flu and tics? tamiflu?

[airbucket]

My son Dx with TS, has had a BAD flu the past few days, and his tics have gone through the roof! He is better today, but still has much more tics than usual. Is there a discussion about flu virus and tics?? Why does the virus make my sons tics so much worse? He tested negative for strep and the pediatrician prescribed Tamiflu? I dont knwo what this is, i never give my son medication, cold medicine or anything of the sort but in this case I wonder if i should give it to him because the tics are so bad?? Does anyone know anything about this Tamiflu? Thank you!

[Caryn]

I just heard on the news that the FDA has issued a warning about Tamiflu---

 

http://www.webmd.com/news/20000112/fda-iss...about-flu-drugs (from 2000)-- This article basically says that the flue drugs are only good w/in the first 48 hrs of the outbreak.

 

http://www.webmd.com/cold-and-flu/news/200...tamiflu-warning

(recent warning that includes symptoms of delirium and self-injurous behavior--mostly in Japan.)

 

I think I would just let my son ride it out if it were me. The side effects might be worth it if my child did not have a neurological disorder to begin with and he was sick enough to really need it. Most of us recover fine from the flu without special medication.

We all got sick here with colds at our house except Tigger (must be the vits and diet-- hee hee). He is ticcing a little more than usual and is sleeping more. I think he may have been exposed to it and his body is fighting it off.

 

I hate the start of winter. It is so yucky.

 

Caryn

[airbucket]

Thank you Caryn! Im glad i did not fill the Rx yet - i was just worried that this virus would be like strep in pandas kids and not go away or something? im definitely not well informed on pandas so i dont really know what im talking about, but it just rang a bell when i saw how BAD my sons tics have increased since this flu. I would imagine that the virus will die on its own and then the tics should lessen again? What i am really interested in now is WHY do tics increase with a virus? Is strep a virus? Awfully confsing. Thank you for replying!!

 

I just heard on the news that the FDA has issued a warning about Tamiflu---

 

http://www.webmd.com/news/20000112/fda-iss...about-flu-drugs (from 2000)-- This article basically says that the flue drugs are only good w/in the first 48 hrs of the outbreak.

 

http://www.webmd.com/cold-and-flu/news/200...tamiflu-warning

(recent warning that includes symptoms of delirium and self-injurous behavior--mostly in Japan.)

 

I think I would just let my son ride it out if it were me. The side effects might be worth it if my child did not have a neurological disorder to begin with and he was sick enough to really need it. Most of us recover fine from the flu without special medication.

We all got sick here with colds at our house except Tigger (must be the vits and diet-- hee hee). He is ticcing a little more than usual and is sleeping more. I think he may have been exposed to it and his body is fighting it off.

 

I hate the start of winter. It is so yucky.

 

Caryn

[Chemar]

hi Airbucket

 

so sorry your child has the flu so bad but glad you checked first before using the tamiflu

 

because all the research and info on PANDAS and PITANDS is still relatively new and still controversial in conventional medical circles, it does become confusing sometimes to separate fact from theory

strep is a bacteria and PANDAS does seem to be associated with the streptococcal GROUP of bacteria, not just the strep that causes the "classic" strep throat

 

PITANDS is a term that has been used for conditions where the link is microbial (bacterial, viral, fungal, amoebic, other parasites) but not limited to strep

 

Although we dont even vaguely understand it yet, still by anecdotal and some research evidence, we clearly know that many kids with TS (and it seems some of the other tic disorders too) have waxing when they are ill, .....it seems that when the immune system is battling illness, tics go up.

 

here are some links on PANDAS and PITANDS that may be helpful ( do not that some of the info is outdated but the concept is well explained)

http://intramural.nimh.nih.gov/pdn/web.htm

http://www.tourettesyndrome.net/pandas_overview.htm

[airbucket]

thank you cheri! It never ceases to amaze me how you make time to answer our questions!

