Jump to content
ACN Latitudes Forums

Hi, I'm new, Charlotte NC area


Lisa1971
 Share

Recommended Posts

I'm not really sure what to make of this right now...but I got what I needed so I guess I can't complain..

 

My pediatrician had his nurse call me back...and tell me that he feels he is not "versed" enough in PANDAS to know what is going on, from what he knows of it he doesn't think it would have dissipated this soon...and since my son is getting better...if I still felt this was an "avenue I wanted to pursue"...they would start the paperwork for him to see a Pediatric Neurologist...apparently I cannot simply make the call and get the appointment myself, they would have to do this for me. She tried to get me off the phone to give me time to think about it...but I gave her the name of the pediatric neurologist in my plan and told her to get on it. I personally, don't need another episode to know something is not right.

 

"avenue I want to pursue" I can't help but feel that is code for "although, we think you are overreacting, I am ethically obligated to refer this case to someone who deals with tics, and will make the call if I have to"

 

I guess this is just par for the course...I'll just have to grow some thicker skin.

 

As of this morning his tics were almost completely completey gone...I did notice however...the past two days that the behavior seems to get a little worse at night...

 

It could be up to 6 weeks before the neurologist will see him...so...now, we wait.

 

My husband and I are getting tested for strep today...as a precaution...and I am still waiting on the psychologist to call back...if she doesn't call back by tonight (she was supposed to call last night) I'll call the other one that was in my plan...

Link to comment
Share on other sites

Lisa,

 

You know your own child. I have been dealing with a similar issue of others trying to tell me I am over-reacting and it's not really a medical issue. You know when something is out of place. Don't let anyone talk you out of it if you know in your heart that something is just not right. I know it is a very hard time right now and a hard fight to fight, but keep plugging away at this... you'll get there. We all will.

 

 

 

I'm not really sure what to make of this right now...but I got what I needed so I guess I can't complain..

 

My pediatrician had his nurse call me back...and tell me that he feels he is not "versed" enough in PANDAS to know what is going on, from what he knows of it he doesn't think it would have dissipated this soon...and since my son is getting better...if I still felt this was an "avenue I wanted to pursue"...they would start the paperwork for him to see a Pediatric Neurologist...apparently I cannot simply make the call and get the appointment myself, they would have to do this for me. She tried to get me off the phone to give me time to think about it...but I gave her the name of the pediatric neurologist in my plan and told her to get on it. I personally, don't need another episode to know something is not right.

 

"avenue I want to pursue" I can't help but feel that is code for "although, we think you are overreacting, I am ethically obligated to refer this case to someone who deals with tics, and will make the call if I have to"

 

I guess this is just par for the course...I'll just have to grow some thicker skin.

 

As of this morning his tics were almost completely completey gone...I did notice however...the past two days that the behavior seems to get a little worse at night...

 

It could be up to 6 weeks before the neurologist will see him...so...now, we wait.

 

My husband and I are getting tested for strep today...as a precaution...and I am still waiting on the psychologist to call back...if she doesn't call back by tonight (she was supposed to call last night) I'll call the other one that was in my plan...

Link to comment
Share on other sites

Lisa,

I am glad your son is doing better on the Amoxicillin. Your doctor is incorrect when he said it would not have dissipated so soon. PANDAS kids oftern get markedly better within a few days of antibiotics- sometimes after two doses. I am not discouraging you from seeing a neurologist, but they often don't "beleive" in PANDAS and want to medicate the tics. A child with PANDAS does not need to exhibit OCD. There is a huge range of symptoms as you know (ADD, ADHD, OCD, tics,anxiety, etc..) Some PANDAS kids have only tics.

