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You know, I really looked over the videos of my ds7 when he started to change in Feb (a few months ago) during an illness, and I realize that he had this huge cough that initially sounded croupy like, he had a lot of phlegm that was green eventually, he was tired, his voice was a little different, he had nasal congestion, and had a slight fever. The cough went on for a while. I thought that it was the flu. Could it have been pneumonia or the H1N1 thing that was floating around? I never considered that as a possibility. It was around the time when everyone here in Toronto and Mississauga were getting vaccinated for H1N1, and I was one of the very few parents who opted out of this new free vaccine for my kid. In Feb, during this illness that he had that seemed to linger on, he had suddenly started this mouth tic where he opened his mouth wide and pushed his jaw out, but only when I read stories to him, and only when he was watching some sort of screen. He needed me to be around him at bedtime and throughout the night, frantically calling out to me, to the point where I just stayed in bed with him to comfort him. He also started really hating clothing tags. They really bothered him. Socks with odd linings also really started bothering him. He also occasionally did this head turning thing whenever he was stressed about something it seemed, like reading a difficult passage or doing some kind of demanding homework for school. He wouldn't say that he couln't do it, he would just do the head thing. But he also started turning his head when he was on my laptop watching a video. I noticed all that back in February, and videotaped it all. I even left the camera running while I read to him at night and while he watched a program on TV and when he was on the laptop, to be able to see what he was doing without staring at him. Then at the very end of April, he added this ongoing shoulder shrug tic and clinginess.

 

I notice that he now looks at me as if to see if I am watching him before he does the mouth and jaw thing when I am reading to him. I can see him from my peripheral vision, which he doesn't realize yet at 7, and I haven't told him about.

 

Anyways...if he had strep, which is seems like he did based on the blood work and presenting symptoms, and also pneumonia that lingered on, what kind of tests should I request to help him out? I will be going to The Hospital For Sick Children later on today sometime in the morning. I am trying to get to the bottom of this sudden change in him, wondering if there is some infection that is still lingering, and also to deal with new presenting symptoms. He had complained about pains in his chest, but his doctor said that he was fine. I am really questioning his doctor's skills. She either takes millions of xrays, or does nothing and dismisses things. When he was very small, she just kept ordering xrays like crazy. I think now that she just wasn't experienced enough in her practice, and wanted to cover her basis. I don't know. Yet, she missed so many things. Plus, one time when my little boy was 2, she thought that my son might have measels or something, she wasn't sure whether it was an allergy to penicillin, because he had a rash on his body, but not on his face. Years later, the folks at Sick Kids Hospital did a challenge test on him, and while we talked, they told me that when children are sick, it is common for them to get the rash that I described to them. Hmmmmmm.....

 

Anyways....with the most recent attempts at trying to deal with what is happening, I had discovered that after 10 days of azithromycin at full dose and 4 days at half dose, his chest pains ended, only to return again two weeks later, although not as severe as before. He is also complaining of pain at the bottom of the front of his neck when he breathes. Another concern is that his left testicle became swollen and painful to the point where walking hurt him. He went into the tub, and the swelling decreased and the pain subsided. He said that his testicle no longer hurt on its own, and only hurt if he touched it hard. Then, the next day there was no swelling or pain. I want to see what is going on. Perhpas an ultrasound is warranted. Additionally, he is now complaining that the left side on his back is hurting. Perhaps a kidney issue, and maybe not. A urine sample is warranted. I am going to wait as long as I need to at the hospital. His pediatrician seems to miss things, and dismisses things by normalizing them as common childhood complaints. Parents are welcome to go to Sick Kids Hospital when they want a second opinion, when they aren't sure whether or not their doctor has supplied them with the correct info, or when their doctor is unavailable. I have gone in the past, and the wait has always been considerable (many many hours).

 

I should have just taken him there in the first place when he was sick. I used to go a lot before, but the long long wait was always a deterrent. Plus, people go to hospitals when they are sick, so I always worried about him getting worse. They have the best doctors there. I am going to have to make a concerted effort to always take him there.

 

I am writing this message at 4 in the morning, because I woke up worried about my little guy. After watching the videos that I took of him when he was home sick and suddenly started changing, I realized that perhaps there was pneumonia there as well. How the heck did I think that he had the flu? He had pneumonia two times in the past, both of the times his pediatrician said that his chest did not sound like it had pneumonia, but an xray confirmed the pneumonia both times. Each time she explained what happened saying that she suspected that it goes deep inside of his lungs, to the point where one cannont hear it on the stethescope (sp?).

