AmySLP

When is your August meeting?

#1 AmySLP HERE was my post from some time ago but I had many replies then. I don't know how to post the link, but I found in under my profile/ posts. Group:Members Posts:335 Joined:23-February 09 Location:Binghamton, NY Posted 15 June 2010 - 07:05 AM I have been posting about my daughter's new behavior, standing on her head. I did e-mail the teacher about this Sunday night, as I thought my daughter might try this during periods of unstructured time. Well apparently she didn't-she saved it all for when she walked in the door. I could hear the vocal tics from the driveway as she got off the bus. She went upstairs to use the bathroom but I found her lying on my bedroom floor, legs and bottom high of the ground in a modified headstand. SHe preceeded to constantly do so until we had a leave for a school event 2 hrs. later. At school she had no behaviors or tics (it does appear that her swatting movements and flexed fingers have subsided). but as soon as I got her in the parking lot, my child's lying on the ground in a complete melt down over being unable to use the monkey bars on the playground b/c we had to go home to eat dinner. All I had to do is mention her teacher or principle seeing her and she pulled it together enough to get in the car, but then continued the tantrumming all the way home. I do have to point out that we have not had problems with the emotional lability this bad for more than a year. Her teacher did let me know that she had two periods of crying over something that children did/said at school and wanted to know if that's what I meant by the emotional lability. Regarding the movements, the teacher tells me that she keeps her body more still than any other child. She is a good student, well behaved and academically excels, so I really imagine they think I'm crazy. She was also able to keep it together during prechool last year, but I chalked that up to it being a 2 1/2 hr program-she would then fall apart at my babysitter's house for the afternoon. Anyone elses child able to hold it together for school? Does fatigue play a role in this, making the end of the day worse than the start? (this has always been the pattern in my daughter's behaviors and tics) Thanks for your input, Amy

This is my oldest daughter! During her onset she was in pre-k and they thought I was crazy. She then continued to hold it together for k and 1st grade too! I have and old post on that. If you look under my name/ content you will see that. It must have been a good year or more ago-she's finallyndoing well now 3 years later! I ended up sharing videos I took discretely with my daughters first grade teacher of what was happening at home when she truly took interest when some OCD behaviors and emotional lability and tics began to begin at school. Prior to that I was so overwhelmed with just trying to get my daughter well that I didn't care if they thought i was nuts! I did though,in all grades, and continue to keep a journal that I sent to school daily and I'd write each and every after school issue that insa in there. At some points I have to believe that teachers could not think I could possibly even come up with all that stuff! I would video tape..it's very eye opening to others including doctors who may be disbelieving. Amy

Using Bactrim exclusively in my older daughter after the combo of zith/Bactrim for co-infections. My 5 year old had strep approx 2 months ago with significant emotional lability since then, as well as separation anxiety. A few years ago dr. B tested her using his multiple battery of tests and her only elevated lab was the immune complexes. She had similiar emotional issues and sensory sensitivities then at age 3 after impetigo. I've been back and forth if I really believe she has PANDAS but now I have no doubt. After a few days of Augmentin, she is a different child. Has been continent at night 3 of the 4 days she's been on it. No extreme rages that we'd been having daily. I want to make sure I get her on the right ABX. Thanks for your help! Amy

It appears my 5 year old continues to have some sensitivity to Augmentin as she did when she was a baby. We (pediatrician and I) are trialing her on a 30 day abx to monitor changes in behaviors with an appt with dr. B in june. She's breaking out on her face with bumps. My pharmacist friend took a look at her and thinks its definetly a reaction so stop the meds. I know ped. Will ask me what I want him to switch her too. Any other ideas other than Zithromax?

Dr Latimer pointed out that our daughter had them in her tongue...it was kinda of a darting movement and rolling of her tongue .

My daughter started with movement issues, tics, restless legs, choreiform movements. It wasn't until those movements became more complex that I wondered if they were OCD. During periods of exacerbation over the last 3 years, I've noticed some OCD qualities but these were not obvious ones. She had some repetive behaviors and fears. We see dr. bouboulis in CT.

Did u get the letter that she's leaving CHOP? Any idea where she's going?

"My girl wouldn't be well without this community, bottom line" Isn't this the truth! I credit this community for healing my daughter as well and giving me the knowledge and support to do the same with my youngest. Thank you to everyone who has contributed to my childrens diagnosis and healing! Amy

Kim ballot is from Buffalo....you could contact her. I don't believe she would recommend anyone from that area. You may want to PM her.

Jill, With tears in my eyes, I am so greatful for the accomplishments your daughter has made. Each and every parent here was meant to take this journey. As hard as it is, each of us continues to seek answers and healing for our children. As I celebrate our accomplishments in my 7 year old, and I continue this journey with my 5 year old, I often remind my self that "God never gives you more than you can handle.". May you continue to be blessed, Amy

I'd imagine someone whose child has seen Dr B and whose child needed their tonsils out may know.

