Sonia’s Battle with anti-NMDA, Ottawa, Ontario
I have decided to post a summary of my daughter’s illness, in case it can help someone.
When my daughter initially got ill, it was 15 January 2008 and she was discharged at the end of May. (At the time she was 12 years old.) This period included about 6 weeks in rehab. During this time she started showing signs of recovery after being seriously ill, for approx 2 and a half months. She had stopped eating and was no longer able to swallow. They gave her a nose tube for feeding. She started recovering after they started the feedings by nose tube. Before that she had been treated with IVIG and Methyl Prednisone, but there was no real visible change in her condition after these treatments. Even the doctors were doubtful that these treatments had led to her starting to recover. Perhaps they slowed down the antibodies long enough for her to start recovering on her own.
1st Relapse: By August she was readmitted, and a lumbar puncture was done which indicated that the anti-bodies were even higher than the first time around, although the symptoms were not entirely the same as the first time. On both occasions her short-term memory was affected, she had hallucinations and severe agitations, including movements with her limbs, hands, legs and pelvis. The second hospitalisation she was again given Methyl Prednisone, IvIg, followed by Rituximab. Once again, I cannot say conclusively that any of these treatments led to her starting to recover. I can also tell you that the recovery was not complete, and our hope was that she would continue to recover over time. She started school very, very gradually, but by mid February the school declared that she was not functional in a classroom setting. She had a home tutor but there again she was not functional.
2nd Relapse: By March 13, 2009, I had to have her readmitted for very disinhibited behaviour, confused thinking, paranoid thoughts, echolalia and non-stop talking, etc. She spent two months in the mental health ward. There they removed one medication which they had kept her on to prevent seizures, although there was no conclusive evidence that she had had seizures, only some seizure-like movements. The medication incidentally was clonazepam and apparently in some young people it can cause disinhibition. She was gradually taken off this and was put on a couple of other meds to stabilize her behaviours. In the meantime a lumbar puncture had been done, but by the time the results came back from the States (it took nearly two months, but perhaps a blessing in disguise) she had been discharged but the results of the LP were positive and apparently the antibody count was as high as it had been back in August of 2008. They wanted us to readmit her to repeat some treatments or perhaps try something different which had not been done before ( I imagine something like plasmapherises or Cyclophosphamide). Since she was showing signs of recovery, i.e., the disinhibited behaviours had diminished considerably, her thinking became less confused, the echolalia had disappeared completely and there was no more paranoia, we discussed with the neurologist and concluded to just wait and watch instead of starting another treatment. So it was interesting to note that during this last hospitalisation, there was no actual medical intervention, only mood stabilizing medications. An EEG was done after she had been discharged, which apparently showed some mild slowing. She has been home since 8 May and we are hopeful she will make further progress.
I let her sleep as much as she needs to in the mornings. She also needs to take naps in the afternoons. She gets physically and mentally fatigued quite quickly and has a short temper. She can read and write, also plays music (can read music) and is a good artist.
I cannot tell you what actually helps the recovery process. It seems that the treatments may help in slowing down or reducing the effects of the illness…It is really hard to tell, but obviously recovery can happen without medical intervention(as happened during her third and last hospitalisation), but obviously if the patient is so critically ill and their life is at stake then something has to be tried.
We are now in March 2010 and it has been nearly a year since her last hospitalisation, and she has been steadily improving. She goes to school full-time, is back playing horn with her orchestra, and is medication free since February. I have also managed to get back to work.
She had another MRI in January 2010 and for the first time they saw what was described as a cystic lesion on her left ovary, about 1 cm. She went for an ultrasound several weeks later, which is still not telling them enough, so she will have to go for another MRI in a few weeks. I will post again when we have more information about this.
Results from MRI came back negative. The cyst was no longer there.
3rd Relapse: My daughter relapsed again in May/June 2010, losing all physical and cognitive functionality. She was hospitalized on 20 June and discharged on 3 December 2010. She was treated with IvIg, followed by 6 treatments of Plasmapherises, and CellCept, which was begun on 29 September. The plan is to keep her on this drug for at least a year or two. She is now recovering at home.
October 24, 2011-Today we got results from the MRI and LP that were done in August. The MRI was clear, however the Antibodies are still there. The level was described as being moderate.
She has been recovering well. She regained her ability to speak, hear, talk and walk. She is back at school full-time and is pursuing her musical activities, including playing in the Ottawa Youth Orchestra. She will continue with CellCept and will be retested in either 6 months to a year. I still see some emotional ups and downs, irritability, which are also a part of adolescence, so I think it is a combination of the antibodies that are still present and most likely interefering, and normal growing up.
April 7, 2012– Since approximately 1 week my daughter has been noticing that her left hand is not functioning as well as it should, especially when she is playing her guitar and also French Horn. We went to Emerg and some blood work was done and some of the serum will be sent to Calgary for Antibody testing and tomorrow we will see the neurologist again at the hospital to discuss next steps, further treatment. I know that something is happening and hope that it can be arrested.
April 15, 2012– An EEG and an MRI have been done since my last post. The EEG slowed slowing the right side, consistent with the problems with the hand. The MRI was also done in this past week and results are negative. Neurologist thinks therefore that what is happening maybe a relapse which is at this point only affecting her motor abilities, i.e., the left hand. He has ordered an increase in the CellCept, and 3 courses of IvIg to be done over 3 months. I wish things could move even faster, but IvIg can only be done on 19 April on an out-patient basis.
April 28, 2012-Results from the bloodtest for Anti-NMDA Antibodies are now in and the result is Positive – HIGH.
September 5, 2012 – Since April IvIg was administered once monthly until June, and was then followed by Rituximab x 4 over a period of 1 month. Since losing functionality in her left hand in April, she also started having difficulties walking, then involuntary movements started in her arms, and spasms in her throat that made it difficult to breathe. The first time I saw this, I immediately called an ambulance and she was taken to the hospital where she spent 2 weeks. No seizure activity was noted on EEG’s. She also started to have episodes of movements with her tongue; a kind of stiffening of the tongue over which she had no control. Her speach has also been affected, i.e., it is difficult for her to get words out. This actually already started in early June when she was stammering alot. Since all these things started back in April, the involuntary arm and tongue movements have decreased considerably, episodes of difficulty speaking are also fewer. Her vision has also been affected. I think this started once she was discharged from the hospital on July 10. The comment she made was something to the effect of OMG, I think I am going blind. She still sees blurry, has episodes of double or multiple vision. This affects so many things, including reading, writing, watching TV, etc…Her vision has been extensively checked both a the Children’s Hospital of Eastern Ontario as well as at the world-renowned Ottawa Eye Institute, and everything is fine, but the vision at this point cannot be improved with glasses, as different lenses were tried, and none of them made a difference.
She now goes to school full time with her wheelchair. She is able to walk, but she has episodes where the feet will start to point inwards, and her legs move further apart, and she risks losing her balance. When she does walk, she uses a cane. Her hand and left arm are still not functional, so she needs help completing various daily tasks. She also has no feeling in her left hip. Cyclophosphamide was started in August and tomorrow will be the 2nd treatment of 6. We are hopeful that she will continue to improve.
March 1, 2013 – Antibodies still present, i.e., positive high in serum and in CSF.
Oct 26, 2013 – My daughter underwent a further 6 treatments of Cyclophosphamide, as there were still some neurological symptoms. We are seeing the neurologist on 28 October to determine next steps. I will update here when I can.
April 13, 2014 – Sonia continues to do well.
May 18, 2015 – Sonia is continuing on the path to full recovery.