EmilyK

So I completely jinxed my DS who puffed up in hives last night. He'd just eaten mango, peanuts, coconut, and pineapple. The allergist wants us to avoid all that and tree nuts but won't test him until August to avoid a false negative. Were your kids tested shortly after a reaction? His antibodies have to reaccumulate or something. Either blood or skin testing would likely show positive if we tested him this week since he had that reaction last night, according to the doctor.

I sometimes feel like that with my boys but people frequently tell me how polite and great they are. I'll second what fcefxer says

thanks - many good ideas. DH is fairly thorough but I bet all electronics could use a better wipe. How do you manage not to feed a cleaning compulsion while doing due diligence on germ warfare? Emily

Ooh - towels, will have to be careful on that one. We are due to replace some of our air sanitizers, so thanks for that link!

We had negative strep results mid June but my youngest just came down with strep throat yesterday again and is now on Augmentin. His older brother is the DS PANDAS. My husband has become a cleaning fiend. I keep tossing and replacing toothbrushes. Dishwasher, handwashing, what else? Neither DH nor I carry strep so far although I wish they would check our sinuses and not just throats. We don't have dogs but friends do. We have cats. Since the start of April we've had only two weeks free of strep. What other tricks do folks have for this? thanks, Emily

would love more info - thanks Emily

Love this idea Pre: We adopted DS at 8 months - normal birth reported and normal development reported at that time. DS was developmentally on target with great fine and gross motor skills and sense of direction from age two that had the extended family calling him "map brain". He participated with no issue in 2-day a week day care and 5-day a week preschool. His reading skills and drawing skills were ahead of his peers. DS was a persistent problem solver and an easy kid - rule follower, busy and inquisitive, respectful. DS slept beautifully from arrival except one week when he first learned to stand - easily addressed over 5 nights of teaching him to get back down and self-soothe to sleep again. DS had a healthy appetite and was not a picky eater. DS was a healthy kid. He had a bug when he traveled to us at 8 months with fever and vomiting and had two bouts of pink eye in preschool, but otherwise healthy. Onset: Thursday of first full week of Kindergarten (started with a 3-day week, so the subsequent week): suddenly couldn't sleep alone or fall asleep, urinary complaints and frequent urination, crazy hyper could no longer sit for dinner or stories. Symptoms mounted adding anxiety and sensory complaints (too loud, too bright, too heavy, too sticky). Tests showed nothing on urinary issue. School reported that he became highly distractible and he would obsess over not getting things exactly right. DS began to having screaming, weeping meltdowns on the floor of not wanting to go to school as he was sure he'd "get in trouble". I work for the ed dept and have opportunity to visit dozens of schools and classes across the state each year. He had a great teacher and principal in a supportive, non-punitive environment. Those emails from the teacher really picked up in March after his brother had strep in Feb that year. Continuing: Distractible behavior persisted even in creative arts, math, science camp environment. 1st grade new school with smaller class sizes and responsive classroom philosophy and many peers of same ethnic/racial background. Anxiety mounted and DS started to clean obsessively at home. He quit eating convinced he'd vomit. He began to be unable to do math and writing that he could do previously. Sensory complaints increased as did the meltdowns. Began weekly therapy in December. Reading intervention, modified homework, and OT at school - he held it together mostly ok for the day and fell apart once home. School reports that he needs much redirection to stay focused on work in a class of 16 with teacher and TA. DS continues to obsess about not doing things exactly right. We had one month where he covered all windows with blankets and papers to keep the ninjas out. Driving down a road with an "ugly turn" caused a meltdown. Meltdowns now involved hitting and running away. Many times we'd have to put him in car and throw on the child lock to go to school. He'd hide under his jacket in a restaurant, flip out at a hockey game or birthday party, etc. Classic strep presentation Feb. and continued postivie in April, May, finally negative mid-June. Penicillin in April in pill form gave us a glorious 3 weeks of having our kid back. Subsequent penicillin fairly useless. Pediatric neurologist in Boston not so helpful. We are on waitlists and have other appointments in August with a neuropsych and September with Dr. B. I've been working my way through Dr. Gellar's referral list and I'm thinking we're ready to head further abroad to NJ or NY for treatment. Being out of school had reduced the meltdowns from 1-2 a day to every other day. We continue with weekly therapy and various strategies such as What to do when you dread your bed, and What to do when your temper flares workbooks, 5 point scale, omega 3's , D3, multimineral/vitamin, Juice Plus, organic, nonGMO preservative free food, lots of exercise. He finished the year on grade level for reading but well behind in math and writing. The urinary complaints and fears of vomiting are back.

