A Newry mother has spoken out regarding her efforts to try and get her extremely ill daughter the healthcare that she so desperately needs.
Martina McMahon, pictured above with her nine year old daughter Zoey, has started a GoFundMe page to raise the money that will enable her to travel to London with her child so that she can receive specialist private health care treatment that she has not as of yet been able to secure from the NHS.
Zoey, who alongside having to live with autism, suffers from what Martina believes to be a condition known as “paediatric autoimmune neuropsychiatric disorder associated with streptococcus (strep)” or PANDAS .
Martina defines this as “an autoimmune disorder where the body's immune system not only attacks the infection as it should but also attacks part of the brain, the part that controls motor skills, behaviour, and emotions.”
Martina believes that Zoey developed PANDAS following the contraction of a streptococcus infection. Although this infection was correctly diagnosed, with steps then being taken to treat it, Martina began to notice changes to her daughter's behaviour.
Whenever these changes in Zoey’s behaviour began to become more extreme, Martina started to suspect that her daughter may be suffering from PANDAS after she became aware of what the symptoms of this disorder are.
Despite these concerns for her daughter's wellbeing, whenever Martina broached the topic of PANDAS to an NHS paediatrician, her concerns were dismissed with Zoey’s extreme behaviour being attributed as a manifestation of her autism.
“I had raised my concerns with a paediatric doctor who works for the NHS that Zoey could be suffering from PANDAS and they told me that no it could not be PANDAS and that the behaviour she was exhibiting was a result of her autism. I was told that Zoey has very complex needs and there are no straightforward answers.
“However, Zoey’s behaviour cannot just be a result of her autism. I don't know every child with autism but I have become familiar with a lot of people around Newry who have children with autism and even they say that their children do not exhibit the same kind of behaviour that Zoey does.”
Following a consultation with a private clinician from London that cost Martina £600.00 in which she learned that her daughter could be suffering from PANDAS, Martina decided to start fundraisng to pay for the treatment that her child so desperately needs because according to Martina, currently, her daughter Zoey “is suffering and she has no life at all.”
According to Martina although Zoey was diagnosed as being autistic at the age of three the concerning behaviour that Zoey has been exhibiting only appeared following the presence of a Streptococcus infection in her daughter's kidneys.
“Zoey is a twin,” said Martina.
“I have identical twin daughters Zoey and Ruby. Zoey was diagnosed with autism at the age of three. Despite this she met all of her milestones up until this age. She was able to put words together and was colouring, dancing and singing as well. She was non-verbal and in her own world, but she was happy. She would get frustrated and couldn't communicate but she would develop through time her own way of communicating. She would have eaten anything and she was sleeping as well as playing.
“However two years ago, Zoey started to pass blood in her urine for weeks and months at a time. A week after there seemed to be no bleeding for months and then it started it again. At one stage she was on ten antibiotics and despite having left multiple samples in for testing no one was getting to the bottom of it.
“Eventually after a year and a half they did do a particular blood test for ATOS levels and it came back that Zoey’s levels were off the scale. I heard back from her pediatrician that she had streptococcus in her system. We were prescribed more antibiotics and sent on our way.”
It was following the confirmation of the presence of Streptococcus in Zoey’s body that Martina began to notice changes to her daughter's behaviour which she believes cannot be attributed to the fact that here daughter is autistic.
“I came back a month later and I told the pediatric doctor that there was a huge change in Zoey's behaviour. This change in behaviour occurred before the bleeding and it appears to be getting worse as time goes on over the past two years.
“It would have started as Zoey holding on to me and Zoey having really heavy spells of breathing along with sobbing and crying. There are no triggers for Zoey's behaviour. She could be sitting and eating her favourite crisps and listening to YouTube and the next thing she is crying and screeching. This isn't a meltdown. I informed the paediatrician that Zoey had developed OCD, by which I mean for Zoey lights have to be a certain way, clothes have to be a certain way and doors have to be a certain way. She also was holding on to me 24/7 where she used to go outside and play on the swing and loved her water play and she was happy. I accept the fact that Zoey is autistic but I don't want to see her in pain and she is in pain. Zoey comes across a child that has the weight of the world on her shoulders.