You mentioned that he tested positive for strep at age 4, but you did not see symptoms. Were there any ohter changes you noted when he had strep at 4? Changes in urinary patterns, changes in sleep patterns, any type of anxiety, including not wanting to be away from you, rashes? Can you describe what the excema looks like and where it is located on his body? My children get rashes that look similar to excema, but after years of studying their skin and when they get the rashes, it is definitely linked to their strep. In fact my youngest had what one NP told me was excema, but when I showed it to another nurse practioner, she said it was definitely a scarlatinaform (scarlet fever) rash. He tested positive for Group B strep (NOT A which still has me very confused) and the rash completely disappeared with 2 days of Zithromax. Just weondering if your son's excema could be strep related. One of my sons gets a "lump" in the side of his neck when he has strep.

What is your plan for when he finished the 10 days of Amox?

Good luck!

Colleen

Link to comment
Share on other sites

Colleen...

 

Because it was so long ago I don't remember the specifics about the strep symptoms...I do remember though, that he did not have a sore throat...most likely what happened is, he had a fever and glassy eyes and was very blah (this is how I usually tell he is actually sick as opposed to having an allergy attack)...I remember being surprised it was strep...there weren't any behavioral changes...his eczema could also have been present...it usually is...his eczema is sort of always there...tiny flesh colored bumps that feel like dry rough patches, near his ankles and wrists...they never get red and scaly...but if he scratches them a lot they will bleed leaving tiny brown scabs...he has had this since he was an infant and it has never progressed...because of it he only showers twice a week, and when he was younger once a week, unless he was really filthy after a baseball game or riding his ATV ect...we have a swimming pool so I try an keep him moisturized during the summer as much as possible...I think the really thick sunblock I use also helps with this...as he does not have any more breakouts during the summer than any other time...it always seems to bother him around an allergy flare up or other sickness...cold, flu...now strep...

 

Eczema is a weakness for him so it makes sense if it is strep related, flaring up when his body is compromised...but whether it is a symptom for strep...that's a tough one, but I can pretend it is and use it as such. I'm going to say I believe the gland was a symptom and had I had him tested when that popped out I may have been able to avoid all of this, but who knows...

 

I'm not getting my hopes up that the neurologist will be any more cooperative than the pediatrician was...but...if I get my foot in the door and my son is a patient...and this happens again...I can then just make the call and have him seen---mid-episode...as opposed to now when the tics are basically gone...but logicaly I'm hoping that if the neurologist sees him without tics...then if this happens again...sees the drastic onset...she will be interested enough to explore it...make a call to the pediatrician and psychologist and all work together in harmony...if not...I guess I will be the one treating from all the different angles.

 

If the neurologist is on board then I will see if there is another pediatrician she recommends, if not, then I will be the annoying mother who brings he kid for a strep test at the first sign of illness...and will ask his teacher to let me know the minute she finds out another child in the class has strep...

 

As for now, I'm going to just finish up the Amox, continue the Zyrtec long term, continue the Omega 3, continue the skin lotions, and look into a more natural/herbal anti-inflammatory as I'm not comfortable giving him motrin long term. as well as a possible herbal alternative to the prophalactic anti-biotic use...since it doesn't look like my pediatrician is going to extend my Rx...(obvioulsy this will not take the place of antibiotics when needed, but maybe it can help keep the immune system in balance) I'm going to throw what I can at it...and get loud when I need to...and monitor him closely, using what I have to go on...first sign of something gland or eczema related and we are in for a strep test...

Link to comment
Share on other sites

Lisa,

I suppose it wouldn't hurt anything (you never know!) to culture the eczema (in addition to your son's throat), the next time it flares up, to make sure there isn't strep on his skin. When our dd was in the hospital last March we cultured both her throat and her perianal area (b/c I noticed some blood in that "hat"thing they make patients pee into). Both areas grew GABHS.

 

This, by the way was very funny!

"avenue I want to pursue" I can't help but feel that is code for "although, we think you are overreacting, I am ethically obligated to refer this case to someone who deals with tics, and will make the call if I have to"

 

Nobody should have to feel bad for wanting healthy happy (normal) children. Continue to advocate for your child so he can get better. What makes me so sad is that the treatment for this disease (esp. if caught early) is pretty simple/straightforward, antibiotics +/- IVIG...but parents have to beg and plead and mess around with docs that are so unhelpful, think PANDAS doesn't "exist" or are too pig-headed to even look at the evidence we present to them.

