do your PANDAS kids get tics while running fever or after the illness?

[tylermom]

i've posted on this board a few times in the last month because i think both my ds's have PANDAS. i took my youngest ds (4 year old) to a LPC last month for OCD, defiant behaviors, and tics. she asked if he had any strep infections and told me about PANDAS. i've been researching for a whole month about this because my oldest ds (10 y/o) started having tics and OCD at 18 months and was officially dx'd with Tourette syndrome at 2 years old. now our youngest ds is following the same pattern as his brother with the tics, OCD and bad behaviors. we've had tons of strep in our family...my hubby at least once a year has strep, oldest dd had it like 12 times in 18 months, 4 year old ds has 1 confirmed case at 4 months old he tested pos. on a throat culture. he was tested because both his older siblings had strep and he was showing symptoms so the pedi tested him. he also had ears infections every month for the first 15 months of his life. we finally got tubes in his ears at 15 months and the ear infections went away.

 

my four year old ds started running fever friday night. he ran 102 yesterday and the fever started going down without medicine last night it was down to 101. he says his throat is hurting. i looked in his throat and it looks red. his nose is stuffy and now tonight his eyes are very red and one is leaking tons of green discharge. it's running down his face. now tonight i noticed he has a rash on his chest and stomach. it's little red raised dots. his cheeks are flushed but that could be due to the fever. his tic had stopped last week and his behaviors have actually been good for the past week. now that he is running a fever his snorting/sniffing tic is back his behavior is not bad because he is really sleepy from the fever. so do any of your PANDAS kids get tics while they are running the fever or is it afterwards??? i am taking him to the dr. tomorrow and i am going to ask the pedi if he'll check his aso titer and the anti-dnase b levels. let me know if this sounds like a PANDAS child to you who are familiar with PANDAS. thanks.

 

jennifer

[jamielen]

i've posted on this board a few times in the last month because i think both my ds's have PANDAS. i took my youngest ds (4 year old) to a LPC last month for OCD, defiant behaviors, and tics. she asked if he had any strep infections and told me about PANDAS. i've been researching for a whole month about this because my oldest ds (10 y/o) started having tics and OCD at 18 months and was officially dx'd with Tourette syndrome at 2 years old. now our youngest ds is following the same pattern as his brother with the tics, OCD and bad behaviors. we've had tons of strep in our family...my hubby at least once a year has strep, oldest dd had it like 12 times in 18 months, 4 year old ds has 1 confirmed case at 4 months old he tested pos. on a throat culture. he was tested because both his older siblings had strep and he was showing symptoms so the pedi tested him. he also had ears infections every month for the first 15 months of his life. we finally got tubes in his ears at 15 months and the ear infections went away.

 

my four year old ds started running fever friday night. he ran 102 yesterday and the fever started going down without medicine last night it was down to 101. he says his throat is hurting. i looked in his throat and it looks red. his nose is stuffy and now tonight his eyes are very red and one is leaking tons of green discharge. it's running down his face. now tonight i noticed he has a rash on his chest and stomach. it's little red raised dots. his cheeks are flushed but that could be due to the fever. his tic had stopped last week and his behaviors have actually been good for the past week. now that he is running a fever his snorting/sniffing tic is back his behavior is not bad because he is really sleepy from the fever. so do any of your PANDAS kids get tics while they are running the fever or is it afterwards??? i am taking him to the dr. tomorrow and i am going to ask the pedi if he'll check his aso titer and the anti-dnase b levels. let me know if this sounds like a PANDAS child to you who are familiar with PANDAS. thanks.

 

jennifer

 

Jennifer,

My son is 6yrs old with PANDAS diagnosis Dec '09. Yes, we most definitely see an exacerbation of all his signs and symptoms, including tics, when he has a fever. Incidentally, for a couple of months, very red- almost slapped cheek appearance- were what we noticed first. Then we would take his temp and it would be > 101, then the PANDAS behaviors began. It was that predictable at first. Not so much since he has been on abx for so long.....

