sam268

I think I forgot to answer someone else's question about antibiotics. He HAS been on antibiotic before but I have not noticed a correlation b/t symptoms. He hasnt been on antibiotic recently. We are JUST starting to write everything down and it has made patterns apparent. Although this recent illness was so obvious, we didn't need to surmise a correlation. Michele- Wow, we do have a lot in common! My son has been in EI since 2months old due to prematurity and osteomyelitis in his knee (due to staph infection given in NICU). We first had PT and OT. At 15months, I saw some signs of ASD and we hit it full throttle with DAN, EI (OT, SLP, SI, floortime etc). He has made tremendous progress. I am very proud of him. He works so hard. There are lingering sensory issues, hyperactivity (his therapists think it's completely sensory based and not ADHD, however, mainstream medicine doens't discriminate adn I think he may eventually be dx with ADHD). Many sensory strategies work with him. he's big on preparing him. As long as I tell him exactly what to expect, he will do anything (including painful medical procedures, like a trooper). He deals well with transition with timers (actually asks you to set teh timer). He has vestibular issues (hates swings, feet off the gound or anything that makes his head NOT perpendicular to the floor (tipping back, laying down...diaper changes were a nightmare). He was tactile defensive but major progress on that. Now we only see it with occasional things like when he wants to help bathe the dogs and can't bring himself to touch the foamy soap. He is sensitive to noise. He used to freak out if he heard a cat rattle a paper bag in teh NEXT room (we didn't even hear it). He can't seem to filter out stimuli (visually or auditorily). He sees everything, hears everyting, comments on it and the world seems to come at him at 100mph (and he then in turn runs 100mph). Deep pressure is very calming to him. He sleeps iwth SUPER LOUD white noise and a weighted blanket on him. We do A LOT of talking ot deal with the anxiety. He definitely has anxiety that comes out in a hyperactive, dysregulated behavior (impulsive, silliness, breaking rules, "checking out") in stead of your typical withdrawl response. So, for example, when he gets nervous around people, he starts running around aimlessly and disorganized...he'll even throw himself on or tackle a stranger instead of withdraw. It's SO interesting about the toe walking. i will have to watch that and see if I notice a pattern. We were at the peds office today. They finally saw us after 12days of low grade fever. Their epxlaination is that he just must have caught multiple viruses back to back. Right. I convinced them to do bloodwork. They would only run CBC and IgG subclasss (b/c fo history of being low) and they would NOT run the ASOT and ANitDNASs ones. HOWEVER, they decided to run an Epstein Barr test. They did not tell me this one while we wer ein the office, I noticed it on teh script once we were at teh bloodbank. They completely blew me off about the behavior symptoms. I HAD to drop it for today b/c I am 6mo. pregnant and the stress is getting to me. I need to take a breather for a few days before I gear up again. We have slowed down on the DAN front b/c of $$. We just can't afford ot keep up with it with #2 on the way and unpaid maternity leave coming up. We do have an appt with Dr. Trifiletti at the end of Nov. I'm hoping that he's going to listen. I can't thank all of you parents enough. It's helpful to know that others have gone through this. It makes me sad to know that parnets have to go through this. Really it's the only support that helps me get through this (and my husband!!). It just tears me up when docs say things like the ped said to me today when I must have had a defeated look on my face when he said "It's just back to back colds." he said "I know. You don'tlike to hear 'it's just a cold.'" I retorted "No, I'd LOVE to hear 'it's just a cold'...if it REALLY was just a cold. I become defeated when I feel like I'm not being heard and that I feel there is more going on." At some point, someone is going to accuse me of Munchausen's. I know it's coming. Somehow, I dont' know how docs can think that though. he has so many different diagnoses.....I just keep pursuing b/c I want someone to see the big picture. Again, many thanks for all the kind words. It takes a warrior to navigate the medical maze and find your way to someone who listens. Kim