 

I will read those articles right away. Does this mean that children with GENETIC TS will not get worse tics when sick with a bacterium or virus, but kids who are not genetic will respond?? Is that one way to know if your child has genetic TS or not? My son always has SOME tics, be it a few or a few more when he is relaxed watching Tv or something, but usually they are not bad and do not interfere much. however starting last Wed. i guess when this virus got a hold of him, the tics were violent and out of control, he was contorting his whole body, i almost thought he was having a siezure. Would a child with genetic TS have such increase in tics when ill? Today he is MUCH better, i attribute to not giving him anything to bring the fever down and giving extra vits, and his tics are all but gone! Would anyones tics, regardless of their cause, get SO much worse when a virus is present? i know the immune system is weakened, but what does that have to do with tics if tics/TS is supposedly a neurological disorder? This is way out of my field, but i am going to look into it. I never bothered to notice over the past 3 years or so whether or not the tics waxed and waned with illness. wish i had.

 

when my son first started having tics around age 5, we thought they were part of a sensory disorder he was Dx with when he was small. He always had ot touch everything, rub himself on everyhting, touch certain body parts on others, rub his head on things, make funny noises, i always took these things to be "sensory issues". then, and i dont even recall if it was sudden, the sensory issues "changed" and became more like tics rather than just appearing to be a physical discomfort. It started with vocal tics and next came the having to touch everything symetrically, such as both sides of the wall in a hallway, then camethe shoulder raises, up and down. Never all that time, over a year, did i think it was anything but the sensory issues! Finally we were at the ped's and he saw my son tic and said whats going on with that? He was the first to suggest TS, especially hearing my sons rythmic grunting tic. Thats when we sought out a psychiatrist, a TS specialist, who prescribed the Abilify. As i have said, the abilify seem to literally make the tics dissapear, tho the doctor told us he was surprised because it was not a tic med. The tics were gone for the longest time. anyhow i am just, like others, trying to figure out the progression here. I found some blood tests that said that in 2004 my son had "streptocous in the left arm" (????? - i have to look into that. Thanks again for the info and if anyone has a comment of their own experience with illness and increase of tics, i would love to hear your experience.

[Chemar]

flying by for a quick reply

 

airbucket, YES, kids with TS or other neurological disorder gene *ARE* the ones who react to illness/ infection with a waxing of their pre existing neuro symptoms

 

however, for example in PANDAS, both neurologically susceptible and other kids appear to be able to be affected so that in eg a genetic TS and/or OCD child, things can intensify with strep exposure or infection and in those with no previous history symptoms can suddenly appear.

 

sorry for the very simplistic attempt at explaining a very complex phenomenon, but hope it sheds some light

[faith]

Airbucket,

glad things are back to normal . I think we have had some discussion here about how our kids react to illness (other than strep) like virus and fever, but can't find it right now, its probably back 15 or 20 pages. But we could revisit that here.... Your comment about genetic ts was interesting, wonder if that has any bearing too. My son tends to stop tics while having a virus or fever, although I don't believe he's really had the flu exactly. But when viral, (vomiting) I have noted a waning of symptoms. (non-pandas and i would say his tics are genetic).

 

Faith

[airbucket]

Airbucket,

glad things are back to normal . I think we have had some discussion here about how our kids react to illness (other than strep) like virus and fever, but can't find it right now, its probably back 15 or 20 pages. But we could revisit that here.... Your comment about genetic ts was interesting, wonder if that has any bearing too. My son tends to stop tics while having a virus or fever, although I don't believe he's really had the flu exactly. But when viral, (vomiting) I have noted a waning of symptoms. (non-pandas and i would say his tics are genetic).

 

Faith

 

thank you faith for your reply. Things are almost back to normal - his tics are gone, but he the other symptoms of behavior issues, moodiness and tantrums are going strong. I am trying to process this info as it confusing to me. My son was doing pretty well until this virus. His tics got awful. today the tics are GONE> not one tic. ??? How interesting that your sons tics stop when he is ill.....would that be true for me "true" TS cases? I want so much to understand why tics and other symptoms get worse during a virus or strep if the child is GENETIC TS. Well, a whole new topic to explore here for me. We are going to see Dr Murphy in about a week which i guess is good timing for these pitands/pandas concerns. Thank you so much for your words! I'll let you know.

