[loud vocal tics again, need some urgent help!]

Make sure there is no Streptococcus thermophilus in your probiotic. I made the mistake of giving my son one with it and his reaction was immediate.

[home strep tests]

I bought mine from docsavings.com Alere Rapid Strep A Test Strip 25/BX for about 27.00. They are very easy to use, and I think it was the best purchase I have ever made.

[Son's tics exploding, trying to figure out what to do]

Have you thought about having a rapid strep test done? If your Doc is not on board, take him to a CVS minute clinic, if it's negative they'll send it to be cultured. Both my boys tested + this weekend. One has clear symptoms and had a + rapid, my other son rapid negative but + culture. Also Myco P is crazy bad this year. Both of these have been the lone contributor to my son's explosion of tics this year. He was put on antibiotics and they went right away.

Just a thought...

[My Story/help?]

Let me first say that I do not have OCD so I can not say that I know what you go through...because I do not. However, from reading your story... I think maybe you are simply not ready to settle down. I think you nailed many other people's stories in there lives esp dealing with long distance relationships. LDR are very hard and stressful! I think many people experience the same fears, high, lows that you do. I am very happily married, and some of the things you were saying ring so true in my life. The annoyances, the doubts,the I'm not good enough, then talking yourself back to reality etc. I can relate. I have severe ADD, and some OCD tendencies but I certainly do not suffer how you do.

Just evaluate the relationship, is this someone who you really love, want to spend the rest of your life with? I have dated a lot of really great guys, some who I knew were not the "one" even if at the time I wanted them to be. Strong relationships are grounded in trust. If you don;t have that, it will never work. You'll end up pushing him away. I don;t mean to sound negative, I'm only saying this b/c I wish you success. If it really is the OCD taking over, then consider counseling with your partner. So that he can better understand your feelings, and can make a conscious effort to make you feel better about your relationship. All the best to you! No matter what anyone will ever tell you, even the best marriages are hard work.

[Bright Red/Hot ears]

After googleing hot red ears, it seems like it may be a symptom of lyme? There were lots of other possible autoimmune causes, none that were pandas related but I thought that was interesting!

[Bright Red/Hot ears]

Weird question:

Does anyone else's kids get bright red, hot ears for no reason. I get them, sometimes only one of them, sometimes both. I feel like I have a high fever, but it will usually be slight. My son ears do the same thing all the time. Sometimes with a fever, sometimes w/o. It's sort of bizarre. Usually he does have a fever when they're red, but not always. It just always freaks me out with him b/c he has a febrile seizure past.. I know it's a weird question, he and I both have it going on right now, so that's why it came to mind.

[Strep infection and playdates?]

I think after 3 days you will be fine. They say 24-48 hours. If it's not her child it will be someone else. It's so hard in the winter, everyone seems to have strep!! My son was just fully exposed to a neighbor who tested positive and by the grace of God, he did not get it! He has had mycoplasma and then back to back strep infections in the past 2 months. I thought for sure he'd get it. Good Luck!

[Strep infection and playdates?]

Hi, I am trying to understand how this works.

 

I have a mother of a child my son is very good friends with who was also strep positive without symptoms like my son. He is now on day 3 of antibiotics

 

and she keeps asking for a playdate.

 

 

Since my son is only recently thought to have PANDAS and I don't have lab work results yet how does one handle this?

 

My son is finished as of today with his 250MG of Azith and I am scared to expose him even though the mother insists her son isn't contagious and is currently on abx.

 

 

 

Thank you in advance for any insight into this matter.

[T&A]

Tami,

I had a T&A in high school, and I can tell you from experience that there is a white coating on the tongue and throat. I also was coughing a lot of grey matter up. It was quite gross. I have had many surgeries including c-sections and other abdominal surgeries... by far, having my tonsils out was THE MOST PAINFUL!!! Encourage him to drink lots and lots of water. I kept a jug by my side and forced myself to drink all of the time. I recovered really quickly, but everyone is different. I do not have Pandas, so I can't say one way or the other if it will stir things up, but I do know how uncomfortable he must be. My neighbor's daughters both have had T&A's and one recovered in about 3-4 days, the other was out for 2 weeks feeling really bad. She said that she thought she was getting better, but then took a nose dive. So I just think everyone recovers differently. Keep the faith, push lots of fluids and pain meds. If he's breathing through his mouth at night, maybe a humidifier would help too.

My son has PANDAS and I'd be freaking out too, it's hard not to think every little thing will make things worse, but hopefully this surgery be what turns things around for you guys.

