So confused - looking for help

[Hope]

I have been mostly a lurker here. I am still struggling for answers and have gotten a ton of great info from everyone. This site is wonderful!

 

Here's a little info about us:

DS started wtih a verbal tic "hmmm hmmmm" when he turned 8. His dad had a pulmonary embolism and was in the hospital for over a week. DS got a lot of attention for it at school from well-meaning teachers and friends but he became anxious about the whole thing. He is our oldest so he understood more about what was happening to daddy than our younger ones.

 

I didn't pay too much attention to the tic, didn't even know it was tic at the time. I just figured it was anxiety due to his dad's situation. It came and went for the rest of spring/ summer. Not a big deal. We went on vacation and I noticed he did it alot! I even tried to bribe him to stop for a short period of time when we were visiting a zoo. I was amazed but he couldn't! That is when I started realizing this was something to be concerned about.

 

2 1/2 years later he still has tics. He has added more like eye blinking, throat clearing, other noises, neck stretching, touching things to his lips and just recently head nodding and shaking. The head thing is very noticeable and we are concerned about the effect at school with peers of course. Also, it is giving him muscle tension and headaches.

 

When the head shaking started he had just gotten sick. Took him for strep culture. Negative. Said it was viral. Waited it out. He got sicker and tics kept increasing. After 3 weeks he was diagnosed with walking pnuemonia. Put on Zithromycin Z-pack. After a few days he felt better and the head shaking started to decrease. Overall, he is much better. Still tics everyday but most are not that noticeable and not interfereing with his general well-being.

 

Well, his younger sister age 6 has been sick. Had her tested the same time as him for strep because she had a rash on her chest. Negative. That was a month ago. Rash came back. Maybe it is a new rash. Looks terrible all over her trunk and down her legs/arms. Not itchy. Doesn't bother her. Tested positive for strep yesterday. Scant results but treating with Amoxycillin. She's actually been on abx for 3 days but rash isn't going away.

 

My son with the tics is saying his stomach hurts and his legs hurt. He had a terrible time getting to sleep last night. Quite a few verbal tics but not terrible. Haven't seen the head thing. He also said it is hard to think. Putting it all together and worried that he is might have strep. Waiting it out a bit to watch his tics. I want to be able to document any changes if he gets put on abx again.

 

He had blood work done a couple years ago when I found an environmental physician who would work with him. We didnt' get very far with her because I didn't feel comfortable with all of her treatments. But I do have some results from blood work. His ASO was 250. She said that was fine but now I am reading on here that maybe that isn't so great.

 

I have no medical background. All the medical info on her gets so confusing! Our family has a long history with strep. My kids and I get it often. I am sure ds has had it over 5 times at least. My husband is the only one who has never had it.

 

How do I find out more about PANDAS and if it could be the root of my son's tics? He doesn't have OCD that I can tell. He is fine with changes of routine and doesn't have compulsions that have to repeated or anything. It is just the verbal and motor tics.

 

I would appreciate any help you can give me. He is in 5th grade and they have to do a declamation in front of the whole class and possibly the school. THey are rated on how they handle their nervousness. Great! The one thing my little guy can't do well! Also, he was chosen to be in the school play. Wondering how he is going to do on stage with all the excitement! He hasn't questioned it so I am just watching and keeping his teachers informed. More power to him to keep going and be involved. As a mom, though, I want answers and want to make his body the healthiest it can be!

 

Thanks for you listening ears. God bless you all for your time and sharing all the info here.

Hope

[MomWithOCDSon]

I have been mostly a lurker here. I am still struggling for answers and have gotten a ton of great info from everyone. This site is wonderful!

 

Here's a little info about us:

DS started wtih a verbal tic "hmmm hmmmm" when he turned 8. His dad had a pulmonary embolism and was in the hospital for over a week. DS got a lot of attention for it at school from well-meaning teachers and friends but he became anxious about the whole thing. He is our oldest so he understood more about what was happening to daddy than our younger ones.

 

I didn't pay too much attention to the tic, didn't even know it was tic at the time. I just figured it was anxiety due to his dad's situation. It came and went for the rest of spring/ summer. Not a big deal. We went on vacation and I noticed he did it alot! I even tried to bribe him to stop for a short period of time when we were visiting a zoo. I was amazed but he couldn't! That is when I started realizing this was something to be concerned about.

 

2 1/2 years later he still has tics. He has added more like eye blinking, throat clearing, other noises, neck stretching, touching things to his lips and just recently head nodding and shaking. The head thing is very noticeable and we are concerned about the effect at school with peers of course. Also, it is giving him muscle tension and headaches.

 

When the head shaking started he had just gotten sick. Took him for strep culture. Negative. Said it was viral. Waited it out. He got sicker and tics kept increasing. After 3 weeks he was diagnosed with walking pnuemonia. Put on Zithromycin Z-pack. After a few days he felt better and the head shaking started to decrease. Overall, he is much better. Still tics everyday but most are not that noticeable and not interfereing with his general well-being.