 

I know lots of kids get really other horrible diseases but at least those parents don't have to go through a multitude of docs/specialists saying things like "diabetes doesn't exist" or "I don't believe in cancer" when the treatment (possible cure) already exists.

 

PS. I was thinking it might be helpful to videotape some of your son's behaviors/tics to show the neurologist.

Link to comment
Share on other sites

Hi Lisa

Glad to read your son is improving. I agree with EAMom on the video taping idea. When my son started with tics out of nowhere 5 days after his first strep infection (that's been diagnosed anyway) in March of 08'. I made a 30 second video of him at the table coloring. He jerked his head back so forcefully and so many times it made me feel sick. It proved though to be a very useful tool. When we went to see his pediatrician, I think he felt I was over-reacting also. My son had only 2-3 minor tics during our visit with him that day. He said "I haven't seen him do anything abnormal". So, I showed him the video, and I saw an instant change in his demeanor. Same thing happened 6 wks later at our pediatric neurologist apt. until we showed him the video. I would also recommend you find a good DAN doctor. My sons has been incredible. I pray you and your son get the help you need. Glenda

 

 

 

 

 

 

 

 

 

 

Colleen...

 

Because it was so long ago I don't remember the specifics about the strep symptoms...I do remember though, that he did not have a sore throat...most likely what happened is, he had a fever and glassy eyes and was very blah (this is how I usually tell he is actually sick as opposed to having an allergy attack)...I remember being surprised it was strep...there weren't any behavioral changes...his eczema could also have been present...it usually is...his eczema is sort of always there...tiny flesh colored bumps that feel like dry rough patches, near his ankles and wrists...they never get red and scaly...but if he scratches them a lot they will bleed leaving tiny brown scabs...he has had this since he was an infant and it has never progressed...because of it he only showers twice a week, and when he was younger once a week, unless he was really filthy after a baseball game or riding his ATV ect...we have a swimming pool so I try an keep him moisturized during the summer as much as possible...I think the really thick sunblock I use also helps with this...as he does not have any more breakouts during the summer than any other time...it always seems to bother him around an allergy flare up or other sickness...cold, flu...now strep...

 

Eczema is a weakness for him so it makes sense if it is strep related, flaring up when his body is compromised...but whether it is a symptom for strep...that's a tough one, but I can pretend it is and use it as such. I'm going to say I believe the gland was a symptom and had I had him tested when that popped out I may have been able to avoid all of this, but who knows...

 

I'm not getting my hopes up that the neurologist will be any more cooperative than the pediatrician was...but...if I get my foot in the door and my son is a patient...and this happens again...I can then just make the call and have him seen---mid-episode...as opposed to now when the tics are basically gone...but logicaly I'm hoping that if the neurologist sees him without tics...then if this happens again...sees the drastic onset...she will be interested enough to explore it...make a call to the pediatrician and psychologist and all work together in harmony...if not...I guess I will be the one treating from all the different angles.

 

If the neurologist is on board then I will see if there is another pediatrician she recommends, if not, then I will be the annoying mother who brings he kid for a strep test at the first sign of illness...and will ask his teacher to let me know the minute she finds out another child in the class has strep...

 

As for now, I'm going to just finish up the Amox, continue the Zyrtec long term, continue the Omega 3, continue the skin lotions, and look into a more natural/herbal anti-inflammatory as I'm not comfortable giving him motrin long term. as well as a possible herbal alternative to the prophalactic anti-biotic use...since it doesn't look like my pediatrician is going to extend my Rx...(obvioulsy this will not take the place of antibiotics when needed, but maybe it can help keep the immune system in balance) I'm going to throw what I can at it...and get loud when I need to...and monitor him closely, using what I have to go on...first sign of something gland or eczema related and we are in for a strep test...

