pandas or Ts?

[chap]

Hi all

 

I Was hoping you could help me. I am a mother to a seven year old in New Zealand. At four years old she was diagnosed with Tourettes, and has chronic vocal tics. Her father has some very slight tics (unnoticeable).

After doing some research on the internet, including this site, I asked our doctors etc about PANDA's but NONE of them had even heard of it.

Last week after 25 days of waxing I convinced my GP to try my daughter on Penicillin 125mg and take a strep swab. The swab has come back negitive and the antibiotics are NOT working (although we have about 3 more days until the course is finished).

My question is, what is the difference between pandas and TS? Are they completely different syndromes or is pandas an exacerbation occuring in kids who already have underlying tics? also, did we try her on the right strength of antibiotics? I guess I am still hopeful that we can make a PANDA's diagnosis, as it seems more 'treatable' then TS.......

I would appreciate any feedack you can give

 

thanks

chap

[greeneyes48072]

There a lot more symptoms that go along with the tics if it is PANDAS. Separation anxietry, frequent urination, decreased quality in handwriting due to short term memory loss, most have problems falling asleep at night (couple hours worth), OCD behavior, enlarged pupils and others that I'm sure I've left out. The mechanism behind TS and PANDAS is different, but they effect the same part of the brain (basil ganglia) and that is why they look similar, with similar symptoms. In Pandas there is damage to the brain after an infection that causes inflamation, in TS I believe (not sure since we're PANDAS) it has to do with a malfunction related to seratonin. If you don't have any of the symptoms to go along with it, it may be TS. Something that I have seen with our son is that traditional TS meds make him worse, and then something that would normally make someone with TS worse (steroids) actually caused a temporary improvement...I'm sure some of the other parents on here will add a lot more for you...

[chap]

thanks so much for making things a bit clearer greeneyes. Im pretty sure we are dealing with TS. Still, amazing that none of the NZ Health professionals I spoke with knew anything about PANDA's.....

[chap]

hiya

compelled to post, as Ive just spent half an hour alternatley conjoling/threatening my child trying to get her to take her third to last dose of penicillin!!!! Im ready to abandon the antibiotics due to all the dramas!

Im always amazed reading through these posts, and the ones on the Tourettes site, that so many mothers manage to have their children on MULTIPLE vitamins/meds.....its a battle for me to get anything down my girl!! You are amazing!LOL

I was wondering if the Penicillin (Phenoxymethyl 125mg- 5mls two times a day) was to work how long would it take to see a reduction in tics....there was definantly no change within 48 hours but now that we are several days down the track the tics seem less frequent, although still hanging about!

The strep test was negitive but when I checked with the nurse they said it was only cultured for 48hrs, and her brothers and I have had a (skin) strep infection recently.

She is not experiencing all the other associated symptoms that greeneyes talked of, but she certainly has seperation anxiety.... so I will try and finish the course of antibiotics.

Does the fact that her father have some minor tics mean that it is less likely to be pandas?

Thanks!

[ShaesMom]

CHAP,

 

I don't have much experience with the Tics, my dd7 never had them. But, we have definitely had the struggle with getting her to the meds. We have spent over two hours before on many occasions, alternating parents in an effort to keep our stress level down, just to get her to take a teaspoon of medicine. We have even tried forcing it down her before. Of course, none it works. We even have literally thrown away her Nintendo DS before. LOL I can laugh about it today but I may be facing the same defiance tomorrow.

 

Anyway, I believe it is all part of the PANDAS. She is much better about taking her meds now that her symptoms are greatly reduced and somewhat under control. We still have several dramas a day although they are much shorted in length. I always remind her afterwards that her behavior is caused by the PANDAS and it is not her making the bad behavior choices.

 

Give the meds time and you will see an improvement.

 

sam

[bmom]

I just wanted you to know that I feel your struggle with this question as I struggle with the difference as well. My son started with just the tics, but progressed into separation and urination issues after awhile. His dad also has minor tics. I dont know the answer to your question, but I am not sure I would rule out PANDAS based on the dad's tics and tics only. It could be that your daughter could have a biological tendency towards tics and the PANDAS brought it out which I believe was my sons situation although I am still not 100% sure on that.

[Chemar]

in TS I believe (not sure since we're PANDAS) it has to do with a malfunction related to seratonin.

 

just wanted to mention that although serotonin deficiency often also occurs with TS, yet it is primarily a syndrome where hyper-reactivity to dopamine occurs.

[P_Mom]

Just a note about getting your kids to take meds............I don't know how old your child is, but, when my son was only 4 and needed to go on prophylactic antibiotics, I had the same problem getting him to take the liquid Penicillin. Then I figured, heck, I 'll give the pills a try.....assuming before he couldn't take them because he was only 4. Well, down the hatch the first try..no problem. Now, taking the pills (which are small) are no problem for us, and the pills are way more convenient than the liquid. Give it a try ......it may work.

[Lisa1971]

From all of the research I have done, one of the distinguishing factors of PANDAS is a "sudden onset" of tics when a strep infection is involved...it was what caused my psychologist to unequivocally rule out OCD, ADD, and Tourettes, with my son...as HE could tell her the exact day they began...she said, disorders like ODC and Tourettes develop gradually over time and the kids are normally not "aware" of when then started...

 

It took 6 weeks on the antibiotics for the tics to completely disappear. and during that time it was a saw-toothed recovery, and then they were just gone...

 

Hope this helps...and good luck...

