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?

No, the GI just took down info about my son. She then checked his muscles, which were fine and according to her she ascertained that he was severely constipated. This did not sound right to me as he had had a large bm the day before. According to her it was leakage. Now he has suffered from that in the past but this bm did not look like leakage to me (sorry this is probably WAY TMI for some). Anyway she prescribed 2 fleet enemas, 12 hrs apart followed by 5 doses of miralax spaced an hr apart. I personally think this was excessive but what do I know? She sent him for bloodtests and I got hold of the results because I *thought* I was seeing Dr. L on wed. The bloodtests were performed last thurs but no one has called us to discuss them. We've googled the results and came up w/everything from Leukemia to IBS to some dire autoimmune disease....parents really should be banned from googling ! AS for probiotics...I did the basic ones, I tried VSL #3 (this one caused a lot of mucous....maybe cleaning out?) and right now I am giving him 2 capsules (powder added to smoothie) of florastor...I think that's 500. I agree, I think they help but maybe I need to step them up? I found that too much florastor makes him gassy....good or bad? The lymph was 63.8 normal range 38-55 neutrophils were 27.2 normal range 30-50 neutrophils# were 1.55 normal 1.80-7.70 MCH 26.6 normal 27-34 Maybe these numbers are so close to normal that they're ok...I just hate not knowing how bad or ok they are. We'll be calling the ped for some insight. Thanks for your input!

Thanks for your input Wendy. My son is 6.5 yrs old. I will think about Dr K if things don't go well w/Dr Latimer. We are up to our neck in non-insurance accepting appts

Hi Vickie, Well, my son's history is convoluted but I'll try and be short... Up until about 18 mos my son was relatively healthy. He had eczema and food sensitivities (allergy testing) but no big red flags. At about 18 mos my mostly healthy, somewhat chubby, little boy decided he was going to start deciding what to eat. If I remember correctly he was down to rice cakes, cheese, fig newtons (he mostly gagged on these) and occasionally nuts which he also gagged on. I knew something was wrong but his ped said he was ok. I started him in SOS therapy w/a great OT. We couldn't even get a toothbrush in his mouth...definitely sensory issues. Anyway fastforward....I had to go into hospital for 3 mos around his 2nd birthday....his little sister was born at 26 weeks. Shortly after my third child was born we moved out of state and though we were trying to encourage my son to try new things he flatly refused. At 2.5 yrs Michael fell off a chair and couldn't walk. He ended up in hospital w/nutritional deficiencies. Soon after this we were seen by a ped GI who said Michael looked ok and that he would probably grow out of his problems. He put Michael on periactin. We visited a few feeding clinics. Didn't like any of them. Fast forward again to about 2 yrs ago. Michael's feeding problems always seemed to be centered around sensory issues. Texture, sight, smell. Well, 2 yrs ago he started having panic attacks about swallowing things, toothpicks, his little sister swallowing small objs (she was way past the age of putting things in her mouth). About 3 mos ago he started having troubles w/smells and visual cues. He can't eat at the same table as others, he can't eat when smells other than that of the food he's eating are present, he can't eat in the presence of certain objects etc etc. So it almost seems as sensory has morphed into OCD? Recently his diet has been TONS of cheese, small quantities of bread/toast, fig newtons and letter cookies (arrowroot biscuits). He has had severe constipation and fatty, smelly diarrhea and everything in between for the past yr. In the past 2 weeks he decided to cut out cheese because I said it might be making him worse....problem is he hasn't replaced it with anything. He's been drinking more of a nutritional smoothie that I concocted and in the last couple of days I've been able to add neocate jr to the mix. Today his poop was just about normal for the first time in a LONG LONG time. But it's not a simple issue of dropping the cheese because the smoothie has plain yogurt in it...and I think the blood tests that were specific for celiacs and food allergies were low or negative. So I don't think it's an issue of milk or gluten allergies. He is 6.5yo, 40lbs, BMI 13.5 PS many sensory issues that he had early on have gone or have diminished....he can brush his teeth and swing on a swing

