fiveam

Justine, I was using kirkman's zinc until I read that the stevia contained antimony! However, that was some months ago...maybe things have changed?

This could be true for us. Haven't ruled out lyme's BUT the bloodtests (CBC) don't really stack up for lymes. Thanks everyone!

Justine, You might be right. I was supp'ing Michael w/zinc awhile ago and it really helped w/his appetite...I didn't notice the sensitivity to light part but I'd guess he's zinc deficient....going to get some zinc. Thanks!

Kim, Thanks for your input and advice! I TRY to focus on the day ahead. I homeschool my 3 kids. My eldest has asperger's, my middlest (well, he's the one we're discussing here), and my youngest...oddly enough this little monster came into the world weighing 1.5lbs and she's the most "typical" of the 3...she eats everything, she sleeps by herself, she has tantrums but they don't last all day! Right now, however, I actually get up at 4am so I can mix up my son's smoothie...he still thinks he's drinking rice milk/hemp milk...if he thought any differently he wouldn't consume it! I think I'm going to take myself off the computer til after thurs except for the weather channel I'm going to take your advice. Work on lists. Focus on teaching maths. Focus on one step at a time. Going to put the CBC results in a folder and not look at them til I hand them to Dr L. Thank-you Kim, you've given me permission to shelf my worries for a few days!

T. mom, Thank-you for your input. My head is spinning. You see, most people seem to have these very easily discernible patterns...your daughter, one day A's the next day F's. and it's almost like day and night. IF my son has PANDAS it happened either somewhere around 18 mos-2 yrs when he was transitioning to table foods or he had a sensory integration disorder early on and PANDAS hit on top of this when OCD symptoms started showing up when he was 5. My son has had a feeding disorder since he was 18 mos but no one, not me, the therapists, the specialists who saw my son in the ER at CHOP (children's of Philly) ever saw OCD as part of it. "It" has morphed from a SID to OCD. We moved from NC to PA and we recently (last couple of months have moved to NOVA) . We were seen by therapists in NC and PA and while my son has overcome a LOT of sensory stuff, he can actually brush his teeth and swing on a swing, his eating has never improved. I am starting to think, odd as it may sound, that he doesn't need a feeding clinic but he needs some sort of anti-anxiety therapy....is there a name for this? Also if he has PANDAS will he have an interest in eating following a course of abx (too easy)....how do children who have become anorexic (don't think this is the right term for my son but the results have been the same)fare w/eating after treating the PANDAS? I am not really asking if PANDAS should be treated, treatment has worked for so many children, I'm just trying to get a handle on what exactly the treatment does. Thanks again for your support!

Thank-you for your reply. I guess that's really what I'm curious about "The implication being, if there are not treated as children, they are less likely to do well post puberty." Let's say your child is dx'd w/PANDAS and goes through rounds of abx and IVIG and the symptoms still recur. Are these children partially improved or does the PANDAS comes back as if never treated....i.e. do parents find their children to be 75% improved and they want 100% or are they improved and then the symptoms recur as if never treated?? Then when the child gets older the symptoms become milder or cease (if this is possible)...my question is how did the treatment in early childhood have a bearing on what occurred at puberty? I want to say I am not arguing w/the treatment...I certainly don't know enough to argue....I'm just trying to understand, so if my statements appear to be negative or argumentative they are NOT intended to be. Just trying to understand. I have a feeling that if my son is dx'd w/PANDAS he's going to be one of the recurring cases so I'm trying to prepare myself.

On the post puberty, no one really knows. By puberty, most kids have strong immune responses to GABHS and other illnesses and the incidence of GABHS drop off significantly. Peak prevalence of GABHS in children is between 5 - 10 years of age. So one of the items being measured could just be less exposure. If you are having creatinine level changes, you should be paying very close attention to whether your child is eating appropriately. Anorexia Nervosa is associated with PANDAS and was the primary scary symptom in our case. Go after this really aggressively as this is absolutely life threatening if your child's body weight is dropping rapidly. Not kidding, this is nothing to mess around with. Onset of Anorexia Nervosa and restrictive eating in children < 10 is extremely rare and almost always medical in cause. Whether Anorexia Nervosa in children between 10-17 is also medical in cause is unknown -- but AN is an OCD manifestation. The obsession can literally kill the child. I don't want to be alarmist and perhaps you were asking a more innocent question (or your child is older), but if this is Anorexia Nervosa or Bolemia get on it immediately. Buster Buster, We have an appt w/Dr. Latimer this coming thurs. Yes, I am worried sick about my son but his history is so tangled I am almost at a standstill as to whom to turn to. Ped says CBC and other bloodtests were normal even w/highs and lows. Creatinine was 0.43. normal range: 0.66-1.25 Ped said no big deal. Ped GI did these tests, saw my son at 13.5 bmi has not contacted me. We have a follow-up appt mid may. My son has restricted his diet since he was about 18 mos. It used to be all sensory, smell, taste, appearance....texture made him gag. He's been seen by therapists, specialists of various kinds, feeding clinics etc etc. More recently (last 2 yrs) it has been more a fear of swallowing objs, choking etc. He has been maintaining his growth height-wise 40th-50th percentile. For the past yr he's had a diarrhea/constipation cycle that wouldn't go away. His diet was largely cheese. It was making him feel sick....he's just about given up the cheese but hasn't replaced it w/anything. His weight went down. He caught a cold from the hospital when we went to get the bloodtests done....sort of a blessing because he couldn't smell the neocate I've added to his smoothie. He gets a multivit/min and the neocate, fats, protein, veggie juice, anything I can stuff into the smoothie w/out it being detected. This smoothie is his lifeline. He actually licked some vegetables yesterday because he liked their color. He does this occasionally but will never consent to putting these food items in his mouth and would certainly never ingest them. I gave up nagging long ago...4 yrs ago? He's 6.5 yrs now. I have never seen him look so thin. He cannot grip my hand w/any strength and there doesn't appear to be any strength in his arms. We will be going back to the ped next week. I'm thinking it has to be neuromuscular, autoimmune, PANDAS (?), something? The reason I am asking about the treatments for PANDAS is that I keep reading how people need to keep putting their kids thru courses of abx, steroids, IVIG etc and yet PANDAS still returns w/a vengeance. My son does not tolerate abx well and I HATE steroids. So I guess I was hoping that once we hit a certain age maybe he will outgrow PANDAS (if he has this)...yes, I'm naive.

