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still ticcing


jules41
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Hi everyone

I have not been posting on this site for a long time as we have moved country and been extremely busy setting up home overseas. My son started ticcing very suddenly on the 31st March this year along with a cough, severe tummy pains and a rash on his body. I took him along to the doctor panicking as I was convinced that these symptoms were all related. I was told that they were not related, he had transient simple childhood tics brought on by stress, a cough with sore tummy probably linked to the cough and a fungal skin rash which I was given an antifungal cream for. 2 weeks later I was still not happy so took him along to a neurologist who also diagnosed him with transient childhood tics and said not to worry that they would disappear when we moved to Australia from Belgium and he settled into his new school. He felt that these were relatively common in childhood and should disappear relatively quickly. At the time he only had facial tics.

Everything did seem to be settling down and I felt that the tics were going away - really mild and infrequent although still happening every day so I stopped worrying quite so much. I moved out to Australia and about 2 weeks later they got much worse again and his walking posture changed. He was walking with a slightly twisted torso and hen toed. His tummy pains were worse and he was scared to sleep at night in case aliens came to get him. This is from a boy who was in gifted classes all through school, played excellent sports, has loads of friends, never had a tic prior to that and was, if anything, told that he was overly confident.

My son has changed so much.

When I came to Australia I managed to get an appointment with a paediatrician who tested him and found that he was positive for strep on the throat swab she did as she felt it sounded like PANDAS and also the blood tests showed elevated titres in all counts. He was put onto antibiotics - cephalexin - for 10 days and improved considerably. He has not had another sore tummy since and they were severe and constant for 5 months and he can now sleep easily at night.

He came into contact with strep again 3 weeks ago when friends came to visit with a daughter who had strep at the time and his symptoms flared up 3 days later so he was put onto a 9 day course of Azithromycin 500mg and now Azith 250mg for 18 days. The problem is that his tics are not going away and I heard that if it was PANDAS they should go within a few days of being on the medication. He has been on Azith for 14 days now. He now has a throat clearing tic and an eye rolling tic although he is walking properly again and his body discomfort seems to have gone totally.

Does this sound more like tourettes now or is it just going to be harder to treat as we were not diagnosed for the first 5 months.

I am unsure what to do next and feel so unhappy. We have eliminated rubbish from his diet - although we did eat very healthily anyway. Trying to follow Failsafe as much as possible. Along with the antibiotics he is taking probiotics, magnesium, taurine and I did try L-Carnitine but have now taken him off it. I have been advised against Calcium as it can interact with the Azithromycin.

Please, any suggestions would be appreciated. Hopefully one day I can help someone else. This is now 6 months on and his tics change constantly although never go away. He usually has 2 - 3 at the same time but 1 is dominant and the other 2 are very infrequent. The dominant tic changes every few days. it is starting to sound like tourettes. No-one in the family has any history of tics as far as I am aware - certainly not in the immediate family.

Sorry this is so long winded.

Thanks

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Jules,

Could you try the other antibiotic (cephalexin) that you say helped the first time? maybe that one works better for your child. I don't deal with PANDAS so don't know alot, but I hear the other parents say that not all the antibiotics work on their children, they have to try different ones sometimes. How old is your boy again?

 

Faith

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Hi Jules

 

so sorry to hear of all this and not a little angry at those physicians who dismissed your concerns! If all this is strep related, the rash may have been scarlet fever. If only more doctors took PANDAS seriously!

 

I am not sure if you have seen that we have a PANDAS forum here now. here is the link. the parents there are really clued up and can maybe offer advice to guide you further on that aspect

http://www.latitudes.org/forums/index.php?showforum=17

 

some kids do have a dual diagnosis of PANDAS and TS and yes, then the tics can wax and wane as with TS, while escalating in PANDAS episodes.

 

hoping you will get some clear answers and be able to help your son stabilize again

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Jules,

I agree with your Pediatrician that it sounds as though your son has Pandas, especially given his improvements on antibiotics. My 7 yo son has Pandas and went thru repeated strep infections throughout last fall and winter. Tics were his dominant physical symptom. In the beginning, all symptoms would disappear between episodes. But eventually, every time he started to get better and came off of antibiotics, symptoms would exacerbate. Eventually, episodes started to run together and the tics stopped going away.

 

I too struggled with whether I should accept a TS diagnosis. In May, we had my son's blood tested by Dr. Cunningham at the University of Oklahoma in the US (see the Pandas forum for tons of info regarding her tests). His results put him on the high end of Pandas kids and very close to Sydenham's Chorea. At his worst, my son's tics were so severe, he would "freeze" in mid-sentence or mid-stride for 3 seconds before he would resume his activity. It was terrifying.

 

In August, we went to Georgetown University and had plasmapheresis. 4 weeks after treatment, his tics completely disappeared. He does not have TS. He has/had Pandas. He is now on prophylactic azithromycin.

 

From reading your past posts, I wonder if you ever considered scarlet fever as an explanation for the rash.

 

I don't want to get off-topic on the Tourette's forum. But if you would like additional information, I'd be happy to discuss specifics with you privately.

I do want to encourage you to not give up on the Pandas dx. Tics can be very difficult to eradicate and often Pandas kids need IVIG or plasmapheresis to eliminate them. But if Pandas, the tics do not have to be a residual, permanent symptom.

 

LLM

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