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Everything posted by thereishope

  1. My PANDAS son started with an occassional cough and low fever (highest was 100.9). After a few days he started to get better, fever broke. Then last night, the cough seemed to occur more often and was harsher. We ended up taking him to urgent care and he was dx with Mycoplasma Pneumonia. Good news...no PANDAS symptoms. He has been put on 5 days of Azith, threw up the first dose, but we will try it again after lunch as per the pharmacist's directions. He will continue the proph Pen VK even while on the Azith. My background: 3 strep triggered exacerbations. For awhile reacted to non-strep triggers inc viruses and allergies. Overcame residual OCD. Been symptom free for almost two years. Anyway, thought some might want to know that some PANDAS kids may get Myco P without a flare occuring. I hope this is a sign that his immune system is calming down.
  2. This charting system is popular http://www.latitudes.org/forums/index.php?showtopic=6685&hl= I just wrote down bullets every day then wrote journal entries based on those when I found time. I kept a small piece of paper on my kitchen counter and when he did something negative, I jotted it down, when he did something good that showed progress, I jotted it down. Even if I looked back at my small notes a week later, it would help me then elaborate on it in a journal entry. Like you said, everything blurs together after awhile or you simply forget.
  3. My non-PANDAS son had Mycoplasma Pneumonia. His only symptom was a cough. We actually found out "by accident" he had it. we went in for a strep test since he was exposed and found out he had Myco P instead. No rash or lesions. My PANDAS son never ramped up from exposure to the Myco P and my PANDAS son and my daughter never contracted it. My boys do share a bedroom so I separated them for a few days. If you are concerned about your son's dry cough, it would be justified to bring him in and have him listened too.
  4. Here's the link http://www.latitudes.org/forums/index.php?showtopic=11283&st=0&p=95002&fromsearch=1entry95002
  5. It's easier for others to spend your money. How about she coughs up the med bills for that doctor then? I've learned with certain people to just stop giving them info on anything in my life because when I do, they always say something to anger me and upset me. I just don't need more stress.
  6. My son had t and a when he was 5. We got there early in the morning and out by afternoon. As long as she drinks something after she wakes up, she's good to go. I was told to let him eat what he wants. The more you baby the throat, the thicker the scab and the more pain. My son ate chicken nuggets the same night.I don't think my son ever took more the regular Tylenol.
  7. That's good she only has 3 or 4 things! Well, not that she has 3 or 4 things, but that she doesn't have more. As for the autoimmune issues, that something to make sure you tell the doctor. I don't mean to keep throwing links at you, but here's one on maternal autoimmune diease and PANDAS http://pandasnetwork.org/2011/07/maternal-autoimmune-disease-and-pandas/ Thyroid is the most prevalant. From what I have heard about lupus from my own experience that it's not uncommon to be told you may have lupus but they are not fully sure. Again, just speaking from experience with medical stuff I went through with my mom. Right now, I would probably say to just monitor her (as I'm sure you have) until you can see the neurologist. Now that you've learned more about the disorder, you will notice red flags if they pop up. If her tantrums worsen or you see new things popping up, then take action sooner. Oh, one more thing, as for her diet, you could try limiting things like food dyes. Food dyes can cause tantrums, metldowns, etc. Maybe try limiting it for week and see if it makes a difference. It's something to rule out.
  8. Here's a thread you might find helpful. JAG10 signed her dd up at Kumon and had a positive experience. For those with Math Challenges http://www.latitudes.org/forums/index.php?showtopic=12628&st=0&p=105161&fromsearch=1entry105161
  9. And she might "just be" (sorry, I don't like using that phrase as I was once told my son might "just be" OCD, might "just be" bipolar) a strong willed girl, but I would get the opinion of a PANDAS doctors (perhaps even over the phone), a neurologist, immunologist that is familiar with PANDAS. Yes, I am a little defensive when it comes to some psychologists giving opinions on PANDAS. One who claimed to have seen PANDAS kids told me my son's problmes all stemmed from his speech disorder. Well, it didn't...it was PANDAS. Part of the PANDAS journey is the parent following their parental instinct. If you think it's more than her personality, then do more research. Did you have a chance to read through the OCD in a young child? This is a check list version of that post http://pandasnetwork.org/wp-content/uploads/2011/06/OCD_Checklist.pdf One more question, to your knowledge is autoimmune diease prevalant in your or your wife's families? Trust me, I hope your daughter isn't PANDAS and I'm not trying to push the issue, but because there was some concern on your part I owe it to you to cover bases.
