New-Just Received the diagnosis & worried sick--have questions&#33

[MMWG]

Hi all-

I found this forum in my endless search for help and answers. My 4 yr old was just diagnosed by his pediatrician with PANDAS. I won't go into the whole long story, as I know we all have one. I brought him in for an appt because he had stomach cramps and was acting crazy--very agitated and hyper, and somehow his pedi knew to test him for strep (this is the first time anyone has tested him for that). After a positive strep test, he went on Azythromicin for 5 days. We saw some changes, but they soon waned once he was done with the antibiotics. About a week later, I noticed a little "tic" that had been going on for a few weeks (small mouth noise) suddenly exploded--every few minutes he would do it. I called the pedi back, as this was not a symptom we had talked about when we last saw him. He thought it was very suspicious, and ordered a heavy course of ceph antibiotics for 14 days.

The biggest difference for us so far was a huge increase in fine motor abilities right after starting the antibiotics. Has anyone else experienced this? When he was much younger, he would color a bit and even learned to write "A", but it seemed like one day he just refused to do anything having to do with fine motor skills anymore. Needless to say, he never learned to cut, write, color, etc because he would not try it. But all of a sudden, he was painting, doing dot-to-dot, cutting (his skills are really rough but at least he wants to do it!). It was amazing!

 

I have some questions I am hoping someone can help me with:

 

1) Is it possible that he has been suffering with this for a long time? His behavior over the last 2 yrs has been so challenging--anxiety, emotionality, aggression, defiance, hyperactivity--it never really fit one diagnosis, it was all over the place. Dramatic mood swings. Last February we had his adenoids out and he developed a really rare retropherangeal abcess infection which landed him the hospital for 5 days on iv antibiotics. They told us he had to have had some bacterial infection present before the surgery for it to happen, but he wasn't sick (as far as we knew--no fever, no symptoms). Now I am suspicious he had strep then as well. I know people say that these things come on "suddenly"--but once PANDAS is kicked into motion, without treatment, is it possible he would just keep on a roller coaster of behavioral and emotional symptoms?

 

2) Related to that, we have one week left on our ceph. antibiotic. I haven't seen a huge difference in his behavior, and no difference in his tic. What does this mean? Should I be seeing something? Are we stuck with these intense behaviors? My pediatrician has been very thoughtful so far, and I really appreciated him going right ahead with the second course of antibiotics when I called about the tic. He told me antibiotics are the treatment for PANDAS, and I know from the reading I have done that that is just one school of thought.

 

This early into a diagnosis, is the best thing to do just to complete the antibiotics? Will the tic go away ever? Will the behavior improve? Sorry about all the questions, this is just so very hard on all of us and I need help figuring out what to do!

 

Thank you in advance!

[dcmom]

Sorry you are here, will make this quick as I have to pick kids up at school...

 

Stay on the antibiotics for now. If the zithromax helped- THAT is probably the antibiotic you want to be on. Ask your ped for AT LEAST a 30 day prescription of daily zithromax, if possible, to buy you some time.

 

Tell us where you live- unfortunately only a handful of docs really GET pandas- hopefully you can see one of them.

 

Most of our kids need to stay on some type of antibiotic protocol for quite some time.

 

Hang in there- things will improve.

[thereishope]

Welcome.

 

Some PANDAS kids do develop fine motor skills problems during an exacerbation. Often it is described as a deterioration in handwriting, but since your so was at the age of hand writing yet, one can see how things like drawing, cutiing, etc would be affected.

 

You say he had an infection prior to t and a surgery but no symptoms. A good number of PANDAS kids are asymptomatic when it come sto strep. No classic symptoms. I have found out my 2 non PANDAS kids are also asymptomatic in addition to my PANDAS son.

 

I agree that it seems like Zith may be the antibiotic to go back to. My son has never been on it and I am not familiar with successful dosing. There are others who can guide you and give suggestions.

 

As for other treatments...there are some kids that go onto IVIG and PEX. Some do a streoid burst in hopes of relieving symptoms, but I need to add the clause for others that if your child has tics you should know that some TS patients have adverse effects from steroids. Also, if your child can take Ibuprofen (Advil, Motrin) some find that eases symptoms. It's like a band aid. It doesn't solve the problem, but may give some relief. It may also be a good idea to see an immunologist and get a workup done. Some PANDAS kids are immune deficient.