--Lisa

[dcmom]

Just to agree with Lisa:

 

We were seeing a great child psychologist who specializes in anxiety, ocd, etc- although she did not specialize in pandas. She was in complete agreement that there is a huge difference in the typical ocd she treats, and pandas ocd. With my daughter it came on overnight, therapy was only slightly helpful, obsessions/ behavoirs seemed to change between sessions, and she made a complete turnaround after a month of antibiotics. The psychologist was a HUGE help to me, but really felt we needed to push the doctors on a medical approach. (to which I agree...)

 

I do think, however, that it is possible for untreated pandas to manifest as permanent ocd at some point. I hope that with treatment of antibiotics, etc we can prevent that...

[Chemar]

From all of the research I have done, one of the distinguishing factors of PANDAS is a "sudden onset" of tics when a strep infection is involved...it was what caused my psychologist to unequivocally rule out OCD, ADD, and Tourettes, with my son...as HE could tell her the exact day they began...she said, disorders like ODC and Tourettes develop gradually over time and the kids are normally not "aware" of when then started...

 

 

Hope this helps...and good luck...

--Lisa

 

this is why we originally took my son to Shands/Dr Murphy in 2000 as just after his 10th birthday in dec 1999 he came home from playing with friends and it was like anew kid had walked in...he started exhibiting phobic phases of OCD and depression plus monumental tics!

 

however, all testing done at Shands indicated no strep connection for him, he has never even had strep throat to the best of our knowledge

 

he did have tics like eye rolling and blinking and squeaking from around 3yo tho (we didnt realize they were tics then) and his behavior/moods were always very different from his even keeled brother (who has had strep throat), but again we just attributed it to personality back then. He was dx with TS/OCDand that was when we realized the eccentric sounds and movements made by my husband and his own father were likely TS too

 

however, my husband has faint recollection of scarlett fever when around 5yo and being dunked in ice by his grandma to bring raging fever down

Noliving relatives anymore for me to check on this but it does seem with hubby a strep conection may exist

[colleenrn]

Chap,

I wanted to comment on the penicillin dose. How much does your child weigh? The penicillin dose your child is taking is a very low dose. Penicillin is not always the best choice for strep. Can you get them to switch it something like Keflex or Zithromax? It is a red flag that your other children recently had strep skin infections, which are aslo caused by strep A.,

 

Colleen

[michele]

What you described is right where we are now. If you don't get the treatment the PANDAS OCD becomes a daily obsessive compulsive disorder. We are also working with a therapist and psychiatrist but it is really hard to reverse these compulsive urges in a young kid. We are even using meds and it is not really helping that much. Antibioics stopped making a difference for us also. We are at a point that bigger guns must be used like steroids or IVIG. My son is becoming psychologically ill and it is not an easy thing to see in your child. His bowel encopresis has turned into his putting his fingers in his bottom to help it out. He is bleeding alot from his anus and making such a mess. Also he meltsdown over his obsessions when we don't give in to them. He has weird compulsive tics such as grabbing his bottom and rolling his eyes sideways, rollin up onto his curled toes. I just hope some of these OCD ways can be reversed with IVIG or whatever treatment Latimer suggests.

 

Michele

 

 

Just to agree with Lisa:

 

We were seeing a great child psychologist who specializes in anxiety, ocd, etc- although she did not specialize in pandas. She was in complete agreement that there is a huge difference in the typical ocd she treats, and pandas ocd. With my daughter it came on overnight, therapy was only slightly helpful, obsessions/ behavoirs seemed to change between sessions, and she made a complete turnaround after a month of antibiotics. The psychologist was a HUGE help to me, but really felt we needed to push the doctors on a medical approach. (to which I agree...)

 

I do think, however, that it is possible for untreated pandas to manifest as permanent ocd at some point. I hope that with treatment of antibiotics, etc we can prevent that...

[myrose]

I am confused with the mentioning of "sudden onset" Everyone that starts to tic has to start one day.

From what I also understand, kids can start tics like tummy sucking and toe scrunching that are usually not always viewed by parents and others because of shirts and shoes so by the time they start a tic that one would notice....it would be considered sudden onset because the other tics were never seen???

 

Do you know what I am trying to explain?

 

So again the sudden onset is confusing me.

 

Unless you mean that the kids are tic free until they have strep and then the tics start immediately and after they dissapear again until the next infection??? This I would understand.

 

Please help....

[lss]

I am confused with the mentioning of "sudden onset" Everyone that starts to tic has to start one day.

From what I also understand, kids can start tics like tummy sucking and toe scrunching that are usually not always viewed by parents and others because of shirts and shoes so by the time they start a tic that one would notice....it would be considered sudden onset because the other tics were never seen???

 

Do you know what I am trying to explain?

 

So again the sudden onset is confusing me.

 

Unless you mean that the kids are tic free until they have strep and then the tics start immediately and after they dissapear again until the next infection??? This I would understand.

 

Please help....

 

Wendy,

 

It's not just the tics that you should be concerned with, but the onset of your child confessing, urination problems, and the fact that she was complaining about her ear hurting. Did the doctor do a 72 hr. culture to make sure there was no strep? If after the few days of zith, the symptoms re-appear, I would take her in and get another culture (72hrs) and ask for a upper respiratory culture. As Colleen mentioned, the fact that she responded so well to the zith, sounds more like Pandas than TS. Try the doctors at Creations Own in Melbourne, they do alternative meds as well as regular, so they may provide you the zithromax and they will do phone consults if you don't want to drive to Melbourne. Dr. Murphy did move, but she is still in Florida her number is 727-767-8230 or 8291. You can also look up Creations Own on-line.

 

As for the tics, yes sometimes with Pandas kids, the tics do subside after strep and come back again with re-infection or when they are exposed to other bacterial or viral infections. But there are kids with Pandas, whose tics don't stop even with zithromax.

 

Hope this helps a little.

 

Linda