Mood and defiance better but tics worse...

[Dedee]

My daughter usually doesn't have a lot of trouble with tics. In the past she has had some sniffing tics, or throat clearing. All minor in that I am the only one who really notices. They haven't caused a big problem till now. In the past it has been her OCD, rages and defiance that has been our biggest problems. However...in the past few months we started using the camel milk to help boost her immune system. They say it really helps heal the gut as well and in doing that helps the gut absorb all nutrients and medications better. She has had positive results from the camels milk. We have seen less raging and defiance but it did seem to bring out the tics more. My daughter is on lamictal 50mg twice a day. I have read that some kids can get tics from lamictal when it gets to a higher dose. So I am wondering if the increased absorption from the gut healing may be causing increased tics from more absorption of the drug. Am I making sense here? Her tic (huffing, & blowing) are so bad that she can't concentrate to do homework some nights. This is very abnormal for her.

 

She is also on a different antibiotic that started a few weeks ago but we have seen really good behavior changes with the antibiotic change. Overall, if it weren't for the tic I would say she was doing much better with only a day here and there where she regresses. We are being aggressive about treating for yeast, but I suppose that isn't completely out of the question. She gets niastatin three times a day and diflucan once a week in addition to the probiotics.

 

Does anyone have any experience with Lamictal causing or worsening tics? I am at a loss as to what to do to help with this. I increased her magnesium, but that doesn't seem to help yet. She says the kids at school are starting to notice and make fun. That breaks my heart. I suppose it may be time to give a call to the doctor. I just wanted to put in a call to my expert friends first.

 

Dedee

[Kathy4Him]

My son was taking the pearl probiotics and after 2 weeks or so we noticed tics...lots of them. I stopped the probiotics and after a week the tics stopped too.

[911RN]

My daughter usually doesn't have a lot of trouble with tics. In the past she has had some sniffing tics, or throat clearing. All minor in that I am the only one who really notices. They haven't caused a big problem till now. In the past it has been her OCD, rages and defiance that has been our biggest problems. However...in the past few months we started using the camel milk to help boost her immune system. They say it really helps heal the gut as well and in doing that helps the gut absorb all nutrients and medications better. She has had positive results from the camels milk. We have seen less raging and defiance but it did seem to bring out the tics more. My daughter is on lamictal 50mg twice a day. I have read that some kids can get tics from lamictal when it gets to a higher dose. So I am wondering if the increased absorption from the gut healing may be causing increased tics from more absorption of the drug. Am I making sense here? Her tic (huffing, & blowing) are so bad that she can't concentrate to do homework some nights. This is very abnormal for her.

 

She is also on a different antibiotic that started a few weeks ago but we have seen really good behavior changes with the antibiotic change. Overall, if it weren't for the tic I would say she was doing much better with only a day here and there where she regresses. We are being aggressive about treating for yeast, but I suppose that isn't completely out of the question. She gets niastatin three times a day and diflucan once a week in addition to the probiotics.

 

Does anyone have any experience with Lamictal causing or worsening tics? I am at a loss as to what to do to help with this. I increased her magnesium, but that doesn't seem to help yet. She says the kids at school are starting to notice and make fun. That breaks my heart. I suppose it may be time to give a call to the doctor. I just wanted to put in a call to my expert friends first.

 

Dedee

 

Yep, sure do. It is well researched...Lamotrigine induced tics. Go to google scholar and you should be able to pull up the abstract easily. My neuro and I have talked about it at length in the past.Usually occurs at higher dosages, however, my son's ticcing worsened on Lamictal. Unforuntately, for us, he has to take a antiseizure medication for abnormal EEG and after 3 different ones... Lamictal was the best for us. So, it has always been a risk benefit ratio. We try to keep it at lowest dose for most gain and minimal side effects with tics. I am currently weaning from 150 mg down to 125 mg.We weaned down from 200 mg to 150 mg last Spring. His risk of abnormal EEG diminishes with puberty so our goal is to wean completely by age 15. He is 12.5 now. If your DD does not NEED Lamictal for it's AED properties and if you can get a handle on OCD, rages and defiance with another med (SSRI's??) then I would recommend a change to different medication to free her of the tics. Or, wean Lamictal a little and see if tics diminish. There is usually a sweet spot.

[911RN]

My son was taking the pearl probiotics and after 2 weeks or so we noticed tics...lots of them. I stopped the probiotics and after a week the tics stopped too.

 

My son did not do well on probiotics either. Increased tics. We do without it. he does not have gut or yeast problems so fortunately we do not need it

[Fixit]

My son was taking the pearl probiotics and after 2 weeks or so we noticed tics...lots of them. I stopped the probiotics and after a week the tics stopped too.

 

My son did not do well on probiotics either. Increased tics. We do without it. he does not have gut or yeast problems so fortunately we do not need it

 

911 and Kathy,

are you giving abx currently?

and if so, are you giving anything for the gut, ie fermented foods?

Gosh, i would just be very cautious knowing now, what i do about the gut?

 

how much worse were the tics on the probiotcs?

Maybe you needed a different type?

 

we are in a pretty decent place right now, but also on abx?

 

But always thinking like most here, i wonder if something i am doing is holding us back from 100%

 

Does anyone out there think the probiotics were causing some herx, displacing yeast or other parasites?

not saying a herx was or wasn't a cause, just asking for thoughts.

[Kathy4Him]

My son was taking the pearl probiotics and after 2 weeks or so we noticed tics...lots of them. I stopped the probiotics and after a week the tics stopped too.

 

My son did not do well on probiotics either. Increased tics. We do without it. he does not have gut or yeast problems so fortunately we do not need it

 

911 and Kathy,

are you giving abx currently?

and if so, are you giving anything for the gut, ie fermented foods?