“She is kicking and screaming, biting, headbanging. She hurts herself as well. She headbanged that much during the first lockdown that she was blue lighted to Craigavon hospital and she had to get staples in her head as a result. “Also, like I said Zoey won't leave me, even if I am in the bathroom or the shower she will hold on to my clothes and her anxiety is through the roof.
“Her eating has also changed, although she would have been really restricted from food as it was her weight is up and down all the time. She will only eat for me at home, not for anyone else. Children with PANDAS often suffer from a fear of choking and there are some days that she wouldn't eat a bite. She would lift multiple packets of crisps a day and just throw them on the floor. She also suffers from panicking and anxiety.
“I had a disability social worker tell me that in her 25-years of working in Newry, she has never met a Zoey. To give an example of how much her behaviour has changed Zoey was with a respite family in Kilkeel. They took her one night a week on a weekly basis to give me an opportunity to rest. They had Zoey for nearly a year and they had to give her up. She is now in a respite unit that is only for teenagers between 13 and 18 years of age and she has been in there since she was six. She gets two nights respite in this unit every week.”
It was after Martina became aware of the symptoms of paediatric autoimmune neuropsychiatric disorder or PANDAS that she began to suspect that her daughter could be suffering from this condition.
However, whenever she broached this topic with an NHS paediatric doctor her concerns were dismissed out of hand, with Zoey’s behaviour being attributed to the fact that she is a child with autism.
“I broached the topic of PANDAS with a paediatric doctor who works for the NHS. They told me that since Zoey is autistic the symptoms overlap.
“However, I cannot accept this after two years of observing Zoey’s behaviour.
“It is not normal for vany child to pass blood for nearly two years and nothing be done. Like I said I voiced my concerns to the Doctors that it could be PANDAS but one doctor told me no it could not be PANDAS, another doctor told me the same and then a third doctor told me that the symptoms of autism and PANDAS overlap.
“After the ATOS test was eventually done, I went back to the paediatric doctor a month later and told them that the antibiotics didn't work and she seems to be getting worse and I broached the topic of PANDAS again. Zoey was with me on this occasion and she grabbed a hold of me and put her arms and legs around me and started rocking back and forth. This is Zoey’s way of telling me that she is in pain. I said this to the paediatric doctor and they turned around and said to me: ‘I think she is just fed up.’
“Zoey is also under the care of a psychiatrist and she wanted to put Zoey on antidepressants and ADHD medication. Zoey’s paediatric doctor diagnosed her with ADHD. I kept saying to him that I don't believe that she has ADHD, if she had ADHD would she not be exhibiting this behaviour all the time?
For example, there would be days were Zoey would lie on the floor all day and not get up, and ADHD does not cause bleeding.
“The NHS psychiatrist does listen to me but she has told me that she wants to try Zoey on antidepressants and ADHD medication before she refers her to a specialist for testing for PANDAS.
“However, Zoey is not on any medication of this kind and that was two and a half years ago, so when am I going to get this referral to have Zoey see a specialist to test for PANDAS on the NHS, another two and a half years?
“I have been told that the sooner you get this treatment done the better the results and the more of your child that you will get back”
“They will try Zoey on a medication for six months and then when this doesn't work, they will try another one. We are just going to be passed on and passed on.”
After her concerns that Zoey may be suffering from PANDAS were dismissed Martina decided to consult with a private clinician based on Harley Street in London by means of Zoom call. Although for Martina this did incur a personal expenditure of £600.00, this is a small price to pay to ensure that Zoey receives the healthcare that is vital in guaranteeing that she can live as healthy and fulfilled a life as is possible. Thankfully Martina’s concerns that her daughter may be suffering from PANDAS were taken more seriously by this private consultant.
“I decided to go private and consulted with a doctor in London who works on Harley Street. I had a Zoom call with him which cost £600.00. He told me that medically and genetically it makes no sense to have identical twins, in this case Zoey and Ruby both of whom have autism, that are polar opposites and that there is definitely more to this. Ruby is a lot like you and I, the only thing that Ruby suffers from as a result of her autism is that she is a selective mute.
