Checking In Post Tonsillectomy & Months of Antibiotics

[momindc]

A little background first...

 

My now 9yo daughter had a sudden explosion of tics (no history of them, no family history of tics) back in March of 2012 just a few months before her 8th birthday - neck jerking, abdominal jerking, finger sniffing, etc. Our pediatrician immediately swabbed her throat and ran some titer tests - all checked out fine. She concluded that they were just tics and would hopefully go away, but referred us to a neurologist since the tics were very bothersome to DD and to us. Needless to say, the tics did not go away, and my kid who was also never hyperactive before, started to become very hyperactive at times, has had bouts of frequent urination, some anxiety and lots of irritability and anger. She was put on tenex and then clonidine to help with the tics - both helped some for a while anyway, but she would still have terrible bouts of tics that were very much bothersome to her (and us - hate to see our kid having a hard time). Back in March of 2013 neuro gave us a prescription for clonazepam as well and said she could use that on an as needed basis in addition to the clonidine. We did use it from time to time but it makes her so tired.

 

Needless to say, we do not like having DD on any of these meds which make her tired and cranky, and my gut was telling me that maybe we're missing something. DD was never diagnosed with tourette's as no verbal tics, but rather just a tic disorder - and we were told that hyperactivity is common with tics, etc. But my gut was telling me to get a second opinion, that maybe something else was going on, so we made an appointment with Dr. L.

 

We saw Dr. L for the first time back in April 2013 and she spent about two hours with us talking through in detail with us about DD's medical and behavioral history. She said then that she suspected that this might be a case of PANDAS given sudden onset of tics, the bouts of frequent urination, the hisory of anxiety, the history of about 4 or 5 strep infections from about 2007 - 2010, etc. Dr. L asked us to do some bloodwork and to also to do the Cunningham test through Moleculara Labs after the lab opened up. We did all that and in June 2013 had our follow up appt. with Dr. L to get our Cunningham results and discuss a plan. DD's Cunningham results were "PANDAS/PANS highly likely" and her specific test results were:

 

Dopamine D1: 1,000 (normal is 500 to 2,000)

Dopamine D2: 16,000 (normal is 2,000 to 8,000)

Lysoganglioside: 160 (normal is 80 to 320)

Tubulin: 1,000 (normal is 250 to 1,000)

CaM Kinase II: 195 (normal is 53-113)

 

DD was put on Amoxicillan in June 2013 and then Augmentin about a month or so later when we weren't really seeing results from the Amoxicillan. We maybe saw some improvement initally with both antibiotics with tics and mood/hyperactivity, but the tics always come back full force when they are waxing.

 

Last week we had DD's tonsils and adenoids removed at Georgetown Hospital. The first 48 hours of recovery were rough for DD but she's doing much better now. No tics the first couple of days so we were very hopeful....but now they're back and really bothering her again.

 

Any thoughts on where we're at at this point? The surgeon was going to culture DD's tonsils and adenoids and let us know if there was any strep or other organisms in them but we've not yet gotten those results yet. Do people that have seen a good response from a tonsillectomy typically see improvement over time or right away?

 

I feel like no matter what we do we're not getting to the bottom of this. DD's tics really bother her and we have a prescription from her initial neuro for Topomax which would be the next step he would recommend as far as medication if we feel DD really needs relief from the tics. I'm wondering if we should go ahead and give it a try now for tic relief or wait and see if we see improvement over time from the tonsillectomy first. DD is continuing on the Augmentin. We see Dr. L again at the end of the month so we'll obviously discuss all this with her but I'm wondering if any of you all who have been down this road have any thoughts at this point for us?

 

Thanks - you guys have been very helpful!

 

momindc

[airial95]

We saw immediate improvement within 48 hours for my son post T&A, it only lasted 6 weeks, when he got another strep infection. (which I didn't even think was possible without your tonsils!!!)

 

Is your daughter still on abx? We found that we have had to continue abx with my son to keep him in a good place. It may also be a time to switch abx if she is on them.

[momindc]

yes she is on antibiotics and has been since some time in June. First she was on Omnicef and then she was switched to Augmentin because the Omnicef didn't seem to be really working.