 

I am thinking of asking the hospital for

1) an immune workup

2) mycoplasma workup

3) urine test for kidney function

4) chest xray

 

Is there anything else that I should request?

 

You know, here in Canada the vaccine schedules have kids receiving some sort of vaccines in between 4-6 years of age. I never got him vaccinated because he always seemed congested with a lingering cough. Then I noticed that he seemed sensitive to certain foods and environmental things, so I was concerned that maybe the vaccines would cause more probs.

 

Something curious... before all of this started, I remember noticing at live plays and at school that he would cover his ears whenever there were very loud cheers from an audience, and when people had a microphone that was on too high, and they had high pitched piercing voices. I remember feeling that the sounds were excessive, but I noticed that he would cover his ears whenever they were too loud. Sometimes I would join him because they were excessive. Just wondering... It points to a sensory issue, and certainly the illness in Feb intensified sensory issues such as the socks and the clothing tags. Interestingly, after the 10 day full course of azithromycin and 4 day half course of azithromycin, the clothing tags are not huge issues like before. The socks don't seem to bother him like before either. The sounds though, still bother him. My dh rationalizes it by explaining that ds7 rightfully covers his ears when noises are too loud. Dh says that everyone should be covering their ears. Ds7 doesn't cover his ears with regular loud sounds like the vacume or anything like that, only loud piercing sounds, when the rock music in the car is loud, when the school plays a movie at school with the volume high, when their is loud cheering from a crowd, when someone with a high pitched voice says something loud on the microphone.

 

He went to an ENT because he used to have enlarged adenoids when he was 3 1/2 to the point where he had difficulty breathing at night. He would stop for 8 seconds at a time, and had loud laboured breathing. Eventually that passed. The ENT and audiologist tested his hearing, and he hears within normal range. The ENT said that her son also covers his ears when things are loud. You know, I realize that the sounds are indeed very loud. That is true. However, I find it odd that he is the only kid who covers his ears when the sounds get very very loud.

 

Just wondering if sensory issues are also connnected to this thing or not.

 

The pain of this whole change in my little boy has really taken a toll on me. I no longer feel the overwhelming joy that I felt before. I still cry a lot. I still pray a lot. I feel responsible on many levels. I think that we need to nurture our children, and not stress them out. I think that we need to jump when they are sick, regardless of whatever perception is out there about parents that jump at the smallest thing. Better to be safe. I can't believe the high expecgtations that I had. I can't believe the pressure I put on him. I can't believe it all. I can't believe this nightmare that I am in. I still feel the pain.

 

I look at his old videos from just before February, and I cry at the little boy that existed. I love my little boy so much. Why did I not just jump and deal with his sickness by taking him to the best hospital in Toronto? Why did I believe that it was just one of those flu things? Why did I dismiss his sore throat? Why do I listen to his doctor? Why is his doctor so relaxed about sore throats and chest pains? What is wrong with me? Why didn't I just jump and take him to Sick Kids Hospital when he was sick in February? They would have done a total workup on him. What the heck is wrong with me?

 

Since he started grade 1, I went back to work full time. I was a college prof, and decided to do school social work so that I could have the same vacation and days off as my ds. I didn't even really want to work full-time. Of course, dh suggested that I return to work full-time since ds was going to be in school full-time. It was against my better judgement. Being a school social worker in a number of schools meant that a lot of people depended on me to be available. Even though I had 20 sick days to take, I still felt odd taking so much time off to be home with my little boy. I didn't need that job. Seriously! I needed to mother my child, only. That has always been my motto, which is why I spent his formative years with him. I was the best person to care for him. Yet...what happened to me when I suddenly went back to work full-time. What is wrong with me? I felt compelled to help other families and the school personnel. When work impacts on our personal lives, we need to let go of something. I didn't even need to work full time. The job no longer permitted me to be as available to my son at his school. He used to ask me when I would come and volunteer at his school again, because he liked me being there at book fairs, plays they put on etc. My little boy should have always come first! Always! Especially when he was sick! Instead, I just figured that he had a flu with a sore throat and fever, I stayed home with him, and still helped clients out from home on the phone. No way!