So hope he feels better soon!!

Jamie

[peglem]

When my daughter is actually feverish- its like a PANDAS vacation for us. She's calm and peaceful- that's only during the fever though. PANDAS behaviors come back when the fever goes away.

[pathfinder]

After.

Always after.

[nomoz]

My daughter flares up right before a fever onset, and then, during fever, she is very very calm.. Within days after, her symptoms flare up. I noticed that same rash on her stomach when she was about 2 and 1/2.. Could that be a strep rash, I wonder? At the time, my pediatrician said to take Motrin for it We've since changed docs.

Currently, my daughter (now 7) is on Biaxin and doing just wonderfully. She's being treated for micoplasma and lyme, which are co-contributors to this illness.

I'd put my money on everything you describe as PANDAS. Try a course of antibiotics, and take notes on behavior. Don't lose heart if first antibiotic doesn't cut it. You'll read here that most people have tried a few different ones before they find the right one for their child.

Good luck!!!

[thereishope]

I've experienced both ways. Once with the fever being there and once anincrease in symptoms about 3 days after the fever broke.

[monarchcat]

My son, too, will flare up before and after, but is usually tic-free and calm during a fever.

 

In fact, the one really truly defining illness for him that made us look into PANDAS went like this: Suddenly, after not having any tics for months he started ticcing like crazy...major, severe new neck tic that was almost constant. At the same time he said he had a mild sore throat, but he also seemed to have a cold so I didn't think strep. After two days of major ticcing, he very suddenly developed a high fever, vomiting, headache, sore throat. Raging strep. WHILE he was sick his tics went away completely. As he recovered the tics came back and then slowly waned over the next month or so.

[tired mom]

When my daughter is actually feverish- its like a PANDAS vacation for us. She's calm and peaceful- that's only during the fever though. PANDAS behaviors come back when the fever goes away.

Same here. The calm before the storm.

[tylermom]

so i took ds into the dr. this morning. i was up all night with my poor little guy because his ear was hurting, his eyes were so matted up he was running into walls when he would come into my room in the middle of the night, and he crouped all night long. so we go to the dr. he looks in his ears and says one of them is red, his throat was red and his glands were swollen. he said he has tonsilitis, i asked him if this was strep and he said probably so but he was not going to check for strep because he said he was giving him augmentin which he said would clear strep if thats what it is. i asked him about the PANDAS. i told him that i had taken my son to a counselor last month who had suggested it could be PANDAS. i could tell that he did not believe in PANDAS and thought i was crazy. i mentioned how my 10 year old ds had started having tics and OCD at 18 months and was dx'd with TS at 2 and he said i've never heard of a 18 month old starting with TS, i said well thats why i'm wanting to see if possibly both my boys have PANDAS instead of TS. He said well i would lean more towards TS especially since your oldest ds was dx'd with that and he said i'm going to give him (my 4 y/o ds) augmentin and it will kill the strep and so if it's PANDAS he would not have any more tics or OCD, etc. i do not believe this because what happens if he gets strep again then boom all the symptoms will come back. so i asked him if he could have my ds's aso titers and anti DNAse-B levels taken to see what it would show and he said that is not a reliable test for PANDAS because if he has strep right now then it's going to be high and all those test show is if your child has had strep in the past. so then i tell him how i had read how PANDAS and kawasaki are both caused by Group A strep and i told him how my nephew who is around my kids all the time had kawasaki 3 years ago. i told him how my nephew just last week had his aso titers taken and they were 600 and he was put on a 10 days abx. he said strep A has nothing to do with kawasaki, he said they really do not know what causes it but they think it's something viral. from everything that i have read it says that there is a connection between kawasaki and GAS. i forgot to tell him that before my nephew was dx'd with kawasaki he tested positive for strep. the pedi told me he wants to refer my ds to a neurologist who specializes in tic disorders at Texas children's Hosp. in houston, tx. he said they would be able to tell you what it is and he said if it's PANDAS then that's what it is. so i got the impression that he really doesn't know a lot about PANDAS i'm hoping who ever we see at TCH knows about it. i don't know if i should try to get a referral for my oldest ds also. anyways, i appreciate all your replies about how your dc act when they have a fever. my ds has been having wonderful behavior infact the only time he does have wonderful behavior is when he's sick. he's only done his tic a few times today it's definitely not as bad as it was the week before last or the past few months. i'm hoping the augmentin will clear all the strep out of his little body and maybe we can finally have some good behaviors and no tics for awhile.