  10. No, I didn't mean that. If she is doing well and then you see an outburst that makes you feel she may have strep, you can test her first. And then determine other family members from there if she tests negative. If she has been having pretty consistent outbursts, a child may still be in the same exacerbation (if they are PANDAS) but not fully well. In that instance, you wouldn't take your child in. Unfortunately, I guess there is a learning curve to you learning what it is like for your child. I know my son may get upset, but I've learned what his PANDAS induced upset is vs just him. If someone in your house tests positive for strep, then yes I would say test everyone, but ultimately it is your decision if you want to do this. Yes, this can get expensive. We have horrible insurance and pay around $100 for a strep test once you get charged the office fees, multiply that times 5 people in my house. It adds up. BUT...this is how I found out my kids had strep, my husband had strep, etc. It's rough on the budget but when you look at your child being sick and getting worse by possible reinfection or exposure...well, I do it. My ped now agrees to give all of my kids a treatment dose of antibiotics if any one of thenm tests positive. This has helped with our medical cost as I may only have to pay the office visit for one child now. And, yes, there are kids who throw fits, cry, etc and are not PANDAS. Does your child have any other symptoms of possible PANDAS http://www.latitudes.org/forums/index.php?showtopic=6265 Signs and Symptoms: Children with PANDAS must be initially diagnosed with Obsessive Compulsive disorder or a tic disorder [swedo2004]. These children may have some of the following symptoms that accompany the OCD or tic disorder [swedo1998][Moretti2006]: Obsessions (e.g., preoccupation with a fixed idea or an unwanted feeling, often accompanied by symptoms of anxiety) Compulsions (e.g., an irresistible impulse to act, regardless of the rationality of the motivation) Choreiform movements (e.g., milk-maid grip, fine finger playing movements in stressed stance) Emotional lability (e.g.,irritability, sudden unexplainable rages, fight or flight behaviors) (66%) Personality changes (54%) Age inappropriate behaviors particularly regressive bedtime fears/rituals (50%) Separation anxiety (46%) Oppositional defiant disorder (40%) Tactile/sensory defensiveness (40%) Hyperactivity, impulsivity, fidgetiness, or inability to focus (40%) Major Depression (36%) Marked deterioration in handwriting or math skills. (26%) Daytime urinary frequency/enuresis (12%) Anorexia (particularly fear of choking, being poisoned, contamination fears, fear of throwing up) PANDAS/OCD is a clinical diagnosis, often marked by the sudden onset and extreme symptom exacerbations (such as an increase of +18 points on the OCD CY-BOCS score during an exacerbation [Murphy2004]). The abrupt onset and remission after eradication of streptococcal infection separates the child from non-PANDAS OCD[swedo2004]. Many parents can pinpoint a day or a week when behaviors changed [Çengel-Kültür2009] When a child has primarily vocal and motor tics, the symptoms may appear to overlap with symptoms of Tourettes Syndrome; however, the children can be differentiated by observing symptom exacerbations over time [Pavone2006]. In PANDAS children, a streptococcal infection precedes symptom exacerbation and once treated, initial exacerbations generally remit. The rapid onset with significant remission is characteristic of PANDAS. Researchers have described chronic PANDAS [Pavone2006] where the tics and/or obsessive-compulsive disorder have a much more gradual course. These cases are difficult to separate from non-PANDAS tics or OCD. Some researchers have found other immunologic markers (anti-neuronal and anti-basal-ganglia antibodies) that help separate PANDAS and non-PANDAS children[Kirvan2006].
  11. Welcome. At 5 years old, tantrums shouldn't really last 45 minutes. At 5 years old, when my son's PANDAS struck, he would have meltdowns lasting from a shorter time span to the upwards of lasting 3 hours. If interested, here is a link to OCD in young children as seen by PANDAS parents http://www.latitudes.org/forums/index.php?showtopic=6153&hl= As for learning to live with asymptomatic kids, well, for my PANDAS son, it's his PANDAS behaviors that indicate infection. For my non-PANDAS kids, there is no way of knowing. If I know they are directly exposed, I test them. I have also started at home random testing on them. If one has strep, they all get treated. If you believe your child has strep and she test negative, you could have tested too soon, if she is on antibiotics or recently finished them, you can get a false negative, and in PANDAS kids, once the process begins, other non-strep triggers can worsen symptoms including exposure to strep, allergies, virueses, stress, etc. I would test all family members, symptoms or not. In addition to the antibiotic, you should give a PROBIOTIC as welll and make sure to space them out. This will hopefully keep her gut in check.