 

This academic year in Sept, I will be working 3 days per week at the school board. I want to help out at his school. I want to be available to him. I stayed home with him for the first years of his life up until he started grade 1, and only taught the occasional course here and there, while he was in kindergarten, or evening courses when my dh was home.

 

When I would go to Sick Kids Hospital for second opinions. I would get my dh to come with us on weekends, first thing in the morning, or I would spend the whole day there during the week to find out what was wrong. Typically I would go to his pediatrician for many many things. I was the mom who was at the doctors office with a lot of questions. The only thing that I really like about his ped is that she will take as much time as needed to talk to you about what is going on. Very rare. What she lacks in skills, she makes up for in bedside manners. She will spend 20 minutes to 1 with a child and parent. As you can figure, one can end up waiting an hour in her office for a scheduled appointment that was meant to happen one hour before. She has gotten better, I suppose that she has fine tuned her craft and scheduling more. I really wanted this experienced doctor around here who has a radio show, but he wasn't taking children on the week that my son was born. That doctor is quick and harsh, but knows his stuff.

 

Anyways...I just felt like venting. I, like all of you, am trying to get to the bottom of this situation. I am wondering if many of you also feel helpless. If you also cry a lot.

 

As I mentioned, I have the same holidays as my son, so I have the summers off. My dh is a prof, and this year happens to have the same months off in the summer. That doesn't always happen. Anyways....dh says that I am mourning my summer vacation away. I explain to him that I need to mourn. I am just devestated by all of this. I feel helpless. I want to be able to make everything better. I have regrets that I need to put into perspective an learn from. I need to warn others about things that I have now learned, but I know that most people need to experience something themselves in order to really consider someone elses warning. I am really mad at myself and I am really mad at his doctor for minimizing everything. Had she told me that strep is so severe that it can cause a child to become disabled if not properly treated....well...that would have made me react. Instead, she said not to test for strep after a kid has already had a confirmed and treated strep illness because it will always come up positive. Now I know how negligent that is. I am mad at myself for not just jumping to the hospital like I used to do when my ds was younger, and had an illness. I am mad at my dh for suggesting that I even go to work full-time, when we both knew that I didn't need to. I hated working full-time. I found that it took away from time that I needed to spend with my child. Even though I have the same holidays as my son, children still put on plays at school, and have speech contests, and all sorts of things. Why shouldn't I be a parent who is involved in his school life? He is young enough to appreciate it. Not too old to find it intrusive. But....the big challenge that I found was juggling when my child was sick, and explaining to one of my many schools that yes...I was going to be off again...because my child was sick, again. It is that dilemma that woman deal with, as mothers and working professionals. You know...something has to give. We cannot do it all alone.

 

This forum is a form of support for me. Thanks to all. Please send suggestions re: tests to request at Sick Children's Hospital. I will be going there this morning.

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You know, I really looked over the videos of my ds7 when he started to change in Feb (a few months ago) during an illness, and I realize that he had this huge cough that initially sounded croupy like, he had a lot of phlegm that was green eventually, he was tired, his voice was a little different, he had nasal congestion, and had a slight fever. The cough went on for a while. I thought that it was the flu. Could it have been pneumonia or the H1N1 thing that was floating around? I never considered that as a possibility. It was around the time when everyone here in Toronto and Mississauga were getting vaccinated for H1N1, and I was one of the very few parents who opted out of this new free vaccine for my kid. In Feb, during this illness that he had that seemed to linger on, he had suddenly started this mouth tic where he opened his mouth wide and pushed his jaw out, but only when I read stories to him, and only when he was watching some sort of screen. He needed me to be around him at bedtime and throughout the night, frantically calling out to me, to the point where I just stayed in bed with him to comfort him. He also started really hating clothing tags. They really bothered him. Socks with odd linings also really started bothering him. He also occasionally did this head turning thing whenever he was stressed about something it seemed, like reading a difficult passage or doing some kind of demanding homework for school. He wouldn't say that he couln't do it, he would just do the head thing. But he also started turning his head when he was on my laptop watching a video. I noticed all that back in February, and videotaped it all. I even left the camera running while I read to him at night and while he watched a program on TV and when he was on the laptop, to be able to see what he was doing without staring at him. Then at the very end of April, he added this ongoing shoulder shrug tic and clinginess.