[Chemar]

Airbucket, the majority of reports i have heard are that "true" genetically inherited Tourette Syndrome kids *DO* have increased tics and other Tourette spectrum symptoms both before, during and after an illness/infection, and certainly my son (as well as my husband) exhibit this

 

altho a few, like Faith's child, seem to have waning when ill with fever, yet from what I have heard, most exhibit waxing.

 

I tend to think this is in some way linked to the immune system. When ill, the immune system is hyped up. I think that may be impacting the waxing of the TS symptoms.

[airbucket]

Airbucket, the majority of reports i have heard are that "true" genetically inherited Tourette Syndrome kids *DO* have increased tics and other Tourette spectrum symptoms both before, during and after an illness/infection, and certainly my son (as well as my husband) exhibit this

 

altho a few, like Faith's child, seem to have waning when ill with fever, yet from what I have heard, most exhibit waxing.

 

I tend to think this is in some way linked to the immune system. When ill, the immune system is hyped up. I think that may be impacting the waxing of the TS symptoms.

 

ok, i finally understand - i think stress makes our brains function at half mast! I see what you are saying Cheri. I want to research this link between immune system and symptoms. this is most mysterious to me, but i suppose thats because for myself, i do not yet feel like i have a grasp on what is wrong with my son, what tourettes and other "neurological" disorder ARE and why they are so unpredictable. If nothing else was "wrong" for him others than tics and some ocd, i would not be so confused, but with his ulcer, constant stomach problems, odd behaviors that come and go and the never ending roller coaster of behaviors sometimes better sometimes worse, i am truly lost. I know we will get answers, but sometimes i feel like i have the most complicated child on earth and that writing a PhD thesis on the state of the world would be an easier task! Not to sound negative, if anything i force myself to be positive and aid my mind in understanding. I;'ve been told all the "trouble" is because of the stomach problems as the nervous system in the digestive track regulates everything, ive been told he is just born that way and thats that, ive been told it may be gluten and so on! May these answers find me soon, and all of us. I wish i could thank you enough for your help cheri!!

[kim]

Hi everyone!

 

Tamiflu, flu vaccination, or naturally occuring illness, could have implications depending upon the genetic expression of the immune system, it appears to me.

 

Just consider the effect tamiflu seems to be causing in some people and what we are seeing in regards to illness, whether viral or bacterial, etc. It probably will not be the same for each person, but it would be interesting to do a thread on this, and see how many we see with increase or decrease with each phase of illness.

 

Neither of my boys (that i can ever remember) "ticced" during what I would call the acute phase of an illness. Before or afterwards, yes. I think this article may offer some idea's is this area. Maybe during the acute phase, some problematic genes were underexpressed in my boys, and are overexpressed in others.

 

http://vir.sgmjournals.org/cgi/reprint/87/6/1677.pdf

 

 

In order to clarify the mechanism of the host response to influenza virus, gene-expression profiles

of peripheral blood obtained from paediatric patients with influenza were investigated by

oligonucleotide microarray. In the acute phase of influenza, 200 genes were upregulated and

20 genes were downregulated compared with their expression in the convalescent phase.

Interferon-regulated genes, such as interferon-induced protein with tetratricopeptide repeats 2

(IFIT2) and vipirin, were strongly upregulated in the acute phase. Gene ontology analysis showed

that immune response genes were highly overrepresented among the upregulated genes.

Gene-expression profiles of influenza patients with and without febrile convulsion were also studied.

In patients with febrile convulsion, 22 genes were upregulated and five were downregulated

compared with their expression in patients without febrile convulsion. These results should help

to clarify the pathogenesis of influenza and its neurological complications.

