19 more days until appt with Dr K

[Johnsmom]

Hello

 

Last week I was so pumped about the thought of my kid not actually having autism but having pandas instead. I dont know what it is about the autism label that bugs me. When he was diagnosed at age 5 (hes 8 now) after waiting 7 and 1/2 months to see the neurologist, I was devastated at the label PDD-NOS but thought it would at least give us some guidance. Boy was I wrong. Now I find myself with a kid who acts weird (tics, OCD behaviors, emotional) when the titers are flared.

I think I want a PANDAS diagnosis to get rid of the stigma of the autism label so I can truly say all along, HE IS JUST SICK, when autism means the same thing to me but not everyone else.

I viewed a post of mine last week where I am telling all of you that I dont think my kid has autism. I have pulled out all of my old journals, medical records and I am driving myself insane. My house is a disaster. I cant funtion at work.

After reading more about PANDAS/PITAND diagnosis, I am just not so sure its an exact fit. Its not black and white. We didnt have sudden onset.

 

Right now my kid is doing AWESOME! This week in particular. He is conversational, agreeable, his speech is good and he is motivated. He gets these bursts of motivation and then they all disappear. He has a cold this week and I often wonder if his body is busy fighting that off and the strep titers are not attacking his brain.

 

I have been reading all these posts. I cant imagine what some of you go through. Then again we have been through a lot too.

 

I have 6 elevated ASO titer tests in the past two years. My journals tell the story of the roller coaster ride. We go up and we go down. He has told me he wants to push me off of a cliff, he has told me he has bad thoughts, he has had body tics and facial tics, he has had jerky body movements, he has told me that he needed to be on something with much frustration in his voice. (meaning he needed to be on the video game or computer) He has weird voice fluctuations.

 

There is so much more. Like I said he is almost so normal no, to me anyway. The teachers dont understand when I ask them how he is doing. He functions well in the class but had a recent episode of emotional meltdowns. They have subsided.

 

Can anyone just tell me to relax. Really? Its just about my son getting healthy. Who cares about a Label? right?

 

signed, going nuts in Edgerton, WI

[peglem]

Sorry, you will not be able to relax until this is all sorted out.

Autism is just symptoms....that can be caused by PANDAS. So, it doesn't have to be one or the other. That's just my opinion, of course. If it isn't PANDAS or PITANDS, then keep looking for the underlying cause.

[Johnsmom]

Thank you and I guess thats what we have been doing all along. "looking for the underlying cause" We have been on the diet, the supplements and he has been chelated.

thank you again-

 

 

 

Sorry, you will not be able to relax until this is all sorted out.

Autism is just symptoms....that can be caused by PANDAS. So, it doesn't have to be one or the other. That's just my opinion, of course. If it isn't PANDAS or PITANDS, then keep looking for the underlying cause.

[7upMom]

My son did not have what I would consider to be a "sudden" onset of symptoms in regards to his behavior, the tics were sudden but it has been ongoing and gradually getting worse each onset. We didn't even relate this to 'sick' episodes either until looking back after pandas diagnosis( we would all be so confused, incl drs as to why he was fine for 6 mths to a year and then back to worse than before- they kept saying what happened that set this off? sounded like idiots saying- nothing)

We saw Dr K last month, best thing we have done for our son yet, and he was mentioning autism symptoms in our appt , although our son has never been diagnosed with autism, he told us this was common ( autism syptoms ) in pandas.

Also keep in mind, he told us, what someone else touched on in a post and that was we have all adapted to the symptoms and behavior , it is amazing what we can adapt to- things we would never have accepted as normal behaviors have become normal, and we would actually prob be surprised once things actually are back to normal what this actually is.

[Johnsmom]

Thanks 7upmom!

 

We really have gotten used to the behaviors. I would like to say we have gotten used to the roller coaster too, but we havent. At least now I know for sure when the titers are elevated again. He has had such a great week. Its frustrating though. I e-mailed the teachers this morning to ask about behaviors and they all said he is happy and that I have a wonderful child. Do they think I dont know that or I am just being nit-picky. I guess his emotional meltdowns, tics and staring at the lights dont bother them. Or they dont think it is unusual as they see a lot of different personalities.

Thanks again for your response. you are right. we really do adapt to the behaviors of our children.

 

 

 

My son did not have what I would consider to be a "sudden" onset of symptoms in regards to his behavior, the tics were sudden but it has been ongoing and gradually getting worse each onset. We didn't even relate this to 'sick' episodes either until looking back after pandas diagnosis( we would all be so confused, incl drs as to why he was fine for 6 mths to a year and then back to worse than before- they kept saying what happened that set this off? sounded like idiots saying- nothing)

We saw Dr K last month, best thing we have done for our son yet, and he was mentioning autism symptoms in our appt , although our son has never been diagnosed with autism, he told us this was common ( autism syptoms ) in pandas.

Also keep in mind, he told us, what someone else touched on in a post and that was we have all adapted to the symptoms and behavior , it is amazing what we can adapt to- things we would never have accepted as normal behaviors have become normal, and we would actually prob be surprised once things actually are back to normal what this actually is.

[7upMom]

Thanks 7upmom!

