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Everything posted by colleenrn

  1. Michele, Yes, he does get fixated on things, definitely. No sensory issues, walking on toes, repetetive behaviors, urinary frequency. He also looks pale right now, with the dark circles and he is not sick. I mean, he doesn't have a cold, fever, or act sick. That makes me more suspicious of strep.
  2. Faith, Yes, my daughter has had PANDAS for at least 7 years. When my son who is almost 8 was 4 I started seeing signs of PANDAS, but after his tonsils and adenoids were removed b/c of severe sleep apea, things seemed better with him. He definitely gets emotional when he has strep, but no tics I have ever seen. My 5 year old has had me so suspicious for a year now b/c he has had strep and has acted extrememly labile when he has strep- just not the typical OCD and tics that were so clear cut with my daughter. it has me confused, but after he was throwing fit after fit, getting progressively worse (went on for a few months) I took him for a culutre and it was positive. Things greatly improved with antibiotics and August was a much better month. Fast forward to a few weeks ago when I saw the emotional stuff coming back, got a negative throat culture, talked doc into 15 days of Zith. He does get a throat clearing tic when he is at his worst. B/c it is hard to figure out with him if it is strep b/c he doesn't get the ocd/tics, I second guess myself and the worse he gets, THEN the throat tic starts. The throat clearing tic diasappeared after the Zith. Now it has returned, also returning is the dark circles. I am so confused. My gut says he has strep, but my gut also says the culture will be negative as it was a few weeks ago. I really think the dark circles is related to the strep and wonder if others see it in their children, so I can have one more piece of evidence that my child has strep even though we get neg. cultures. Thanks, Colleen
  3. A few weeks ago, before starting my 5 1/2 yo on Zithromax, besides the typical behaviors I see in him that tells me he has strep (hyperactivity, very emotional, easily crying/throwing fits) I noticed he had very dark circles under his eyes. After 5 days of Zithromax the dark circles were gone. We continued the Zith for 10 more days. Now that it has been a week with no antibiotics, he woke up this morning I realize that dark circles under the eyes can indicate food and/or environmental allergies, but has anyone experienced dark circles under their child's eyes directly related to a strep or PANDAS episode? I am gathering every bit of evidence I can to convince my doctor he has strep b/c I know his culture will be negative as it usually is. Thanks! Colleen
  4. Tami, No. Thery had not had any pertussis vaccines. Colleen
  5. EAMom, She is not currently on any antibiotics. Last antibiotic was Keflex in July for an ear infection, and prior to that she was on Zithromax in March when my boys had pertussis. We have really slacked off on her supplements lately, but i aim to get her back on all of them. She gets them, but not regularly lately as she has been doing better. She was taking Inositol, 5 HTP, multivitamin, extra Vit C, B-complex, calcium/magnesium/zinc, and fish oil. I also had excellent results a few years ago when she had a flare up with Monolaurin. I would recommend trying monolaurin to anyone who has not trried it yet. It is an anti-bacterial and an anti-viral. Colleen
  6. EaMom, Right now her symptoms are a 3 on a 1-10 scale (10 being the worst), but in the past 7 years she has had many times when she has had horrible symptoms. Right now she has very minor facial tics, no ocd that I can tell, but she still has bad nightime/bedtime anxiety and has not slept alone for 14 months. That seems to not be improving. Colleen
  7. I have also heard that PANDAS symptoms can greatly improve or even disappear when a girl starts menstruating. My daughter turned 12 in August and based on her developing body, I think she is due to start her period any time. I hope and pray that is does affect her PANDAS in a positive way and I will post any changes I may see when the time comes. Colleen
  8. My daughter had the chicken pox vaccine at 1 years old and a terrible case of shingles when she was 10.
  9. Are the Epsom salt baths helpful for the OCD part of PANDAS? I know they can help reduce tics, but what about OCD? Thanks, Colleen
  10. My daughter's PANDAS started the month after she turned 5 and never had intrusive thoughts (that she or I are aware of) until she turned 11. It began out of no where and the thoughts were sexual and aggresvie in nature, which you can imagine would be HORRIBLE for a little girl and her mother. Antibiotics and lots of supplements (inositol, 5HTP, fish oil, vits, etc..) seemed to make them slowly go a way. I actually just asked her this morning about intrusive thoughts and she says she does not have them at all anymore. To answer your question about why they would disappear, has she been treated with antibiotics or certain supplements that could have helped them go away? Did she have any illness during the times of the thoughts and when she recovered from the illness they went away? Colleen
  11. Yes, that is definitely a symptom of my daughter who is 12 and has been for years and years. She complains of intermittent headaches and lots of stomach aches.
