new here...need help..

[loandmo]

About 2 weeks ago I started noticing my 4 1/2 year old son was doing some blinking. Nothing terrible just noticed by me and my husband. About 5 days later my daughter came down with what we thought was hand foot and mouth...she was sick for a few days. Three days after she was sick my son came home from school complaining of a headache and running a fever. The fever spiked and he had an awful awful headache. His fever wouldn't go under 103.2 with both tylenol and ibuprofen. The following day he had a fever...around 101 and then the next day it fell off. His class was exposed to hand foot and mouth and i thought "well...that is where it came from". So he was doing some blinking and that was about it and then yesterday his blinking was becoming more severe and seemed to be more frequent with a bit of a head turn. We called his ped and he said bring him in for a strep test. It was negative but he put him on 500mg of amoxicillin 3 times a day for 10 days. After one day his tic doesn't seema as severe...but it has moved from his left side of his head and to the right...tonight before bed it picked up just a little. The only other symptom I saw was yesterday he was sad. He is not showing any OCD issues yet. It is mainly the motor tic. Does this sound like PANDAS? Or is it maybe coinciding with a transient tic? Since we caught it early will his symptoms be easier to treat or should I expect things to get worse in the upcoming weeks. I feel so bad I can't help him. We are going to do BW once we are through with the ABX. But I am going crazy...

[3boysmom]

Ok, since you are new, I don't want to throw too much at you at once. The NIMH changed the name PANDAS to PANS and mainly because these symptoms and problems come from other illness besides strep. One illness that a lot of us battle and seems to create tics is Coxsackie Virus which is Hand, Foot, and Mouth. If he had strep and coxsackies at the same time then this can create problems. Even if he had Coxsackie without strep, it could cause problems. Most doctors do not think that the Coxsackie virus can be treated with medicine, however many other doctors have treated our kids with Valtrex or Acyclovir with great success. Even though his strep test came back negative, strep could be hiding out else were besides his throat. Did they do a rapid swab or send in a culture? Many of our kids test negative. You should start with Strep ASO and Anti D-Nase testing as well as tests for Coxsackie Virus A & B. others will chime in with more info. Needs to be treated as soon as you can. Prayers to you and search the topic area for Coxsackie.

Edited July 28, 2013 by 3boysmom

[3boysmom]

From Dr. T.

 

http://www.ncbi.nlm.nih.gov/pubmed/18608177

 

"So the combination of Coxsackie and strep may be particularly bad .

 

I have to thank Madeline Cunningham for pointing out the Coxsackie-Strep connection

 

High dose Valtrex does seem to help Coxsackie. It is not an "official treatment" (you will read there is no treatment for Coxsackie in mainstream textbooks) but many report it does work. It may do so by inducing interferon.

 

Dr. T"

Edited July 28, 2013 by 3boysmom

[T_Anna]

Some have found success with L-Lysine too.

 

And yes, being aware early should definitely help in treating your child.

 

T.Anna

[JoyBop]

It's amazing that you caught on so quickly. It took many of us months or years so you are well ahead if the game. My advice would be to get the dr on board with the connection between tics and the infection and see if they would be willing to keep you on abx until the symptoms are down and titres are down. If this is PANDAS you may find that these infections don't just go away as expected with children with normal healthy immune systems. If you dr isn't on board you may seek out a PANDAS friendly doctor to proceed

 

It's a wise idea to keep a daily journal so you can track and follow changes and developments. Often its in hindsight that we make connections but if its all documented well you have a lot more creditability with physicians as well. I keep a log on nothing my kids on a gmail doc. I have 3 doctors that log on often to keep up on their progress.

 

Good luck!

[loandmo]

Thanks so much. Today has been challenging. He was afraid to go to the grocery store and did a lot of crying and has developed this weird audible breathing tic. I called his ped and we are going in tomorrow to be seen and they think it is best if we make an appointment with a neurologist. It may take time to be seen so they think it is best to have an appointment just in case. I am so sick to my stomach. I feel like this connection we had is missing. Maybe it is just me being hyper sensitive but I feel like I am falling apart. Thanks for all of your help.

[3boysmom]

Put your name on the wait list for a PANDAS doctor, because if your neuro is not truly understanding or non believing in PANDAS then you will have waisted precious time to then be starting over to look for help. Trust me, most of us have gone that route and then they will send you to a psychologist and push for SSRI's! Save you're money and time. Call the office of the neuro and ask if they treat PANDAS or PANS. This is a complicated illness. Maybe get a phone consult with Dr. T. Did your child happen to recently get any vaccinations?

[3boysmom]

Dr. L is a. PANDAS neuro and so is Dr. T. Post where you live and others should chime in with doctors they see.

[Dedee]

So it does seem that he is developing some type of OCD or at least Anxiety Disorder at this point. Did he say why he didn't want to go to the store? You have gotten good advice from the other posts. I would encourage you to make an appointment with a PANS specialist as soon as possible. You need to get lab work to check strep titers, Mycoplasma titers and check for other viruses. Unless the Neurologist you are seeing specializes in PANS then you are most likely wasting your time. You can get some good information from the pandasnetwork.org website. Also, you might try some ibuprofen to help with symptoms until you can get in to see a specialist.

 

Dedee

[mama2alex]

If he is exhibiting PANS/PANDAS symptoms, you need to have him evaluated for Lyme Disease and co-infections as well. Any good Lyme-literate doctor who treats children will be familiar with the symptoms you're describing. And they can/will check for all possible infections - strep, viruses, mycoplasma, etc - not just Lyme. If you post what state you're in, someone here will probably be able to give you a recommendation. Many families here are dealing with Lyme.

 

As for the feeling that you're falling apart, I remember it well. It is awful to see this happen to your child. I remember losing my appetite at first. The only other time that happened was when my mother was dying. It's that difficult. Hang in there. It takes time, but you will get help.