 

jennifer

[sf_mom]

NOT TO SCARE YOU BUT.........

 

It sounds like your CHILD HAS KAWASAKI's!!! Extreme restlessness, swollen gland, rash (trunk, arms & cheeks) , RED EYES (dual conjunctivitis), high fever, you will have no positive culture with Kawasaki's..... PLEASE if this continues he needs to go to the HOSPITAL and ignore your PEDIATRICIAN. I've attached a research article that makes the connection with S. Pygenes and Kawasaki's.

 

Does your child have cherry lips? IVIG 2 m.g./kilogram over two days is the treatment.

 

http://www.springerlink.com/content/l34qj830548q4q46/

 

Symptoms of Kawasaki's, not all will be present, some symptoms are delayed.

 

Fever

Tiredness

Fretfulness

Abdominal pain

Rash

Conjunctivitis

Strawberry tongue

Dry cracked lips

Enlarged neck lymph nodes

Pale nails

Red soles of feet

Hardening of soles of feet

Red palms

Hardening palms

Peeling skin

Hyperthermia

Dry lips

Pharyngeal angina

Stomatitis

Joint pain

Breathing difficulty (some website's list as cough)

Edited April 12, 2010 by SF Mom

[tylermom]

SF Mom i hope it's not kawasaki, but yes he does have some of the symptoms. when my nephew had it they said it was strep and he was treated as if it were strep throat and a day after being on the abx one side of his neck swelled to about the size of a big apple cut in half. it looked like he had mumps on one side. he was then hospitalized and his dr. kept saying it was just strep. thankfully the dr. that was on call for his dr. for the weekend saw him and dx'd him right away and by that night he was receiving IVIG and by the next day his rash was fading and the swollen gland was going down. my ds's glands are not that swollen i guess they don't have to get as big as my nephews were. if my ds is not showing signs of improvement by tomorrow then i will for sure bring him to the hospital.

[sf_mom]

-edit- double post

Edited April 12, 2010 by SF Mom

[sf_mom]

As for our son, he never had swollen glands on one side, rash, peeling palms or hands........ our worst symptoms were restlessness, fever, the eyes and lips. By the time he was hospitalized he had slept only a couple of hours in the last two days. We took him to emergency and they gave us IV fluids and for the next 10 hours he proceeded to vomit the fluids up so we went back to emergency and that is when they admitted him to hospital. They didn't diagnose Kawasaki's until day 5 after Ecco and aneurysms were found. Kawasaki's is often missed because not all symptoms are present and sometimes delayed by weeks.

 

I don't want to be an alarmist but I also want you to be well informed if he gets worse. Praying he recovers and is o.k.

 

-Wendy

Edited April 12, 2010 by SF Mom

[sf_mom]

One more thing..... when did your nephew have strep and when were your kids last exposed? It takes approximately 10 days for S. pyogenes to incubate..... so if your kids were exposed 10 days ago from on-set of illness....... I would highly suspect its a strep related illness and in our particular case it was Kawasaki's.

 

'Streptococci are catalase-negative. In ideal conditions, S. pyogenes has an incubation period of approximately 10 days. It is an infrequent but usually pathogenic part of the skin flora.'

 

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

 

-Wendy

Edited April 13, 2010 by SF Mom

[trggirl]

Just FYI, our experience was that Texas Children's Hospital does not believe in PANDAS. When I presented Cunningham's and Swedo's studies, the doctor told me about all the "great" researchers that did not think the studies were good. Please, please post if you have a different experience.

Edited April 13, 2010 by Trg girl