Cure Ellie's Illness
Donation protected
Our daughter’s name is Ellie, she is 15 years old and will be 16 in August. 4 months ago her life changed drastically overnight.
Ellie was always a happy, placid, kind child but at 10 years old she developed sudden mental health problems which include, anxiety, OCD, and intrusive thoughts and depression. As a last resort she was put on sertraline but she became extremely unwell, after 5 days taking it. s Things drastically changed!
During her sleep one night, she started to have uncontrollable body movements, which resulted in her arms and legs violently flapping around. The next day she woke up and was fine. However that night it happened again but this time it was much worse. The following day she woke up with severe motor and vocal tics (involuntary movements). As a mother this was terrifying for us because it happened so suddenly. Ellie was saying everything she was seeing and thinking, with no break and she couldn't control it.
She was also crying and screaming with intense pressure in her head, she also developed separation anxiety and extreme OCD. Her senses had also become severe, sound, touch and light sensitivity were heightened, she couldn’t tolerate any noise and if things got overwhelming e.g. too much noise she will start screaming or get very angry.
I immediately contacted CAMHS who she was under for her mental health issues. We were called in for an emergency assessment by the CAMHS team. They were surprised and very concerned that it was a rare side effect from the sertraline. The course of Sertraline was immediately stopped. They advised us to wait for 2 weeks to see if the symptoms would stop. They assumed that the tics were caused from heightened anxiety from the sertraline but after 2 weeks they decided this was not the case. Her physiatrist queried PANDAS, which is paediatric auto-immune neuropsychiatric disorder associated with Streptococcal. This is inflammation in a part of the brain called the Basal Ganglia. The reason the brain gets inflammation is because the immune system starts to attack good brain cells. If PANS/PANDAS gets left untreated it can cause cognitive brain damage. This can develop and cause a number of psychiatric and physical problems that may become extremely serious. Ellie had bloods taken an to test the amount of Strep in her blood and was prescribed 2 weeks of antibiotics (the minimum course of meds for PANDAS is at least 6 weeks but the NHS do not know this and only provided 2 weeks). They said if her symptoms hadn't reduced in 2 weeks, it would most probably be Tourette’s syndrome. Ellie was on anti-biotics for a month but the symptoms did not change.
She was referred to the Paediatrics where she was sent for an MRI head scan, and various blood tests. Including a lymes serology test at my request. Even though they disagreed on my suspicion of it being Lymes disease because she had no
obvious tick bite or bullseye rash associated with lymes. I also queried Bartonella due to Ellie having many symptoms and strange stretch marks horizontally on her back. This idea was also dismissed straight away. All of the NHS test results came back normal and we were advised to have an EEG and were referred back to CAMHS, where we were told this was probably all due to her mental health.
At this point I still didn’t believe that Ellies symptoms over the past 18 months were down to mental health. I know when there is something wrong with my child, like every mother knows. Over those 18 months my daughter has had many physical issues as well, which were looked into but there was nothing found through NHS tests. Ellie has suffered from chronic daily stomach pains, being told by doctors she had ‘IBS’. Pains in different areas of the body especially her legs, a running low grade fever, a fast heart rate, that even doctors were concerned about, (to the point they sent her to hospital and was told to have an urgent ECG, yet again nothing was found). She has also suffered from depersonalisation, fatigue, often feeling sick, severe nausea and flank pain which landed her in hospital again by doctor’s request, back ache and constant swollen lymph nodes. She’s also has consistent UTI (Urinary tract infection) symptoms which include; bladder pain, bladder pressure, constant leukocytes, traces of blood and urinary hesitancy.
As time went on Ellie developed more symptoms such as severe rage and aggression, OCD and the separation anxiety got worse, so much so that I haven’t been able to work since this all started. Our daughter hasn’t left the house in over 4 months, not even for family walks we all enjoyed. She also cannot be left unattended due to her tics as they can grab dangerous objects. Her tics also make her harm herself and others by hitting, punching, kicking and scratching. As a parent I found myself desperate and with no help from the NHS I luckily found a PANS/PANDAS facebook group, where so much help and information was available by others experiencing the same.
