TessaKrista Posted July 21, 2010 Report Share Posted July 21, 2010 (edited) I wrote on this site a while back to share my story about my ds7 with you. Just to let you know, I used the name Sweet Cheeks' Mom, because I call him Sweet Cheeks, and thought that worked as a great handle, not because I think that I am a sweet cheeks or anything like that. (How do I put a happy face on this thing?) Anyways... I had a very very very very hard time getting antibiotics prescribed for him. Did I say "very" enough times? I went to many many many doctors, and I heard variations of the same message: pandas is controversial or it is a fad. Bottom line, people here in Mississauga Ontario do not believe in it. There do not seem to be any pandas friendly doctors around here. His pediatrician said that the main children's teaching hospital in Toronto is interested in the topic. However, when I look on their website, they do not mention any pandas research, or anything to do with pandas. I was able to finally get a script of the liquid azithromycin from his pediatrician for my ds7 at 7.5 ml which someone on this site calculated it to be approx 300 mg. He weighs approx 50 pounds or approx 25 kg. I called her office and asked her secretary to please have the doctor call in a prescription for azithromycin. This is two weeks after she said that she didn't believe in pandas. This was after two weeks of going from doctor to doctor, walk in clinic to walk in clinic, and to the local children's hospital clinic. I felt helpless, yet hopeful that I would help my son. Then after getting that script, I got creative with the walk in clinic, and was able to get a second prescription for him. The doctor at the walk in clinic said that he didn't believe my son had strep right now, but said that he would prescribe it. Then I used the remaining dose to reduced my ds7's dose, and went to the pediatirican. I found that day 11 was the magical day for ds7. He was tic free. The anxiety had decreased. Even my dh noticed! He said, yes, the medicine seems to be working! I said that it was magical, but not perfect. There were some days that ds7 would wake up in a strange mood though. For example, on day 12, he woke up screaming at me saying that I was staring at his eye, and he couldn't open his eye. It was very strange. Then, after about 4 minutes, it passed after I convinced him that I was not staring at his eye. Could this be the "die off" that people talk about? That is when my dh said, maybe we should take him off the medication! Anyways...the rest of the day was great! He didn't freak out about stuff. I took him to the pediatrician on day 12, I believe it was, to demonstrate to her how much he had changed. He wasn't afraid of elevators, he didn't have those shoulder shrug tics, although he was still doing the huh sound with his mouth closed every so often. He even looked healthier. Another interesting thing happened after two 5 day courses of taking the azithromycin: my ds7 no longer had chest pains on his right side that he has been complaining about for the past 3 months, and no longer had this lingering cough that has had for the past 2 years it seems. He had been diagnosed pneumonia two times in his life when he was much younger, but only after x-rays confirmed the pnemonia. Both times, his pediatrician said that he seemed fine, but ordered a chest x-ray, and it was confirmed that he had pneumonia. (This pediatrician used to take x-rays for everything before, so much so, that I was concerned about the number of x-rays he had taken by the time he was 3 years old.) Anyways, I often asked her about his lingering nasal congestion and cough, and she dismissed it as allergies. I have posted before about this pediatrician and her views on sinus issues in children. I had often asked her whether or not he could have had sinus problems, because I was having them, and each time, she said that it wasn't possible because children's sinuses are too small. Well...anyways...so he no longer had this lingering cough and the recent chest pain. She dismissed it as a possible tic, which I question considering that it suddenly stopped after the two courses of high dose azithromycin (it was dosed for strep, which is higher than for pneumonia, and then I gave him one extra week of a low dose of azithromycin which was the leftover that I had, which happened to be the dosage for eradicating pnemonia). I suspect that he had mycoplasma---walking pneumonia---for a few years. Can I confirm it, no. If I get him tested for mycoplasma after it has been eradicated, will he have titers that show up somewhere? Anyways...so just before going to the pediatrician's office, I took a stroll around the mall close to the doctors office, which is not typical for me. Out of joy for the fact that 1) I was able to get him azithromycin, and 2) that he had considerably improved, I decided to give in, and buy one of those gumballs that come out of the machines. Unbelievable...he started the shoulder shrugging. Mind you, it wasn't as constant as before, but it was there. When the sudden thing happened, it was every 6 seconds. After the gumball incident, it was 1 per minute. Well...the pediatrician said that she still didn't believe in pandas, explaining that in her hospital they don't see any pandas cases. I suggested that the doctors need to ask the right questions, such as inquiring about illnesses prior to such episodes, particularly sore throats. She dismissed it by saying that sore throats are a childhood norm. She added that my ds7 still had shoulder shrugs, albeit considerably lessened, thus, she would not prescribe another course of azithromycin. She added that she had never given kids more than two courses of it (10 days). I made the mistake of telling her that I was able to get an additional week's worth from a walk in clinic doctor, but I didn't explain what I told the doctor to be able to get the additional weeks worth of it. Oh well...that was