 

We really have gotten used to the behaviors. I would like to say we have gotten used to the roller coaster too, but we havent. At least now I know for sure when the titers are elevated again. He has had such a great week. Its frustrating though. I e-mailed the teachers this morning to ask about behaviors and they all said he is happy and that I have a wonderful child. Do they think I dont know that or I am just being nit-picky. I guess his emotional meltdowns, tics and staring at the lights dont bother them. Or they dont think it is unusual as they see a lot of different personalities.

Thanks again for your response. you are right. we really do adapt to the behaviors of our children.

 

 

 

My son did not have what I would consider to be a "sudden" onset of symptoms in regards to his behavior, the tics were sudden but it has been ongoing and gradually getting worse each onset. We didn't even relate this to 'sick' episodes either until looking back after pandas diagnosis( we would all be so confused, incl drs as to why he was fine for 6 mths to a year and then back to worse than before- they kept saying what happened that set this off? sounded like idiots saying- nothing)

We saw Dr K last month, best thing we have done for our son yet, and he was mentioning autism symptoms in our appt , although our son has never been diagnosed with autism, he told us this was common ( autism syptoms ) in pandas.

Also keep in mind, he told us, what someone else touched on in a post and that was we have all adapted to the symptoms and behavior , it is amazing what we can adapt to- things we would never have accepted as normal behaviors have become normal, and we would actually prob be surprised once things actually are back to normal what this actually is.

 

Exactly, I completely know what you are talking about with the school aspect, I knew I sounded like such freak when I was trying to explain why homework wasn't getting done, why he was late for school/ or just 'sick' from school because all they would say was how sweet and wonderful he was. they would just be truly shocked when I tried to explain what we see at home, I think they felt like it was a disciplinary or home issue. I just gave up and would call him in sick end of story- there was no way they were going to understand or even understand the severity of it. I completely stopped worrying what they "thought" about him not having homework done etc, more important things to worry about! He finally progressed to where they saw slight problems, slamming desk, throwing books- geesh that was nothing though- they would prob freak if they saw some of the videotapes we have of what we call a rage.

 

Our mistake though looking back- when he was better we would be so relieved that we didn't follow through or continue on with the persistancy we did while he was in the midst of it, that really came back to bite us in the behind, because now we don't have much for good days anymore. We were too hopeful it was gone, and he was better, when that wasn't the case. Even in the good weeks, stay pushing forward with the same tenacity!!!!

[Johnsmom]

Like I said, we have had such a good week and I am waiting to go down the next hill. Before when this happened I would get so excited only to have it all go away. Now I know when it happens, there is a definite reason and I probably will be able to deal with him more positively. Now my thoughts are: Gee, what if he doesnt go down from now until our appt with Dr K? Or, if he does do I tell our doctor that we need another round of antibiotics which she never seems to want to give to us. Our last appt we walked out with bio-cydin drops. Its full of a bunch of herbs and suppose the help the immune system. After that my husband piped up and said "I am sick of this, why wont she just give us the meds!" I like Dr Usman. I think she is a wonderful doctor, but I think she really needs to get on board with the PANDAS doctors.

7up mom thank you for your repsonses. you have made me feel so much better.

 

 

Thanks 7upmom!

 

We really have gotten used to the behaviors. I would like to say we have gotten used to the roller coaster too, but we havent. At least now I know for sure when the titers are elevated again. He has had such a great week. Its frustrating though. I e-mailed the teachers this morning to ask about behaviors and they all said he is happy and that I have a wonderful child. Do they think I dont know that or I am just being nit-picky. I guess his emotional meltdowns, tics and staring at the lights dont bother them. Or they dont think it is unusual as they see a lot of different personalities.

Thanks again for your response. you are right. we really do adapt to the behaviors of our children.

 

 

 

My son did not have what I would consider to be a "sudden" onset of symptoms in regards to his behavior, the tics were sudden but it has been ongoing and gradually getting worse each onset. We didn't even relate this to 'sick' episodes either until looking back after pandas diagnosis( we would all be so confused, incl drs as to why he was fine for 6 mths to a year and then back to worse than before- they kept saying what happened that set this off? sounded like idiots saying- nothing)

We saw Dr K last month, best thing we have done for our son yet, and he was mentioning autism symptoms in our appt , although our son has never been diagnosed with autism, he told us this was common ( autism syptoms ) in pandas.

Also keep in mind, he told us, what someone else touched on in a post and that was we have all adapted to the symptoms and behavior , it is amazing what we can adapt to- things we would never have accepted as normal behaviors have become normal, and we would actually prob be surprised once things actually are back to normal what this actually is.

 

Exactly, I completely know what you are talking about with the school aspect, I knew I sounded like such freak when I was trying to explain why homework wasn't getting done, why he was late for school/ or just 'sick' from school because all they would say was how sweet and wonderful he was. they would just be truly shocked when I tried to explain what we see at home, I think they felt like it was a disciplinary or home issue. I just gave up and would call him in sick end of story- there was no way they were going to understand or even understand the severity of it. I completely stopped worrying what they "thought" about him not having homework done etc, more important things to worry about! He finally progressed to where they saw slight problems, slamming desk, throwing books- geesh that was nothing though- they would prob freak if they saw some of the videotapes we have of what we call a rage.

 

Our mistake though looking back- when he was better we would be so relieved that we didn't follow through or continue on with the persistancy we did while he was in the midst of it, that really came back to bite us in the behind, because now we don't have much for good days anymore. We were too hopeful it was gone, and he was better, when that wasn't the case. Even in the good weeks, stay pushing forward with the same tenacity!!!!