Peyton doing super odd mouth..things..

realisticdreams · September 2011

I'm going to try really hard to explain this, about 2 weeks ago..Peyton started doing some really odd things, with her mouth/facial expressions.

It's hard to explain but it almost looks like a stroke/bells palsy. Except...it goes back to normal. It's hard to tell if she's doing it on purpose or not, it seems more like she isn't, especially the more she is doing it.

The speech therapist saw it on Friday..and was kind of like "what is that.." and I was kind of like..."oh..that.."

I don't even know how to explain it to the pedi!

I'm not sure if it's some type of 'tic' or something to that effect, or something serious.

Has anyone ever seen anything like this before? I'm really not doing a good job at explaining it, and it's fairly quick 5-10 seconds that i'm not sure how to get a picture/video.

She basically is moving her mouth sideways and it's very awkward.

ETA: She is doing things with her tongue as well, where it's like she can't hold it in her mouth, for the same time frames, etc.

Mbitner · September 2011

realisticdreams:
I'm going to try really hard to explain this, about 2 weeks ago..Peyton started doing some really odd things, with her mouth/facial expressions.
It's hard to explain but it almost looks like a stroke/bells palsy. Except...it goes back to normal. It's hard to tell if she's doing it on purpose or not, it seems more like she isn't, especially the more she is doing it.
The speech therapist saw it on Friday..and was kind of like "what is that.." and I was kind of like..."oh..that.."
I don't even know how to explain it to the pedi!
I'm not sure if it's some type of 'tic' or something to that effect, or something serious.
Has anyone ever seen anything like this before? I'm really not doing a good job at explaining it, and it's fairly quick 5-10 seconds that i'm not sure how to get a picture/video.
She basically is moving her mouth sideways and it's very awkward.

ETA: She is doing things with her tongue as well, where it's like she can't hold it in her mouth, for the same time frames, etc.

Could it be facial grimacing? Aiden used to have a lot of facial grimacing with his movement spells/seizure like activity. He has them occasionally now...but not nearly as often as he used to. GL!

realisticdreams · September 2011

Mbitner:
realisticdreams:
I'm going to try really hard to explain this, about 2 weeks ago..Peyton started doing some really odd things, with her mouth/facial expressions.
It's hard to explain but it almost looks like a stroke/bells palsy. Except...it goes back to normal. It's hard to tell if she's doing it on purpose or not, it seems more like she isn't, especially the more she is doing it.
The speech therapist saw it on Friday..and was kind of like "what is that.." and I was kind of like..."oh..that.."
I don't even know how to explain it to the pedi!
I'm not sure if it's some type of 'tic' or something to that effect, or something serious.
Has anyone ever seen anything like this before? I'm really not doing a good job at explaining it, and it's fairly quick 5-10 seconds that i'm not sure how to get a picture/video.
She basically is moving her mouth sideways and it's very awkward.

ETA: She is doing things with her tongue as well, where it's like she can't hold it in her mouth, for the same time frames, etc.
Could it be facial grimacing? Aiden used to have a lot of facial grimacing with his movement spells/seizure like activity. He has them occasionally now...but not nearly as often as he used to. GL!

I really don't know. She had a normal EEG at 6 months and has a standing order for a new one, we haven't done it yet though. We were planning to due to spasms upon wakening but when she was in the hospital a neuro saw her do it & said it was not a seizure & was related to her CP. I met the lady who does pedi EEG's at our local hospital & love her. (she was great with M) so I am going to get it done, it's just finding the time to do the sleep deprived, etc.

Anyways, I started to google things and the only thing i've found is something called PANDAS since it started after her last bout of MRSA/cellulitis I don't know if that could somehow be related.

mcarter127 · September 2011

My cousin has Tourette's Syndrome & he used to do something similar with his mouth. The only other thought was some type of seizure? I also wanted to ask about your daughter's MTHFR dx. I just discovered that my LO tested positive for this while I was going thru his medical records when we were transferring care. I was so pissed that nobody ever mentioned it to me. Did they tell you how it would impact her? I only have experience with MTHFR in pregnant women, so I'm not sure if this affects kids or not & I thought you might know. Thanks!

realisticdreams · September 2011

mcarter127:
My cousin has Tourette's Syndrome & he used to do something similar with his mouth. The only other thought was some type of seizure? I also wanted to ask about your daughter's MTHFR dx. I just discovered that my LO tested positive for this while I was going thru his medical records when we were transferring care. I was so pissed that nobody ever mentioned it to me. Did they tell you how it would impact her? I only have experience with MTHFR in pregnant women, so I'm not sure if this affects kids or not & I thought you might know. Thanks!

FML on the TS. I'm hoping if it is anything like that it's the PANDAS bc she had a recent infection.

We see hematology for management of MTHFR in a pedi patient. They say as long as her homocysteine level is normal then she doesn't need folic acid, etc. Our main concern is in reference to being immobile, her surgery required 3 days down flat, they said if it would have been 4 she would of had to go on lovenox, etc.