amazing

Your situation sounds like ours. It is frustrating. I'm on a wait list with one PANDAS specialist and booked for Sept. with another but I want to get my ds to someone now rather than have him start another school year in distress. At least summer vacation has started so I'm hoping that stress relief will be a little help. Hang in there and trust your instincts. Emily

And are most vets used to checking dogs for strep? Grandma has 4 dogs and we spend 3 weeks every July there!

I have a number of food allergies myself and carry an epipen. I've found allergy testing (blood/skin) to be inaccurate for foods and my allergists have always put more weight on an outbreak of hives and results with a food elimination diet (eat only rice, pear, lamb for two weeks and then add back one thing at a time - record reactions, long, slow and I hate lamb now). My mother taught me to pay careful attention to any itching in my lips or ears as that was often the first warning to a full blown reaction that would cover me in hives, start asthma, and potentially close up my throat. If I get the slightest itch like that from a food item, I immediately drink several glasses of water and get the benadryl and asthma inhaler ready w epipen nearby. Tree nuts and pitted fruit are the worst offenders. I find lots of tree nut products in soaps and shampoos (almond is common). Teach him to pay close attention to his body and how he feels. It was the best thing my mom ever did. I'm relieved that so far, our boys do not show food allergies. Good luck!

It doesn't seem like a scarlet fever rash, but then I'm not a dr. Our dr has dismissed allergy or scarlet fever, but allergies can be so tricky. Maybe that can be my case for a new antibiotic OTHER than penicllin His brother has been treated for carrying strep for two weeks now and we still only see the most marginal of improvements in ds. What do you do for keratosis pilaris?

My ds has had an eczema like rash on arms and cheeks. It's not horrible, but it's persistent. Is this related to the strep? No new soaps, detergents or anything. It's not hives. We keep him well moisturized and it's the same lotion we've used for years. It started about a week after he went on penicillin early April. The doctor said it was probably viral. I'm thinking he's sensitive to something or it's the strep. Anyone else have this? I've tried cortisone cream with little effect. thanks, Emily

our time period is wrong - lots of positive strep followed by flare up but not in the right months/timeframe On a good note, we just had two good days and his drawings are beautiful again. Keeping my fingers crossed!

Odd that Aspergers and PANDAS plus difficulty in school don't already qualify your child for an IEP...Perhaps the eval rather than just adding another label could help demonstrate the impact on learning and need for specially designed instruction? good luck Emily

I like that! He is very bright and I dread the days classwork comes home - guaranteed nightmare.

Right - I wanted to go buy a bunch of things but settled for melatonin first to try to be methodical. He does love seafood and yogurt which are both reportedly high in zinc. Also his natural vitamin supplement cover zinc and B6 pretty well, I'll go read more on those. I've not been able to get him to ingest any food with tumeric or cucumin. Behaviors: compulsive cleaning/organizing, can't sleep and night waking with anxiety, frequent urination, regressing writing, gets stuck on completing things just right to the point of meltdown/tantrum, afraid of making mistakes, difficulty eating anything mixed (even pizza when bad) and when at the worst refusing to eat at all for fear of throwing up, hyperactivity, meltdown/rage with schedule changes or transitions; thankfully we are not seeing a current resurgence in sensory hypersensitivity to light and sound Things we're trying: 5 point scale for anxiety/rage with labeling of feelings and replacement behaviors to cope(recent addition); What to Do When You Dread Your Bed workbook (new), modifications at school, school intervention with OT, weekly reward for successful homework, running/biking to burn off nervous energy, D3 and omega 3 supplements, ibuprofin (recent addition), kid yoga poses that he learned in gym at school,sing, breathe deep, ask for a hug,weekly CBT and art, timer and advance notice to prep for transition. His 504 meeting is next week. Teachers report high distractibility and needing 2-3 prompts to complete a task. Sometimes unfinished classwork comes home in addition to homework. Usually needs 1-1 to complete a unit review. We're fortunate that his class size is small at 16 with teacher and TA and they use a lot of positive behavior supports school-wide. thanks