  12. I'm happy to hear you are seeing improvements! The GAPS diet is new to me and I look forward to reading about it more. Also, I see you use the GutPro probiotic..can I ask what you think of it?
  13. If your son was on amoxicillin for 21 days and you only saw any glimmer of improvement for two days of that, I would suggest trying to get a treatment dose of something else before going to a prophylactic dose. As I assume you have read, amoxillin has a high failure rate of erradicating strep.I would start by providing info backing up that the original strep infection (do you have a documented strep infection?) was never cleared in the first place. If you want Azith, then provide articles and state you want a script for Azith. Otherwise, some do also see improvement on Omnicef and Augmentin as well. You state you are in PA...others in PA...do you find docs prefer to avoid Azith in that area and opt for something else due to the possibility of a Zith resistent strain of strep? Here are some articles on the failure rate of amoxicillin Amoxicillin Failure in Sterp http://www.entrepreneur.com/tradejournals/article/169459644.html Group A Streptococcus and its antibiotic resistance http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2640020/ Also, if you cannot travel to a specialist, you can search for a different doctor in your area, try an ENT, immunologist, etc.
  14. This article just popped up on my facebook and I thought of you.... When Puppies Need Therapy: Meet the Pet Psychologists Read more: http://www.time.com/time/health/article/0,8599,2079795,00.html#ixzz1QVkzQzVF
  15. I'm sorry you're going through this. We went through those times when it seemed strep wouldn't leave us alone and it was just encompassing us. The good news is for my family it eventually settled. We have had strep in the house again since then but it didn't hit as hard and only affected one person, not the whole family as it did in the past. Stay focused, stay hopeful. Yes, when your child makes those threats it's very scary. Do you feel they are just words said out of anger, frustration and sadness or do you feel he may not understand the repercussions and may actually act upon the threats? It hurts me to ask that.
  16. I suggested Pearls because of their size. They are very tiny. They also may be a way to get you daughter comfortable with swallowing pills. That was the first pill my non-PANDAS son learned to swallow.
  17. Hi. First, you have a 60 day supply of mixed liquid penicillin? Penicillin is only good for 14 days. We pay for a month of penicillin at a time, but go every 10 days for a freshly mixed bottle. If you do in fact have 60 days of mixed penicillin, you need to talk to the pharmacy. Second,as for refrigeration, when we travelled, we put our bottle in a mini cooler like you used for baby bottle and an ice pack. A the hotel we refilled a zip lock with ice from the ice machine and put that in the cooler.We also put the penicillin bottle in a ziplock bag just in case anything leaked. Our regimin is (keep in mind he was out of the house for school from 8:45 am till 4:00pm): Between 8:00 and 8:30AM pen vk, multivitamin, allegy med if needed after dinner probiotic, dinner around 4:30-5pm (not ideal time after food, but that's the time we had available) Between 8:00 and 8:30 pm pen vk, Omega 3, allergy med if needed My son liked the bubble gum flavored pen vk the best.
  18. bumping. International contacts can be listed as well.
  19. Dr Chugani was written up in this last newsletter http://myemail.constantcontact.com/New-Studies---Exciting-Accouncements-from-pandasnetwork-org.html?soid=1103470649803&aid=SjHt1ahkGDg#LETTER.BLOCK12 edit...I now see others answered your question. Sorry...replied before reading all responses. Have you heard of dr. Chugani at children's hospital? Was Going to try and book an appt. Was wondering if you've heard anything about him. I read about him on another message board but no one really mentioned if how good he was, although he is the chief so I'm assuming/hoping he knows his stuff. Although you never know anymore.
  20. Testing for allergies wouldn't necessarily hurt, but if she is 90% better and you feel she will continue to reach 100%, I think you can wait if that's your preference. Allergies can come on any time in life, so it's something to be aware of even if she doesn't seem to have any now.
  21. Scary.All we can hope for is that familes here will realize how serious strep can be by reading things like this and go to the doctor in a timely manner instead of just waiting and hoping it runs its course becaue it's "just strep".
  22. 10TV News, a CBS affiliate, is seeking PANDAS families from Columbus, Ohio to participate in an on-camera interview for an upcoming story about PANDAS. If interested, please contact the reporter, Tracy Townsend, directly at tracy.townsend@10tv.com. They are wanting people specifically from the Columbus, Ohio area. I did receive permission to post this from Sheila. Thank you!
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