Gosh, i would just be very cautious knowing now, what i do about the gut?

 

how much worse were the tics on the probiotcs?

Maybe you needed a different type?

 

we are in a pretty decent place right now, but also on abx?

 

But always thinking like most here, i wonder if something i am doing is holding us back from 100%

 

Does anyone out there think the probiotics were causing some herx, displacing yeast or other parasites?

not saying a herx was or wasn't a cause, just asking for thoughts.

 

 

DS 23 has been taking 250mg zithromaz since Oct. 15. He is also on immunosuppressant - cellcept and prednisone. We have tried other probiotics, but he is not taking any right now and seems to be fine. tics were pretty bad and have stopped. but still holding on to ocd thoughts processes and avoidances. Making small strides. Began cellcept and prednisone nov. 12.

[Fixit]

My son was taking the pearl probiotics and after 2 weeks or so we noticed tics...lots of them. I stopped the probiotics and after a week the tics stopped too.

 

My son did not do well on probiotics either. Increased tics. We do without it. he does not have gut or yeast problems so fortunately we do not need it

 

911 and Kathy,

are you giving abx currently?

and if so, are you giving anything for the gut, ie fermented foods?

Gosh, i would just be very cautious knowing now, what i do about the gut?

 

how much worse were the tics on the probiotcs?

Maybe you needed a different type?

 

we are in a pretty decent place right now, but also on abx?

 

But always thinking like most here, i wonder if something i am doing is holding us back from 100%

 

Does anyone out there think the probiotics were causing some herx, displacing yeast or other parasites?

not saying a herx was or wasn't a cause, just asking for thoughts.

 

 

DS 23 has been taking 250mg zithromaz since Oct. 15. He is also on immunosuppressant - cellcept and prednisone. We have tried other probiotics, but he is not taking any right now and seems to be fine. tics were pretty bad and have stopped. but still holding on to ocd thoughts processes and avoidances. Making small strides. Began cellcept and prednisone nov. 12.

 

how did you realize the probiotics where the cause?

 

how long is your ds intended to be on the suppressants?

i am not familiar with cellcept. Pred can really cause some yeast, stomach issues.

 

 

on another note..... my ds12 about 105-110lbs takes 500mg zith.

maybe if you were able to get a higher dose you might see more gains.. there are no rules and it may be too much for your son but i think it is worth a try. I think most here are on higher doses of most abxs

I am glad you are progressing with your protocal as it is. That is certainly good to hear.

[3boysmom]

My daughter usually doesn't have a lot of trouble with tics. In the past she has had some sniffing tics, or throat clearing. All minor in that I am the only one who really notices. They haven't caused a big problem till now. In the past it has been her OCD, rages and defiance that has been our biggest problems. However...in the past few months we started using the camel milk to help boost her immune system. They say it really helps heal the gut as well and in doing that helps the gut absorb all nutrients and medications better. She has had positive results from the camels milk. We have seen less raging and defiance but it did seem to bring out the tics more. My daughter is on lamictal 50mg twice a day. I have read that some kids can get tics from lamictal when it gets to a higher dose. So I am wondering if the increased absorption from the gut healing may be causing increased tics from more absorption of the drug. Am I making sense here? Her tic (huffing, & blowing) are so bad that she can't concentrate to do homework some nights. This is very abnormal for her.

 

She is also on a different antibiotic that started a few weeks ago but we have seen really good behavior changes with the antibiotic change. Overall, if it weren't for the tic I would say she was doing much better with only a day here and there where she regresses. We are being aggressive about treating for yeast, but I suppose that isn't completely out of the question. She gets niastatin three times a day and diflucan once a week in addition to the probiotics.

 

Does anyone have any experience with Lamictal causing or worsening tics? I am at a loss as to what to do to help with this. I increased her magnesium, but that doesn't seem to help yet. She says the kids at school are starting to notice and make fun. That breaks my heart. I suppose it may be time to give a call to the doctor. I just wanted to put in a call to my expert friends first.

 

Dedee

[3boysmom]

Was busy typing my own tic concerns...I missed yours....strangly similar!!!!! any advice? Has anything changed?

[Dedee]

Thanks so much everyone for your response. I decreased the lamictal a little and the tics have slightly decresased but still much more than usual. I will wait a while and decrease it a little more. I just have a gut feeling that the lamictal is the culprit. I guess time will tell. It just gets so exhausting. Always something, never a time where I'm not trying to figure something out. Such is the life of a PANS Mother. Uggg.....

 

Dedee

Edited December 13, 2012 by Dedee

[nicklemama]

Thanks so much everyone for your response. I decreased the lamictal a little and the tics have slightly decresased but still much more than usual. I will wait a while and decrease it a little more. I just have a gut feeling that the lamictal is the culprit. I guess time will tell. It just gets so exhausting. Always something, never a time for where I'm not trying to figure something out. Such is the life of a PANS Mother. Uggg.....

 

Dedee

 

Deedee- I'm a big believer in going w/ your gut. I did want to tell you that in the approx 1.5yrs DS was on lamictal, I never saw a correlation between tics and lamictal. When he ticced, he had an infection. When it was treated, they slowly went away.

[911RN]

Thanks so much everyone for your response. I decreased the lamictal a little and the tics have slightly decresased but still much more than usual. I will wait a while and decrease it a little more. I just have a gut feeling that the lamictal is the culprit. I guess time will tell. It just gets so exhausting. Always something, never a time where I'm not trying to figure something out. Such is the life of a PANS Mother. Uggg.....

 

Dedee

 

It will take awhile for serum levels to go down to see appreciable differences with decreases in Lamictal. Half life is like 33 hours...pretty long by most drug standards.