[JoyBop]

My dd had her tonsils out Aug 29 and we have had miraculous results. Granted, it hasn't been that long but well take it. The pain is horrendous for up to two weeks and the throat is still sensitive beyond that. I would give her a chance to heal first. My dd has a small throat clearing tic that never bothered her or us. I have yo admit that she still has it but now only does it while watching TV, reading, or riding in the car.

 

Your scenario makes me wonder if it wasnt the IV abx that gave your dd the temporary resolution in symptoms. Can you explore that and find out what was given? How long the half life was?

 

Our Dd did have all sorts of bacteria in her tonsils. We are now trying to get DS who has it much worse to get his tonsils out. Praying the sleep study shows apnea!!

[momindc]

is IV abx something that give standard? I don't recall the Dr. saying anything about IV abx but I'll ask. Thanks!

[T_Mom]

Have you considered trying a steroid burst with Dr L? If you see a good result that may help you for a period of time, and may indicate if a further immunomodulating treatment might be helpful (IVIG for example.

[cobbiemommy]

I just talked to the ENT nurse, today. Her daughter also is a PANDAS kid that had a tonsillectomy. She said that it can take up to a year to see full improvement. We are in the process of scheduling one for DS.

[pr40]

mood and hyperactivity -- we are seeing both and while on abx. we are trying to deal with them through metyhlation and think that they are also related to dopamine regulation. NAC helps ds. dd goes through cycles when she has them and does not have them.

you may want to try also diet, gluten and dairy free for a few months and see if that bring any change.

[airial95]

momindc, according to our ENT, who had dealt with PANDAS kids prior to ours, IV abx (as well as post op abx) used to be standard protocol, but it isn't anymore. But he said that for his PANDAS kids, or kids with otherwise compromised immune systems, it's his standard. I know most of the PANDAS docs suggest that as well.

 

JoyBop, we got my daughter's T&A done just a few weeks after my son's. She had a strep history (4s that year), but it wasn't enough for the ENT to pull them normally, but because of both her and her brother's PANDAS, he recommended they come out too. (She was our mild case)

[JPdad]

For us it took the T&A and daily antibiotics before we got to 100%. We did 10 days of Antibiotics before, IV during, and 10 days after the surgery and he was 100%. Then once his script ran out the tics returned, so he went on Augmentin daily. Since that point he has been 100% for almost 8 full months now. Fingers crossed this cold and flu season passes and he stays where he is now.

 

 

[LexMom]

We saw a lot of improvement with tonsillectomy, but have never really had a tic-free period.

[Dedee]

The other thing to consider is that you have only tried two different antibiotics. Others you should consider would be Zithromax, Biaxin, or Clindomycin. Also make sure that your daughter is at a high dose especially post T&A. The bacteria is released during surgery and she needs to be on a high dose for a while to settle things down. If none of these things work you should make sure she is tested for other infectious triggers. Dr. L is a very good doctor. I am sure she will help you with these things.

 

Dedee

[JoyBop]

Airial95 I wish our Ent would take DS tonsils bc if pandas and siblings. But insurance won't pay for it unless we can prove he has sleep apnea. Just had it done Sunday now waiting for results.

 

Our pandas ID dr said that studies show (these are not pandas specific srudies) that after t and a there is a reduction if strep infection for the first year but after that the risk of strep goes right back up to the same as those who have tonsils and that is why it is not approved yet for pandas (as well as other legalities since most insurance cos won't cover for that diagnosis yet)

 

Praying for sleep apnea!!!!

[airial95]

My daughter was already on her 4th strep infection of the year, which is 2 less than what they usually want to see to justify it on that account - but since she had (very mild) PANDAS and her brother, the ENT wanted to pull them ASAP. We begged him to do it when she was in for her adenoids earlier in the year, but he wouldn't do it then.

 

My son did have reduces infections the year post-op. Down to 6 from 10+ previously. (Every little bit helps huh?) We finally found our stop gap from the chronic strep with a combo of 3 abx. He started HD IVIG every 8 weeks since April, and it's been nothing short of AMAZING.