Not sure where to start.

[MMMommy]

My son has had tics now for about 2 years. They started in spring of 2011 after 2 bouts of strep. The first time all he had was a throat clearing and since it was allergy season I did not give it a second thought.. However over time, He would do this for no reason over and over and did not seem to know he was doing it. Shortly after started the eye blinking. Then it all disappeared for 6 months.

 

At the start of school 2012-2013 he seemed to have new tics. Eye blinking along with throat clearing and then some other head movements.

 

I did contact Dr Trifiletti who gave me the tests he needed and I had my dr order them and he did. The levels did not come back positive for lyme or PANDAS.

 

I contacted Dr Elia of Childrens and he had an evaluation and she ordered another set of blood work which showed 1 marker for lymes but not enough for a positive but no sign of PANDAS.At the time he was tic free but I did show her a video I had taken of his tics when he was unaware. She wanted him to have VIT D and Omega supplements. But felt at that time he did need meds. Which I am in agreement with. My whole goal is NOT to have him medicated. From someone I talked to who is now an adult and has taken meds, She said that they don't really help as much as they hinder.

 

He was tic free from last July until this April 2013 at which time they are way more vocal and animated. He had a serious of tics about 3 weeks ago that just hit me hard. He would suck his stomach in and out while making a noise and It was just torture for him and Me. To sit and not be able to help him has been excruciating.

 

So here I am. I don't know really where to start. I started a journal today, Writing down current symptoms along with past history as best as I remember it.

 

My son is an amazing kid. He has learned to deal with most of it. The kids in school gave him a hard time at one point but he explains it well now. He just tells them it is a medical condition. Something he can not control like hiccups. I am so proud of him.

 

His teacher is awesome and she has his back and she said he does really well at handling himself. There was an aide who did not know but told him to stop making noise and even when he told me about the story about her and could see me getting worked up, He told me that it was okay mom, She just doesn't know. She just needs someone to explain it to her. I love this kid..

 

So here I am. Trying to find a way to help him. To help him feel good about who he is and how God made him. And yet help him get some relief if I can.

 

I need to be honest and say I have put my head in the sand hoping that it was just a weird anomaly and it would go away on its on.. Yeah, I know...

 

My husband has tics but has learned to hide them his whole life. His are not verbal as much but are more stuck motions.. He will turn off a light switch 5 times...

 

 

 

I was happy with Dr Elia but she has since moved to Delaware. I am in the Philly burbs... I am happy to travel to see her but I am not sure that is an option so I am looking for a well trusted Doctor close to the area.

 

Ill take any suggestions. I am not sure if behavior modification is a route I want to go because I don't want my son to feel what he is doing is wrong.. I just want him to have help to control them if that is what HE wants.

 

So as you can see I am kind of lost and all over. Thanks for reading!! Any advice appreciated..

[queenmother]

Mmmm...I'm pretty new here but my first reaction is to do a trial run of an antibiotics that covers a broad spectrum....just to see if it helps. I'm sure a lot of people cringe at giving unnecessary abx but,given that so many kids don't initially test postive, I would want to give it a shot. Doxycycline is good for lyme and mycoplasm and helps with strep though it is not the first choice for strep. Azithromycin is good, too. Amoxicillin and Augmentin show up resistant for us and are useless but may work for your son. I'm sure you'll learn more from the more experienced folks on here but I would have to try. The longer it goes, the worse they get and the harder they are to get rid of. Have you tried antibiotics?

QueenMother

[Chemar]

Hi MMMommy

 

I just want to mention that if 2 doctors ...one considered a PANDAS expert, have told you it is not likely PANDAS, then I am not sure why you would want to try antibiotics as suggested in the post above? But that of course is between you and your physicians to decide., especially with the past history of strep and whatever that Lyme test showed. Please also be very cautious if anyone suggests steroids, as those can make things worse in people with TS, and I have also heard they are contraindicated for Lyme.

 

In terms of investigating other potential triggers for the tics, I would look for an Integrative or Environmental doctor (MD or DO) as they are usually more clued up on things

 

The fact that your husband has tics and that light switch 5 times thing sounds a bit OCD....perhaps you are seeing genetic TS?

