Questions re. PANDAS symptoms/antibiotics

[Lydiasmum]

My DD (5.5) has "possible PANDAS" with added "tic disorder/anxiety" diagnosis currently (it's a start!). She is taking prophylactic Erythromycin and has been for 5 months. Currently she is 90% good. She seems to either have the OCD thoughts/major emotions/acute anxiety OR the bad motor and vocal tics (rarely together, thank goodness). Like something has to come out one way or another. Can anyone else relate?

 

Other symptoms she has waxing and waning are: dark circles under eyes, a vacant look, lack of eye contact, bouncing hyperactivity, squirming in her seat, stiff piano like finger movements, relaxed demeanour to fight or flight mode in the blink of an eye, dilated pupils, bouts of frequent urination, poor motor skills and sensory sensitivities (particularly noise). She is also being treated for a lazy left eye (since 6 months old) and even the orthoptist is confused about the strange fluctuating pattern her squint will take in between appointments (never experienced anything like it in her 15 years on the job!)

 

I remember age 3 behaviours which I now know were tics (lip-licking, funny repetitive noises, rapid eye-blinking and shoulder shrugs) but we had the explosive overnight 'tourettes' and increased anxiety at 4.5 yrs. She has a history of lots of 'viral' sore throats with high temperatures and rashes whilst in nursery aged 3-4.

 

The school are putting her forward for an Asperger's assessment this year due mainly to 'quirkiness' and excessive fear and sensory problems in the school environment. She finds it hard to socialise with groups of friends, although she does well in this area if one or two friends are invited to our house where she feels comfortable. She also struggles with fine motor skills/planning. Her strong areas like gross motor and reading and literacy are outstanding, but she still cannot use cutlery or dress a doll.

 

Some rare days she is soooo 'normal' and she even looks different - good eye contact, eyes that seem synchronised with (a rather gorgeous) glint in them like she is actually looking at you and seeing you clearly for the first time. The only thing never gone completely is separation anxiety and fear of change, although mild and manageable during good times.

 

I find myself thinking definitely PANDAS without a doubt - to probably aspergers with all the co-morbid tourettes, anxiety OCD etc., OMG! - I need to find some sort of inner peace and get a grip for the benefit of my child. I am mentally exhausted after researching all of this for over a year.

 

As for the antibiotics, they are helping. She has never been quite as debilitated as huge first noticeable flare at 4.5, although she has had a few minor episodes since then. In an ideal world, I would not choose to continue with them but her paediatrician is happy to prescribe them for now. How long will be sufficient? He seems to be taking advice from me (!) from what I have read and has admitted he knows very little of PANDAS. I am scared to stop the abx.

 

With all of your experiences on this board, just wondered if there are any similar stories out there or any advice someone could offer.

 

Thank you.X

[Mommy2MCL]

Has she had recent blood work? I think you should start there. See if she has any co infections and treat from there. My daughter was on Augmentin for a month and her symptoms stalled. Once bloodwork came back she had an active Mycoplasm & past infections. Once we changed antibiotics we were so much better. Right now she still has a hard blink and that is her only tic left. She had up to 12... And also some leftover anxiety but so much better...

[citygirl]

What bloodwork is done to see if there is co-infection? Is there one that covers a big chunk of diff co-infections out there?

 

I too am trying to figure out if my dd age 5 has an oncoming pandas or not. She's got sighing she started a month ago and then a string of viruses and stomach bugs. Just did a strep test that came out positive as well. Wanted to test her for babesia too with her breathing symptoms. Could she have both?

[qannie47]

If the antibiotics are working, and it sounds like they are, keep them up. I would also recommend seeing a Pandas specialist. Pandas is not an easy disorder to take on. It is nebulous. You will need a specialist who is used to the twists and turns that go hand in hand with this syndrome. It sounds like you have a very good grasp of your daughters symptoms, and that is good. It also seems that you are experiencing some success with the abx, that is wonderful too!

[3bmom]

I agree with Quannie47. A good Dr will run other tests. We have been on Erithimycin for two years with good success but also take antivirals for Human Herpes Virus-6 which he was almost 16X higher than normal. We too had most of what you describe as a deterioration from a normal child.

 

I and some Drs see PANDAS and Aspergers/ Autism as a Venn diagram with overlapping symptoms due to immune dysfunction causing brain inflammation.

 

Each layer you address such as infections, diet, and detoxing will lessons symptoms and move you towards healing.

 

I feel diet is huge and our Dr won't treat unless you do diet. At first it is overwhelming but each step no matter how small helps take a layer off. We are GMO free, dairy free, wheat free and especially corn and soy unless its organic.

[Lydiasmum]

Thanks for your responses. We did have bloodwork done but far too long after the episode and waned. Everything negative. My paediatrician has told me not to get too hung up on blood results as they don't provide definitive 'answers'. I am happy to accept this as it was absolute trying to draw blood from DD, really traumatic for all involved! 3bmom, can I ask how your child is nowadays. You say 2 years on the same abx my DD is taking.