  12. My daughter is left handed to write, but does everything else with her right hand. When she was younger she threw balls and putted left handed, but now only writes left handed. My two sons are right handed and seemed to be so from an early age. I am not sure yet about my 2 yo, but he reaches with his left hand about 25%of the time.
  13. Alyssa, I was wondering if you can provide a little more information regarding taking Zithromax prophylactically please. I am desperately trying to convince my doctor to go that route with at least two of my children, possibly three of them. I convinced them to do 5 days of Zithromax and when I saw improvement, I talked them into giving me another 10 days, and I am still slowly seeing improvement. I want to keep them on it longer, but I am going to really need to convince them to do so. How long have you taken Zithromax? Have you always taken the dose of 250mg three times per week or did you start with a different dose? Do you remember why your doctor chose Zithromax? Is your doctor concerned about using it long term? Do you have to ever get blood tests done to check liver function? I know you must be so busy in college, so I really appreciate your time and any answers you may have for me!! Colleen
  14. My daughter age 12 and her brother age 5 are loud talkers and have PANDAS. My 7 yr old is not really a loud talker though and my 2 yr old is hard to figure out yet. I do remember when my 12 yo was younger she was really a loud talker. Colleen
  15. My daughter had all of her immunizations up through age four (did not get The MMR booster at age 5) and I first noticed her PANDAS at age 5. My three younger sons have only had polio, nothing else. They show signs of PANDAS, but no OCD, mainly ADHD behaviors with some tics. I strongly feel that the immunizations made things worse. I feel they damaged her immune system. I feel my boys symptoms would definitely be worse had they received all of the required vaccines.
  16. WorriedDad, I just read that you got a scrip for 4 weeks of Zithromax for your child back in August. I am wondering how they are doing and how they responded to the Zithromax. I am trying to convince my doctor to do the same for my child and I am having trouble. Thanks, Colleen
  17. EAMom, Thank you for your response and info. I was able to get the doctor to agree to Zithromax for my son even though the 72 hr. culture was negative. He finished the 5 days yestyerday andI have definitely seen a difference in him. His vocal tic is gone and he is much less labile, more able to tolerate frustration. I just got off the phone with the nurse at my doctor's office after leaving a message I would like at least another course of antibiotics, explaining why (the successs other PANDAS families have had with Zith). The nurse said the doctor said "no. wait 7 days and see if things get better". UGH... I told the nurse that is not what I want, that I want at least another 10 days-30 days worth. I tried about how it could be intracellular strep, thus taking longer to respond to the Zith. Does anyone have any ammunition I can use to get them to go along? How did you get long term Zith? Thanks! This is so frustrating, especially since the dr/nurses know very little about PANDAS and think I am nuts or inventing this treatment on my own. Colleen
  18. EAmom, I was wondering how you decided on Azithromycin 250 per day for your daughter. My son is finishing his 5 days of Zith tomorrow and I have seen a little improvement over the past two days. His 72 hr. culture was negative this week, but my dr agreed to Zith b/c I was seeing behaviors convincing me he had strep. I feel he may have had strep since Aug. as he was positive in July, but only treated with 5 days of Zith at that time. I want to ask my dr to give me another 5 days, possibly longer, then maybe try it prophylactically. Any guidance or suggestions as far as how long I may try the Zith and then if we switch him to a prophylactic dose, how much. He is 5 1/2, but only weighs 43 lb. The more I read about intracellular strep, the more I think that could be what is going on with him and has been going on with my 7 and 12 yr. old b/c their rapid strep tests ALWAYS come back negative. Thanks! Colleen
  19. My two oldest children often had stuffy noses. In one of my children that was my clue he may have strep, when he was really stuffy and mouth breathing at night. It resolved after they had their tonsils and adenoids removed. In our case I think it was the large adenoids that caused the stuffiness and that is why it worsened whenever they had strep. I see it now in my 5 year old who we are treating with Zithromax even though his 72 hour culture came back negative. I will pay attention to him when he is sleeping to see if the Zith has helped the stuffiness, but in my kid's case I think it is the adenoid size causing it. Colleen
