kimballot Posted July 2, 2010 Report Share Posted July 2, 2010 Thanks kimballot for the post. You said that it is a good idea to keep a chart/notes on the behaviours that I see and scale them. Thanks for the suggestion. Do you find that helpful for your own notes and for the doctor? Do you mean, we include when our children's behaviour improves during what activities and when they get worse with other activities and food products that they eat? Will doctors respond to this information, or is it more useful for us to keep track of for our own benefit? I would also strongly rec VIDEOTAPING behaviors/tics/movements since they might not be present when you actually go in to see a doc (or they might go away). EA mom- yes - videotaping is great especially if you can do it without the child realizing it! Link to comment Share on other sites More sharing options...
EAMom Posted July 2, 2010 Report Share Posted July 2, 2010 You said that you "think that we need to be VERY careful with our kids - esspecially the pandas kids - anxiety goes hand in hand with depression." Do you mean that this is a life-long thing that needs to be constantly watched/monitored? IMO "yes". Link to comment Share on other sites More sharing options...
kimballot Posted July 2, 2010 Report Share Posted July 2, 2010 One thing I did (finally) this year was to get a copy of EVERY office visit and EVERY lab from EVERY doctor my child has seen. I was amazed at the number of times I was told things were "normal" or "OK", when there were real signs that we were headed down a bad path. As an example, this year my son showed some immune deficiencies in the antibodies for the type of bacteria that causes sinus infections (s pneumoniae). I was very surprised because all of his immunology reports when he was younger showed this to be fine and he had 2 peumovax shots when he was a preschooler due to chronic sinusitis. Well.. just 2 weeks ago I picked up notes from a gastroenterologist we had seen in 2007, and his levels were low BACK THEN. She never told me (I guess she did not see how it was affecting his gastic system). Had I known his levels were low, I would have kept a closer eye on his sinuses and we may have been able to avoid some exacerbations. Also, now that I have that documentation, the immunologist we are working with now has documentation of longer-standing immune deficiency, so it is more evidence for the insurance company. So... get copies of all blood work, office visits, and medications. Make an excel file with the dates, illnesses, blood work, and medications, AND any behavioral changes that you recall (like unusual difficulty in school, wetting the bed, difficulty going to sleep alone at night, handwriting problems...) That will help you to track the history of this. I am guessing there were signs of this earlier on that you did not know to look for. Check out the PANDAS network website (http://www.pandasnetwork.org/) for ideas of the types of behavioral things you should be looking for. Link to comment Share on other sites More sharing options...
TessaKrista Posted July 2, 2010 Author Report Share Posted July 2, 2010 I don't know if you live in the U.S. or Canada. I am wondering about the immunologist. Did you ask your pediatrician to refer you to an immunologist, or did the pediatrician see something in the bloodwork that he/she believed would best be treated by an immunoloigst, or did you see a pandas doctor that referred you to the immunologist? In Canada, we need to get a referral to a specialist before moving on to see that specialist. We don't pay for any specialists, but we often have to wait to see them, and some doctors don't like to refer to specialists unless they have some kind of paper work or symptoms that they believe warrant specialist intervention. I really like the idea of seeing an immunologist. My son went to the Hosptial for Sick Children (HSC) last year because we weren't sure if he had an allergy to penicillin. He had a very itchy rash when he took Novo Amoxil and Biaxin. They said Biaxin was a different family. Well...at the HSC he went to a clinic that had immunologists and allergists. I wonder, are they all connected somehow? Link to comment Share on other sites More sharing options...
TessaKrista Posted July 2, 2010 Author Report Share Posted July 2, 2010 (edited) Today is Friday. My son has a fever today of 39 celcius, felt tired, didn't want to eat, had the sniffles all night, and said that his tummy hurt. After his bowel movement, he said that he felt better. I guess that he has caught something. He was up and down at night because of his sniffles. He woke up today just after 9 a.m., went to the dentist, and arrived home just after 10, took an epsom salt bath, and went to sleep. This is not common for him. do you think he's just sick? Of course I start to worry that the azithromycin could have affected him, but there have been two sick children around him in the past few days. I will get the Advil or Motrim, which will help with the fever and with any inflamation in general. One of the moms suggested Advil/Motrim as an adjunct to azithromycin in general. Good idea. Thanks for your outpouring of support, questions, answers, suggestions, and links. What a great forum with great parents on it. Edited July 2, 2010 by Sweet Cheeks Mom Link to comment Share on other sites More sharing options...