“He told me that from a medical and genetic standpoint it does not make sense for Ruby and Zoey to be so different in terms of their behaviour. He told me that Zoey and Ruby should be exactly the same because they are identical twins. One shouldn't be so different from the other.
“The private doctor from the clinic on Harley street told me that Zoey’s case really has his attention and that he is going to do everything he can to help her.
“I sent the doctor videos of Zoey’s behaviour along with her blood results which revealed that she had Streptococcus in her body. He believes that there is a good possibility it could be PANDAS, although he will not know for definite until he sees her and runs his own tests, but he does think this is what it could be.
“The worst thing about this condition other than the lack of a diagnosis is the child becomes a shell of themselves. This is a treatable condition and the sooner a child gets diagnosed the better the outcomes will be and the more of the child you get back.”
Martina was keen to provide detail on the treatment options that are available from the clinic on Harley street in London if and when Zoe receives a diagnosis of PANDAS.
“If it is determined that Zoey is indeed suffering from PANDAS then there are a few different options for treatment. We can try a certain antibiotic that works in most cases with a normal child. In some cases an antihistamine with a different form of antibiotics may work or perhaps antibiotics administered through an IV. “However, some severe cases of PANDAS don’t respond to medications so in the end if none of these options work then we can try a blood plasma exchange which is done to remove the faulty antibodies from the blood. This procedure uses healthy donor blood plasma products to help boost the immune system.”
Although this new range of options to help Zoey recover from the symptoms she has been suffering does seem promising, having Zoey undertake these procedures to try and cure her of PANDAS privately will no doubt cost a considerable amount of money. This is a fact that has not been lost on Martina, with the loving mother now turning to fundraising to help generate the revenue needed to get Zoey the treatment that she needs.
“The blood test that needs to be carried out to determine if it is PANDAS that Zoey is suffering from is very expensive in of itself, costing £1500. “We also have to cover the costs of flights over to London, as well as accommodation and the costs of any further testing that may need to be carried out.
“Although I am not sure how much the blood transfusion would cost, I was talking to one mother online and it cost around £9000.
“Like I said the Zoom call with the private consultant in London was £600.00 and a face-to-face consultation will also be £600.00 and this is only the start of the procedure.”
Despite the somewhat considerable financial expenditure that it may take to have Zoey treated in London, Martina remains optimistic regarding the prospects of raising enough money to see her daughters treatment through, with the GoFundMe page that she started having already raised £2450 in proceeds.
Martina would like to express her sincerest thanks to the people of Newry for the amount they have donated so far, stating that the reception that she has received from the community has been unbelievable.
“Since we made the appeal to help get Zoey over to London the reception from the Newry community has been unbelievable. People that I don't even know have made donations. I would like to express my thanks to the community. It pulls on my heartstrings because like I said there are complete strangers that I don't even know who have made donations to help get Zoey over to London so she can receive the treatment that she needs.”
A fundraising event in aid of Zoey will be held in the Newry Foresters on Saturday, July 23 at 7pm. There will be a live DJ playing music along with food and a charity raffle. Zoey’s twin sister Ruby will also be having her hair cut to raise funds for the cancer charity Princess Trust. If you would like to help Zoey travel to London to receive the care and treatment that she so desperately needs you can make a donation on the GoFundMe page that Martina has founded at https://www.gofundme.com/f/end-zoeys-pain
When asked to provide a comment in relation to Zoey’s case and the apparent lack of consideration given to Martina’s concerns that her daughter could be suffering from PANDAS, a Southern Trust health spokespearson stated that “Whilst we are unable to comment on any individual case, we take all concerns about the quality of our care very seriously and we encourage any parent who has concerns about our services to make a complaint by contacting our Service User Feedback team.
Each complaint is fully investigated before we send a comprehensive response back to the person making the complaint. The team can be contacted by telephoning (028) 37564600 or by emailing firstname.lastname@example.org”
When also asked to provide a comment on Zoeys case the Belfast Health Trust responded that “they sympathise with the extraordinarily difficult situation the McMahon family are in. Diagnosing PANDAS can be difficult due to the complexities of the condition, however we would like to reassure her family that Zoe remains under close follow up in both the Belfast and Southern Trusts with several expert and experienced clinicians.”