UK: If we take out tonsils, how do we get antibiotics in future? Help&

[StellasMum]

Hi everyone. My ten year old daughter is diagnosed with TS though I believe she has PANDAS. At the moment she is on her third course of antibiotics for throat infection since March (she is allergic to penicillin so has erythromicin). As soon as she finishes the course, ten days later the infection is back.

After a week of her waking up screaming at night, having horrible thoughts and images in her head and difficult behaviour in the daytime, I could smell the infection on her breath and went to the doctors but he said he would not prescribe as the tonsils didn't look 'bad enough'.

 

Over Easter weekend we went to out of hours docs who gave meds and advised to get a swab at docs to check if another antibiotic would be more effective, when they opened again on Tuesday. Went to docs on Tuesday who said tonsils were getting better so antibiotics are working and theres no point in taking a swab.

I am continuing with the erythromicin but will go back to docs this Friday and try to get a longer course to hopefully get the infection to go but, despite the improvement in her throat, she is not responding to the antibiotics as well as usual. She is still suffering from anger, anxiety and pronounced tics which I would expect to decrease on a course of antibiotics.

 

I will be asking for referral to an ENT re possible tonsilectomy as she is not recovering and has missed 3 weeks of school so far this year. However, as the doctors refuse to accept any link between tics and tonsils, they won't issue antibiotics before and after surgey as is recommended with PANDAS.

Also, once tonsils are removed, if she presents PANDAS symptoms; worsening tics, anger, anxiety etc from a hidden strep infection, how will I get antibiotics without the visible infections that doctors here recognise? This is my concern.

Without any medical back up I am at a loss what to do. It's two years since I asked for help with her tics and we have not even seen a specialist in TS (on list with Great Urmond Street) so help with PANDAS is pretty unlikely. Any advice would be appreciated.

[StellasMum]

Please excuse spelling mistakes above. I am completely knackered from lack of sleep (having imaginary conversations with Doctor!!)

[Lydiasmum]

Hi Stellasmum,

 

Although I cannot answer your question confidently, I can tell you I am in a similar situation. We are also in UK. My daughter is nearly 6. Major PANDAS flare at 4.5 years. 3 flares in 12 months. At 5.5 years dx with strep throat via swab. Been on preventative erythromycin since August 2013 during her third flare up. The abx did not stop the symptoms but stopped them getting worse. The symptoms remained manageable until November 2013 then seemed to disappear. She has been 95% since December (knock on wood!). I have seen very minor tics in April (like last year) which I think are pollen related. But her mood is good and has been for 5 months. This is the best she has been for 18 months (knock on wood again!).

 

My daughter's pediatrician is the only person who would prescribe continous abx (2 x 250mg per day), her GP refused. The pediatrician believes in PANDAS but has very little knowledge and is being guided by me (gulp!) but at least he is listening. Daughter was referred to neurologist a month ago who dx'd Tourette Syndrome (he told me he doesn't buy into PANDAS!). So I do feel totally alone and understand your angst.

 

I have just had ENT doctor look at my DD's tonsils. He said they look OK but was willing to put her forward for T&A if I wished, given her history of symptoms. I have not done any more about this yet and am not sure what to do to be honest. At some point the ped will want to take her off the abx and I am worried symptoms will come back. But for now she is in a good place.

 

It sounds as though your DD could do with continuous abx rather than lots of short courses. Infections seem to take so long to clear in our kids. Preventative is the way forward. She would certainly need abx following tonsillectomy. It is so difficult to get anyone to take you seriously over here so I count my blessings that at least my DD's ped. is trying his best. He has suggested we get in touch with Great Ormond Street's TS clinic but I did not realise there would be such a waiting list. Apparently, they are all ears when it comes to autoimmune causes for tics. I do not really know what I would do in another crisis.

 

Our ped. tells us not to get too hung up on TS or PANDAS as a diagnosis but keep an eye on what makes the symptoms better or worse. It really is depressing and unpredictable but my gut feeling has always been autoimmune cause. Major issues with strep and more minor issues with allergies. Just out of interest, does your DD ever display very frequent urination before the tics start?

 

I wish you well. I will be sure to let you know if I stumble across anything of help to you during our journey. If you want to mail me personally, please do. It can help to know you are not alone.

Edited April 24, 2014 by lydiasmum

[Missmom]

We have not done a t&a yet, and probably won't now because my son is now 14 and the older they get the more complications can occur. But when he was younger I kind of wanted it but the ped wanted to take a wait and see approach and did not want to do any surgery unless absolutely necessary. My son has been on augmentin though for two years and when I have tried to take him off the symptoms do return. Maybe not immediately but they creep back in. We have a doctor who is very open to antibiotics and if things got worse ivig or plasmapheresis. I feel fortunate for that.

 

I just wanted to say though although we have not done a t&a, I would not even consider it unless my son could have antibiotics before, during and after surgery. I don't know if you have the option of changing doctors, but maybe you could look for another doctor who is more open to the idea of antibiotics as preventative.

[StellasMum]

Hi Lydiasmum and missmom, thanks so much for your replys.

 

Lydiasmum, I totally agree that Stella would be better on continous abx but no chance of that at the moment. On the bright side, the GP was much more helpful yesterday than I expected and gave us another weeks worth of Erythromicin which I hope willl get this current bout under some control. It took some doing to get that and I went armed with PANDAS info expecting to be laughed out the room but he said he had heard of it though was clearly no expert.

The one symptom Stella doesn't have is the frequent urination which has always put some doubt in my mind. The main symptoms indicating infection are her extreme mood swings and bedtime anxiety. It's good to hear your dd is getting some relief from her symptoms and a great comfort to get some feedback from the UK. Also great to hear GOSH are open to autoimmune causes so will chase that appointment this week too.

Missmom, I mentioned seeing an ENT, but our GP wants some blood tests done first; glandular fever screen, full blood count, ESR (?) and ASOT and Anti DNase (?). If anyone can fill me in on what these last two are, I would be grateful. I certainly won't go through the T and A removal without abx and a supportive ped though so thanks for helping me come to that decision.

It's good that the GP has taken an interest but I'm slightly concerned that I'll be stonewalled if these bloods come back showing anything that may discount PANDAS so will wait and see.

Again, thanks for the replys. it really is a godsend. Best wishes x

Edited April 26, 2014 by stellasmum

[Missmom]

The last two tests measure strep antibodies and are often used as an indicator of recent strep infection. Many doctors use this as an indication for pandas, but you can still have pandas without high numbers. Also wanted to say my son never had frequent urination. Symptoms are different for every child and you don't have to see all of the symptoms to rule this in or out. Very confusing I know but that is why it is so hard to figure all of this out.

[StellasMum]

Hi all,

 

Am back again as we have just got a date for Stella to have her tonsils out, 31st July, so very little notice!

 

Our pediatrician previously said he'd 'discuss' use of antibiotics for ten days before and after surgery, once we got a date for he op, so I'm in the process of geting this sorted. Will try to push for a longer course if possible but even getting ten days each way isn't easy.

 

My concern again now is getting antibiotics in the future if Stella has symptoms but no infected or enlarged tonsils to show the Dr. Having never had a PANDAS diagnosis, it's tricky.

 

I'm considering looking for a sympathetic, private GP who I can pay for antibiotics and wondered if anyone in the UK has gone down this route?

 

Or a private PANDAS doc who can offer is a safety net in the future.?

 

Any advise on wher to go next would be great. We had no joy at Great Ormond Street ( Stella was pretty symptom free at our appointment and they were not interesedt in PANDAS as a diagnosis) so private now seems to be the only thing we haven't tried.