 

As for a timeline, antibiotics and time are the most important things. Even if you find the right antibiotic for your child it can still take weeks or months to see them returning fully to themself. Ideally, a PANDAS child would stay on a prophylatic antibiotic to try to prevent future strep infection.

 

I would also say get all family members tested for strep. If rapid comes back neg, get it cultured. Kids and adults. Also do simple things like chnage toothbrushes and cups in the bathroom. Fianlly, I also give my child Omega 3's and a vitamin with DHA to aid teh brain in recovery and to keep it "strong" in the venet he shold get sick again. Oh, one more thing, if on long term abs, a probiotic is a good idea. It will help keep the yeast in gut in check.

 

Here are some good topics you can read for more info....

 

Fact sheet

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

 

FAQ

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

[Kayanne]

Yes, while my daughter was in her PANAS episode all of her prolific writing, drawing and crafting stopped.

 

Answer to no. 1---yes! All of those difficult behaviors have been noted by other parents as well---I believe there are a wide array of symptoms of PANDAS, and you will find as you read this forum, lots of "lightbulb moments" on things you didn't realize as being OCD or PANDAS related.

 

Yes, if an infection is still present, then the symptoms can become chronic. Step 1 in fighting this is to aggressively go after the infection. In a lot of our PANDAS kids, this is difficult, because there is also underlying immune deficiencies (antibiotics only slow down the replication of the bacteria so as to give your immune system time to fight it off).

 

Many people don't see a lot of changes with antibiotic treatment unless they are on the full strength for one-two months.

 

Even after an infection is cleared, the symptoms can persist because PANDAS is thought to be a post-infectious autoimmune response. Antibodies that your body creates to fight the infection "get confused" and attack the Basal Ganglia causing inflammaion and/or chaotic neural signaling. These antibodies can take several weeks to receed once the infection is cleared, and then there is still time needed for the brain to heal...so far the research shows that PANDAS doesn't cause permanant damage.

 

Yes absolutely, finish the antibiotic. Specifically which cephalosporin is your son on, what dose, how much does he weigh?

 

It is believed that many antibiotics have anti-inflammatory properties. It has been documented that zithromax has anti-inflammatory and immune modulating (don't understand it, but it causes your body to shift from producing one type of T-cell to a different T-cell--I think!) properties so many kids do see an symptoms get better while taking it.

 

If you saw more improvement on the zithromax, then I would push to have your son put back on that.

 

Tics do seem to be harder to treat than the behavior and OCD associated with this.

 

I'm sorry that you are here, but you found the right place!

 

~Karen

[Not_the_Same]

Hi,

 

I think ,My youngest son 4 yrs old and I, are a bit further along the same road here.

I would have to count the days to be accurate but he started with a vocal tic Nov 15 2009.

started Augmentin Nov 26th, and now off the medicine, making a nice recovery.

I am not saying we are finished, but i am comfortable with the progress and the direction.

 

My 2 cents make sure to get treatment from a specialists in P.A.N.D.A.S..

There is a post somewhere on this forum about how many are starting to treat P.A.N.D.A.S., and i agree with that poster ,I personally would rather deal with someone who has done the research.

I am learning the recovery is slow, and feels back and fourth for a while.

I also remember not feeling too thrilled when his prescription was ending (because on this forum i noticed many were on longer), but followed the doctors orders.From reading your post, i understand your child was on medicine for even less time than mine.

 

On my last visit to DR. K concerning my other son13 just this last monday, My pandas 4yr old came along and i managed to slip in a few questions.

"How long until the remaining symptoms completely stop" , he said possibly 4-6 months.

I also slipped in a comment that "i was not against another course of Augmentin " which he (shook his head) did not agree with or think necessary(fine with me).

 

 

 

I hope your son gets better soon.