I'm new to the world of OCD/PANDAS. I *think* my son has PANDAS but I feel as if I'm getting further and further away from answers. We had an appt w/Dr. Latimer today but she canceled it. It has been rescheduled for next week. My son has many symptoms that are listed for PANDAS but right now my biggest concern is his weight. We went to a Ped. GI doc last week and she said he had severe constipation and she sent us home w/directions for fleet enemas and miralax. Well, I agree he probably does suffer from constipation, it seems to cycle from diarrhea to constipation and I think he's in the "regular" part of the cycle right now. So all the enemas did was to give him the worst panic attack he has ever had and running diarrhea. On top of that when we went for the appt he picked up the flu and we are all flat on our faces now We also had a CBC and other blood work done as my son has in the past been hospitalized for nutritional deficiences. He weighed 40lbs last thurs, I'm sure he below 40 now. He has a BMI of 13.5. The CBC test showed low nutraphils and high lymph, His MCH (whatever this is) was low. His basophils were on the low end but only just w/in the range. His BUN/creatinine level was high but I understand that underweight children frequently have this. Can anyone tell me what these numbers mean if anything? I don't know who to contact. Am I overreacting? Maybe the bloodwork is fine. I've started adding neocate jr to my son's "smoothie"....he hasn't detected it but that's probably because he has the flu and can't smell anything....how ironic...the flu is a blessing! I've contacted Drs around us (Ashburn VA), in MD and VA but no one wants to deal w/us. They always just give me other numbers for other specialists and those turn out to be useless. It seems as though he's too old for feeding clinics but too young for feeding disorders clinics (mostly dealing w/preteen/teen girls). Has anyone heard of art therapy working for feeding disorders? I feel that nothing will work until my son is "disarmed" and relaxed if this makes sense. I am drowning.

Not sure if we have PANDAS yet or not....but my son is bright when he wants to be....he learned all his multiplication tables at the tender age of 4 because he LOVED playing timez attack I don't know too many 4 yo who could tell you what 12x12 is

Thank-you both for your input! I'm not really looking for the worst case it's just that my records and my mind are fuzzy. When my son started going downhill he was about 2.5. This was the same time my 3rd child was born at 26 weeks after I'd been on bedrest for months. My eldest was being evaluated for asperger's and going through a major violent period and we moved state. Just after we moved my son fell off a chair and was unable to walk the next day. I have some records but not much...I can do a rough timetable for certain events but I couldn't for the life of me say exactly when my kids caught colds or had fevers. My son did have RSV at 4 mos and the odd "cold" but I don't ever remember him having a sore throat. What started as an oral aversion due to sensory issues seems to have blossomed into the most incredible olfactory acuity over the past I'd say 6 mos. The thing is that I don't think my son has EVER been typical it just seems like certain things have been replaced by others. I never would have thought OCD until about 9 mos ago when he developed a fear of swallowing foreign objects. Anyway I'll have a couple of venti cappucinos w/whipped cream on top (works like wine for me:) and I will take your advice. Thank-you both for your support and advice and LLM, not negative at all...just realistic and rational...thank-you!

You know what?! I had the same exact thought last night. My 3rd child (my son was second) was born at 26 weeks...just 1.5lbs and after 3 mos in the NICU she was sent home. She had chronic diarrhea and lived w/it for 6 mos before it was dx'd as C. diff! BUT I think I hadn't really considered it before now for my son because the diarrhea was so....well, different. Both foul smelling but I *think* C. diff has a smell unique to it...and it's kind of greenish. My son has frequent bms that are very often just clear liquid (sorry if TMI) or really bad smelling, mucousy, poops. I'd be surprised if it were C. diff but I guess it's possible...we have a GI appt this coming thurs. I will search for your post and I thank-you so much for your input.

Hello. I'm new to these forums so I hope I'm not violating any rules by asking about a particular therapist. If anyone has had their child seen by Dr. Saylor (Herndon VA) can you relate your experiences good or bad? You can pm me if that's easier. Thank-you so much! P.S.My son is 6.5 yo w/a severe feeding problem so I looking for someone who is good w/kids!

and were found to be unlikely candidates for PANDAS, what did Dr. Latimer offer you in terms of dx and/or treatment? Hello. I am new here. I have a 6 yo son w/some behavioral markers for PANDAS. He is in pretty bad health right now and I am desperately trying to figure out why. His biggest health issue is weight loss due to a heightened sense of smell. He has other issues but this one is the scariest. He will literally stop eating if he smells food other than what's on his plate (competing smells) and he will gag if he smells food other than what he would eat (his diet is EXTREMELY limited). A couple of days ago he stopped eating because he said he smelled dog poop outside. We don't have any pets and we have a fenced-in yard. He has also had diarrhea on an almost daily basis for a yr. He has tics, separation anxiety and at least O (OCD). I'm not so sure about "sudden onset". My question is: I have an appt w/Dr. Latimer in April. How many people here have been seen by her and deemed unlikely to have PANDAS and if you were told that your child DIDN'T have PANDAS what help/advice/treatment was recommended by Dr. Latimer? I would like to find a CBT/ERP therapist for my son...will she recommend one or should I be looking for one in the meantime? I have been searching but have come up w/a bunch of dead ends. I live in the NOVA area if anyone has any suggestions. Thank-you for any help!