It kind of depends on the dr. as well as you probably know some are big into thinking MTHFR does nothing while others disagree. I feel like it obviously does something!

carlinlp · September 2011

Low magnesium levels can cause tics / spasms. My son had severe tics to where we thought he was having seizures and he was hospitalized. They were easily solved with increasing mag rich foods and supplementing. Magnesium is especially important if she gets a lot of calcium. The balance between the two is incredibly important because magnesium needs calcium to assimilate in the body. But if you get too much calcium and not enough magnesium, you will get tic like activity in some people. Here's a good explanation on mag deficiency: https://www.youtube.com/watch?v=3wtUn1gWgaw&feature=player_embedded

I would also encourage you to research folic acid and homocysteine levels. My son's homocysteine levels are very low, his doctor believes this is a biomarker for being more prone to vaccine injuries, poor methylation, etc. Our experience has been that folate is much, much more effective in the body than folic acid. I can send you some research if you ever want/need it. My email is lstradtner at mac dot com

If you think it is PANDAS, I would get on antibiotics right away (and probiotics to counter them). We had what we thought might have been a PANDAS scare quite awhile ago but it turned out not to be. There was a time we thought our dd was a strep carrier and I was terrified of what that would mean for DS. Thankfully she's not. Does anyone in your family carry strep? PANDAS isn't anything to mess around with. I've talked with quite a few parents about it and the thing with PANDAS is that if you dc is having a PANDAS outbreak, you will know it. How is her behavior? Outbursts?

Mbitner · September 2011

realisticdreams:
Mbitner:
realisticdreams:
I'm going to try really hard to explain this, about 2 weeks ago..Peyton started doing some really odd things, with her mouth/facial expressions.
It's hard to explain but it almost looks like a stroke/bells palsy. Except...it goes back to normal. It's hard to tell if she's doing it on purpose or not, it seems more like she isn't, especially the more she is doing it.
The speech therapist saw it on Friday..and was kind of like "what is that.." and I was kind of like..."oh..that.."
I don't even know how to explain it to the pedi!
I'm not sure if it's some type of 'tic' or something to that effect, or something serious.
Has anyone ever seen anything like this before? I'm really not doing a good job at explaining it, and it's fairly quick 5-10 seconds that i'm not sure how to get a picture/video.
She basically is moving her mouth sideways and it's very awkward.

ETA: She is doing things with her tongue as well, where it's like she can't hold it in her mouth, for the same time frames, etc.
Could it be facial grimacing? Aiden used to have a lot of facial grimacing with his movement spells/seizure like activity. He has them occasionally now...but not nearly as often as he used to. GL!
I really don't know. She had a normal EEG at 6 months and has a standing order for a new one, we haven't done it yet though. We were planning to due to spasms upon wakening but when she was in the hospital a neuro saw her do it & said it was not a seizure & was related to her CP. I met the lady who does pedi EEG's at our local hospital & love her. (she was great with M) so I am going to get it done, it's just finding the time to do the sleep deprived, etc.
Anyways, I started to google things and the only thing i've found is something called PANDAS since it started after her last bout of MRSA/cellulitis I don't know if that could somehow be related.

We never got an answer if the facial grimacing was part of a seizure or just part of a movement disorder. His movement spells have changed a lot since then. I hope you get answers soon!!

realisticdreams · September 2011

carlinlp:
Low magnesium levels can cause tics / spasms. My son had severe tics to where we thought he was having seizures and he was hospitalized. They were easily solved with increasing mag rich foods and supplementing. Magnesium is especially important if she gets a lot of calcium. The balance between the two is incredibly important because magnesium needs calcium to assimilate in the body. But if you get too much calcium and not enough magnesium, you will get tic like activity in some people. Here's a good explanation on mag deficiency: https://www.youtube.com/watch?v=3wtUn1gWgaw&feature=player_embedded
I would also encourage you to research folic acid and homocysteine levels. My son's homocysteine levels are very low, his doctor believes this is a biomarker for being more prone to vaccine injuries, poor methylation, etc. Our experience has been that folate is much, much more effective in the body than folic acid. I can send you some research if you ever want/need it. My email is lstradtner at mac dot com
If you think it is PANDAS, I would get on antibiotics right away (and probiotics to counter them). We had what we thought might have been a PANDAS scare quite awhile ago but it turned out not to be. There was a time we thought our dd was a strep carrier and I was terrified of what that would mean for DS. Thankfully she's not. Does anyone in your family carry strep? PANDAS isn't anything to mess around with. I've talked with quite a few parents about it and the thing with PANDAS is that if you dc is having a PANDAS outbreak, you will know it. How is her behavior? Outbursts?

Her hom cysteine levels were checked about 2 months ago by hematology & they were normal. She has been drinking a lot more milk lately than usual, so I guess it's possible that her calcium level is higher than normal. I asked them if she should have extra folic acid just as precautionary and they basically said no.

I don't know if any of us are a carrier for strep, but she did have MRSA about 3 weeks ago, so I wasn't sure if that was a similar type of strep or not. Her behavior has been a little bit unusual for her, but I can't really explain it. It's so hard to tell the difference between typical toddler behavior/stuff related to her CP/other abnormal stuff. She has been quite repetitive..but that's not completely abnormal for her. She's been calling everybody mommy..which is abnormal..and she has had severe separation anxiety from me & only me. (this is new-ish). She had been sleeping a lot better since her release surgery..but the last 3 nights have been awful. She woke up last night at 10pm & didn't go back to sleep until after 2am. She's been freaking out about her paci too. Talking about it in her sleep.

Ughhhh.

I'm going to try to get her into the pedi tomorrow afternoon, we have a great pedi...I just don't know how to go in there & tell him my concerns about the PANDAS..I did email our neuro last night, so hopefully the nurse will get back with me tomorrow, as well.

carlinlp · September 2011

Sorry this will be short, we are dealing with Texas wildfires and packing just in case we are evacuated. This screams mag deficiency to me. It can cause anxiety, it caused my son to have an intense need to suck on his paci. He was obsessed and needed it so much. It can interrupt sleep. I'd give her an Epsom salt bath (magnesium sulfate). Mag rich foods too. There is a product for kids called natural calm. Can't hurt. Your description sounds so much like my ds's.

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