Link to comment
Share on other sites

Still making progress...tics almost non existent in morning and more prevelent in afternoon and peak in evening...hand tics only now...

 

I met with the psychologist this morning who is very interested in Alex...I videotaped him yesterday afternoon just talking but displaying obvious hand tics throughout the conversation I put them on a disc with videos of him in September and Christmas showing no hand tics at all, one was him just hanging out and singing a song keeping his hands still and one was of him playing uno with my husband...using his hands normally...and another was of him just talking and keeping his hands normal...I was glad i found these little video blurbs because it reaffirmed to me that he really had no tics prior to all of this...and she was glad to get them to look at as well.

 

the pyschologist also has history with my pediatrician and said she knows him to be a oppinionated and not a good listener...she uses the same practice but a different doctor now, whom she said may be better for us going forward...so that is good to know...

 

She is very open to communicating with the pediatrican and neurologist going forward, so at least I have one cog in the wheel in place...and she also recommened another neurologist if the one I get doesn't work out...she is going to call me on Monday to set up Alex's first appointment with her. She said if nothing else, at least she can give him the tools to control the tics...she said from what I am describing she feels they are OCD related, not ADD or Tourettes...but obviously will know more when she meets him.

 

And the best news is she also handles grown-ups too...so after I get this under control...I can schedule an appointment for myself to decompress. But she made very clear that I was asking all the right questions, I wasn't crazy...and the pediatrician handled the situation badly. So, I feel a lot better now.

 

I also spoke with his teacher today and let her in on the situation...she said she hadn't even noticed the tics, so that's good... she said she would keep an extra eye out for me, and also let me know immediately if anyone else gets strep for the remainder of the school year.

Link to comment
Share on other sites

Still making progress...tics almost non existent in morning and more prevelent in afternoon and peak in evening...hand tics only now...

 

I met with the psychologist this morning who is very interested in Alex...I videotaped him yesterday afternoon just talking but displaying obvious hand tics throughout the conversation I put them on a disc with videos of him in September and Christmas showing no hand tics at all, one was him just hanging out and singing a song keeping his hands still and one was of him playing uno with my husband...using his hands normally...and another was of him just talking and keeping his hands normal...I was glad i found these little video blurbs because it reaffirmed to me that he really had no tics prior to all of this...and she was glad to get them to look at as well.

 

the pyschologist also has history with my pediatrician and said she knows him to be a oppinionated and not a good listener...she uses the same practice but a different doctor now, whom she said may be better for us going forward...so that is good to know...

 

She is very open to communicating with the pediatrican and neurologist going forward, so at least I have one cog in the wheel in place...and she also recommened another neurologist if the one I get doesn't work out...she is going to call me on Monday to set up Alex's first appointment with her. She said if nothing else, at least she can give him the tools to control the tics...she said from what I am describing she feels they are OCD related, not ADD or Tourettes...but obviously will know more when she meets him.

 

And the best news is she also handles grown-ups too...so after I get this under control...I can schedule an appointment for myself to decompress. But she made very clear that I was asking all the right questions, I wasn't crazy...and the pediatrician handled the situation badly. So, I feel a lot better now.

 

I also spoke with his teacher today and let her in on the situation...she said she hadn't even noticed the tics, so that's good... she said she would keep an extra eye out for me, and also let me know immediately if anyone else gets strep for the remainder of the school year.

 

Hi lisa,

It sounds like you are beginning to get somewhere. So good that you found the videos from before tics too. I had often wondered whether my child had tics or what that was that she was doing with her hands (besides her tremors that she had) and it ended up, I believe more of an OCD thing rather than tics. We did have a child psychiatrist to express the same opinion (that it was ocd related not a tic). I mean, I didn't even really know what a tic was at the time for sure. Hope things continue to improve!

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share

×
×
  • Create New...