Asperger's, PANDAS - or both?

[Lydiasmum]

Hi all. I am a newbie to this Forum and hoping somebody may have some helpful advice for our situation. Forgive me if this is a long read....

 

My daughter is nearly 6 years old. She has always been 'different'. Having had a complicated birth and having to be resuscitated, we put her early troubles down to this. She hit all milestones late (walked at 20 months, ate solids at 2.5 years). She is a high-energy, bright little girl who has trouble keeping still and talks a lot (at high speed!). She needs to exercise regularly to keep herself in check and has sensory processing problems (mainly with noise). She is currently diagnosed with Sensory Processing Disorder and is being treated for lazy eye (with patching). Her SPD symptoms have always fluctuated in severity but have always been present. The school is putting her forward for an Asperger's assessment due to her high anxiety, heightened emotions (cries a lot over seemingly trivial things) and difficulties settling at school. She does get extra help and has a SEN statement and IEP, but still struggles despite this.

 

To cut a long story very short, on 15th September 2012 (I will never forget that day!) my daughter woke up with what appeared to be 'Tourettes' - multiple vocal and motor tics which escalated over a period of weeks. It was for the entire family and we felt so helpless. Paediatrician could only tell us to sit it out and wait (but it would likely be TS and ADHD). We were devastated. My daughter could no longer attend school for whole days, her separation anxiety was through the roof and was no longer in control of her body. Prior to this crisis event, we had been on holiday (a month previous) and she had what appeared to be a urine infection. She was peeing literally every 5 minutes for nearly 2 weeks. No infection could be found and this seemed to correct itself eventually (but no clear explanation). Two months previous she had been quite ill with a sore throat and tummy pains - in fact her entire year at nursery was rife with high temperatures and sore throats (sometimes with sandpaper rash over torso). Always put down to 'a virus'. No treatment ever given. Apart from this, I do remember seeing the odd 'tic' when she was at nursery (lip-licking, eye fluttering and some shoulder-hunching, but nothing very concerning at the time).

 

The awful overnight tourettes that developed lasted just over 2 months and very gradually the tics reduced and nearly diminished completely, however severe anxiety did remain as well as some intrusive thoughts that waxed and waned over the next few months. By March she was back to her old self and we dared to relax a little and put events behind us. Then, in April we had another sudden bout of increased urinary frequency - school reported 11 trips to toilet in an hour. Doctor again confirmed no infection treated and took blood tests to check kidney function. Everything was normal and no explanation could be given. A week or two later the tics and odd movements (body-tensing) appeared again but seemed milder this time. Anxiety and sensory issues increased also. Tics only lasted a couple of weeks this time but the anxiety seemed to stick around. Very emotional this time - sad faces and slow songs made her cry inconsolably.

 

Fast forward to June and things are very good again. July 15th 2013 complains of sore throat. Swab confirms Strep. 10 days erythromycin prescribed. After treatment is completed another day of constant bathroom use takes place - but only one day this time around. All OK until 14th August 2013 - when tics and major anxiety ramp up again. Talk to paediatrician about PANDAS and manage to persuade him to prescribe prophylaxis antibiotics (he knows little of PANDAS but 'believes it a possibility'). The episode seemed to be kept under control with only minor tics which didn't interfere too much with life but the main problem seems to be the emotional lability and anxieties (they are always present to some degree).

 

My daughter continues to take daily prophylaxis (we are now 4 months in). Compared to initial onset, things are OK (we are about 90%). Should also mention that I myself have an autoimmune disorder which causes painful joints and chronic hives during flare-ups.

 

I suppose after giving the life history, my questions are:-

- Could my daughter actually only have 'pandas' which makes it appear she may be ASD/Asperger's? Bear in mind she has always been a bit 'quirky'. Could her tics and OCD/anxiety actually be part of the Asperger's or could this all be stand-alone PANDAS?

- Does this actually sound like PANDAS? The urinary frequency issue seems to be the part that the autism diagnosis doesn't cover (unless it's an OCD manifestation?)

- Is a child with Asperger's more prone to getting PANDAS?

 

Sorry for all the questions and thank you for reading. I have become a very anxious parent since all this happened and seemed to have lost the ability to truly enjoy my daughter - constantly dreading a full-scale relapse.

 

Nikki

[rowingmom]

Our daughter's Asperger's dx , motor/vocal tic disorder, SPD dx have all resolved with treatment for a bartonella infection.

 

All of her symptoms were caused by either the infection itself or by inflammation caused by release of bacterial endotoxins. We found that her body had trouble ridding itself of these endotoxins because of a MTHFR genetic deletion. Antibiotic treatment and supplements addressing her MTHFR deletion have given her back her life.

 

Urinary frequency was also one of her symptoms. She was tested several times for UTI and always returned negative.

[Missmom]

Be thankful you have a doctor willing to prescribe the antibiotics. My son also has tics that started overnight. Looking back he had other little flairs but I assumed these things were nervous habits and they did subside after about two weeks. We have never had any other diagnosis other than pandas, but from all I have researched that is definitely a good possibility for your child. I think it is easy to label pandas children with autism, touretts, sensory disorders, ADHD, etc.... But, as many of the parents on this forum have found after treating all infections, and inflammation these children can live totally normal lives. You are in the right place and on the right track. Most of us have very different stories but we are all bound together trying to help our children. If you search this forum there is so much information hopefully you will find stories that give you hope and relieve your anxiety.

[pr40]

just a different possibility: yes, it does sound like PANDAS but it does not have to be only PANDAS. It could be PANDAS and something else. Treating PANDAS might help you deal with whatever else is going on.

[Hrosenkrantz]

Lydiasmom -- like you, our son had some issues before PANS hit. He was actually just fine til he was about 4, when we discovered some speech issues and later attention issues. He fell off a cliff, so to speak, summer of 2012, and was later dxed with PANDAS. He does appear to have an ASD when he is in a PANS flare.

Also, like you, we do experience urinary incontinence when he is in a PANS flare...

[Hopeny]

Hi sorry you are going through this. Just a couple of things I wanted to mention. To echo what the others said, Strep can definitely cause frequent urination and my DD who was 8 at the time began bedwetting at the worst of her exacerbation. Also you mentioned you had an autoimmune disorder with joint pain. Just throwing this out there that Lyme & coinfections are complex and commonly misdiagnosed, and can have the symptoms you described. Lyme & Co transmitted in utero can cause some of the issues that you describe, SPD, visual disturbances, also floppiness. Lyme symptoms wax and wane as well. It's hard to say what's what but might be worth having yourself evaluated too for infections given what you are experiencing. all the best to you