 

I notice that he now looks at me as if to see if I am watching him before he does the mouth and jaw thing when I am reading to him. I can see him from my peripheral vision, which he doesn't realize yet at 7, and I haven't told him about.

 

Anyways...if he had strep, which is seems like he did based on the blood work and presenting symptoms, and also pneumonia that lingered on, what kind of tests should I request to help him out? I will be going to The Hospital For Sick Children later on today sometime in the morning. I am trying to get to the bottom of this sudden change in him, wondering if there is some infection that is still lingering, and also to deal with new presenting symptoms. He had complained about pains in his chest, but his doctor said that he was fine. I am really questioning his doctor's skills. She either takes millions of xrays, or does nothing and dismisses things. When he was very small, she just kept ordering xrays like crazy. I think now that she just wasn't experienced enough in her practice, and wanted to cover her basis. I don't know. Yet, she missed so many things. Plus, one time when my little boy was 2, she thought that my son might have measels or something, she wasn't sure whether it was an allergy to penicillin, because he had a rash on his body, but not on his face. Years later, the folks at Sick Kids Hospital did a challenge test on him, and while we talked, they told me that when children are sick, it is common for them to get the rash that I described to them. Hmmmmmm.....

 

Anyways....with the most recent attempts at trying to deal with what is happening, I had discovered that after 10 days of azithromycin at full dose and 4 days at half dose, his chest pains ended, only to return again two weeks later, although not as severe as before. He is also complaining of pain at the bottom of the front of his neck when he breathes. Another concern is that his left testicle became swollen and painful to the point where walking hurt him. He went into the tub, and the swelling decreased and the pain subsided. He said that his testicle no longer hurt on its own, and only hurt if he touched it hard. Then, the next day there was no swelling or pain. I want to see what is going on. Perhpas an ultrasound is warranted. Additionally, he is now complaining that the left side on his back is hurting. Perhaps a kidney issue, and maybe not. A urine sample is warranted. I am going to wait as long as I need to at the hospital. His pediatrician seems to miss things, and dismisses things by normalizing them as common childhood complaints. Parents are welcome to go to Sick Kids Hospital when they want a second opinion, when they aren't sure whether or not their doctor has supplied them with the correct info, or when their doctor is unavailable. I have gone in the past, and the wait has always been considerable (many many hours).

 

I should have just taken him there in the first place when he was sick. I used to go a lot before, but the long long wait was always a deterrent. Plus, people go to hospitals when they are sick, so I always worried about him getting worse. They have the best doctors there. I am going to have to make a concerted effort to always take him there.

 

I am writing this message at 4 in the morning, because I woke up worried about my little guy. After watching the videos that I took of him when he was home sick and suddenly started changing, I realized that perhaps there was pneumonia there as well. How the heck did I think that he had the flu? He had pneumonia two times in the past, both of the times his pediatrician said that his chest did not sound like it had pneumonia, but an xray confirmed the pneumonia both times. Each time she explained what happened saying that she suspected that it goes deep inside of his lungs, to the point where one cannont hear it on the stethescope (sp?).

 

I am thinking of asking the hospital for

1) an immune workup

2) mycoplasma workup

3) urine test for kidney function

4) chest xray

 

Is there anything else that I should request?

 

You know, here in Canada the vaccine schedules have kids receiving some sort of vaccines in between 4-6 years of age. I never got him vaccinated because he always seemed congested with a lingering cough. Then I noticed that he seemed sensitive to certain foods and environmental things, so I was concerned that maybe the vaccines would cause more probs.

 

Something curious... before all of this started, I remember noticing at live plays and at school that he would cover his ears whenever there were very loud cheers from an audience, and when people had a microphone that was on too high, and they had high pitched piercing voices. I remember feeling that the sounds were excessive, but I noticed that he would cover his ears whenever they were too loud. Sometimes I would join him because they were excessive. Just wondering... It points to a sensory issue, and certainly the illness in Feb intensified sensory issues such as the socks and the clothing tags. Interestingly, after the 10 day full course of azithromycin and 4 day half course of azithromycin, the clothing tags are not huge issues like before. The socks don't seem to bother him like before either. The sounds though, still bother him. My dh rationalizes it by explaining that ds7 rightfully covers his ears when noises are too loud. Dh says that everyone should be covering their ears. Ds7 doesn't cover his ears with regular loud sounds like the vacume or anything like that, only loud piercing sounds, when the rock music in the car is loud, when the school plays a movie at school with the volume high, when their is loud cheering from a crowd, when someone with a high pitched voice says something loud on the microphone.