Reading with interest as my 5 yr old (likely PANDAS dx by Dr. B some time ago) has nighttime incontinence and he's tied it to the PaNDAS. I never quite understood the connection. Thanks for your findings. Amy

As I sit here pondering this research as both my girls are taking zith., I am trying to be realistic that although median age of subjects in the study was not revealed, it is likely it is of the geriatric population. Hospitalized patients have many secondary diagnoses and co-morbitites. The mention of it being on a mass number of Medicaid patients makes me wonder if this is a long term care population, which in my experience usually has cardiac involvement. I will not change my daughters' meds. EKG follow-up seems like a simple solution for our kids taking this long term. It's eye opening but would have more meaning if the age of the subjects were shared.

My daughter had one of those fill in sheets from school for mother's day, such as..."my mom loves to....". My favorite was my daughter's fill in that said....my mom loves to "....keep me healthy"- it brought tears to my eyes! I can only hope that one day she will never have to endure the very same thing with her own child. We seem to have a strong genetic disposition to PANDAS

Amoxicillin will cause rash when given with EBV as a reaction...is it possible omnicef can do the same? My daughter had the rash from abx when she had EBV and ES being treated for her chronic strep at that time. Good luck! Amy

After successfully managing PANDAS in my now nearly 8 Yr. old for the last 4 years, and continuing to do so in my 5 year old, these would be my suggestions.... You need to get an appt. with a PANDAS doc for guidance (I'd recommend one of the top few...Dr. K , Dr. M, Dr. L, Dr. B, Dr. T) . We have a great pediatrician too but he needs the guidance of some one who specializes in this disorder. While waiting for that appt. Keep your daughter on antibiotics. Most commonly used are Zithromax, augmentin ES (my daughter has been doing quite well on Bactrim). Full strength doses daily and journal symptoms to Document any changes. Kim ballot if an OT here who you can message with Sensory Integration questions. We have used SI treatment with both our girls for auditory defensiveness, tactile sensitivity, etc. at storm point for each. It is a tool to use along side antibiotics and such. Sounds like you have a good start with your pediatrician. We have never "watched" titers. The purpose is to document the strep history (in our case our daughters do not rise, despite positive rapids and cultures for months ). You just need to get your pediatrician on board with continued abx. Best wishes for a speedy recovery for your daughter. Amy

Clindamycin had worked for my daughter in high doses for 10 days after 6 month of difficult to eradicate step . Then it took a combo of Bactrim and Zithromax for I've. Month to do the same In an episode a year later.

Hoping to see one of these on the east coast soon!

My daughters tics, including a throat clear tic did not clear until she was on a combo of abx- Bactrim and Zithromax

My 7 yr old has been symptom free for over 6 months with daily prophylaxis, but her prior tics in one extremity (exactly the same as all other exacerbations) resumed. Prior to this, she's battled this for 3 years. And her oldest OCD behavior is back as well, beginning 3 days ago. She tested negative to strep which I believe in due to the daily prophylaxis. My 5 year old tested positive however. We have always been on the fence about her, as her symptoms have always been behavioral-emotional lability and rages. She's also had increased urinary frequency. In the past dr. B dx. Her with PANDAS...we've always questioned it, but these were her only symptoms beginning a few days ago. Positive on rapid. I have an excellent ped. who agrees that those are her PANDAS symptoms and that the dx. Is accurate. We finally see it too. My question is where I can find the theory behind the response to the strep in my older daughter in the absence of infection, but in the presence of strep in the house. Thanks, Amy

My pandas dtr had strep at 7 weeks, 3 months etc, etc until she turned four and then developed the ultimate strep infection that wouldn't go away and caused PANDAS. I do not believe that I had the antibodies to strep to pass on to her, as I had the same difficulty with frequent strep.

I'm about to ask for our school to change the faucets....they have most unsanitary ones that you need to hold down for them to work. I have taught my daughter to turn on and off the sink with paper towels and touch the doorknobs only with paper towels, the way we are trained in healthcare. I understand that they are to conserve water and ensure the water is not left on but come on, shouldn't we teach our kids to wash their hands in the most sanitary way possible?

Jill, No fevers here in my 7 year old when she was 4 and had strep for 6 months every 3 weeks! And, I got the SLP humor from the start! Amy

My daughter never had a classic symptom in all her positive swabs and cultures either, but it took nearly three years to clear her of the behaviors and tics that were her symptoms . Beg for ABX if you have too, even if your ped will just give penicillin, it's better than nothing while you wait until May.