What's LLMD stand for - something with lyme, right?

So they don't all have wait lists then? We drive 10 hours to visit grandma, so I don't mind driving! I'll look for Dr. Shulman's article. thanks

thank you!

Melatonin is a good idea - I'll go slow with it. He can swallow a small pill, but I'm not sure he'll swallow a capsule of Valerian. I know tinctures taste horrid. I'll shop around and see what I can find. He does find running and biking to be calming, so we try to do a lot of that since he's bouncing around a lot. I'm grateful he's not afraid to go out to do that. Both of my kids have been on omega 3s throughout their childhood. I got the books What to do when you dread your bed, What to do when your brain gets stuck, and what to do when your temper flares, all written for kids as a workbook. He's enjoying the dread your bed one. Those just came in on Saturday. He obsesses about making mistakes and then doesn't want to go to school cause he's convinced he will make mistakes. The school uses a responsive classroom technique and is not punitive thankfully. Urinary frequency quite a bit right now. He's cleaning and cleaning and cleaning - lucky me in one sense but not when it's time for him to switch to something else like dinner or bedtime. His writing is a mess last week and this week and he struggles with classwork and homework. It's getting difficult for him to eat again and I'm afraid he'll go back to the refusing to eat being convinced he'll throw up like before. Ugh - now I know how my mother felt when she watch me at age 9 decline into double pneumonia with doctors telling her I'd be fine and it was just viral. I wound up in the hospital for a week on O2. She was furious cause she knew something more was wrong with her child. My dh had walking pneumonia back in Dec. before my ds fell off another cliff in January, yet no one has checked him for mycoplasm. They just focus on the strep. What if he has both? I hope I didn't sound too know-it-all, I don't but it's frustrating to have the dr discount the things you see in your child and not understand the level of intervention we're applying. thanks, Emily

So we are waiting to see if he qualifies for NIH clinical trials and we do have a September appointment with dr. Bouboulis. In the meantime, penicillin this time round seems useless and regular dr won't change it. I'm doing lots of vitamin C and adding ibuprofin. Is there such a thing as kids' ibuprofin that is not full of food dye and other garbage? It's crazy frustrating to watch him deteriorate daily and have the dr content to give it another two weeks to see if that helps. My dh is trained as a counselor and I'm a special educator with a concentration in behavior management - we've pulled every professional trick we know plus those that colleagues have recommended and ds sees a therapist weekly, yet the dr doesn't get that this is not just behavioral somehow. The CBT and rewards and incredible 5 point scale are definitely useful, but not sufficient alone and neither is the penicillin in my observation. And I have to sit and wait to get in elsewhere - dislike! Open to other recommendations of supplements to add, CBT and therapies to try, etc. I really hate to watch him go through a meltdown and then hold his head and weep asking what's wrong with him. At least there's a spot to vent...

It's rotten to watch, isn't it? We sat and wrote a 5 point scale from one being excellent to 5 the meltdown, what it looks and feels like, and something to try when at that number to help feel better. It seems to help my ds just a little that he can label and reference ideas for what to do when there. Good luck

I was at the bookstore yesterday with my younger non-PANDAS ds and he grabbed Pete the Cat off the shelf. We brought it home and he and his brother love reading it (gr K and 1). Love it!

My ds has been on antibiotic for weeks and just got strep again. We just learned that his little brother is the carrier. So now they are both on antibiotics. Neither of them have fever or congestion currently, yet both are positive. It is definitely frustrating business. Good luck with your dd! Emily