I found out about place called the E- hospital where they specialise in PANDAS. We had a consultation call at £350 and blood tests carried out at £1000 where we were told strep can hide elsewhere however when the results came back, they showed nothing major other than the 200 reading and a few other abnormalities, only showing what we already knew. I was gutted and didn’t know where to go from there. I found out that PANS (paediatric acute-onset neuropsychiatric syndrome) was also a thing which causes the same brain issues but it’s caused from anything other than strep, such as infection, virus’s, yeast, vaccines including HPV, parasites in gut and blood, disease, mineral and nutrition problems, food intolerances, general illness, gut toxins, toxins in the environment and even mould. I found out that some medications can also trigger this autoimmune response such as SSRIS or even anaesthetic. So we thought again that possibly the sertraline triggered these symptoms.
After being told it’s most likely PANS we started to investigate further to find out what was causing my daughters many problems. We went to a functional practitioner who ran a number of tests including a GI map test (a type of stool test), OATS test (a type of urine test) and a hair mineral test. All of these tests had to be done privately as the NHS do not do them, nor do they even know about them. When the results came back we were shocked to find out how many problems there were with our daughter. Most of her vitamins and minerals were very low and some levels were high including yeast and quinolinic acid. Some of the high levels explained a lot of her physical and mental Problems. She also had multiple bad bacteria in her gut including Ecoli and H.pylori. Over the 8 years my daughter has had chronic stomach issues, not once did the NHS tests her poo for bacteria. A few of the levels had spiked up which could indicate food intolerances and lymes disease. We then decided to get a private food intolerance test. The results completely shocked us all as there was 17 different food intolerances.
Even after finding all this information, I still had an instinct that something else was wrong. The things we found out still didn’t explain the physical symptoms she’s been experiencing over the past 2 years. We asked the paediatrician again about possible bartonella, due to multiple symptoms and marks on her back. The doctor said they googled it and understood our concern, so she spoke to her infectious disease colleges about it but never got back to us. We were also told that if she did have lymes, then she had already had antibiotics, so it would be gone by now. However the antibiotics she was given weren’t even the antibiotics administered for lymes disease and wouldn’t have been a long enough course to have any effect.
By this point we were fed up and decided to get a private lymes, bartonella and babesia (blood parasite) blood tests done. When the results came back they were positive for Lymes disease and bartonella. Ellie was positive for lymes disease and Bartonella. She also has Chronic immune suppression which also blocks out antibodies and means she is susceptible to illness. We were told these numbers were significant and needed to be addressed, we also found out that NHS don’t test for Bartonella and we’re told the Lymes tests on the NHS are unreliable as they test for antibodies, however if lymes disease is chronic which my daughters is then you won’t have antibodies and after 4 weeks of having the disease, antibodies disappear.
This leads us to why we are making this Go fund me page. Unfortunately the NHS do not treat and do not believe in chronic lymes disease and can only really treat up to 4 weeks after initial bite, even though a lot of people don’t know they have been bitten as bites can be the size of a poppy seed. Lots of people have been turned away by the NHS for this disease. The NHS also do not test for Bartonella nor do they treat it.
Now my husband and I are feeling alone and let down, not even considering how disappointed and anxious Ellie feels. Our daughter’s life had been on hold for over a year. She left school permanently December 2019 due to severe social anxiety and panic attacks. She just feels lonely and lost. She just wants to live a normal teenage life and not have an illness to hold her back anymore. She want’s to go to college this year but fears she may be held back if this illness isn’t cured by then, which will impact her more mentally as she is already so isolated and has no life.
We now need to raise enough money to get our daughter to see a private Lyme literate Doctor. They will use a number of methods on fixing this, which include treatments through an IV, herbal medicine, ozone therapy, supplements through infusions and injections. Some of the medicines will need to come from abroad.
We need to raise this money as soon as possible as we’ve spent over £5800 and I’m no longer getting sick pay from work, my husband is on 80% due to furlough and our savings have gone on the tests and private consultants appointments so far. We have literally hit a wall and it frustrates us that our daughter needs healing but without funds she can’t get it.
We are desperate to help our daughter and she is also desperate for a normal life. She just wants to be able to be independent again, this illness has disabled her and she is unable to do anything herself mainly due to her severe tics that are constant, she never has any brake’s from them and cause’s a lot of distress at times, especially in a tic attack. If she gets treatment eventually all her neurological, psychiatric and physical symptoms will subside and she can go back to being independent, happy teenager. Like I said, due to her tics she is a danger to herself. I also cannot work as she needs to be accompanied at all times and can’t even sleep alone. I am now not getting paid anymore.
We need people to spread this story as far as possible and share her story and our struggles. It may help someone else, in a similar situation.
We would appreciate any donation, anything you can donate will be a huge help.
