UPDATE....

[myrose]

I can't say the ibuprofen helped the tics but we have the same effect with it today as I did the day we were at Wet/Wild.

What I mean is that she still ticced that day but there was an overall calm about her. She always disagrees and finds it hard to listen or believe that she is wrong about something. The loud talking and non-stop talking and interupting has always been there as well.

I swear sometimes she has ODD.

Anyways again this time the ibuprofen makes her so calm in a way I find hard to explain. She is not dopey or sleepy but just a normal calm girl. Wish I could explain it more.

I will continue with the ibuprofen along with the Zith over the next two days and see if it lasts or even gets even better.

Seems interesting to me but yet again something I do not understand. I really do not suspect her to be Pandas but this now again along with the CONSTANT urine and confessing has AGAIN made me re-thing everything.

This whole puzzle seems to never end for me......I am so truly tired of it all.

I wish there was a blood test fot TS, tics and Pandas that was a definite and something that all doctors ageed upon.

 

Why don't you try the ibuprofen? Couldn't hurt.

My daughter is turning 7 and 48 pounds and they okayed the whole tab. I think its 500mg but I could be wrong. Sorry to say that I just do not feel the energy to get up and look.

I hope things get better for your son quick. The potential triggers are becoming overwhleming for me.

And now this slow down all of a sudden. Too many people at the house, too many things we did to excite or stress. The chlorine from all the water parks, the head injury, the the molars, the teeth coming out, the junk diet!!!!!!!!!!!

I can't keep it straight any longer

Please keep me updated on your appointment with Latimer...maybe it can shed some light over on my end as well. I will go where ever she is as well as Dr. Sims......if only I can get more info and positive feedback.

Gooodnight

[myrose]

Lurker.....

 

I thought of this as well too. The puzzle is that it started before they arrived and was already progressing. Lastly we had the same family members last year and it did not effect her. I know things could have been different for this visit so I can agree with you but I am just puzzled and sick and tired of playing the guessing game all over again. I guess I just wish I knew what it was for sure. There are just too many possible triggers with this round and to be honest I am so tired inside my head if you know what I mean.

Its still not as bad as it was when we first resorted to topamax so I should be thanking GOD for that but its still hard for her and that is when it gets to me. I hate feeling helpless!

Thanks for your thoughts and reply...much appreciated. I need all the help I can get

 

Wendy,

 

The first thing that comes to mind is that you had a house full of guests, including triplets, that are gone now. Things have settled down, and that is my best guess as to why her tics are milder now.

 

I'm sorry to mention the Topamax again on this board, as I know people prefer natural treatments, but like I said yesterday, you only increased it three days ago. I don't think you gave it time. It worked miraculously before. It was SUPPOSED to take weeks to take effect, but you saw results right away. Doesn't mean it will work that quickly this time. Remember, it took weeks for the Topamax to wear off and the tics to resurface.

[Chemar]

Went to the clinic today. ......

 

She did give us an antibiotic (Zith) for 3 days- 250mg each.

She did this in case things get worse and also because apparently the other doctor we saw there at another time told her that antibiotics help my daughter.

.......I filled the script immediately afterwards and gave it to her. I also gave her one tablet of ibuprofen.

 

Now here we are about 10 hours later and she has improved significantly! I have no idea what is going on now......Even the frequent need to urinate (in which I forgot to mention returned in FULL force) has calmed a bit.

 

I cannot possibly think that the antibiotic could help or work so quickly so I am just dizzy inside my head right now!

 

I did notice when we were at wet/wild and the jaw clench started, that after I gave her the ibuprofen it didn't take the clench away but she was really quiet and calm afterwards. That was the first time I ever gave her an ibuprofen and I forgot about the effects I had noticed. She was even quiet, and I can tell you that my daughter NEVER stops talking.

 

So could be the ibuprofen, the Zith, things just calming????????????? ......

 

 

 

If anyone has any idea on what happened today after the Zith and ibuprofen I would really love the insight.

 

 

Wendy....I quoted some of the lines from your post that stood out to me

 

Many of the PANDAS parents see this too.....that azith and ibuprofen very rapidly calm things when there has been strep flareup OR strep exposure (ie around someone with strep)

 

I am not saying your dd has PANDAS, just mentioning this correlation in case there is a connection there....you mentioned the urinary frequency too...again a PANDAS symptom of note!

 

*if* there is an inflammatory trigger here ,whether it is related to strep or maybe mono/epstein barr?? (you mentioned swollen glands) or come other infectious agent, then the calming after ibuprofen and antibiotic may be becasue the microbe is being subdued and the inflammation reduced??

 

I do agree with lurker also re that sometimes meds like topamax take a few days to "kick in" so not sure if she just needed it for longer

 

praying that things just stay stabilized now and also that you will be able to get some rest too

[myrose]

Chemar, thanks for all the advice and prayers.

Can I ask if your son ever had the frequent need to urinate thing? Also did he ever confess meaningless weird things to you?

 

Example would be that while at Target we walked by the bathing suit rack and my daughter rubbed up against them as we squeezed inbetween them and she stated exactly this " I think I just touched the crotch of that bathing suit"

 

This puzzles and alarms me. Why would she say a thing like that, I am thinking.

 

I know everyone is different but I ask you because you have a diagnosis and of course we have none.

 

And yes I agree with you and all on the topamax but my goal was to get off. I want to beat this thing while their is still some fight left in me.

