My little boy diagnosed with TS - could it be PANDAS?

[lola]

My 7 year old son got diagnosed with TS 3 weeks ago, I have been reading this forum ever since and have made changes based on all of your suggestions, i keep thinking things are getting better and then he starts ticcing again. I noticed him making a nose clearing noise when he was 5, the docs reckoned it was just a habit, that then changed to him pulling his tummy in and out, that changed to fidgeting with his privates, that changed to him licking his fingers, that changed to a throat noise and on a recent family holiday to Florida his tics went crazy. he started making a loud growling noise alongside his throat noise, by the end of the 2 weeks he was stopping in his tracks to tic and his body was doubling over. the lastnight of our holiday we were at disney and he started complaining about his "habits" next thing i could see the whites of his eyes as his eyes flickered all over the place, it was terrifying. he was awful on the plane home too, the air hostesses were asking me what condition he had. we got him to the doctor straight away when we came home and got an emergency appt with a pediatrician who diagnosed him with TS. I can honestly say at that point we had a completely different child sitting in front of us, his behaviour was terrible, it had got so bad on holiday,he was hitting us and running around constantly.

 

We have cut sugar and dairy from his diet, only let him watch tv at the weekends, the same for xbox. started him on magnesium, pro-biotic with multi vitamin, candida clear (somebody recommended it on this forum), he is taking a jan de vries essence too. I am trying to get him allergy tested but am failing miserably, we have a National Health Service here in the UK so its not easy to get appointments for things like that especially with a TS diagnosis. I took him for a VEGA food sensitivity test today which showed oranges, tomatos, sugar, caffeine, dust, chocolate, tatrazine. I dont know how accurate these tests are?

 

I keep reading about PANDAS and wondering if it could be this, there is no family history of TS but we all have suffered from strep. my son had tonsilitis the week before we went to florida, he has had throat and ear infections every year for the past 4 or 5 years. I feel totally out of my depth, myself and my partner feel that we have nobody to turn to who will help us investigate all the things you guys suggest. our NHS probably wouldnt carry out all the different blood tests for heavy metals, minerals, deficiencies etc. We are devasted that our little boy has this condition and I am terrified where it is going, how bad it will get. To the people on this forum who have their kids tics under control, do your kids not tic at all now or are they just mild? Also are there any UK members who can recommend a specialist who can help us?

 

any help or advice would be most appreciated, we are desperate to help him.

 

thank you.

[dee45]

Hello,

I quickly read your post so I hope I did not skip anything It sounds like you did have a strept test done ? is that right? If not than that is something you have to do. Is he still on antibiotics? I know how frustrating this but hang in there you are doing the right things. I am just curious about the strept component.

 

Deanna

[lola]

Hello,

I quickly read your post so I hope I did not skip anything It sounds like you did have a strept test done ? is that right? If not than that is something you have to do. Is he still on antibiotics? I know how frustrating this but hang in there you are doing the right things. I am just curious about the strept component.

 

Deanna

 

Hi Deanna, he had a throat swab on 26th Oct when we returned from our holiday, the results were clear. His course of penicillin finished about a week before then, while we were on holiday.

 

Lola x

[thereishope]

Someone once wrote that you should wait 14 days after ending meds to have a follow up throat swab. I will search my different groups if anyone else is in the UK you can connect with. Is there anywhere else you can go (travel to)?

1.What antibiotic was he on?

2.You say you thought you saw some improvement. Is it that it was inconsistent and that's why you question it or is it that there was good improvement for awhile then it haulted?

3.Have you given him Ibruprofen to see if his tics improve with that?

4.Could you at least have his titer levels checked?

5.Keep in mind , some kids could have 2 diagnosises, Some kids may have PANDAS and TS, PANDAS and OCD. It's a lot to sort through. I'm sorry. Did you say his first onset was sudden and severe or a gradual worsening?

[T_Mom]

Hello and welcome, I am so sorry your child is going through this--

 

ANDREW J. CHURCH, B.SC., and RUSSELL C. DALE, M.B.CH.B., M.R.C.P.

London, U.K. are in London and very familiar with Pandas issues. That may be a start--

 

Chart and keep track of your child's reactions to antibiotics and find someone that is familiar with Pandas and willing to try to treat your child. I wish you the best with this --

[lola]

Someone once wrote that you should wait 14 days after ending meds to have a follow up throat swab. I will search my different groups if anyone else is in the UK you can connect with. Is there anywhere else you can go (travel to)?

1.What antibiotic was he on?

2.You say you thought you saw some improvement. Is it that it was inconsistent and that's why you question it or is it that there was good improvement for awhile then it haulted?

3.Have you given him Ibruprofen to see if his tics improve with that?

4.Could you at least have his titer levels checked?

5.Keep in mind , some kids could have 2 diagnosises, Some kids may have PANDAS and TS, PANDAS and OCD. It's a lot to sort through. I'm sorry. Did you say his first onset was sudden and severe or a gradual worsening?