 

-John

[MMWG]

Hi all-

I found this forum in my endless search for help and answers. My 4 yr old was just diagnosed by his pediatrician with PANDAS. I won't go into the whole long story, as I know we all have one. I brought him in for an appt because he had stomach cramps and was acting crazy--very agitated and hyper, and somehow his pedi knew to test him for strep (this is the first time anyone has tested him for that). After a positive strep test, he went on Azythromicin for 5 days. We saw some changes, but they soon waned once he was done with the antibiotics. About a week later, I noticed a little "tic" that had been going on for a few weeks (small mouth noise) suddenly exploded--every few minutes he would do it. I called the pedi back, as this was not a symptom we had talked about when we last saw him. He thought it was very suspicious, and ordered a heavy course of ceph antibiotics for 14 days.

The biggest difference for us so far was a huge increase in fine motor abilities right after starting the antibiotics. Has anyone else experienced this? When he was much younger, he would color a bit and even learned to write "A", but it seemed like one day he just refused to do anything having to do with fine motor skills anymore. Needless to say, he never learned to cut, write, color, etc because he would not try it. But all of a sudden, he was painting, doing dot-to-dot, cutting (his skills are really rough but at least he wants to do it!). It was amazing!

 

I have some questions I am hoping someone can help me with:

 

1) Is it possible that he has been suffering with this for a long time? His behavior over the last 2 yrs has been so challenging--anxiety, emotionality, aggression, defiance, hyperactivity--it never really fit one diagnosis, it was all over the place. Dramatic mood swings. Last February we had his adenoids out and he developed a really rare retropherangeal abcess infection which landed him the hospital for 5 days on iv antibiotics. They told us he had to have had some bacterial infection present before the surgery for it to happen, but he wasn't sick (as far as we knew--no fever, no symptoms). Now I am suspicious he had strep then as well. I know people say that these things come on "suddenly"--but once PANDAS is kicked into motion, without treatment, is it possible he would just keep on a roller coaster of behavioral and emotional symptoms?

 

2) Related to that, we have one week left on our ceph. antibiotic. I haven't seen a huge difference in his behavior, and no difference in his tic. What does this mean? Should I be seeing something? Are we stuck with these intense behaviors? My pediatrician has been very thoughtful so far, and I really appreciated him going right ahead with the second course of antibiotics when I called about the tic. He told me antibiotics are the treatment for PANDAS, and I know from the reading I have done that that is just one school of thought.

 

This early into a diagnosis, is the best thing to do just to complete the antibiotics? Will the tic go away ever? Will the behavior improve? Sorry about all the questions, this is just so very hard on all of us and I need help figuring out what to do!

 

Thank you in advance!

[matis_mom]

Hi all-

I found this forum in my endless search for help and answers. My 4 yr old was just diagnosed by his pediatrician with PANDAS. I won't go into the whole long story, as I know we all have one. I brought him in for an appt because he had stomach cramps and was acting crazy--very agitated and hyper, and somehow his pedi knew to test him for strep (this is the first time anyone has tested him for that). After a positive strep test, he went on Azythromicin for 5 days. We saw some changes, but they soon waned once he was done with the antibiotics. About a week later, I noticed a little "tic" that had been going on for a few weeks (small mouth noise) suddenly exploded--every few minutes he would do it. I called the pedi back, as this was not a symptom we had talked about when we last saw him. He thought it was very suspicious, and ordered a heavy course of ceph antibiotics for 14 days.

The biggest difference for us so far was a huge increase in fine motor abilities right after starting the antibiotics. Has anyone else experienced this? When he was much younger, he would color a bit and even learned to write "A", but it seemed like one day he just refused to do anything having to do with fine motor skills anymore. Needless to say, he never learned to cut, write, color, etc because he would not try it. But all of a sudden, he was painting, doing dot-to-dot, cutting (his skills are really rough but at least he wants to do it!). It was amazing!

 

I have some questions I am hoping someone can help me with:

 

1) Is it possible that he has been suffering with this for a long time? His behavior over the last 2 yrs has been so challenging--anxiety, emotionality, aggression, defiance, hyperactivity--it never really fit one diagnosis, it was all over the place. Dramatic mood swings. Last February we had his adenoids out and he developed a really rare retropherangeal abcess infection which landed him the hospital for 5 days on iv antibiotics. They told us he had to have had some bacterial infection present before the surgery for it to happen, but he wasn't sick (as far as we knew--no fever, no symptoms). Now I am suspicious he had strep then as well. I know people say that these things come on "suddenly"--but once PANDAS is kicked into motion, without treatment, is it possible he would just keep on a roller coaster of behavioral and emotional symptoms?