 

If you do get a TS diagnosis, the school is legally bound to accommodate his tics and any other manifestations, as TS is covered under the ADA for education. We found having a 504-plan very helpful for my son

 

There is a very good website that discusses all things related to TS http://www.tourettesyndrome.net (though they are not very clued up on PANS related tics imo)

 

Do be sure to read the "Helpful Threads" pinned to the top of this forum...I also have a link to them in my signature below...as you may get some good pointers there too.

 

I hope you manage to find a good doctor to guide you, and get some clear answers as to what is causing your son's tics, so that you can begin correct treatment strategies.

[colleenrn]

Can you say more about the testing you did that ruled out PANDAS? It is not always so easy to rule out PANDAS and IMO if the tics began with a strep infection, I would remain suspicious it could be PANDAS. Did you test for Lyme through igenex? What "markers" came up positive in your Lyme testing?

Did Dr Trifiletti test for mycoplasma pneumonia, viruses, strep titers? I am not pushing the use of antibiotics, but have you tried a course of 2-3 weeks of a treatment dose?

 

Colleen

[MMMommy]

I will have to pull results and you can maybe tell me what the tests were and what the results mean is it is mostly greek to me.

 

I don't want to put him on Antibiotics without cause. If he needs them then that is awesome but he is allergic to penicillin which limits that option anyway. No steroids unless we have no other choice. He has only had them once and it was not an issue then but his tics were not as bad as they are now.

 

Yesterday after reading about TS and magnesium, And doing a lot of research on line, weighing benefits and risks, I started him on 125 mg of Magnesium last night before bed. After weeks of extreme vocal tics, Noises and HMMMM over and over and large movement tics this morning there was marked improvement. I counted no movement tics and only 2 vocal tics.

 

I also put him to bed earlier last night and he was not allowed to have his iPod. I did let him watch a movie as that seems to always calm him down from a busy day.. And then it was lights out. He fell asleep around 9:30 but dh said he woke up early around 5 am.. Which is odd for him. Not sure if it is related to the Mag or just a fluke. I am trying to establish a bed time routine as we have been out of whack the last few months.

 

PANDAS is in the back of my mind still but I do know that Dr Elia knows about PANDAS and that is why I went to her and I do feel good about her assessment. She did follow up blood work and found that there was no finding of PANDAS.

 

I wanted it to be PANDAS, as there seems to be a way to put that down and with Tourettes it seems it is just a management plan that helps the person deal and suppress as much as we can with external improvements.

 

I will find the results today and see what you think.

 

CHEMAR, Thank you so much for all the links! I did come yesterday and explore your links. Thank you so much for putting that together. I am in search of a great local dr. So that is my next plan. I am in Bucks County PA if anyone knows of a good one that is local.

 

I love his Ped. I have used him with all my kids and he has never ever put me off when I have concerns or want to explore other options...

 

Recently a friend posted a blog from a friend of hers who had a child with severe disabilities and how she fought so hard for him. It made me feel like a whimp. I have been hiding hoping this would go away and not helping him as I could. My DS takes the stance of it is completely normal for him and people just need to accept it. I love that about him.. But I also want him to have as much relief as possible. I am not sure a clinical diagnosis will make anything better, But I suppose that it may help me fight for him at school. This year he has an awesome teacher. Last year the teacher kept telling me he needed meds and tried to force me into a school psych consult. One thing about me, If you try to force me to do something I do not think is in the best interest of me or my child, I baulk and baulk well..

 

My goal is to be the best advocate I can for him. To explore treatments while helping him to navigate this.

 

I started a log yesterday to track tics, supplements, history as I remember it and drs visits. I checked yesterday and since Dr Elia moved to delaware I am not sure my insurance would cover it because it is out of state??? Does anyone know how that works???

 

I have to get my little one breakfast and set up and then I will post lab results from Last winter.

 

Thanks so much for your help, advice and information. I am not ruling anything out at this point.

 

 

ETA: One more question, Is Mag better taken at night or in the morning? Is there an evidence one is better than the other???

 

TIA!

Edited May 14, 2013 by MMMommy

[Chemar]

Quick reply as I am at work....magnesium is best at night as it can also promote restful sleep. Consider also doing the magnesium sulfate=Epsom salts baths in the evening as that both relaxes and calms tics before bed.