 

He went to an ENT because he used to have enlarged adenoids when he was 3 1/2 to the point where he had difficulty breathing at night. He would stop for 8 seconds at a time, and had loud laboured breathing. Eventually that passed. The ENT and audiologist tested his hearing, and he hears within normal range. The ENT said that her son also covers his ears when things are loud. You know, I realize that the sounds are indeed very loud. That is true. However, I find it odd that he is the only kid who covers his ears when the sounds get very very loud.

 

Just wondering if sensory issues are also connnected to this thing or not.

 

The pain of this whole change in my little boy has really taken a toll on me. I no longer feel the overwhelming joy that I felt before. I still cry a lot. I still pray a lot. I feel responsible on many levels. I think that we need to nurture our children, and not stress them out. I think that we need to jump when they are sick, regardless of whatever perception is out there about parents that jump at the smallest thing. Better to be safe. I can't believe the high expecgtations that I had. I can't believe the pressure I put on him. I can't believe it all. I can't believe this nightmare that I am in. I still feel the pain.

 

I look at his old videos from just before February, and I cry at the little boy that existed. I love my little boy so much. Why did I not just jump and deal with his sickness by taking him to the best hospital in Toronto? Why did I believe that it was just one of those flu things? Why did I dismiss his sore throat? Why do I listen to his doctor? Why is his doctor so relaxed about sore throats and chest pains? What is wrong with me? Why didn't I just jump and take him to Sick Kids Hospital when he was sick in February? They would have done a total workup on him. What the heck is wrong with me?

 

Since he started grade 1, I went back to work full time. I was a college prof, and decided to do school social work so that I could have the same vacation and days off as my ds. I didn't even really want to work full-time. Of course, dh suggested that I return to work full-time since ds was going to be in school full-time. It was against my better judgement. Being a school social worker in a number of schools meant that a lot of people depended on me to be available. Even though I had 20 sick days to take, I still felt odd taking so much time off to be home with my little boy. I didn't need that job. Seriously! I needed to mother my child, only. That has always been my motto, which is why I spent his formative years with him. I was the best person to care for him. Yet...what happened to me when I suddenly went back to work full-time. What is wrong with me? I felt compelled to help other families and the school personnel. When work impacts on our personal lives, we need to let go of something. I didn't even need to work full time. The job no longer permitted me to be as available to my son at his school. He used to ask me when I would come and volunteer at his school again, because he liked me being there at book fairs, plays they put on etc. My little boy should have always come first! Always! Especially when he was sick! Instead, I just figured that he had a flu with a sore throat and fever, I stayed home with him, and still helped clients out from home on the phone. No way!

 

This academic year in Sept, I will be working 3 days per week at the school board. I want to help out at his school. I want to be available to him. I stayed home with him for the first years of his life up until he started grade 1, and only taught the occasional course here and there, while he was in kindergarten, or evening courses when my dh was home.

 

When I would go to Sick Kids Hospital for second opinions. I would get my dh to come with us on weekends, first thing in the morning, or I would spend the whole day there during the week to find out what was wrong. Typically I would go to his pediatrician for many many things. I was the mom who was at the doctors office with a lot of questions. The only thing that I really like about his ped is that she will take as much time as needed to talk to you about what is going on. Very rare. What she lacks in skills, she makes up for in bedside manners. She will spend 20 minutes to 1 with a child and parent. As you can figure, one can end up waiting an hour in her office for a scheduled appointment that was meant to happen one hour before. She has gotten better, I suppose that she has fine tuned her craft and scheduling more. I really wanted this experienced doctor around here who has a radio show, but he wasn't taking children on the week that my son was born. That doctor is quick and harsh, but knows his stuff.

 

Anyways...I just felt like venting. I, like all of you, am trying to get to the bottom of this situation. I am wondering if many of you also feel helpless. If you also cry a lot.

