Jump to content
ACN Latitudes Forums


  • Posts

  • Joined

Everything posted by thereishope

  1. I'm sorry. I was in a rush and only messaged some possible doc info. The article about the failure rate of amox is no longer available online However, there are studies and cite the failure rate of amox in strep and better alternatives to amoxicillin. Here are a couple... “Meta-analysis of Cephalosporin Versus Penicillin Treatment of Group A Streptococcal Tonsillopharyngitis in Children” http://pediatrics.aappublications.org/content/113/4/866.abstract Group A Streptococcus and its antibiotic resistance http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2640020/
  2. Quick Update... We still have seats available! If you are interested in attending the FREE meeting on Nov 5 in Indy, please view the above information or visit the invitation at http://i905.photobucket.com/albums/ac251/Project_PANDAS/PANDAS%20Parents%20Meeting/PANDASParentsMeetingInvitation.jpg If you haven't visited our blog yet, check it out! Even if you can't come, it's inspiring to see all the companies, organizations and individuals that are supporting this day! http://pandasparentsmeeting.blogspot.com/ *PANDAS Parents Meeting is sponsored in part by Organic 3, makers of GUTPro™ Custom Probiotics. We are very thankful to them and all other individuals and organizations that donated, helping make this event possible. Please view the left side of this website for lists of all those who are helping make this day a success.
  3. By symptoms, I meant PANDAS symptoms. Some may find that ramping from exposure isn't as bad as being infected themself. So, if their PANDAs symptoms worsen or explode, you could retest them again as they may then test + or change/increase abx. Keep in mind you can get a false negative strep test while on abx.
  4. This explains why that antibiotic was chosen http://clinicaltrials.gov/ct2/show/NCT01411774 Detailed Description: Obsessive-compulsive disorder (OCD) affects 1-2% of children, runs a chronic course without treatment, and is associated with considerable functional impairment and poor quality of life. Although most patients with OCD respond to cognitive-behavioral therapy (CBT) or pharmacotherapy with a serotonin reuptake inhibitor (SRI), a substantial number of youth remain symptomatic after receiving these therapies. Pharmacological interventions with SRIs are only moderately efficacious, rarely produce remission, may be accompanied by side effects, and may not be an acceptable intervention to some parents. Medication augmentation strategies such as atypical antipsychotics are often used in children with partial response but have concerning metabolic effects and no systematic supporting efficacy or safety data. Although CBT is the gold standard treatment for pediatric OCD, not all patients benefit and the availability of skilled therapists is quite limited. Thus, there is a critical need for interventions to optimize treatment outcome in pediatric OCD. The primary mechanism in CBT is repeated and prolonged exposure to feared situations while abstaining from OCD rituals. This treatment is based on animal models of extinction of conditioned fears. Basic research on the neural circuitry underlying fear extinction led to the examination of d-cycloserine (DCS), a partial agonist at the NMDA receptor in the amygdala, as an agent capable of enhancing extinction learning. Following successful validation of this strategy in animals, six trials in adult humans - and one study in youth with OCD - provide support for DCS dosing as facilitating extinction learning that occurs during exposure-based psychotherapy. However, experts and agencies responsible for regulating drug indications in the US, including the FDA, recognize that safety and efficacy findings in adults should not be routinely extrapolated to children. The present study furthers pilot work on DCS to augment the effects of CBT in children with OCD. The investigators are conducting a double-blind randomized controlled trial, conducted at two sites, to examine the relative benefit of 10 psychotherapy sessions of which sessions 4-10 will be augmented with weight-adjusted doses of DCS (25/50mg) compared to CBT augmented with placebo. 150 youth (ages 7-17) with OCD will be randomly and evenly assigned to one of the two treatment conditions. The primary outcome will be change in OCD symptom severity assessed by independent evaluators. The study recruitment sites are the University of South Florida (USF) and Massachusetts General Hospital/Harvard Medical School (MGH). This study extends the first report of DCS augmentation in youth with anxiety disorder/OCD by conclusively investigating an innovative research approach that manipulates glutamatergic pathways to mediate improved outcomes of exposure-based psychotherapy based upon a translational model of the neurobiology of OCD.
  5. It could take 3-5 days from exposure to get a + test. So, if any symptoms start, don't hesitate to take the kids back in for another test. Are the kids currently on any antibiotics? Do the basic, like remove dh's toothbrush and such.
  6. My son's eating issues I think were a combination of OCD and sensory. He actually never told me the reasoning, but by the way he recovered from the eating issues, I can infer it was a combination. I believe he had contamination issues. I think he wanted to eat, but his brain told him not to. As for the sensory,for him, it was hot/cold food. As he healed, I was able to slowly get him to eat normal again. It was baby steps all the way. Don't force him to eat anything. Just break it down and do it in small steps. Realize even licking something he is usually refuses to eat to may be a triumph.
  7. PANDAS is sprinkled here and there in the new website. IOCDF OCD in Kids http://www.ocfoundation.org/ocdinkids/
  8. Is your child on any SSRI's? In PANDAS kids, some parents cite lack of inhibition as a side effect. Is your child on any allergy meds? If so, which one?
