A blog that explores the concept of PDA as well as offering an insight into life with a child with PDA

On my last post I shared with you the terrible side effects that Mollie was suffering while taking Risperidone.  We had the most amazing results to start of with but within about two weeks things had taken a rather drastic turn.  We completely discontinued the medication on Thursday 21st and it had taken four full days for the effects to wear off and we were still experiencing the OCD thoughts re dying.

On Monday we travelled to Birmingham fully expecting to be advised to simply start Mollie on the low dose again with a view to not increasing it to 2 x 0.5mg but to keep it a one dose a day only.  We travelled home in absolute silence and disbelief reeling from the appointment and wondering just how much more crappy doo doo we could continue to handle.

  • The Doctor expressed great relief that we had actually not given Mollie any medication since Thursday 21st November due to the horrific effect that it was having on her both mentally and physically.  She stated that had we not finished giving Mollie the medication that she was going to take her off it today anyway.
  • She then went on to explain that the bloods and ECG results that Mollie had taken, prior to starting the meds, had come back and that they were not conducive to continuing with Risperidone.
  • The first thing that she asked was if there was a history of heart disease in the family, well you can imagine my horror, as I replied that there wasn’t any such history that I was aware of.
  • Mollie’s ECG shows that she has a QTC borderline interval prolong 0.46 seconds.  In a nutshell part of the process of the heartbeat is performing at a rate that is slower than it should be.  It isn’t slow enough to give a definitive diagnose of QTc interval prolong syndrome but it does place her on the borderline of having it and this now needs further investigation to possibly monitor it.  QTc interval prolong is a condition that when the interval is too long can cause the heart to stop beating and is a major cause of sudden death in children and young adults.  The good news is that if Mollie does have this or if she is borderline and requires monitoring at least we know about it and there is treatment for it.
  • This condition can be hereditary and so she advised that we are all checked out in order to ensure that none of us may have it.  Of course the initial person that sprang to mind was our son and the possibility that this may affect him also.
  • Unfortunately Risperidone along with a long list of other medications including some antibiotics and many if not all of the anti psychotic drugs can cause this prolong to become even longer and so any of the medications on this list is an absolute no, go
  • As we took in the information that not only had the hope of effective medication been taken away and that our daughter may possibly have a potentially serious heart condition we were given yet more bad news.
  • Her blood results showed that she was also borderline for her blood glucose 5.4 and cholesterol 5.0 tests which I would imagine implies that unless we get them down we are perilously close to entering the territory of high blood glucose and cholesterol.  The implication of this could mean a predisposition to diabetes and/or heart disease.

The Doctor informed me that Mollie’s side effects did appear to be extreme and were certainly not the norm, in her experience, of patients taking Risperidone. She wondered if the extreme side effects were perhaps due to the combination of other peculiarities that appear to be happening inside Mollie’s body.

So I calmly took the information in, thanked the Doctor, shook her hand and used all of my strength to remain composed and to not let the rapidly filling floodgates, that were holding back my tears, burst open.

We drove home silent and numb, we were right back to square one but with the added bonus of serious physical complications as well.  It has taken a couple of days but we are both now back in our usual fighting stance, trying to keep things in perspective and to not let our thoughts unnecessarily run away with themselves.

The recommendations from Birmingham for our next step are as follows

  • Blood tests to be taken for Urea, Electrolytes, Creatinine level, Calcium and Magnesium levels.  From what I can gather imbalances in these areas can affect the electronic pulse of the heart rate and so this may help to either confirm or dismiss the possibility of QTC Interval Prolong Syndrome.
  • A fasting blood test for blood sugar and cholesterol because a more accurate measure can be taken if the test is done prior to the consumption of food.
  • Another ECG with stress on the QTC Interval.
  • Both myself and Mollie’s GP have been provided with a list of medications that Mollie needs to avoid as they can increase the QTC interval.

So time will tell regarding the above and hopefully everything will come back as within a normal range with no further measures required.

The Good News, Yes There Was Some!!

  • Fluoxetine is not on the list of banned medications and so we can try this as an alternative to atypical antipsychotics.
  • Mollie is now discharged from Birmingham but information about the dose of Fluoxetine and how best to proceed with this has been forwarded to Mollie’s Paediatrican in Stoke and so hopefully she will feel confident to now prescribe and monitor this medication.

Every Cloud Has A Silver Lining

  • If Mollie had not been prescribed Risperidone the blood tests and the ECG would never have needed to be done because she appears to be physically well.
  • It is due to those tests that certain borderline abnormalities have been discovered which can hopefully be corrected before any serious damage has been done.
  • The medication appeared to break down the mental barrier and anxiety associated with going out and about.  Although the anxiety, impulsive outbursts and the general fear of the outdoors have reappeared that big mental block appears to have been broken down.
  • This week Mollie has enjoyed a dance class which she will be attending again next week and we have been out for a walk and lunch twice this week.  On Saturday we should be going to a sports activity in the morning and to a small panto production in the afternoon.  So although Risperidone was very temporary, perhaps it was just enough to open the door to the world that was previously bolted tight.
  • The repetitive routines are back but I now see these as a blessing, they protect her from a world that she cannot cope with and they encage her enough so that I don’t become the repetitive routine.

For more information about QTC Interval Prolong please click on the link below


Comments on: "Things Go From Bad To Worse but Every Cloud ……" (6)

  1. Sorry to hear this but yes good news that they now know and can monitor for you. Great news about the getting out too, will keep fingers crossed that it lasts x

    • Thanks Steph, yes its been a bit of a double edged sword but at least we know and can act upon the findings of the initial tests. We have been out today yeh!! I hope that you and yours are doing ok and coping with the big build up / meltdown to xmas😉

  2. hello im on Fluoxetine it is good it works for me hope it will works for mollie

    • Thank you Shona, my husband also takes fluoxetine and I have had it in the past. Risperidone was apparently the most effective medication for PDA but we will try the fluoxetine just to help lower her anxieties. I am so pleased that it is working for you and thank you so much for taking the time to comment xxx

  3. Kelly Tyler said:

    Thank for all you have shared. We live in the U.S. so I only discovered the name of this syndrome last week. I am utterly at a loss. My son had horrible reactions to risperdone as well, everything you mentioned plus seizures. He is off the medication but doing very poorly.

    Here is my question. My son is a citizen of Italy. Do they recognize this disorder? Is there a place that treats this in Italy? Alternatively, could he be treated in England as an EU citizen? Thank you again for sharing your journey.

    • Hi Kelly, I am not aware that this condition is readily recognised anywhere other than the UK and even here it is a postcode lottery and extremely difficult to secure a diagnosis. If you are an EU citizen then I suppose that it is possible to come to the UK with a view to access local services. However I am no expert in this and would advise that you make the necessary enquires prior to making such a drastic move. Even if you did move to the UK it is still very hard to get a diagnosis and many parents have to go private. Even with a private diagnosis you would have to also consider if anyone in the US would recognise it. Even in the UK a private diagnosis can be discounted by many local authorities. If you feel that this does fit your son you could always try using the strategies at home and try to encourage your local professionals that these strategies work and to share information with the re PDA in the hope that they take it onboard. It may also be useful to join a parent support group. Please find links provided https://www.facebook.com/groups/pdausa/ and https://www.facebook.com/groups/pdaglobal/

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