 

As I mentioned, I have the same holidays as my son, so I have the summers off. My dh is a prof, and this year happens to have the same months off in the summer. That doesn't always happen. Anyways....dh says that I am mourning my summer vacation away. I explain to him that I need to mourn. I am just devestated by all of this. I feel helpless. I want to be able to make everything better. I have regrets that I need to put into perspective an learn from. I need to warn others about things that I have now learned, but I know that most people need to experience something themselves in order to really consider someone elses warning. I am really mad at myself and I am really mad at his doctor for minimizing everything. Had she told me that strep is so severe that it can cause a child to become disabled if not properly treated....well...that would have made me react. Instead, she said not to test for strep after a kid has already had a confirmed and treated strep illness because it will always come up positive. Now I know how negligent that is. I am mad at myself for not just jumping to the hospital like I used to do when my ds was younger, and had an illness. I am mad at my dh for suggesting that I even go to work full-time, when we both knew that I didn't need to. I hated working full-time. I found that it took away from time that I needed to spend with my child. Even though I have the same holidays as my son, children still put on plays at school, and have speech contests, and all sorts of things. Why shouldn't I be a parent who is involved in his school life? He is young enough to appreciate it. Not too old to find it intrusive. But....the big challenge that I found was juggling when my child was sick, and explaining to one of my many schools that yes...I was going to be off again...because my child was sick, again. It is that dilemma that woman deal with, as mothers and working professionals. You know...something has to give. We cannot do it all alone.

 

This forum is a form of support for me. Thanks to all. Please send suggestions re: tests to request at Sick Children's Hospital. I will be going there this morning.

 

 

It sounds like you are on the right track in seeking out more information for him. You are his best advocate and should follow your gut instinct.

Has he been tested for Lyme? Our daughter had many similar things going on and then was ill with "flu" in June 09...never really the same since. We have been treating her for Lyme for 4 months and her overall health is much better and she is functioning well less "sensory" stuff, less anxiety and range, and no more verbal tics. Now, when exposed to strep, her symptoms are less and shorter in duration. I believe that she was intially exposed to Lyme years ago and the illness that June was the last straw on her immune system.

In our case, she had 2 negative Western Blots but positive when tested by IGenex lab. I am not sure if Sick Children's Hospital will send out the blood for you but wouldn't hurt to ask.

Good luck!

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I am so sorry for all your stress and unhappiness.

 

How is your child feeling? My DS9 has primarily tics, but he isn't particularly bothered by them -- just me!

 

I know that mourning is important, but what your husband says is also valid. We have been dealing with this for many years, but in kind of an intense mode for 2 and a half years, and I keep reminding myself that it isn't life-threatening and doesn't cause him pain, and that we are fighting for him as best we can and that someday we will beat this.

 

That said, I am extremely curious about the testicle issue because my DS9 had the exact same thing in March of 2008, in the middle of his highest exacerbation ever. We took him to the ER who did an ultrasound and eventually found nothing wrong.

 

Many months later, I thought of this. He was never vaccinated for MMR, but when we did an titre challenge to MMR as part of his immune workup, he showed a response to mumps. Then I read that many people can have asymptomatic mumps. So, that is possible. BUT...I just read this right now when I was searching for verification of what I just typed .. strep (and staph) can cause orchitis (swollen testicle). GRRRRR! Here's the link: http://www.webmd.com/sexual-conditions/inflammation-testicle-orchitis

 

My son also covers his ears at loud noises. We should talk sometime.

 

I hope your appt goes well today. Since the wait is so many hours, can your son stay with someone for the hours of waiting and just be brought to you when they are ready? That will probably save both of you a lot of stress.

 

Wishing you all the best. You and your son deserve it.

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I'm sorry your feeling so helpless. When my son first become sick, I cried a river. What if.... What if .... It's normal. Everytime a child gets a chronic illness there is a grieving process that the parents go through - anger, guilt etc. You're grieving. It's normal. It's stressful. It's painful. The child that you had is gone and a different child has replaced him. There are a lot of books available to explain this process, they might help ease your pain and give you some peace. Keep helping your child to be the best that he can be and to be happy. Don't take it out on your husband - mine was clueless - two parents are better than one. If your child had not gotten sick, the choices that you had made earlier would have been good choices. Nobody plans on having a sick child.

 

I cannot add to the medical tests available. I've have spent days at hospital for tests and know your frustration. The doctors would roll their eyes at me. I want to carry a business card to give them that says "You have just been diagnosed with a chronic eye rolling tic disorder" with a referral to some nasty web page. I'm kidding? ....right. I do appreciate that there is help out there but I am frustrated by the process of getting it.