  9. Allergy meds are tricky as with everything else with our kids...every kid reacts different. Allergies may worsen PANDAS/PITAND symptoms. Some allergy meds may help the allergy symptoms, but then the med itself eventually causes PANDAS/PITAND symptoms to increase. Then you have the right allergy med. This will keep the allergies in check and you will see PANDAS symptoms hopefully improve as a result of that. You will not see a backslide after a couple weeks of use. It can take some allergy meds 2 weeks to fully get into the system. So, even if your child does not negatively react to them at first, still be aware it may be the culprit, if you see inital improvement then worsening. My child cannot take Claritin. At first it's fine but within 2 weeks, spiked the OCD and hyperactivity. My child can take Benadryl(does not make him tired) and can take natural supplements.
  10. I don't think they would code a tonsillectomy under PANDAS. I think they just code it as a tonsillectomy or tonsil and adenoids. I can't remember our full cost as it was 3 years ago. The final cost may have been a few thousand. Maybe between $3K-4K? But the ENT appt leading up to the tonsillectomy is a separate cost. Being a specialist, that may be around $300-400. When anything is billed through any hospital in your county, you can always file for financial assistance pre or post procedures and appointments. I think most would be surprised how high your income can be and still qualify for some type of discount. You may be able to set up payment plans too. This can all be done even if you have insuarnce.
  11. We had no flair post surgery. We never took psych meds.
  12. Those interested in attending the PANDAS Parents Meeting on Nov 5 in Indy have only two weeks left to RSVP. RSVP's need to be in by Oct 14. For full details (including how to RSVP), please view the online invitation at http://i905.photobucket.com/albums/ac251/Project_PANDAS/PANDAS%20Parents%20Meeting/PANDASParentsMeetingInvitation.jpg You can also view updates by visiting the event blog at http://pandasparentsmeeting.blogspot.com/ Thanks! Vickie
  13. There is a lot of bacteria, other than strep that lurk in the tonsils, then when removed, perhaps that is all released. You are also exposing nerve endings, blood, etc..all is being exposed to that bacteria. For those that have a worsening of symptoms post op, I have had the thought of whether all that released bacteria causes the problems but if in the long run, it still ends up being beneficial since hopefully, eventually that bacteria is fully erradicated. So, I would wonder if those that worsened after surgery, once they finally recovered from the horrible setback, how long was the child able to maintain that recovery? Obviously, this idea goes out the window for those that continue to have chronic strep post surgery. I have been looking up any research about anesthesia and the BBB. When I look it up, I don't understand all the different kind of anesthesia. What kind of anesthesia do they use for t and a? Does anyone know of any research about that and the BBB?
  14. As for age and vaccinations, peds will start giving kids some of their kindergarten shots at age 4 and then any remaining at age 5. Any flu vaccine would be offered every year. A lot of live vaccines too (MMR, chicken pox and possible FluMist). My youngest started kindergarten this year.We were offered the MMR/chicken pox combo at age 4 in prep for kindergarten. I think my eyes practically popped out of my head when he offered that. Needless to say, we passed. You can look up what your specific state "requires" online. The lists are just getting longer and longer.
  15. I don't know how fast vaccine shedding would occur. It would only occur with the live vaccines. During this time of year, we are probably unknowingly exposed to it very often with back to school vaccines being administered and the resurgence of every possible location offering flu vaccines. I think I'm most concerned about FluMist. Your child will probably will be fine.
  16. I wish you the best of luck! Even though each child is different, my child did well with tonsil removal. He healed rather quickly too. I wish the same for yours.
  17. Another good,recent publication is a chapter from the new book “Handbook of Anxiety Disorders in Children and Adolescents” . We can publicly access excerpts of the book, but not the entire thing and it is about $300to buy. I'm attaching a link to an excerpt along with a summarization of omitted pages. http://pandasnetwork.org/2011/09/%e2%80%9cimmune-and-endocrine-function-in-child-and-adolescent-ocd-%e2%80%9d/
  18. Strep can be in so many places. Strep throat, sinuses, ear infections, strep in the gut, strep on the skin (impetigo). So, just becasue a throat rapid and/or does not come back positive, it does not necessarily mean the child is strep free. Also, if strep was in the class, it still can be in the class and he can still be exposed. It may take a good 5 days for it to run its course throughout the room. Luckily, it's Friday and he won't be exposed over the weekend.
  19. Not sure who would prescribe it for you, but get full strength antibiotics for a month following surgery too. Has your son ever done a short steroid burst before? Was it helpful? If so, consider requesting a steroid burst to be on hand in the event anything does spike post surgery. If you can, have your dd on full strength abx during that time too so the likelyhood of bacteria and particularly strep, will be lower during the healing process. Also, some biopsy tonsils, so think if you want that done. And make sure if they do the tonsils, they'll do the adenoids at the same time. For some if they take one, they automatically take the other. But ocassionally, they don't
  20. This went off the front page, so I'm bumping it back. If you want more info on this FREE event on Nov 5 in Indy, please view the invitation at http://i905.photobucket.com/albums/ac251/Project_PANDAS/PANDAS%20Parents%20Meeting/PANDASParentsMeetingInvitation.jpg Also, we are keeping a blog leading up to the meeting and to post after-event material at http://pandasparentsmeeting.blogspot.com/ Thanks!
  21. Do you know if you're dealing with strep? If it's something additional like Mycoplasma, perhaps the keflex was doing a better job in keeping that in check.
  • Create New...