First ?? From what I understand, for most PANDAS kids, the symptoms tend to wane post puberty. Are there any parents here who choose not to go the abx/steroid/IVIG route and hope to ride the PANDAS symptoms out until they wane on their own? Maybe treating very conservatively w/abx and therapy but nothing more? Or is this unrealistic? I have also read that the symptoms only wane for those kids who have had some sort of treatment....would you agree w/this? How does treatment in childhood affect the outcome in adolescence? Trying to figure out where to go. Second ?? Is muscle mass loss or wasting common in PANDAS kids? Affecting creatinine levels? Thanks!

Probably a question w/an obvious answer but....I swear my son's CBC's in the past have shown him battling an infection....nothing major, just elevated slightly out of the normal range. Let's say he has some chronic infection that has never caused any major probs but the body is continuously in attack mode....could this cause adrenal failure? Is there a specific test for adrenal failure?

fiveam, I'm sure Dr. Latimer, being a neuro will be very sensitive to any visable symptoms. You could always ask her if she thinks there is any correlation Ok googling some more....my son had "orthostatic hypotension" a couple of days ago...he said the floor was moving up towards him. Sicca, I don't think so but he's got the the rest of the symptoms including anhydrosis. He always drops his shirt because he gets too hot....he never sweats even with a high fever. I don't think it's AAG because it's not a sudden onset but def. autoimmune something....

Thanks Susan, I'm hoping that PANDAS is our answer too so I can stop all this googling....I'm driving myself up the wall with anxiety

Thanks for your reply Stephanie. Michael has for as long as I can remember had sort of a "sleepy" look about him. He gets tired easily too and the sun has been bothering him more than usual. I think I read about dilated pupils, wide eyed look and sensitivity to sunlight on another PANDAS website.

I would really recommend that you call the office and go and get a copy of the results or have them faxed to you. Then ask questions here, or start researching what those highs and lows could mean. I don't want to add to your anxiety and don't know how likely this might be, but thought you might want to take a look at this. Seems like these transient neuromuscular symptoms go right over most Dr.s heads when they are present! http://www.nlm.nih.gov/medlineplus/ency/article/003035.htm Both eyelids drooping: Medical problem, such as myasthenia gravis http://www.nlm.nih.gov/medlineplus/ency/article/000712.htm Myasthenia gravis If you feel that there are medical issues that are going unaddressed, keep at those straws! Kim, Thanks for your reply. I actually had an appt w/Dr Latimer this week but she canceled and we rescheduled for next week. We got the CBC results from the ped GI because we wanted to take a copy to Dr Latimer. So we have the results and we faxed a copy to the ped so that they could interpret the results for us. The numbers seem to have been indicating to us (as parents) that Michael was fighting an infection. However, he is homeschooled, doesn't go out much and hasn't in the last week been exposed to any apparent infections so though the highs and lows weren't terribly dramatic they were not in the normal range. If Michael has a neuromuscular condition do you think Dr. Latimer would be able to dx this or do we need to yet another specialist? The symptoms for MG do ring a bell but Michael is not a typical candidate for this is he? He's only 6.5.

I'm trying to make a list of PANDAS symptoms that I see frequently in my son. One thing I have noticed is that his pupils seem to be dilated even in the presence of light. Some times they are widely dilated, other times not so much but still more so than w/my other 2 kids. I'm assuming that this makes one more sensitive to sunlight. My son gets extremely anxious when going out on a sunny day. It always hurts his eyes. I've read that this can be a symptom, or something to look for w/PANDAS. I've also noticed that his eyelids tend to be very droopy. About 75% of the day his eyes appear to be half closed...has anyone else ever noticed this w/their PANDAS kids? My son tends to have little energy, is pale and I would guess anemic. This is puzzling to me since he gets a multivit pill everyday that contains 111% RDA. I am always a little reluctant to supplement iron because I don't want to exacerbate constipation which he also has. Maybe it's the B vitamins? We recently had a CBC done and according to the ped though there were some highs/lows they didn't think there were any red flags...I assuming if he had been anemic this would have shown up in some manner in the CBC results? Sorry for rambling I am really grasping at straws these days!

Hi Susan, I am not familiar w/DAN drs. Are they natropaths? I would be interested in taking that route except that I am a vegetarian and someone once told me that natropthic drs tend to frown on vegetarian diets. Do they?