Thank you for reading our story and we hope that you can help.
Ellie was always a happy, placid, kind child but at 10 years old she developed sudden mental health problems which include, anxiety, OCD, and intrusive thoughts and depression. As a last resort she was put on sertraline but she became extremely unwell, after 5 days taking it. s Things drastically changed!
During her sleep one night, she started to have uncontrollable body movements, which resulted in her arms and legs violently flapping around. The next day she woke up and was fine. However that night it happened again but this time it was much worse. The following day she woke up with severe motor and vocal tics (involuntary movements). As a mother this was terrifying for us because it happened so suddenly. Ellie was saying everything she was seeing and thinking, with no break and she couldn't control it.
She was also crying and screaming with intense pressure in her head, she also developed separation anxiety and extreme OCD. Her senses had also become severe, sound, touch and light sensitivity were heightened, she couldn’t tolerate any noise and if things got overwhelming e.g. too much noise she will start screaming or get very angry.
I immediately contacted CAMHS who she was under for her mental health issues. We were called in for an emergency assessment by the CAMHS team. They were surprised and very concerned that it was a rare side effect from the sertraline. The course of Sertraline was immediately stopped. They advised us to wait for 2 weeks to see if the symptoms would stop. They assumed that the tics were caused from heightened anxiety from the sertraline but after 2 weeks they decided this was not the case. Her physiatrist queried PANDAS, which is paediatric auto-immune neuropsychiatric disorder associated with Streptococcal. This is inflammation in a part of the brain called the Basal Ganglia. The reason the brain gets inflammation is because the immune system starts to attack good brain cells. If PANS/PANDAS gets left untreated it can cause cognitive brain damage. This can develop and cause a number of psychiatric and physical problems that may become extremely serious. Ellie had bloods taken an to test the amount of Strep in her blood and was prescribed 2 weeks of antibiotics (the minimum course of meds for PANDAS is at least 6 weeks but the NHS do not know this and only provided 2 weeks). They said if her symptoms hadn't reduced in 2 weeks, it would most probably be Tourette’s syndrome. Ellie was on anti-biotics for a month but the symptoms did not change.
She was referred to the Paediatrics where she was sent for an MRI head scan, and various blood tests. Including a lymes serology test at my request. Even though they disagreed on my suspicion of it being Lymes disease because she had no
obvious tick bite or bullseye rash associated with lymes. I also queried Bartonella due to Ellie having many symptoms and strange stretch marks horizontally on her back. This idea was also dismissed straight away. All of the NHS test results came back normal and we were advised to have an EEG and were referred back to CAMHS, where we were told this was probably all due to her mental health.
At this point I still didn’t believe that Ellies symptoms over the past 18 months were down to mental health. I know when there is something wrong with my child, like every mother knows. Over those 18 months my daughter has had many physical issues as well, which were looked into but there was nothing found through NHS tests. Ellie has suffered from chronic daily stomach pains, being told by doctors she had ‘IBS’. Pains in different areas of the body especially her legs, a running low grade fever, a fast heart rate, that even doctors were concerned about, (to the point they sent her to hospital and was told to have an urgent ECG, yet again nothing was found). She has also suffered from depersonalisation, fatigue, often feeling sick, severe nausea and flank pain which landed her in hospital again by doctor’s request, back ache and constant swollen lymph nodes. She’s also has consistent UTI (Urinary tract infection) symptoms which include; bladder pain, bladder pressure, constant leukocytes, traces of blood and urinary hesitancy.
As time went on Ellie developed more symptoms such as severe rage and aggression, OCD and the separation anxiety got worse, so much so that I haven’t been able to work since this all started. Our daughter hasn’t left the house in over 4 months, not even for family walks we all enjoyed. She also cannot be left unattended due to her tics as they can grab dangerous objects. Her tics also make her harm herself and others by hitting, punching, kicking and scratching. As a parent I found myself desperate and with no help from the NHS I luckily found a PANS/PANDAS facebook group, where so much help and information was available by others experiencing the same.
I found out about place called the E- hospital where they specialise in PANDAS. We had a consultation call at £350 and blood tests carried out at £1000 where we were told strep can hide elsewhere however when the results came back, they showed nothing major other than the 200 reading and a few other abnormalities, only showing what we already knew. I was gutted and didn’t know where to go from there. I found out that PANS (paediatric acute-onset neuropsychiatric syndrome) was also a thing which causes the same brain issues but it’s caused from anything other than strep, such as infection, virus’s, yeast, vaccines including HPV, parasites in gut and blood, disease, mineral and nutrition problems, food intolerances, general illness, gut toxins, toxins in the environment and even mould. I found out that some medications can also trigger this autoimmune response such as SSRIS or even anaesthetic. So we thought again that possibly the sertraline triggered these symptoms.