  20. EAMom, Thank you so much for your reply and information! It has been SO puzzling to me over the years of getting cultures back negative (yes we do 72 hr. cultures YET the lab has messed up several times and read and discarded the culture after 36-48 hrs.) when I KNEW my daughter had strep and then having it confirmed even more that she had strep as I saw her greatly improve once we began a course of antibiotics. I have SO many questions if anyone has any answers. If intracellular strep is more difficult to culture, is there anything that I can do to insure a correct culture? I make sure the nurse gets a good sample from both tonsils and make sure they culture it for 72 hrs. Is there any reference that you know of that talks about intracellular strep being harder to culture? The longer they have untreated strep, the more likely it is to become intracellular? If strep goes untreated and the body fights it off, what happens to the antibodies if antibiotics are not given? Wouldn't they continue to attack the brain, causing PANDAS symptoms? You mentionned that some strains are anaerobic and difficult to culture if the agar is not punctured. Is this just something that the lab has to do correctly or do we have to request anything special? When I have a culture done, will they automatically test for all strains or just Strep A? How do I get them to specifically test for any strep at all and not just strep A? There was a time my son's culture came back as "non A strep" and I saw and increase in his behaviors and he responded well to antibiotics. The lab did not specify, however, what the strep was. Thanks so much, Colleen
  21. EAMOM- You posted that if your child has had untreated strep for a period of time, the throat culture may come back negative, therefore there would be no "evidence" of strep. I am awaiting the 72 hour culture results on my 5 yo son who I suspect may have had strep for a few weeks. There have been countless times over the past 7 years that I KNEW my two oldest children had strep based on their behaviors, the culture would be negative, but my kids would always respond to the antibiotics which definitely confirmed for me that it was strep. It makes sense to me after reading your comment that it could be b/c I waited too long (as I am always second guessing whether they have strep b/c they have NO physical symptoms) and that is why the cultures are negative. I luckily have a Dr who will give them antibiotics if I think they have strep regardless of the culture, but I honestly think they don't believe my children could have strep with a negative culture. Any more info would be greatly appreciated. Thanks, Colleen
  22. I was wondering if anyone knows if the longer a person has strep, the more likely the strep is to be intracellular, therefore responding better to macrolides like Azithromycin.
  23. I am taking my 5 year old son for a throat culture today as he is showing behavioral signs of strep (no physical symptoms). My 12 yo daughter, 7 year old son, and 5 year old son all have PANDAS. It was a clear cut case for my daughter and son, but I have been trying to figure out if my 5 year old falls into the same category as he shows no signs of tics or OCD behaviors. His is all hyperactivity, very labile, irritable, explosive, etc... I am pretty sure it is PANDAS with him and I think strep keeps recolonizing in his tonsils b/c they are so huge. My other two children has their tonsils and adenoids removed for the same reasons. Before they were removed the strep kept recolonizing every time they would stop antibiotics and the ENT said the reason was b/c the tonsils were so large and cryptic. IF my son has strep this time I want to put him on a prophylactic dose of Zithromax, but do not know if it would still be the 500 mg/week. He is 5, but very small for his age. He weighs 40 lbs. Any help would be GREATLY appreciated. Colleen
  24. I can only speak for my family and I have heard of some siblings having tic disorders or OCD or PANDAS when the other siblings do not have it. But, in our case, my 12 year old daughter has PANDAS and with that she exhibits tics and OCD behaviors, my 5 and 7 year old sons have not been "formally" diagnosed with PANDAS, but I know they have it. Their PANDAS manifests as hyperactivity, emotional, lablie behavior, and some separation anxiety. I also have an almost 2 year old son that I have not seen any of these behaviors yet. I believe I had PANDAS as a child (ages 7-13) as I have periodic tics, severe at times, that would vanish all of a sudden, and I do not have them as an adult. I tried to get my medical records to see if the tics correlated with times I had strep, but I was told the records had already been destroyed. Colleen
  25. My daughter and son both have had their tonsils and adenoids removed and were in severe pain for the first 2-3 days. I alternated between tylenol with codeine and ibuprofen. I do not think that tylenol without codeine would have been enough to manage their pain. Another thing that seemed to help was to put ice on the outside of their throat. The hospital sent me home with the ice "collar" we used in the recovery room, but if you do not have one you could just put crushed ice in a large ziplock bag and put a thin towel/hankerchief between the ice and the neck. Lots of cool liquids, popsicles help, plus not eating anything at all that is irritating to the throat. Good luck! Colleen
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