OMG, I just had to vent here that I just got off the phone with our Dev Ped and they said that if it wasn't due to the fever (meaning when the fever wears off, if hte behaviors are still there) they'd be happy to put him on Risperdal and do blood checks every 4mo. THEN, they asked me if I had ever considered if some of the "alternative medicine" might be "doing this to him." I suppose she's referring to the probiotic (that the allergist recommended), the carnitor (which the geneticist recommended dueto hypotonia) and teh zinc which was recommended due to low levels in his bloodwork. Hmmmm.....how frustrating is this? I just want to find a doctor I can trust and who isn't looking at us like we're crazy and who dosn't want ot put my 3 year old on meds to cover up the symptoms (w/o knowing WHAT they are). I am so frustrated today. Kim

Thank you to all who replied. I have a lot of reading to do and will make some phone calls in the morning. Don't worry Kerrie, I am not going to touch Risperdal. It was the most ridiculous suggestion by the ped, given only b/c he had no idea what else to offer me. So, we will try to get into a specialist. We have been seeing a DAN doc since 15months old for allergies, asthma and dev delays. however, I'm thinking I may need to change docs (for a vareity of reasons including $$$). If anyone has suggesitons, I'm all ears.

Okay, I was reading through it right after I posted. My question now becomes: what do I do from here to rule out the diagnosis or confirm it? Do I go to my ped with a list of bloodwork I want run? Or do i get on a long wating list for a specialist? I am very afraid of waiting too long. I have this "gut" mommy feeling htat time is of the essence. Each episode is getting worse. This most recent illness has scared my husband and I badly. We want our son "back." He usually goes back to "normal" when he gets well but I'm starting to see a snowball effect and am worried thse are going to cause permanent brain changes (espeically so young). thanks for replying so quickly!

I have a 3 yr old who I am very worried about. I have no idea if he has PANDAS or not but something strange is going on. Quick history is that my son has had mild dev delays (hypotonia, articulation disorder, sensory processing disorder that at times looks like budding ADHD). He has allergies, asthma and was recently dx with Eosinophilic Gastroenteriis via endoscopy. He does not "meet the criteria" for ASD but I work with kids on the spectrum and he is one of those "gray area kids." Dev ped doens't think he's ASD or ADHD yet. He has mild anxiety and is quite active on a normal basis. He's been receiving therapy since 15months old. However, where my concern comes in, is when he is ill (which is QUITE often in the fall/winter) he turns into a totally different kid. He becomes EXCESSIVELY hyper (to the point of being unsafe), tantrums inthe form of megameltdowns b/c he gets "stuck" on something very minor and loses all ability to reason or hear us (it's important to note that he rarely EVER tantrums normally), he'll throw himself around, crashing into walls, scream into hysteria etc. It is so distrubing ot see my child transformed. He will become get very rigid about things and how they need to be (as opposed to being flexible when NOT sick). He gets SEVERE anxiety of WEIRD things (bugs in his food, seeing monsters on the shower curtain, terrified of seeing a dark closet etc). he can even become aggressive. I can't stress enough that this is such a drastic change. This recent illness (6 days of low grade fever) has brought out the worst. I took him to the doc and asked about PANDAS. They swabbed him for strep and the rapid came back negative. he DID have strep at 18months old but never again to my knowledge. I did have his ASO and the other blood test done whe he was well once and they came back "within normal limits." So, my first question is: does this mean he's negative for PANDAS? what else should I be investigating? What causes a child to change drastically during illnesses? his ped just told me to put him on Risperdal. I think he missed my gigantic point that I wanted to find the underlying cause....not just control the behaviors....especially when we don't have these behaviors WHEN HE IS NOT SICK. I would be so grateful for any insight or advice. Can anyone suggest a doc on the east coast (we'll travel). He has had his tonsils/adenoids out, two sets of tubes in the ears, he's on fish oils, probiotic (heavy duty: VSL #3), carnitor, vit c, vit e, zinc, transfer factor, selenium etc. We are trying to keep his body healthy in the meantime. i think one of my main questions is: if he keeps coming up negative for strep with the throat culture and his one ASO and other blood test were within nomral limits, does this definitely rule out PANDAS? What type of doc is the best to weed through this? geneticist, neurologist, infectious disease, child psychiatrist? Thanks! Kim