 

If magnesium is helping and there seems to be a family history of tics....TS may well be the dx imo...the strep may have triggered things, but that does not necessarily mean PANDAS resulted....may just have caused the TS to manifest....jmho

[MMMommy]

Thanks for that. I am leaning that way too. I have always feared that diagnosis because I remember the crazy people who have been portrayed in bad sitcoms that have it and are incapacitated by it. But I realize realistically there are many degrees and that if it is TS it is what it is. I have to stop hiding from it and take an offensive position instead of being head of the defense, deflecting and covering.. I need to be proactive for him and see how I can help him and keep him happy while dealing with this.

 

I will try the epsom salts, But then I would not give him the supplement that night, yes? He is not a bath kid but he may be willing to try it if it will help him.

 

My dh also has MS which is not genetic but still I have to wonder....

[Chemar]

you can still give the supplement as well as the epsom bath

 

for TS at least 300 mg magnesium is suggested daily for kids.

[MMMommy]

Thank you.. I will get out the results of his blood work when I get back and post them,

 

I so appreciate all the help. I am sure it can be tiring telling us newbies the same thing over and over!

[bettyjuck]

Hi....Just a quick note. My son's issues all started after a bad virus and his tics (along with a slew of other things) only come out after he is sick and his immune system is attacked. They believe he has PANS and it is caused by inflammation and not antibodies. So not only strep effects him. it is any virus or bacteria. We decided to try the antibitotics based on a recommendation from a doctor doing a trial study on Pandas/Pans. They believe that PANS is caused by inflammation and that Zithromax helps stabilize the immune sytem. Well it worked....back to 100% until he gets sick again. Every doctor has a different view. But it does not hurt to look down every avenue.

[MMMommy]

Now tonight he seems to have had a high tic time.. About 2 hours worth. I just gave him his Mag tonight I gave him about 180 mg. It is the nature made brand. And now he seems settled again. Is this normal?

 

I just don't want to make it worse for him. That is my biggest goal. I may not be able to help him completely but I just don't want to make it worse for him. I had such hope today as things seemed better and then this afternoon I just felt awful thinking I made it worse for him.

 

I am a novice at this subject. I am just finding my way. I appreciate all the information and believe me, I am not ruling anything out.

 

I am so glad that you are all here. I don't have anyone else to discuss this with. Thanks so much.

[Chemar]

Hi

just wanted to mention that where Nature Made does not have anything particularly bad in it...it is magnesium oxide which is pretty useless as it is very poorly absorbed.

Much better to get a different kind of magnesium and avoid any of the mag oxides (most companies use it as it is cheap to make...but the amount absorbed is far inferior to other types of magnesium

 

If I can give you a bit of advice that I wish I had heeded when my son first manifest his tics many years ago.....try to stay as calm as possible and take it a day at a time. Tension in mom translates to tension in child = stress=more tics! One of the things always mentioned is that the more one draws attention to the tics, the more the person will likely tic. As hard as it is, you need to try not to let your son see that you are stressed or continuously focused on his tics.

 

If he does have TS, there will be waxing and waning, and that is just a fact. Finding what the things are that may be triggers can help enormously to reduce the frequency and intensity of waxing phases...... but people with TS tic. You will drive yourself nuts if you keep blaming yourself every time he may have an increase in tics! It is not your fault.

 

It helps to keep a journal and when you read through it, you'll be amazed at how you start being able to identify tic triggers! But try to do this in a way that does not make your son feel his tics are in some way the cause of distress for his mom.

 

Hoping you find a good doctor who can guide you through all this.

[tpotter]

Hi....Just a quick note. My son's issues all started after a bad virus and his tics (along with a slew of other things) only come out after he is sick and his immune system is attacked. They believe he has PANS and it is caused by inflammation and not antibodies. So not only strep effects him. it is any virus or bacteria. We decided to try the antibitotics based on a recommendation from a doctor doing a trial study on Pandas/Pans. They believe that PANS is caused by inflammation and that Zithromax helps stabilize the immune sytem. Well it worked....back to 100% until he gets sick again. Every doctor has a different view. But it does not hurt to look down every avenue.