All the best!!!

Molly

[Alternative fever response theory]

I was hoping you were going to say the exact opposite. My son usually spikes really high fevers, up to 105 once. When he was younger, before all of the tics and PANDAS symptoms began, he a 3 febrile seizures, one lasted for 13 minutes. I have often wondered if there was a connection between the two.

[Kids and sleep issues]

GNC sells one milligram tablets in the cherry flavor. My son loves them!! I cut them in half for my 6 year old. It really does help. If he wakes and can't get back to sleep, give the other half. The key is to start the dose out low.

Molly

[how many kids took flu shot in our forum]

Flu season now, is flu shot safe for our kid with tics?

 

Since my son has asthma, I may take him for the shot, is there and connection between tics and immunization shot?

 

Anything could be helpful, thanks in advance

 

Lele

 

 

No way will I give my son the flu shot or mist this year. The last 2 years in a row (in November) he received the flu mist which was followed by an explosion of tics that lasted (both years) until February. Maybe the flu mist caused it (I think so) or maybe not...but I will not give it this year so if it happens again I can rule it out. Both of my boys had swine flu last year and they were totally fine. They had fever and flu like symptoms for about 2 days. Believe me, they have been a lot sicker from other viruses then from swine flu!! I think the immunizations carry a greater risk the the actual flu itself. I have started both my kids on extra vitamin D supplements along with the multi they already take. I have read a lot about it helping immunity with the flu. Google vitamin D and flu. You'll find lots of good info. Good luck!

Molly

[New and having a hard time Coping.]

Hello, my name is Lynn and my son is almost 5 years old and we first noticed eye blinking back in August of 2009, the pediatrician said it was common and would go away on its own – 2-3 weeks later it did. Then in February of 2010 the blinking returned, but with facial grimacing, the pediatrician still said not to worry about it and that it was probably a transient tic. Well, in April of 2010 he began having a vocal tic too, it’s a low hum/grunt and almost overnight things went down hill. He now has about 5-10 different tics that he does periodically throughout the day. The most common is still the grimacing/grunting, but we’ve also noticed some behavior changes. He’s less independent and needs lots of hugs and reassurance from us and he has started to become preoccupied with numbers and counting (OCD?). We haven’t noticed any signs of ADHD, in fact my older son has ADHD and my younger son really doesn’t exhibit any of the common signs of the disorder. So, we are hoping that doesn’t manifest itself too. So, for now we are most concerned about the tics, they break my heart and I feel so sorry for him. The doctor referred us to a neurologist and we will be seeing her in June. I have slowly started him on the Bontech supplements (the doctor ok’ed it), but haven’t seen any improvements yet. I also use the Epson salt bath’s, which seem to work for him and our pediatrician recommended giving him Benadryl, which I was worried about, but it did seem to take the edge off the tics. However, I stopped giving it to him because I was worried that long term use wouldn’t be healthy for him. We took him to a cognitive therapist this Monday and she is going to work with him weekly through play therapy. Although he doesn’t exhibit any major signs of needing cognitive therapy, we figured it couldn’t hurt and the early intervention might help in the long run.

 

I just can’t break through my pain and sadness. I want to be strong for him, but everyday I’m actually terrified for the moment he wakes up (nice mom huh?), I keep wondering when the day is going to come that my son is so mangled with tics that I don’t even recognize him anymore. He is the joy of my life & I keep fixating on what will become of his life with TS. The other night we were outside blowing bubbles and he was laughing, giggling and we were joking around having fun and for 10 minutes I was so happy, but then the realty set back in and the pain was so strong I thought I might actually die. I will do anything and everything possible to help my son get better and for him to have the best life possible. I will love him to health. I just keep praying that my was related to that. heart stops breaking and that I can be the person he needs me to be! Thanks for listening!

So much of your post reminds me of me and how I was feeling in the midst of my son's tics. He has had two explosive episodes that lasted for about 3 months. They always start in November and end in late Feb- early March. They start out explosive with nose scrunching adds eye blinking, sniffing and then slowly taper off. Both times my son had the flu mist, and I think (atleast this past year) they were related to that. I did try the kids calm and I think it helped. I also gave him 500 mg of vit C to help boost his immune system. I tried the flax oil but had a hard time getting him to takle it. My child is extremely picky!!! I used motrin incase there was swelling in his brain from the vaccines. I think the thing that helped the most was epsom salt baths every night. That and time...