After being told it’s most likely PANS we started to investigate further to find out what was causing my daughters many problems. We went to a functional practitioner who ran a number of tests including a GI map test (a type of stool test), OATS test (a type of urine test) and a hair mineral test. All of these tests had to be done privately as the NHS do not do them, nor do they even know about them. When the results came back we were shocked to find out how many problems there were with our daughter. Most of her vitamins and minerals were very low and some levels were high including yeast and quinolinic acid. Some of the high levels explained a lot of her physical and mental Problems. She also had multiple bad bacteria in her gut including Ecoli and H.pylori. Over the 8 years my daughter has had chronic stomach issues, not once did the NHS tests her poo for bacteria. A few of the levels had spiked up which could indicate food intolerances and lymes disease. We then decided to get a private food intolerance test. The results completely shocked us all as there was 17 different food intolerances.
Even after finding all this information, I still had an instinct that something else was wrong. The things we found out still didn’t explain the physical symptoms she’s been experiencing over the past 2 years. We asked the paediatrician again about possible bartonella, due to multiple symptoms and marks on her back. The doctor said they googled it and understood our concern, so she spoke to her infectious disease colleges about it but never got back to us. We were also told that if she did have lymes, then she had already had antibiotics, so it would be gone by now. However the antibiotics she was given weren’t even the antibiotics administered for lymes disease and wouldn’t have been a long enough course to have any effect.
By this point we were fed up and decided to get a private lymes, bartonella and babesia (blood parasite) blood tests done. When the results came back they were positive for Lymes disease and bartonella. Ellie was positive for lymes disease and Bartonella. She also has Chronic immune suppression which also blocks out antibodies and means she is susceptible to illness. We were told these numbers were significant and needed to be addressed, we also found out that NHS don’t test for Bartonella and we’re told the Lymes tests on the NHS are unreliable as they test for antibodies, however if lymes disease is chronic which my daughters is then you won’t have antibodies and after 4 weeks of having the disease, antibodies disappear.
This leads us to why we are making this Go fund me page. Unfortunately the NHS do not treat and do not believe in chronic lymes disease and can only really treat up to 4 weeks after initial bite, even though a lot of people don’t know they have been bitten as bites can be the size of a poppy seed. Lots of people have been turned away by the NHS for this disease. The NHS also do not test for Bartonella nor do they treat it.
Now my husband and I are feeling alone and let down, not even considering how disappointed and anxious Ellie feels. Our daughter’s life had been on hold for over a year. She left school permanently December 2019 due to severe social anxiety and panic attacks. She just feels lonely and lost. She just wants to live a normal teenage life and not have an illness to hold her back anymore. She want’s to go to college this year but fears she may be held back if this illness isn’t cured by then, which will impact her more mentally as she is already so isolated and has no life.
We now need to raise enough money to get our daughter to see a private Lyme literate Doctor. They will use a number of methods on fixing this, which include treatments through an IV, herbal medicine, ozone therapy, supplements through infusions and injections. Some of the medicines will need to come from abroad.
We need to raise this money as soon as possible as we’ve spent over £5800 and I’m no longer getting sick pay from work, my husband is on 80% due to furlough and our savings have gone on the tests and private consultants appointments so far. We have literally hit a wall and it frustrates us that our daughter needs healing but without funds she can’t get it.
We are desperate to help our daughter and she is also desperate for a normal life. She just wants to be able to be independent again, this illness has disabled her and she is unable to do anything herself mainly due to her severe tics that are constant, she never has any brake’s from them and cause’s a lot of distress at times, especially in a tic attack. If she gets treatment eventually all her neurological, psychiatric and physical symptoms will subside and she can go back to being independent, happy teenager. Like I said, due to her tics she is a danger to herself. I also cannot work as she needs to be accompanied at all times and can’t even sleep alone. I am now not getting paid anymore.
We need people to spread this story as far as possible and share her story and our struggles. It may help someone else, in a similar situation.
We would appreciate any donation, anything you can donate will be a huge help.
Thank you for reading our story and we hope that you can help.
Organizer
Del Mottershaw
Organizer