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Thanks to all of you who wrote me pm and on this site. I went all ready to request a number of tests, and requesting to see if there are any doctors who are familiar with pandas.

 

Now....please try to visualize the expression you put forth when I pose the following to you. Imagine this: I have just asked you if I could meet with the Queen, King or President of the dwarf planet Pluto that exists within our solar system. Notice your expression. Well, that's what I got, with no response from the doctor. The nurse told me to tell the doctor what I wanted.

 

OK... in the community clinics and my son's pediatrician all said that pandas is not real, it is a fad, it is controverial etc etc. Yesterday at the hospital, I ran into a mother and her son who are on my caseload of "clients" at the school board because her son presents with a myriad of oppositional issues. The mother is well educated, and a specialist nurse in another hospital. Since school is over for the summer, she took her little child into the famous children's hospital to deal with his oppositional issues. I asked about illnesses, and told her what I had learned about pandas, and this mother, the nurse, said that she had never heard of it.

 

I now know that I will conduct my craft as a social worker differently. When children present with a myriad of sudden changes in symptoms, and the schools want their children assessed, I will add a different component to my questions to determine whether or not pandas is a possibility. Sadly though, the reality of non-believers still exists here, so at least it will be a starting point. Next year I will be working in a few schools in different areas from last year, and will have a lot of middle and middle-upper class families. These are the parent who can afford to make a difference if something happens to their children, but they need to believe, and they need to unite. We need to unite. Many of you have written in this forum about not finding support re: pandas because your children experienced their symptoms years ago when this illness was not discussed, and others have described their experiences with doctors who are non-believers, similar to my experience.

 

Anyways...I went to the hospital hoping to get a myriad of tests done. I didn't get the blood tests. They did other things though. I was asked why I was therer a few times. I told them about:

1) the sudden changes that occurred during an intense illness and my suspicion of possible pandas,

2) the strep issues and his pediatrician's reluctance and belief that one does not test for strep any time after a confirmed and treated strep infection because it will always show up as positive,

3) the concern that he had untreated pneumonia for a while,

4) his ongoing chest pain since the suspected strep started and the possible pneumonia started,

5) the ongoing coughs,

6) the left testicle issue that resolved,

7) and pain on the left side of his back, which I have come to learn, is referred to as flank pain.

 

I was hoping that some pandas researching doctor could meet with us and talk to us about my son's behaviours: who now presents with shoulder shrug tics, occasional mouth opening wide tics when lying down, turning his head tics which are minimal now, looking up at the sky tics when he is a passenger in the car and when he is lying down, and repeatedly touching and flicking his ear (is that a tic or a compulsion), and has decreased his fear of elevators, decreased his anxiety about me being around---although it is still somewhat there, and decreased his dislike of clothing tags (although they still bother him, just not as often and intensely as before). The doctor didn't focus on pandas stuff, and she said that she did not see tics, she instead focusses on the immediate concerns:

 

1)left testicle was enlarged and painful, and subsided

2) ongoing chest pains

3) possible previous strep illness and possible current illness b/c his lymph nodes are big and he has pain in the front of his throat

 

They did a chest x-ray - which was normal. She said that it doesn't show pneumonia, likely because he took azithromycin that I had requsted for possible pandas. She said the azith is great for pneumonia. She said that he cannot have walking pneumonia because walking pneumonia usually resolves itself within 6 months on its own.

 

They did a urine test, and there is blood in his urine. He has been referred to a urologist at the hospital. I called the urology dept, and they said that they will determine the severity, and will call with an appointment.

 

They took a strep swab, and they will call with results.

 

They did and EKG, and it was normal.

 

They gave me a referral to a new pediatrician, who just contacted me to see my son on Monday.

 

Questions: Isn't blood in the urine one of those things that can happen with strep? Is it a side effect of azithromycin?

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Sorry you did not get much help. I know the feeling where you may just have well talked to a blank wall. It makes me wonder if all the non-believing doctors would sing a different tune if there once healthy child changed overnight.

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They gave me a referral to a new pediatrician, who just contacted me to see my son on Monday.

 

 

Hi Sweet Cheeks Mom,

 

As a fellow Canadian also trying to find help for my son....just wondering if this new pediatrician was PANDAS "friendly". Did you have any success at your appointment yesterday?? How is your son doing?

 

Thanks

PKM

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