I am so sorry you are feeling so helpless. I remember feeling that exact way. I would lurk on this forum for hours trying to find an answer, a cure for my little guy. I never posted though because I felt so crazed that I couldn't even put into words how I was feeling. Now that things have calmed down it's easier for me to talk about. All I can say is just shower him with love, hugs and kisses. I would talk about it with my son a lot trying to get an idea of what he was feeling. I beat myself up a lot that I gave him the flumist. I have a strong family history of ADD (I have it ) and also tics that a lot of men have on my side of the family. I think maybe it's genetic and it was triggered by vaccines or allergies. I still have not figured it out. All you can do is try to figure it out and if you can't it's ok. Some kids have tics.. mine included.. and that's just the way it is. It doesn't make them any less amazing (infact it makes them more amazing) All we can do is love them to pieces and try and do the best we can. I encourage you too get all the info you can and try everything that makes sence for your son.. This forum was amazing in my time of darkness. I found so much strength from here and never once spoke a word to anyone. Please don't beat yourself up. From your post I can tell you are an amazing mother and you love your son so very much. At the end of the day, that is all that matters!!!

-Molly

[Tics seasonal?]

meckert,

hello, ...I am going to put my vote in for the flu mist. Really, tho, you are lucky that the tics seem to run its course and then stay away till next season? that is pretty good. but if you are seeing definite correlation in November and after the flu mist or shot, I would forgo that next time. especially if the flue mist is live vaccine, the immune system may be running on high alert after that and cause some kick up in any nuero symptoms.

 

does your child have any other issues? I would say at least pull that flu stuff out of the equation, its a trigger for some, so I wouldn't take any chances..

 

 

 

Faith

 

 

Well I guess I didn't include everything that went on. So it all began 2 years ago in November. My son started having the nose scrunching and added eye blinking a few weeks later (these went on together) and they were explosive. At the same time he started having horriable night terrors that would last sometimes over an hour. He was also showing ocd behavior. Always asking us if the doors were locked, if we have enough milk, what if we run out of food. Behavor that I thought were weird and concerning for a 4 year old. We went to the pediatrician and I listed everything that was going on. My pediatrician thought touretts off the bat b/c there is some family history of tics on my fathers side. (never was PANDAS mentioned) I accepted this and just went on.. thinking ok we'll deal with this, it is what it is. So I was shocked when then they slowly tapered off I thought OMG he's fine! Until this November. Overnight he exploded with the scrunching first and then eye blinking (together) . This year there was no ocd at all but he was extremely hyper. When I took him to the Dr. he was shocked by his behavior. It's like he was climbing the walls. I do think he added a slight vocal tic, only when drinking and it was after the others had faded away. I went to his Dr. convinced that he has PANDAS, that he must have been exposed to strep last year when the ocd started, maybe the flu mist pushed him over the edge and then when re-exposed to the flu mist again this year it triggered it again. I can't say for sure that he started the tics after the flu mist the first year, but I know for sure that it was days after he received it this year. My doc ran all the blood tests and of course tested neg for all things associated with PANDAS but that really didn't make a difference to me since I knew it wasn't exposure to strep that triggered it this year. I do find it wierd that it has followed the exact same pattern both years, and blessed that it tapers off for (fingers crossed) months. I will not be getting the flu mist ever again that is for sure!!! I'm hoping that it was the flu mist and we'll never have this issue again but I also think that if it was a strep exposure in the first place and the episodes were triggered again by the mist... that this could happen again. Unless the mist alone can trigger tics?? It's all so confusing when there is no answer. My friends think I'm crazy and I think my doctor does to. Also I did forget to mention that my son had feberial seizures (3 total episodes) So sometimes I think... is this related too? Could it be the winter months, being closed up in the house, could it be the stress of Christmas coming? I guess I have to be patient and see if they happen again, it's just so bizarre!!!

Thanks for your reply!

Molly

[Tics seasonal?]

For 2 years in a row now my son (who is 5) has started tics in November. He always starts with nose scrunching, ads eye blinking then both tics fade away by late Feb/ March. Both years he has received the flu mist in November and that is the one thing I can say for sure has been constant. Other then that..the month they begin (November) and the time frame they lasted 3-1/2 months. They have totally disappeared again so I wonder could it be seasonal, or related to the flu mist. The tics come on with a vengence for about 2 months and then fade away over the next month. I have spoken to my ped about pandas and we did blood tests for it. All negative. I was not surprised since he was not sick at the time they began. I do think its' possible that the flu mist caused them again if he was exposed to strep prior. In any case, I find it so weird that they come on so strong and then leave for 8 months. Is this common? Anyone with a similar story?