EAMom Posted July 2, 2010 Report Share Posted July 2, 2010 good luck! I hope he feels better soon. Link to comment Share on other sites More sharing options...
TessaKrista Posted July 2, 2010 Author Report Share Posted July 2, 2010 DataGirl...no I am not offended. We all do the best we can, given our situations and what we believe is the best at the time. You are doing wonders with your family. Juggling things is challenging. Keep up the great work. Link to comment Share on other sites More sharing options...
colleenrn Posted July 2, 2010 Report Share Posted July 2, 2010 Sweet Cheks, When it says 200mg/5ml it means that is the dose once it is reconstituted, which just means has the water added to the powder. When you measure out 7.5 ml you are giving him 300 mg of Zithromax (200mg in 5ml and another 100mg in the 2.5 ml). For his weight, he is getting almost 13mg/kg/day, whicch is a good dose. Colleen Link to comment Share on other sites More sharing options...
TessaKrista Posted July 2, 2010 Author Report Share Posted July 2, 2010 I have already started videotaping the different behaviours, which wasn't much of a switch in our family, because I am always videotaping. What I did differently though, was that one day, I told my son that I would come back to videotape, and I left it running all set up on him, without him knowing. That way, I saw what he does when he doesn't realize that he is being watched. He was sitting on the bed, and for about half an hour, I let the thing run. One time during our bedtime routine, I did the same, and strategically pointed the camera at him. I told him that it wasn't working and that I was re-charging it, so that he didn't think that he was being videotaped. I also videotape him while he is playing with friends, and I notice that he does not try to modify his behaviour then, because he is having fun at our house during play dates. Thanks for the great suggestion. Link to comment Share on other sites More sharing options...
EAMom Posted July 2, 2010 Report Share Posted July 2, 2010 If your son is getting sick (whether it's strep or something else...viral) be prepared for a possible exacerbation in tics/beh. symptoms. Once the "wheels of PANDAS are set in motion" many PANDAS kids react to non-strep illnesses. Link to comment Share on other sites More sharing options...
norcalmom Posted July 2, 2010 Report Share Posted July 2, 2010 My son will flare before getting sick. Theory is immune system is doing its job - It sends out antibodies to the virus (keep us healthy) but our immune systems uses somewhat of a shotgun approach - sends out many different kinds of antibodies includes some to strep...so... his pandas systems will get worse for a while. This is much improved on antibiotics, but it still happens. We had tummy trouble first couple weeks on antibiotics - until I figured out when and what to give with. Try not to give the Advil near the antibiotic. We did this and got bright green diarrhea which prompted appointment with gastroenterologist. She said that the Advil was far tougher on the gut than the antibiotics, so use sparingly, with food, and try to give a couple hours apart. We had some stomach aches when we started the azith as well, especially at higher does. I find food helps, and also we separated the dose, gave 250 in morn and 250 in afternoon. The gastro appointment turned out be something we needed to do anyway - she ruled out celiac disease for us (as well as other nasty gut stuff), and another test showed low IGG...which led us to an immunologist. To answer your question back in the thread "do you think that our pandas kids can be cured?". I'd have to say no. I think that a high percentage will go through puberty and their immune systems will cure themselves. I think we can cure one episode. I think that we can protect them and give them the best chance at being in that high percentage with antibiotics, steroids, ivig and pex. They are still susceptible to what set them off in the first place, so I wouldn't call it cured. I think there is a genetic component when coupled with antagonist (strep) the immune system will react the same way as before. So the antibiotics protect them from the antagonist(s). But what I meant was that we need to protect our kids from the stress and pressure of the "achievement culture". I do think that stress can make exacerbations worse. And lower the immune response - leaving them more susceptible to viruses and other illnesses which for our kids can mean pandas symptoms. That's my opinion, so of which is from experience and some is from reading this board for almost a year and anything else I can get my hands on). Your son is only 7 - so you caught it early. There is every reason to believe he will recover, and you will be able to protect him from more exacerbations. And there is NO WAY you caused his pandas, so let that guilt that you contributed to it go. As for the pressure you think you put on him, I've been there, so have many of us. I still have guilt bcs I could only breast feed him a couple months due to reflux..