the same place most of the time, does he like things in their place? Does he tend to be on the neat side of the fence? Does he tend to be either overly warm or cold and choose clothing for that purpose as well? His classroom, bright lights, busy room, sitting to close to others could all be a problem.....Sensory OVERLOAD. Problems with Emotional Regulation are a BIG part of it....to understand my child's snarky, crabby mood, I asked myself...."IF I had to walk around the world in a wool sweater all the time on a 90 degree day, How would I feel?" On the flip side, Hypo-sensory could have similar problems but for different reasons.

Hi T.Anna. I happen to know a LOT about sensory issues....I have twins: one Hyper-sensory one Hypo-sensory. Here is the deal about the wrapping of blanket. Both my kids do that for different reasons. My Hypo (seeker) does it because he likes the sensory input. My Hyper-sensory child does it for 2 reasons. It is comforting and calming, but also, hypersensory children don't like to feel the blankent, jeans, shirts, shifting against their bodies. Example: Both my kids used to wear their belts EXTRA tight, until I learned about sensory, I always wondered why....My hyper-sensory did it because he could not stand the shifting of his jeans against his body, he also tied his gym shoes like ice skates for the same reason. His brother, Hypo wore the belt tight because he LOVED the pressure. It is important for you to distinguish whether your child is Hyper or Hypo, because the way things you can do to help Organize his sensory input will be different. If you would like more info, PM me. Great discovery...this could be related to his bathroom issues...........

Hi T.Anna, The IVIG was more recent if I remember correctly? They say that it takes 4-12 weeks for the fullest effects of IVIG to "do their thing". I would say that while we saw some immediate improvements with my ds, it was about 4 weeks where we saw the most improvement. I remember reading that with older kids, it can take up until 8-12 weeks. I also ditto PowWow about the 1-2 year healing period. I actually got that from the Horse's mouth, Dr. Swedo. Although I suspect none of this is news to you. In all of our parenting hearts, we just want to end their suffering. When they hurt, we hurt. It is easy to get discouraged, although in reality, none of us get discouraged easily, isn't that the truth. You just have to spend a couple of hours in this forum to experience the strength and resilliance. I am glad to see the many positives....so surely that is a good sign! Your son is in good hands with you as his mom, that is clear. You all will get through this....remember that.

Hopeny: Yes, that was what my Chiro recommend with dose. Also, when I researched dose for a 55lb child, the dose should be 100mg. We decided to start slowly. PR40 My child has never had sleep issues. So I cant honestly say how it affects sleep. But it makes sense that since it increases Serotonin, that it should be a big help in assisting sleep issues. NO, he is not sleepy during the day, but my child can be high energy so in my opinion, it would take a lot to make him sleepy. Dr. K was amazed that the benadrill did not knock him out faster when he was given it for IVIG treatment. Years ago, I took a SRI for depression. What I remember is that the initial increase of Serotonin made me sleepy the first couple of weeks, but then my brain adjusted and all I felt was just the calm.

I am sorry that you had such a disappointing experience at Mayo. I experienced much the same at Children's with my DS. Did you inquire about the Pandas? There is nothing more discouraging then having hope that is crushed by the professionals that we depend on. What I don't, will never understand, is why a doctor will give ten minutes of time to a life time of ailments. I have heard good things about Dr. Najjar, so I think you may find yourself in better, more compassionate hands....Best of Luck, and don't give up!!! I used to love to watch Medical Mysteries on TV, and was stunned with the stories about people who went through years of pain, written off by doctors, and then eventually, one day, it takes One doctor who takes the time and has the answers and sets their life back on course. So Keep the faith.

50mg once a day. he is 7 and weighs 55lbs. I got it from Bio-tech, they are suppose to be top notch. I may increase to 2x a day, I have to consult our chiro whom recommended them.

I started both my twin boys on the 5HTP about a week ago. Both are doing well with it. With my Pandas ds, it is difficult to tell if his improvement is solely the 5HTP (I doubt it) because he was already starting to look like he was ending his episode anyway before supplementing. That being said, I think it is lending support to mood stability and anxiety reduction. Where I can truly see the difference is in my non-pandas ds. This child (hyper-sensory), has always been my moody, oppositional, child. I can say that I have seen a marked improvement since starting. His moods seem more regulated, and his overall affect is lighter and happier. (of course we all feel better since the ending of other ds's pandas episode!!!) HA!! Seriously though, I feel like I am seeing good things with 5HTP. I assume that the effects it has on increasing serotonin would take weeks to show full effects. So this should be interesting....

Good to know bigmighty. I have decided to have that test done and was all set on paying for it. We have bcbs as well. Did your doc order it, or did you do it yourself through internet?

Hi Shelds, You have some great questions. I think that anybody who has a track record or ocd is well advised to check out the Pandas connection. Our specialist thinks that learning about Pandas is the "Tip of the Ice burg " and the connection to many neuropsyche disorders. If you cannot find a Pandas friendly doctor quickly, look thru this forum, and you will find many blood tests that your doctor can order to at least start the process of finding an organic connection such as Pandas. There is the Cunningham's Test, Lyme testing, ASO & other strep titer testing. Pr40 & LLMD talk a lot about the value of methylation and the 23&Me test, find their posts. Some recent research has shown a correlation between Dopamine 1&2 autoantibodies and neuropsyche issues. Im not sure if labs are available for that, but I would definitely do that if it does not require too much hoop jumping. Also, Webpediatrics.com is a very useful site for diagnostic criteria for Pandas. Keep in mind that in mho that while there is documented research opinions out there, I think that No one doctor knows all the answers, and that there is still a lot to be learned...I wish the best of luck to you, and commend you for taking charge of your own health!!!

PowPow: Really nothing different treatment wise. After we were discharged from hospital, I put him back on amox/clave 500 to finish out 14 days. (The hospital did not give it to him for 2 days that he was there because they did not see the value in it) Now he is back on old regime of 250 2x day. The only new thing to his diet is 5HTP started about a week ago. I lean towards thinking it was the abx that did the trick. I was told it will take awhile for the serotonin levels to increase from the 5HTP.

Thanks for the support guys!!!! Happy Happy Happy!!!

My ds has now had 3 good days of school. I am seeing increasing improvement of symptoms. 90% DAY! Tonight, when I got home from work, I was greeted by a child who had a smile on his face and a sweet lilt to his voice that over the last month I wasn't sure if I would ever hear again. As I tucked him into bed, he sang a song to himself, "I am Happy Happy Happy". Music to my ears....

WOW! It is truly people like him who make a difference.....What an amazing young man....

oops...missed the end of your post...can u use a topical? There may be ones that don't contain blood thinners.

What about an Epsom salt bath?

Has he had his Tonsils removed?

yes why? I do know thyroid came back neg. Is there a connection?

I have come to have a very high respect for what Strep can do....You posted pos Strep + concurrent Sinus infections. I have learned that Sinus infections are also Strep. So there is your history. It also appears that the Azalstine provides a fair amount of relief for your dd. If you look at some recent posts, you will find that some are finding relief from meds that contain antihistamines...I agree that you should pursue a possible Pandas connection. If you decided it is not applicable, you can rule it out. On the other hand, if caught early, you can save yourself a lot of time and aggravation running to 12 different doctors. The upside also is that it appears that with Pandas, the earlier it is caught and treated, the better. Good Luck!

PowPow, The curious thing is that the 3 sets of labs run at different times in his past and the low Lymphocytes were never even addressed.....I just realized these results yesterday when I finally received his complete medical file...it will be interesting when I get my hands on most recent labs done at Lurie's Childrens hospital 2 weeks ago. They stated that all labs were normal....