 

We live in Scotland but would travel anywhere within the UK to help him. We would travel anywhere in the world to help him but I would rather try and see if somebody closer to home first. He was on penicillin, that is what the doc usually gives him for his throat/ear infections. Its hard to say if the penicillin helped his tics over the past few years because he only had a very minor tic for a few years, it changed and im sure sometimes it stopped, we weren't overly concerned at that point because we thought he just had a bad habit. He has always had a major clothing sensitivity, and I mean major, some mornings i was lucky to get him to school because he was going crazy that his trousers were not tight enough, he used to wear a belt every day and pull it so tight round his waist it must have been uncomfortable. His shoes also had to be pulled really tight. He still has major issues with clothes and was particularly bad while we were in florida. when i said there was improvement i meant with his sore throat not the tics. I just feel as if while we were on holiday he totally changed, his tics were so loud that people were staring, he was getting distressed about them, he was really lashing out at us too. Now he wont go to bed without somebody with him, he has evening and morning rituals when saying goodnight and when going to school in the morning. I really feel that his personality has changed. He ran off in the wrong direction the other day, turned and said to me, "Mummy, that little noise that I make is making my brain do different things from what I want to do." This scared me as he has never done anything like that before.

 

I havent tried ibruprofen yet but I can certainly give it a bash. Is this known to help kids with PANDAS?

 

I could ask my GP about getting his titer levels checked, that is assuming they know what to look for? Is this quite a straightforward test?

 

This big flare up of tics was a sudden onset but prior to that he had little habits (so we thought), nothing major though, just a little nose clearing noise initially which changed to various little noises but he only had one tic at a time. On holiday last month his arms were tensing, eyes flickering, tummy pulling, growling loudly. Things have calmed down now to a little gasp followed by a throat noise while pulling his tummy in and out. in the evening when he is tired i can see his mouth starting to twitch a little. We have made a lot of changes to his diet and supplements etc so I dont know if this is whats helping or if this would have happened anyway. Friends and family keep saying its probably just the excitement of being in Florida, surely excitement wouldnt cause his tics to go so crazy?

 

Lola

[faith]

hello again Lola,

What you are describing does sound like an 'episode' of PANDAS. the changes you have made are good ones and may certainly have contributed to his calming. keep that up, but also persue the testing and antibiotics for PANDAS.

 

funny, what you describe about the clothing issues is what my son does to a tee, including the tying shoes 'really tight', that was a battle all of second grade, what a ritual we had every morning. don't know if it feels les so now because he is 'slightly', lol, more independent, and I have tailored his clothes to the type he is comfortable with, so we don't have those fights and struggles every morning (I just grit my teeth and bear it, I know arguing will be of no use)...... my son is on his 4th day in a row of wearing the same pair of long shorts (it is Fall here in NY) because he's adverse to all the long pants he has in his drawer, he says they get too much hair on them....

 

 

Faith

[thereishope]

As you go on to describe his behaviors they sound more "PANDAS-like". In some PANDAS kids, Ibruprofen takes down enough swelling off the basal ganglia, that the parents see some improvemnt in behaviors and tics. If his titer levels are high, that may help you with doctors. However, it is not a test for PANDAS. Some kids on here have had low titers and still have PANDAS. It is not a diagnostic test for PANDAS.

[lola]

hello again Lola,

What you are describing does sound like an 'episode' of PANDAS. the changes you have made are good ones and may certainly have contributed to his calming. keep that up, but also persue the testing and antibiotics for PANDAS.

 

funny, what you describe about the clothing issues is what my son does to a tee, including the tying shoes 'really tight', that was a battle all of second grade, what a ritual we had every morning. don't know if it feels les so now because he is 'slightly', lol, more independent, and I have tailored his clothes to the type he is comfortable with, so we don't have those fights and struggles every morning (I just grit my teeth and bear it, I know arguing will be of no use)...... my son is on his 4th day in a row of wearing the same pair of long shorts (it is Fall here in NY) because he's adverse to all the long pants he has in his drawer, he says they get too much hair on them....

 

 

Faith

Hi Faith, OMG it is comforting to hear somebody say their son does the same things with clothes. he has wrecked so many shoes by pulling the velcro straps so tight that they snap. he will only wear 2 pairs of trousers over and over again and during the summer he only wanted to wear the same pair of shorts every day. it is about 8 degrees here in scotland and he would still go out in shorts. i have given up buying him the cool trendy clothes because they just lie in his wardrobe, elasticated waists from now on. he cant tie laces yet so god knows how that will go. im just laughing at the "too much hair on them" statement, i havent had that one yet, lol!

 

Lola x

[lola]

As you go on to describe his behaviors they sound more "PANDAS-like". In some PANDAS kids, Ibruprofen takes down enough swelling off the basal ganglia, that the parents see some improvemnt in behaviors and tics. If his titer levels are high, that may help you with doctors. However, it is not a test for PANDAS. Some kids on here have had low titers and still have PANDAS. It is not a diagnostic test for PANDAS.

