another question about my non pandas dd

[mom md]

My son did this last week in school. He would suddenly fall down when walking to a class or even "slip" out of his chiar in school. I e-mailed Latimer and she said it was the rag-doll effect Worried Dad mentioned. Very strange. The teacher is really good and knows our situation and said something to me before she made a big deal out of it. She did say though that if she did not know he had PANDAS she might have thought it was behavioral. I think he got a good laugh from his friends every time it happened.

I did ask my son and he said it just happened and he could not control it. The next week he said he occasionally could feel it coming on and would grab the bottom of his desk to keep it from happening.

[Suzan]

The next week he said he occasionally could feel it coming on and would grab the bottom of his desk to keep it from happening.

 

Interesting, kind of like an aura found with some seizures but he could stop it from happening at times....

 

Susan

[mom md]

Yes. Makes you wish they were a little bit older and could tell you those kind of details so you could understand better.

The next week he said he occasionally could feel it coming on and would grab the bottom of his desk to keep it from happening.

 

Interesting, kind of like an aura found with some seizures but he could stop it from happening at times....

 

Susan

[EAMom]

Is your non-pandas dd able to describe/explain the pain when she isn't in the midst of the meltdown (afterwards when she is calm)? Maybe that would give you some additional insights.

[ajcire]

I have asked her but she isn't really explaining it. Yesterday we were outside playing in the snow and for the first time when not in a meltdown she grabbed her leg and started crying hysterical... she looked like when you get one of those bad leg cramps... but when I asked her if that was the same way her legs hurt her the other day she kinda looked at me funny and said she didn't think so. So not sure if the episode yesterday was the same or not or if that really was just a muscle pull yesterday. All of a sudden she was just fine again and never mentioned it again.

 

 

 

 

 

 

Is your non-pandas dd able to describe/explain the pain when she isn't in the midst of the meltdown (afterwards when she is calm)? Maybe that would give you some additional insights.

[Suzan]

I have asked her but she isn't really explaining it. Yesterday we were outside playing in the snow and for the first time when not in a meltdown she grabbed her leg and started crying hysterical... she looked like when you get one of those bad leg cramps... but when I asked her if that was the same way her legs hurt her the other day she kinda looked at me funny and said she didn't think so. So not sure if the episode yesterday was the same or not or if that really was just a muscle pull yesterday. All of a sudden she was just fine again and never mentioned it again.

 

Will you remind me, has she been tested for strep? It really sounds like my dd's pain. I swear I did not believe her for years that it hurt it was just too crazy. Shoot I can't wait for you to go see Dr. T! Would your local doc do a trial of antibiotics for her even if the strep test came back negative? If not, maybe Dr. T would. From what you have been saying, it seems to me like a trial would benefit you guys.

 

Susan

[thereishope]

I'm going to out there and just ask if she is hydrated and drinking enough. Could she be having leg cramps from not drinking enough water?

[ajcire]

Susan, she was last tested for strep about 2 weeks ago.. the ped that I see from my ped office is great as far as doing any strep tests/cultrues I want and he believes in pandas but referred me to another dr. saying it was just out of his realm. That dr. I saw for my son but he stopped taking insurance so I haven't gone back. I didn't feel like he was going to help me as much as a visit with Dr. T so I decided that if it will cost me that I would rather see Dr. T. I don't think my ped will be willing to do a trial of antibiotics but he is the one who just did bloodwork for me on my dd to try to figure this out.. he was the one who was also happy to do the blooddraw for my son for the cunningham test.

 

My dd is still saying her mouth/throat hurts sometimes but I really don't know what to do. I have had her cultured sooooo many times over the last few months and the last several have been negative. She did have strep early september and the end of october. I hate that I don't know anymore what really hurts her and what has become a habit to say. It used to be that every time she said her throat hurt she had strep. This is also my child who always has tummyaches. My pandas son never gets sore throats when he has strep.

 

The real problem is that I really was seeing Dr. T for my son. It took a lot for me to convince my dh of the need for this despite him not being on our insurance. My dh thinks my dd's issues are just normal kid behaviors and he has not witnessed the severe leg pain episodes. It sounds awful but I think I need her to develop some tics and obvious ocd before he would be convinced. It took me a long time to get him to sorta see it in my ds and the cunningham test was kinda the clincher for me with him. I can't get him to go for the $400.00 test on my dd that he thinks is just fine.

 

 

 

 

I have asked her but she isn't really explaining it. Yesterday we were outside playing in the snow and for the first time when not in a meltdown she grabbed her leg and started crying hysterical... she looked like when you get one of those bad leg cramps... but when I asked her if that was the same way her legs hurt her the other day she kinda looked at me funny and said she didn't think so. So not sure if the episode yesterday was the same or not or if that really was just a muscle pull yesterday. All of a sudden she was just fine again and never mentioned it again.

 

Will you remind me, has she been tested for strep? It really sounds like my dd's pain. I swear I did not believe her for years that it hurt it was just too crazy. Shoot I can't wait for you to go see Dr. T! Would your local doc do a trial of antibiotics for her even if the strep test came back negative? If not, maybe Dr. T would. From what you have been saying, it seems to me like a trial would benefit you guys.

 

Susan

[ajcire]

I'm going to out there and just ask if she is hydrated and drinking enough. Could she be having leg cramps from not drinking enough water?

 

 

You know what Vickie, she is not a big drinker. I am going to pay attention to this and try to make sure to have her drink more during the day.... although yesterdays seemed like a possible leg cramp.. during her meltdowns it was stranger... like she just kept saying she couldn't walk and it hurt if anything touched her feet and legs.

[thereishope]

I'm not denying there's a connection to PANDAS, spasms or pain in the limbs. Just trying to think of something to try. It's hard to sit there and try nothing.

[ajcire]

I'm not denying there's a connection to PANDAS, spasms or pain in the limbs. Just trying to think of something to try. It's hard to sit there and try nothing.

 

 

Oh, I know Vickie, I think it is a good suggestion and certainly something easy enough for me to try and can only help.. can't really hurt to try to keep her better hydrated. LOL, I will remember not to freak if she starts using the bathroom more though