If and when she loses control as she did in the beginning I am afraid I will then have to resort to full dose (25mg) topamax and stick with it. Maybe I felt we were at that point and about to cave but after todays improvement I want to see what happens over the next few days.

Thanks again Cheri

[lss]

Chemar, thanks for all the advice and prayers.

Can I ask if your son ever had the frequent need to urinate thing? Also did he ever confess meaningless weird things to you?

 

Example would be that while at Target we walked by the bathing suit rack and my daughter rubbed up against them as we squeezed inbetween them and she stated exactly this " I think I just touched the crotch of that bathing suit"

 

This puzzles and alarms me. Why would she say a thing like that, I am thinking.

 

I know everyone is different but I ask you because you have a diagnosis and of course we have none.

 

And yes I agree with you and all on the topamax but my goal was to get off. I want to beat this thing while their is still some fight left in me.

If and when she loses control as she did in the beginning I am afraid I will then have to resort to full dose (25mg) topamax and stick with it. Maybe I felt we were at that point and about to cave but after todays improvement I want to see what happens over the next few days.

Thanks again Cheri

 

Wendy,

 

Sorry to hear about your daughter. The confessing and the urination are symptoms of Pandas as well as the tics. Since you are in Florida, why don't you see Dr. Murphy. She understands Pandas. As for a test, there actually is a test to see if its possibly Pandas. In Florida, not far from you is Creations Own in Melbourne. They actually do have a test for Pandas. There is another Dr. in OK who does a blood serum test, but other doctors won't really acknowledge this, since they say its only research.

I beleive Dr. Murphy is in Tampa. Also, check out this website: pandasnetwork.org

 

Linda

[Chemar]

myrose

yes, my son did the "confession" thing but only for a few weeks after he was released from hospital when he had the psychotic episode, which we now know was caused by the Haldol that he had started a month before. He literally told me everything and yes the "I touched my face, I rubbed my nose, I touched that thing etc"

 

I just assumed it was a kind of post traumatic shock thing, but in retrospect, as they pumped him full of haldol and luvox in the hospital it could have been more psychosis

 

my son has been through frequent urination phases, including bedwetting, but only when he was younger

 

Yet, when I read on the PANDAS board I see the "confession" thing mentioned often, along with the frequent need to pee etc and I still am left to wonder if maybe when we took him to Dr Murphy to check for PANDAS after he was hospitalized...maybe they missed something? They assured me he was -ve but so much of his history, including the dramatic onset of tics/OCD just "fit"

 

we do have the family history of TS on my husband's side...but then again my husband has recalled serious scarlet fever(strep) when he was around 5yo......................

 

anyways, I guess what I am saying is that even with a clear diagnosis, I still feel many factors can interplay to bring about waxing and waning and with the symptoms your little one is showing, well it cant be a bad idea to rule out a microbial trigger

[colleenrn]

Hi MyRose,

The quick response to Zithromax, along with the confessings and frequent urination, are highly suspicious of PANDAS. She could have strep or been exposed to strep. Did they do a throat culture? You mentioned they said something in her swollen in her throat- they probably said swollen lymph nodes?- indicative of strep. Just thoughts in trying to help sort out the puzzle. IF she is doing better on 3 days of Zithromax, you may want to try to get at least another week so she gets 10 days of it. Three days would not be enough to fully erradicate strep.

Good luck!

Colleen

[myrose]

In regards to Dr. Murphy....we tried to get an appointment last year but I was told she was moving and no longer seeing patients (maybe new ones?)

Then our neuro's nurse practioner mentioned she could possibly get us into a pandas study she was doing but that ended up going no where.

I also understand that she prescribes drugs. Obviously I am trying to get away from the drugs and of course we are already back on topamax....so it became a dead end for me at the time.

 

Today was another great day. I did not see a tic! This is weird. I am in a whirlwind of course. First its SO hard to figure out the triggers (too many possibilities) and now I cannot figure out what hepled!!! UGH!!!!!!!!!!!!!!!!!!!!!!!!!!

It could be that the family has left, the topamax is kicking in, the diet has quieted down, the Zith, the molar is easing up, the advil, GOSH! I just give up.

I went down to 15 mg lastnight on the topamax and have stayed there. If we can remain this way on the 15mg well than I am afraid we are going to stick with it until I can find another option that helps as much (if of course it is the topamax)

 

My plan now if things remain this way is to do the cunningham blood test. Just to confirm she is not possibly Pandas. This would make it easier in deciding my next steps and ultimately finding someone who can help. Just have to read more on it because if the best time to do it was when she was bad....its already passed so I am not so sure if it would show anything. Have to research it.

 

For now I will continue the 15mg and continue our normal diet now that the compnay has left.

If after the Zith has stopped and she gets bad than I will suspect something with the Zith and that it helped calm everything.

 

I know someone mentioned about the Zith not being enough but I can not get anymore...I already tried!

I wish someone would just listen for once. I mean they feel (her neuro) its okay for her to take Topamax long term but refuse to do a trial of Zith to see if it helped and help point us in the right direction! This whole thing can really turn a normal person into a crazy one!

 

I wish everyone well and hope that everyone has a new light around the corner. I am taking a deep breath tonight and thanking God we have got things somehow back to normal. I was so scared that I just was not strong enough to watch it continue to get worse for her.

 

I just can not make heads or tails about this all of a sudden turn around!!! also am scared it will be short lived.

I will keep posting updates, please pray for us.....I will and always do for everyone here.