(and I wonder is that messed up his immune system). I have a number of friends with older kids - I learn soooo much from them. In the end it’s all about healthy, happy, productive members of society. Not sending them to MIT or Harvard. I remember when my oldest was going into kindergarten. I STRUGGLED with the decision of whether or not to put her ahead year (she is 3 weeks from the cutoff date, she is very tall, precocious, was reading, most of her little friends were going into 1st grade..) Then I called my friend with 2 kids , 6 and 8 years older than mine. She just laughed and said "you know everyone holds their boys back...do you really want your 14 year old girl in class with 16 year old boys with their drivers licenses?". Decision Made! I hope he is feeling better soon. Kerry Link to comment Share on other sites More sharing options...
TessaKrista Posted July 3, 2010 Author Report Share Posted July 3, 2010 Hi Kimballot! Once again, thanks for the post. I am still searching for a pandas friendly doctor in Canada, preferably somewhere close to Toronto. Still...searching... Link to comment Share on other sites More sharing options...
EAMom Posted July 3, 2010 Report Share Posted July 3, 2010 We are in California. At that point, we were with a PPO so we didn't need a referral from our Ped. (When we had a HMO, we needed referrals, but were always able to get them...I think our ped realized our case was over her head, and had no problems deferring to higher powers!) If you are thinking of IVIG, or want to investigate whether your child has an underlying immune deficiency (in addition to PANDAS, or contributing to infections which could contribute to PANDAS symptoms) you'd want to see an immunologist. Plus, not many peds order IVIG. Immunologists do all the time. Basically, we saw the immunologist so we wouldn't have to travel to Chicago (Dr. k.) for IVIG. For us, allergy and immology was also in 1 department. The other type of doc that might be helpful would be a neurologist (esp. since your son has tics as a big symptom). Unfortunately, many neurologists are "PANDAS non-believers". Link to comment Share on other sites More sharing options...
TessaKrista Posted July 3, 2010 Author Report Share Posted July 3, 2010 Norcalm, I can relate to your post. I wondered whether we should do the private school thing in JK, and then just went with the local school. I didn't understand why this teacher wasn't pushing the kids like the private school kids were being pushed, so I enrolled him in Oxford Learning centre, so that he would be on par with other kids outside of the school. My sister in law who has grown children laughed and told me to take it easy. She is the school social worker at my son's school, and said that the teacher is nice and the school is very nice, and to relax. It is easier to say that after having grown kids. We learn through experience for sure. We can now turn around and warn others, but will they be apt to heed our warnings? You seemed to be ahead of the game, listening to your friend who was an experienced mother. Typically we need to go through the experience in order to understand what other people meant by it all. No...the breast feeding thing with your son didn't do it for sure. I breast fed him until he weaned, at 2 or something like that. He had his immunity for sure, and he would still get sick with pneumonia, and croup, and has allergies to dust mites and mold. We do what we believe is best for our children given what where we are at in our lives, and given what our bodies can do. My body can no longer run around doing all of the things that it did with him. I don't want to. I want a healthy boy. Link to comment Share on other sites More sharing options...
TessaKrista Posted July 5, 2010 Author Report Share Posted July 5, 2010 DCMom, you are an awesome human being. Thanks for your post. We all try the best we can, given what we believe is the best at the time. Then...we modify our actions, based on new information that comes our way. Thanks... Link to comment Share on other sites More sharing options...
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