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Sethsmom

Severe vocal tic

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Hello, I am new to this site. My 10 year old son starting sneezing in April out of the blue one afternoon after I picked him up from school. This journey has had us on Risperdal, haldol and when the side effects outweighed any minimal improvement transitioned to intuniv and clonidine extended release, the new doctor went back to the basics. As he has not been able to speak in 12 days the tic is so severe the doctor started him on Keflex as a long shot to see if there is a PANDAS component. He wants us to then try abilify. We also supplement with magnesium, gaba, vitamin D and recently started cbd oil. We are so concerned for him currently, as the tic is exhausting him and emotionally he is very isolated and down. He also tics in his sleep and wakes every night around 1am and is up until about 4am, if he is able to get to sleep at all. This is after giving him trazadone, benadryl and melatonin. If anyone has any feedback or has dealt with something like this we would greatly appreciate it.

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Hi Seth's mom, Welcome to the forums. I'm so sorry to read that you have been dealing with sneezing in your son for 6 months and have had to try a number of medications, some quite strong, without success. How exhausting and worriesome. :(

 

First, could you please let us know if there has been any change since starting him on the antibiotic Keflex.

 

Another parent had a child with nonstop sneezing and a bacterial infection was involved. It received media attention for PANDAS. I haven't been in touch with the mom lately and am not sure what the status is. See TV segment.

 

I'm sure you will receive some feedback on this. In the meantime, would you like to tell us anything else about your boy?

 

Have they tested for PANDAS/PANS or just trying the antibiotic?

 

Have there been any other health issues -- or any other symptoms besides the sneezing? Do you see any pattern of it being a little better or worse at different times?

 

Where do you live? I'm asking this in the event that someone has a resource to recommend.

 

Hang in there, surely there is some help for your son and relief for your family.

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Hi Sheila,

Thank you so much for responding. Seth started sneezing after a croupy cough that he had had previously in February and was treated with prednisone, antibiotics and an inhaler. In April it reappeared and he was treated with just prednisone and given a nebulizer treatment. About a week later the sneezing started at school. He had this croupy cough the previous 2 years as well which doctors now think may have been a vocal tic but it always got better with medicine. Prior to the sneezing I really can't recall any other tics. We are in Massachusetts and currently see Dr. Williams a child psychiatrist who specializes in Pandas/Pans. We are also on the wait list to see Dr. Sharf a neurologist at MGH. We had been at Childrens but there approach was to continue to push the anti psychotic dose up and add kolonopin when Seth went into crisis at the onset of school. We just had blood work done and he tested positive for mycoplasma pneumoniae and high IGG. He started on azithromycin last night. It has been over 2 weeks since he has been able to speak and hes really exhausted and down. We see Williams next Thursday. If you have any suggestions as to what to ask at this point we would really appreciate it. I also made an appointment with Dr. Trifiletti in New Jersey. And called the Yale tic program. I hate to confuse things but I am feeling desperate for Seth. His tic has morphed somewhat through this constant, rapid phase we have been in and is more like exhaling with a rasberry noise. He still cant suppress long enough to talk. Any advice or additional resources are welcome! Thanks again

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Hi there

 

I really feel for you . We have been through several flare ups like this with our 8yr old in the past year .He has been getting very bad flare ups for all reasons and they all result in very very bad vocal tics where he was shouting non-stop all day and jumping off his seat all day !

So our son's case is slightly different ...we have seen all the top Dr.'s in NY,NJ including Dr.T,Dr.B and now Dr.N in CT.They all feel its PANS although none of his bloodwork show evelated levels of any infection . He is still on omnicef antibiotic for past 3 months now as a preventative.

 

One thing that seem to work for us when he does have a flare up is Magnesium Taurate upto 500mg. Right now after last weeks flare up we re-started Mag Taurate and currently he is around 375mg/day and after 5 days now his vocal and motor tic is down to 40%.

One more thing that seem to calm him down when he has severe flare ups is an IV of glutathione and NAC that we get at Dr.N .

We are using couple of other supplements prescribed by Dr.N and we are taking it slowly one by one for now.He had to miss school for more than 2 weeks when he had the severe flare up...so hang in there.

We have not resorted to any traditional medicines for tics so far and have been advised against it by all doctors and kept it as a last resort.

 

If your son has any current infections going on and his tics are up then his tics will come down when he is treated by the right antibiotic.You could also consider IVIG if it is PANDAS/PANS related if recommended by his docs.

 

Please keep us posted and let me know if you have any questions.There have been many days when I have felt totally dejected and helpless and right now I can only say that we take it day by day and he is back in school past 4 days now !

 

Best

Vik

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Thank you so much for your input and support! We are now at 3 weeks and 2 days with no talking. He tics in his sleep, when he can sleep. The doctor is going to give him a different antibiotic and try a steroid burst. We have abilify on standby but really don't want to use it. Seth is weepy and sad, he has not been able to go to school this entire time. We do give him magnesium but I'm unfamiliar with the taurate? Can you get that online? Also, the other supplement you mentioned could you give me more info on that? Thanks again for taking the time to reply and the information!

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Hi Sethsmom,

 

You are consulting with specialists who are hopefully moving things in the right direction.

 

Has there been any improvement yet from any of the interventions?

 

I'm sending you a PM. Sheila

 

 

 

 

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Vik or Sheila,

Who is Dr. N in CT? Dr. Nancy O' Hara? If not, would you mind sharing this doctor's info with me? My daughter is back with a vocal tic that is keeping her away from school again. Sadly, we didn't see much progress with Dr. B, and I am looking for experienced doctors in the area. It is so tiring, and frustrating when almost every single doctor's visit leads to a dead-end!

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Vik or Sheila,

Who is Dr. N in CT? Dr. Nancy O' Hara? If not, would you mind sharing this doctor's info with me? My daughter is back with a vocal tic that is keeping her away from school again. Sadly, we didn't see much progress with Dr. B, and I am looking for experienced doctors in the area. It is so tiring, and frustrating when almost every single doctor's visit leads to a dead-end!

 

I don't know about a Dr N in CT but we see Dr M in central CT for my Pandas/Lyme kids. We have experience with Dr B (and other Pandas doctors) but it's been Dr M who's been able to look at multiple triggers and get my kids well. In my family, I've seen strep, Lyme and mold all cause tics. Treating these issues has gotten rid of them.

 

If you'd like Dr M's contact info, PM me. He does have a long waiting list but gives priority to kids, so if you can take any available opening, you may be able to get in in a matter of a month or two.

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Azithromycin always made my kids worse even if it was the correct antibiotic for the infection. Ask for a different family of antibiotics that also kill strep and try that. I can't tell you how many times we could not tolerate the correct antibiotic, but when you find the one that they do tolerate, the get better quickly!

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fcefxer

 

Hello Nancy,

I am writing to you from Australia. You mentioned in a post from many years ago that you were trying to procure the dried leaves of the plant clerodendrum inerme. My daughter is in New South Wales right now trying to find this rather elusive plant for her son. Can you help us in any way to try to find/ source/ buy this plant or the dried leaves please? Did you ever import it .... or try it? I probably don't have to tell you how much we would love to hear any more information you may be able or willing to share. Kindest regards, Joy

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