 

Well, his younger sister age 6 has been sick. Had her tested the same time as him for strep because she had a rash on her chest. Negative. That was a month ago. Rash came back. Maybe it is a new rash. Looks terrible all over her trunk and down her legs/arms. Not itchy. Doesn't bother her. Tested positive for strep yesterday. Scant results but treating with Amoxycillin. She's actually been on abx for 3 days but rash isn't going away.

 

My son with the tics is saying his stomach hurts and his legs hurt. He had a terrible time getting to sleep last night. Quite a few verbal tics but not terrible. Haven't seen the head thing. He also said it is hard to think. Putting it all together and worried that he is might have strep. Waiting it out a bit to watch his tics. I want to be able to document any changes if he gets put on abx again.

 

He had blood work done a couple years ago when I found an environmental physician who would work with him. We didnt' get very far with her because I didn't feel comfortable with all of her treatments. But I do have some results from blood work. His ASO was 250. She said that was fine but now I am reading on here that maybe that isn't so great.

 

I have no medical background. All the medical info on her gets so confusing! Our family has a long history with strep. My kids and I get it often. I am sure ds has had it over 5 times at least. My husband is the only one who has never had it.

 

How do I find out more about PANDAS and if it could be the root of my son's tics? He doesn't have OCD that I can tell. He is fine with changes of routine and doesn't have compulsions that have to repeated or anything. It is just the verbal and motor tics.

 

I would appreciate any help you can give me. He is in 5th grade and they have to do a declamation in front of the whole class and possibly the school. THey are rated on how they handle their nervousness. Great! The one thing my little guy can't do well! Also, he was chosen to be in the school play. Wondering how he is going to do on stage with all the excitement! He hasn't questioned it so I am just watching and keeping his teachers informed. More power to him to keep going and be involved. As a mom, though, I want answers and want to make his body the healthiest it can be!

 

Thanks for you listening ears. God bless you all for your time and sharing all the info here.

Hope

Hi Hope!

 

Well, if you've been lurking, you've already seen a lot of our stories and you must've recognized the similarities between some stories here and your own. PANDAS seems like a definite possibility for your kids, so persevere! Strep tests can give false negatives. Titer counts reflect recent exposure but not necessarily the actual presence of strep; furthermore, labs' ranges for what is "normal" vary substantially, but the "normal" range quoted by my lab for ASO titers topped out at 170, so at 250, your child's would be above normal, if not excessively high. But perhaps even more importantly, you have a recorded history of symptoms and then relief from symptoms during antibiotics. This is a meaningful pattern that you should call attention to.

 

There are tons of threads here with FAQs, PANDAS basics, links to other PANDAS information, etc. that you could print out and take with you to your next doctors appointment. You might also check the thread regarding doctors familiar with PANDAS in your area, or even consider a phone consultation with one of them if none of them is geographically proximate to you for a face-to-face visit.

 

Good luck to you! And keep reading here; I'm still relatively new to this stuff myself, but I've gotten quite an education in the last few weeks, just by participating here, reading, asking questions, etc.

[sf_mom]

I am curious about your daughter's rash... Does it feel like sandpaper when you rub your hand along the area? Does your Daughter have any swollen lymph nodes in her neck on one side? Did you notice 'white puss' in the back of her throat when they tested her for strep?

[thereishope]

Did they culture those rapid tests? Was his pneumonia strep related? Some forms are caused by strep.

 

As for your daughter, have they ruled out scarlet fever? You can look up pics of a scarlet fever rash online and compare hers. I would call the office and tell them the rash is still bad and you need a different prescription. A lot of times, you can do this through a phone nurse. If they have seen the child once, they will change the script ove rthe phone if the parent explains why they think it is not working.

 

Did you take your son back in for another strep test when you found out strep was in the hosue yesterday? If not,do that and also get anyone else in the family a strep test. As you've probably read, some kids will react to exposure to strep. Even get your husband who never had strep, a rapid and culture. One does not need to have symptoms to actually have strep. Also, adults' rapid can come back false negative, so do insist on a culture as well. My hubby's rapid came back neg, insisted on a culture and that came back +.

 

Good places for PANDAS info is

 

www.pandasnetwork.org

 

PANDAS fact sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

It may also be beneficial to read a thread devoted to examples of OCD. Some kids have OCD tendencies and the parents don't realize that they are exhiiting it.

 

http://www.latitudes.org/forums/index.php?...ic=6153&hl=

 

Finally, you can try giving him Ibuprofen (Advil, Motrin) and see if that helps with his PANDAS symptoms. For some, it works as a band aid for their symptoms. It doesn't solve the problem, but it may help. If it does help him, it would be good for school too.