 

thanks vickie, we can try the ibruprofen and i will ask the gp tomorrow about testing his titer levels.

[dut]

Hello.

 

(We're living in the US but from the UK, so, hi!)

 

I think somebody recently mentioned that Dr Kovacevic from Chicago (www.webpediatrics.com) recently went to Europe, not sure where, to talk to doctors there, fact finding kind of thing... maybe someone in the know can chime in or maybe you could mail him or Dr. leckman at Yale to see if they can put you in touch with drs there. Also try Diana Pohlman at the pandas network. I think the link is www.pandas.net. If that doesn't work it's in one of the mail that is "pinned " at the top of the forum discussions.

 

Good luck.

[EAMom]

Hi Lola,

I would also e-mail Dr. Trifiletti (on helpful docs list http://www.latitudes.org/forums/index.php?showtopic=5023 ) in addition to Dr. K to see if they have any recommendations on docs in the UK. I know Dr. Trifiletti has done some papers with Italians, so he might also know some others in Europe.

 

The ones T.Mom mentioned...Church and Dale are PANDAS researchers, not sure if they also see patients? But they would hopefully be able to recommend someone if they can't see your son.

 

Are you planning on visiting the US anytime soon? That would be a good time to draw blood for Dr. Cunningham's study (lab is closed until Jan). Her test may help you sort out if this is PANDAS vs regular tourettes. Or maybe you could draw locally blood and ship? I'm not sure of the logistics of shipping serum from the UK to Oklahoma. If you live in the US, the samples gets shipped overnight (with cold packs) on Fed Ex.

 

Here is one more doc. If he can't treat, perhaps he could rec. a local doc. Here is a link to a chapter in a book he wrote: http://books.google.com/books?id=hhE74A1fT...das&f=false

Gavin Giovannoni (London School of Med. and Dentistry). He is a prof. of neurology.

g.giovannoni@qmul.ac.uk

[lola]

Hello.

 

(We're living in the US but from the UK, so, hi!)

 

I think somebody recently mentioned that Dr Kovacevic from Chicago (www.webpediatrics.com) recently went to Europe, not sure where, to talk to doctors there, fact finding kind of thing... maybe someone in the know can chime in or maybe you could mail him or Dr. leckman at Yale to see if they can put you in touch with drs there. Also try Diana Pohlman at the pandas network. I think the link is www.pandas.net. If that doesn't work it's in one of the mail that is "pinned " at the top of the forum discussions.

 

Good luck.

 

Hi there, thanks for the info i will look into this. I spoke to my GP yesterday, she has never heard of PANDAS but she said she could see what their lab would test for and get back to me. The problem is we have to wait months for our appointment with all the relevant consultants, its very frustrating because I dont know if they will help us investigate for PANDAS or if they will just fob us off. I need to follow up on some of the contacts people here have suggested. I had already emailed pandasnetwork and she gave me a contact but again it was in the US.

 

Thanks for your help.

[lola]

Hi Lola,

I would also e-mail Dr. Trifiletti (on helpful docs list http://www.latitudes.org/forums/index.php?showtopic=5023 ) in addition to Dr. K to see if they have any recommendations on docs in the UK. I know Dr. Trifiletti has done some papers with Italians, so he might also know some others in Europe.

 

The ones T.Mom mentioned...Church and Dale are PANDAS researchers, not sure if they also see patients? But they would hopefully be able to recommend someone if they can't see your son.

 

Are you planning on visiting the US anytime soon? That would be a good time to draw blood for Dr. Cunningham's study (lab is closed until Jan). Her test may help you sort out if this is PANDAS vs regular tourettes. Or maybe you could draw locally blood and ship? I'm not sure of the logistics of shipping serum from the UK to Oklahoma. If you live in the US, the samples gets shipped overnight (with cold packs) on Fed Ex.

 

Here is one more doc. If he can't treat, perhaps he could rec. a local doc. Here is a link to a chapter in a book he wrote: http://books.google.com/books?id=hhE74A1fT...das&f=false

Gavin Giovannoni (London School of Med. and Dentistry). He is a prof. of neurology.

g.giovannoni@qmul.ac.uk

 

Hi there, we are just back from a trip to the US so i doubt very much if we will be able to go back anytime soon, to be honest we are terrified to take our son back on an plane after our last experience. I do regret not taking him to hospital while we were in florida because maybe then somebody could have tested him for it, it certainly seems to be better known in the US. I had contacted Dr Cunningham a couple of weeks ago regarding our son, she said that her study was closing that week but if I could get his blood to her by the end of the week she would include him in the study, there was no way i could have organised for bloods to be taken and shipped to the US within 3 days. I wouldnt even know where to start doing that. My GP seems willing to help anyway she can so if i find somebody willing to test in the UK im sure she will know of a way to ship the blood to them. Ill email G Giovannoni just now.

 

Thanks for all your help, I really appreciate everybody responding.

 

Lol x