 

2) Related to that, we have one week left on our ceph. antibiotic. I haven't seen a huge difference in his behavior, and no difference in his tic. What does this mean? Should I be seeing something? Are we stuck with these intense behaviors? My pediatrician has been very thoughtful so far, and I really appreciated him going right ahead with the second course of antibiotics when I called about the tic. He told me antibiotics are the treatment for PANDAS, and I know from the reading I have done that that is just one school of thought.

 

This early into a diagnosis, is the best thing to do just to complete the antibiotics? Will the tic go away ever? Will the behavior improve? Sorry about all the questions, this is just so very hard on all of us and I need help figuring out what to do!

 

Thank you in advance!

Hi there,

Welcome to this forum! Just a couple of thoughts...

Did you see any improvement in behaviors while he was on IV abxs?

About the current antibiotics, be patient, it takes a while. Also, it might be that the dose is not strong enough, or is not the right antibiotic. Unfortunately, it's trial an error, and you really can't tell in a few days (although some parents do see improvement right away, it's not everybody's case, especially if the infection has been there for a while)

No matter what, your son will need to stay on antibiotics, and then maybe seek some additional treatment like steroids, IVIG, or plasma exchange.

So for the time being, be very, very thankful that your pediatrician caught it and is willing to prescribe antibiotics. Give it some time and see how it goes, and then if you don't see significant improvement you can consult a PANDAS expert.

Best to you on this journey! And be reassured that your son WILL GET BETTER!

[MMWG]

Thanks for all the replies so far. In response to some of the questions, we are in Cincinnati, I didn't see any doctors close to us on the list here.

 

Regarding the question about whether he had change in his behavior when he was on IV antiniotics from his abcess infection--to be honest it was a bit of a blur--he was so sick. I do remember that he suddenly became potty trained (after 2 yrs of knock down battles about the subject) right after we got him home from the hospital--like he suddenly was happy to do it. Other than that, I can't remember.

 

This is his first strep diagnosis, and we were on Azythromicin (it says 200/5ml) for 5 days (1 tsp/day). Then, when I called back to report that the slight tic he had developed was becoming much more frequent once he finished the antibiotics, we were prescribed Cephalexin (250/5ml), two teaspoons two times a day for 14 days. We are in the middle of that now (he is 4 yrs old, about 40 lbs).

 

I don't think he responded much better to the Azythromicin vs. Cephalaxin, we noticed an inital difference in behavior on the Azyhromicin but i think it was because his stomach felt much better. Fine motor improved on both, even more so on the Cephalaxin.

 

So much to think about. I am driving myself crazy about this. I was "teacher's helper" today at preschool and it is so hard to see him struggling with his behavior, writing...with all these other little kids just sitting there without a care in the world. I want so badly for him to feel better, to be happy, to not have to struggle so much all the time.

 

I truly hope we are on the right path here. I hope our doctor will continue to help us and know the right next steps. Thanks you all for taking the time to respond.

[nevergiveup]

Hi, its good your ped knows to look for the strep connection, because of many parents fighting to get the word out over the last 5 yrs ped's are becoming more familiar. Cinci not the best place for this diagnosis, and I would go see a specialist like Dr T or Dr L ASAP, the earlier you resolve this the better. I wasted my time for 4 years with CCHMC and the tic dept to just watch my child denied trtmt and I was basically told by Don Gilbert that she would have OCD tics and it would get worse by puberty. Plus they also told my kid to come back when the kids start to pick on her. Great thing to say to a little girl. I wish I had the guts and instinct to search out the experts at that time but Children's is so well respected in our community I didn't. This disease has become a political battle and don't let your kid get in the middle. I would get as many tests done in cvg as possible, and then go fully armed with the data to the specialists. After the basterial infection and IV abx I think it is prudent to have a full work up of his immune markers by an immunologist (not at childrens, try Ghory or Newman.). Also see if you can get an mri from childrens to rule out other issues just for now. Run a lymes test too if you can get a doc to do it. Then take this data to Dr T and see what's next. Also get the cunningham test done while in current exaserbation. However all of this is contigent on your ped continuing the abx until all this is done. If they won't then see Dr T immediately to have this extended while other tests are being conpleted. High dose abx not average dose is critical. Please keep us posted as to who helps in cvg. If you feel inclined I would post your ped's name on our forum doc's list. At least they recognize the illness, more than I can say about anyone I have encountered in cvg. I wish you and your family the best outcome.