[bmom]

Airbucket,

I am still trying to figure this all out myself. I drive myself crazy trying to research and somehow discover the connection. One thing that I know is that all of the symptoms that you are describing in your son are likely connected. I truly believe that the gut is connected to the brain and the immune system and just wish that research would catch up with it. I just read Jenny McCarty's book about her autistic son who had digestion issues and she had him tested by an immunologist who said his immune system was as bad as someone who is dying of aids. Im sure that autistic, tourettes, adhd and probably many more children would be helped. So many people have described issues with their childrens digestion system and problems. Have you tried an environmental or DAN Dr.? This could uncover some of the mysteries-possible food intolerance or yeast? Good luck and please post your experience with Dr. Murphy after you see her. Her assistant just emailed me some Dr.'s closer to our location that also are familar with PANDAS so this may be an option for some that are not able to go to Florida or for some like me who are thinking that this could be a first step before making the long trip. The discussion of genetic TS and Panda and Pitandas has me confused. If they all get worse with sickness is the a differentiation. Could an adult with tics be untreated Pandas that resulted in daily ticcing? I ask because my son has had 2 episodes of ticcing. The first was explosive 10 days after sore throat and fever. Did not have him tested for strep thinking he was just ill. Still did not after ticcing began because after seeing 5 experts no one mentioned it. Then recently he had some increased-and different tics before, and during stomach bug. So it kinda sounds like Pandas or Pitandas, but unsure. My husband does have some minor tics so would this be genetic only and rule out the Pandas and Pitandas? Soooo confusing. Could it really be that it is all the same and just different factors for each child that makes them tic or is that too simple?

[michele]

I am glad your son is feeling better. I just recently found out from a young adult who has lived through PANDAS for ten years, that anti nausia meds like draminine really can intensify tics. Now I am beginning to wonder if it is the dramimine I gave my son when we traveled in Aug. that kicked up his neurological problems. I mean it was immediate on the car ride home that they started his urination frequency and the finger cracking. It lasted like four months. In our case after a response to strep exposure, his tics last for months. He doesn't even get the strep. They don't just go away in a day. He gets into an episode that is very severe. Yes the moods, and talking with inappropriate thoughts, the ocd, the fears, they are dramatic and overnight. We were only better for about a week and he must have been exposed again. Overnight it was back. The crying, temper tantrums, squeals, bad words, having to pee constantly, hyperness. I am beginning to think we need a psychiatrist. At what age do they start CBT? I read Jenny's book and really related to it. I think PANDAS episodes resemble tourettes alot. The girl I talked to still has troubles during her time of the month with hormones, also if she gets sick her symptoms return. There is alot we still don't know. I hope you can bring us back some info from Dr. Murphy. She holds a wealth of information. Good for you getting in with her.

Michele

Airbucket,

I am still trying to figure this all out myself. I drive myself crazy trying to research and somehow discover the connection. One thing that I know is that all of the symptoms that you are describing in your son are likely connected. I truly believe that the gut is connected to the brain and the immune system and just wish that research would catch up with it. I just read Jenny McCarty's book about her autistic son who had digestion issues and she had him tested by an immunologist who said his immune system was as bad as someone who is dying of aids. Im sure that autistic, tourettes, adhd and probably many more children would be helped. So many people have described issues with their childrens digestion system and problems. Have you tried an environmental or DAN Dr.? This could uncover some of the mysteries-possible food intolerance or yeast? Good luck and please post your experience with Dr. Murphy after you see her. Her assistant just emailed me some Dr.'s closer to our location that also are familar with PANDAS so this may be an option for some that are not able to go to Florida or for some like me who are thinking that this could be a first step before making the long trip. The discussion of genetic TS and Panda and Pitandas has me confused. If they all get worse with sickness is the a differentiation. Could an adult with tics be untreated Pandas that resulted in daily ticcing? I ask because my son has had 2 episodes of ticcing. The first was explosive 10 days after sore throat and fever. Did not have him tested for strep thinking he was just ill. Still did not after ticcing began because after seeing 5 experts no one mentioned it. Then recently he had some increased-and different tics before, and during stomach bug. So it kinda sounds like Pandas or Pitandas, but unsure. My husband does have some minor tics so would this be genetic only and rule out the Pandas and Pitandas? Soooo confusing. Could it really be that it is all the same and just different factors for each child that makes them tic or is that too simple?