I agree with this. DS (now 20) was tested several times, as he was dx with Asperger's in 7th grade (but was symptomatic as long as I can remember). He developed tics in 4th grade, but then we figured out they seemed to be related to gluten. Blood tests indicated that he did not have PANDAS, after his brother had sudden onset PANS (but took 4 years to get a dx.) Finally, we took him to a PANDAS specialist along with his brother, who put him on abx (azith the first time), and within hours he was 100% better (didn't last, because we are still dealing with other things like food sensitiviites, etc.), but between that episode and 2 more in which abx turned him around overnight, I have to urge you to, at least try abx. Now, it is possible that there is more going on, too. We do know that lyme, and possibly bartonella, babesia, viruses, and of course food, could be playing a role, and although he is mostly functional (attends college), he is really struggling right now. I would suggest that you try abx. I also living in the Philly burbs. PM me with where you live, who your Pediatrician is, and I'll give you some info to lead you to a dr. who can help you. Dr. Elias is very conservative with tx, and I don't think she tends to prescribe abx (at least she didn't when we first went to her.) Dr. T. also can be limited. Again, it was trial that told us our son had more going on than just tourettes, bipolar, asperger's (which incididentally, when given IVIG, improved his social skills by 7 years.)

Edited May 15, 2013 by tpotter

[Cj60]

http://www.woodmed.com

 

If you're in Bucks, it's practically in your back yard.

[MMMommy]

 

Hi....Just a quick note. My son's issues all started after a bad virus and his tics (along with a slew of other things) only come out after he is sick and his immune system is attacked. They believe he has PANS and it is caused by inflammation and not antibodies. So not only strep effects him. it is any virus or bacteria. We decided to try the antibitotics based on a recommendation from a doctor doing a trial study on Pandas/Pans. They believe that PANS is caused by inflammation and that Zithromax helps stabilize the immune sytem. Well it worked....back to 100% until he gets sick again. Every doctor has a different view. But it does not hurt to look down every avenue.

I agree with this. DS (now 20) was tested several times, as he was dx with Asperger's in 7th grade (but was symptomatic as long as I can remember). He developed tics in 4th grade, but then we figured out they seemed to be related to gluten. Blood tests indicated that he did not have PANDAS, after his brother had sudden onset PANS (but took 4 years to get a dx.) Finally, we took him to a PANDAS specialist along with his brother, who put him on abx (azith the first time), and within hours he was 100% better (didn't last, because we are still dealing with other things like food sensitiviites, etc.), but between that episode and 2 more in which abx turned him around overnight, I have to urge you to, at least try abx. Now, it is possible that there is more going on, too. We do know that lyme, and possibly bartonella, babesia, viruses, and of course food, could be playing a role, and although he is mostly functional (attends college), he is really struggling right now. I would suggest that you try abx. I also living in the Philly burbs. PM me with where you live, who your Pediatrician is, and I'll give you some info to lead you to a dr. who can help you. Dr. Elias is very conservative with tx, and I don't think she tends to prescribe abx (at least she didn't when we first went to her.) Dr. T. also can be limited. Again, it was trial that told us our son had more going on than just tourettes, bipolar, asperger's (which incididentally, when given IVIG, improved his social skills by 7 years.)

 

Thank you for the information. I am just trying to take it all in at the moment. It feels like a loss. I know that sounds silly but I realize I have just been putting off the reality of it and in the last few days I have felt sad, anxious and confused over this. I want so much to help him and get him the right help and to the right drs but I feel like there are so many different options and places to start. I will pm you, My little guy is home sick and so I am just hanging with him this morning... sucking up the love..

http://www.woodmed.com

 

If you're in Bucks, it's practically in your back yard.

Thanks! Quakertown is a drive but not bad!! Thank you so much..

 

 

 

I did some research on better magnesium options and will get the epsom salts and see if that helps.

 

When I first started researching this and emailed Dr T's office he emailed me back and told me to try Ibuprofen to see if it helped the tics.. It did seem to then.. But does not seem to now.

 

I was going to contact Dr Elia's office and ask her for a referral to someone here in PA since he was her patient prior to her moving. I was sad she moved. I know she is conservative but at least she does know what she is dealing with so I felt like I would not be pushed into treatments and she would be able to see progression and options for us.

 

This morning there was small vocal tics after 175mg of the mag that I have. Apparently not the best choice so I am going to get the mag citrate and see if that helps more.

 

I feel like I am rambling but little one needs me so I need to get to him.

 

This morning I feel angry. We have all these diseases of the moment that people pour money and research into,. This seems way more common and yet I don't see anyone fighting for people that suffer with these neuro conditions... It ticks me off frankly.. but that is a whole other discussion..

 

I can not tell you how much I appreciate all the help. There is no where else I have gathered as much information and felt as much hope. Thank you all.