it. She would not prescribe it again. She was very clear that pandas is controversial. She put him on a referral list to see a doctor at Sick Kids Hospital in the Movement Disorders clinic. We still have not received info about when this will take place, likely in a few months. His pediatrician said that she did not want me to be my ds7 physician. So, that is it. Dr. K wrote to me requesting for the blood work. I will fax over the blood work to him. Will he be able to work with me while I am in Canada, and he is in the US? My ds7 is back to many of the behaviours that he presented with or was experiencing before the azithromycin, although he is no longer totally freaked out about elevators. He has these shoulder shrugs that can be often and less often depending on the time of day, what he eats, whether he feels anxious or sad, whether he has a lot of sugar, and it seems that wheat and dairy are issues. He still wants me around though, and he doesn't want to go to any games without me. If you recall from my original post about my ds7, I had him overprogrammed in many programs, and I really set the bar high for him before. Now...I have been taking it easy with him. He loves soccer, so he is enrolled in a team soccer league, and also plays soccer at a field with the local kids. He wants me to be around. I asked him if he wanted me to put him into any tennis or something else this year, and he said that he didn't, and he certainly didn't want me not to be around. So, I play tennis with him, soccer at home, floor hockey at home with him, and lots of board games. Of course, I read him all those interesting mystery novels that he loves so much. I feel a little helpless. I was feeling really hopeful at one point. I loved that when he was sick, some of you wrote back to explain that they regress a bit when that happens, so it allowed me to understand what was going on. I appreciate all of the feedback and knowledge that I have gotten from this forum. I have been reading a bit, and noticed that the doctor who co-wrote the book with Jenny McCathy talks a bit about pandas. He said that he believes that kids should be on anti-fungals at the same time. Thoughts on this? Are your children on anti-fungals? What do you all suggest that I do? Yes, I was creative in getting him azithromycin one time from a doctor in a walk in clinic. I might be able to keep it up using a different strategy with a different doctor. I would, however, prefer to have the support of a doctor who knows more about medicine than I do. I feel like one of the parents from Lorenzo's Oil, trying to learn everything I can about this stuff. Thanks for letting me vent. Any suggestions are appreciated. Plus...my ds7 also moved around a lot more in his sleep while on azithromycin. I don't know if this is common for other children. I also found him to be a lot more active then usual, and wondered about it being a side effect of azithromycin. It was listed as a side effect on some web site. DS7 does not have ADHD, so the burst of energy was interesting, particularly at night with all of his thrashing around the bed. Has anyone's child also done this thrashing around in bed thing while on azith? I am editing this post because when I originally wrote it, my dh wanted me to get our ds7 ready for bed after his late soccer game, and wanted me off the computer...like now... Hmmmm...nobody's life is perfect. I have been reading a lot of stuff which I will eventually post on this site when I figure out how to do it. It sounds like some doctors are trying to make the links to figure it all out, and other doctors are disputing the whole pandas idea based on clinical trials which do not take into account the parent(s)' lived experience with this whole thing. The perspective of a child's parents are critical, because they have witnessed changes in their child(ren) during or immediately following an illness. Such informatio is relevant. Yet some researchers and doctors fail to address this qualitative piece, citing only studies that compared children with strep with matched controls. They fail to see that not all children who develop strep end up presenting with these sudden changes. Plus, they take Swedo's criteria for pandas, and note that children have to present with ALL of the symptoms that she lists. That is also problematic. We know that even in medicine, a child can have something like pneumonia without the fever, although fever that will not go down is one symptom, plus pain in the chest or abdominal area. Similarly, not all children who had strep and suddenly present with "different" behaviours, will present with every single behavioural characteristic listed by Swedo. I believe that her work was a work in progress that needs some fine tuning to explain that children do not need to present with all of the symptoms in order to have pandas. Researchers (doctors) who are critiquing pandas appear to go down a check list and then dismiss the notion of pandas when children don't present with all of the symptoms, it seems. Furthermore, I notice that some researchers who question the existence of pandas cite the fact that children in the US community setting did not test positively for strep. We know that children could have had a prior infection, and then months later or years later the parents make the connection re: strep and the behaviour. Or perhaps parents made the connection right away, which is what I believe, but doctors never proposed pandas as a possibility to the parents, because some doctors don't believe it exists. Anyways...that's all. Just some thoughts on the subject. I pray that all of our children are healed. I want to see pandas prevented, and the only way to prevent it, is to ensure that doctors are vigilant about strep tests, and they believe that pandas is real. Edited July 21, 2010 by Sweet Cheeks Mom Link to comment Share on other sites More sharing options...
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