[MMWG]

Wow. Thank you for all of the information--I have to say that I am now completely and totally terrified based on what you have said.

 

Hi, its good your ped knows to look for the strep connection, because of many parents fighting to get the word out over the last 5 yrs ped's are becoming more familiar. Cinci not the best place for this diagnosis, and I would go see a specialist like Dr T or Dr L ASAP, the earlier you resolve this the better. I wasted my time for 4 years with CCHMC and the tic dept to just watch my child denied trtmt and I was basically told by Don Gilbert that she would have OCD tics and it would get worse by puberty. Plus they also told my kid to come back when the kids start to pick on her. Great thing to say to a little girl. I wish I had the guts and instinct to search out the experts at that time but Children's is so well respected in our community I didn't. This disease has become a political battle and don't let your kid get in the middle. I would get as many tests done in cvg as possible, and then go fully armed with the data to the specialists. After the basterial infection and IV abx I think it is prudent to have a full work up of his immune markers by an immunologist (not at childrens, try Ghory or Newman.). Also see if you can get an mri from childrens to rule out other issues just for now. Run a lymes test too if you can get a doc to do it. Then take this data to Dr T and see what's next. Also get the cunningham test done while in current exaserbation. However all of this is contigent on your ped continuing the abx until all this is done. If they won't then see Dr T immediately to have this extended while other tests are being conpleted. High dose abx not average dose is critical. Please keep us posted as to who helps in cvg. If you feel inclined I would post your ped's name on our forum doc's list. At least they recognize the illness, more than I can say about anyone I have encountered in cvg. I wish you and your family the best outcome.

[thereishope]

nevergiveup,

 

Would you recommend Dr K since he is only about 4 1/2 hours away?

 

MMWG,

 

I'm live in Cinci too. Anderson Township to more exact. I agree there really isn't good docs here for PANDAS. Many docs here refuse to give prophylactic abs. You will probably have to travel. My son is also an ex-patient of Gilbert. Sooner or later you will probably be refered to him. I strongly am against it. I did come across a DAN in Cinci that said she would treat my son with abs, but they don't take insurance and she said it's a few months to see her. But she did personally return my call when I asked qyestions about her knowledge of PANDAS.

 

As for Cinci Children's Hopsital. Gilbert also claimed to have asked Geller if amox would kill strep or if there's a failure rate. Geller said that amox would definitely kill the strep! Anyone who reads this forum knows that is wrong. I just can't really trust that hospital.

 

My son also saw an ENT there for his t and a. he said he had PANDAS patients before. I can look up the name, if interested. It's too early for me to remember it. Anyway, he was very nice, gave prophylactic abs upon request until t and a surgery and performed the t and a.

[thereishope]

Dr Rutter. That's him name. But, let me add, he would not continue proph abs post t and a. But I still got 2-3 months out of him.

[thereishope]

.

[MMWG]

Thanks. We went to an ENT at Children's for my son's adnoidectomy last year--that is when he ended up with the retropheryngeal abscess. He was on amoxicylin after the surgery, and got horribly ill within 48 hrs while on the antibiotic--we ended up in the ER at Children's and were sent directly downtown to the ENT specialists. Dr. Shott was the ENT who recognized his rare infection and admitted him. She watched him like a hawk, and was adamant about keeping him on the IV antibiotics. No one ever really explained to us what had led to the infection, other than saying "he must have had something present prior to the surgery"...but once he was feeling better, we all assumed that was the end of it. I was impressed with them for that, but appreciate the advice that they aren't specialists on PANDAS.

 

I think we will just take it one step at a time. I am getting so overwhelmed by all of the information (here and elsewhere). We will follow up with his pediatrician after we finish our antibiotics, and take it from there. I'm glad to know this resource is here.

[thereishope]

Did Dr Schott do a study on PANDAS? I remember Rutter referring to her. If you want to message me your ped's info, I will be happy to mail them the info I will be sending to other local docs. Perhaps yours is even already on my list if you live in Cinci. You don't have to let me know if you don't want to, but the offer is there if you want.