[michele]

I am glad your son is feeling better. I just recently found out from a young adult who has lived through PANDAS for ten years, that anti nausia meds like draminine really can intensify tics. Now I am beginning to wonder if it is the dramimine I gave my son when we traveled in Aug. that kicked up his neurological problems. I mean it was immediate on the car ride home that they started his urination frequency and the finger cracking. It lasted like four months. In our case after a response to strep exposure, his tics last for months. He doesn't even get the strep. They don't just go away in a day. He gets into an episode that is very severe. Yes the moods, and talking with inappropriate thoughts, the ocd, the fears, they are dramatic and overnight. We were only better for about a week and he must have been exposed again. Overnight it was back. The crying, temper tantrums, squeals, bad words, having to pee constantly, hyperness. I am beginning to think we need a psychiatrist. At what age do they start CBT? I read Jenny's book and really related to it. I think PANDAS episodes resemble tourettes alot. The girl I talked to still has troubles during her time of the month with hormones, also if she gets sick her symptoms return. There is alot we still don't know. I hope you can bring us back some info from Dr. Murphy. She holds a wealth of information. Good for you getting in with her.

Michele

Airbucket,

I am still trying to figure this all out myself. I drive myself crazy trying to research and somehow discover the connection. One thing that I know is that all of the symptoms that you are describing in your son are likely connected. I truly believe that the gut is connected to the brain and the immune system and just wish that research would catch up with it. I just read Jenny McCarty's book about her autistic son who had digestion issues and she had him tested by an immunologist who said his immune system was as bad as someone who is dying of aids. Im sure that autistic, tourettes, adhd and probably many more children would be helped. So many people have described issues with their childrens digestion system and problems. Have you tried an environmental or DAN Dr.? This could uncover some of the mysteries-possible food intolerance or yeast? Good luck and please post your experience with Dr. Murphy after you see her. Her assistant just emailed me some Dr.'s closer to our location that also are familar with PANDAS so this may be an option for some that are not able to go to Florida or for some like me who are thinking that this could be a first step before making the long trip. The discussion of genetic TS and Panda and Pitandas has me confused. If they all get worse with sickness is the a differentiation. Could an adult with tics be untreated Pandas that resulted in daily ticcing? I ask because my son has had 2 episodes of ticcing. The first was explosive 10 days after sore throat and fever. Did not have him tested for strep thinking he was just ill. Still did not after ticcing began because after seeing 5 experts no one mentioned it. Then recently he had some increased-and different tics before, and during stomach bug. So it kinda sounds like Pandas or Pitandas, but unsure. My husband does have some minor tics so would this be genetic only and rule out the Pandas and Pitandas? Soooo confusing. Could it really be that it is all the same and just different factors for each child that makes them tic or is that too simple?

[kim]

anti nausia meds like draminine really can intensify tics. Now I am beginning to wonder if it is the dramimine I gave my son when we traveled in Aug. that kicked up his neurological problems.

 

I always llike to look at how these drugs work now, when somesone comments on them. Wiki says dramamine is an anticholinergic. I was just reading about 5HT earlier (another anti nausea medication). It blocks a certain serotonin receptor. Interesting to learn why some of these things make symptoms worse sometimes.

 

these are just from wiki......on dramamine

 

Anticholinergic http://en.wikipedia.org/wiki/Anticholinergic

 

H1 antihistamine http://en.wikipedia.org/wiki/Antihistamine

 

Dimenhydrinate (marketed under brand names Dramamine, Gravol and Vertirosan) is an over-the-counter drug used to prevent motion sickness.

http://en.wikipedia.org/wiki/Dimenhydrinate