Two years in hell, two years gone to hell.
My son had a sore throat and a high fever during the summer between the eighth and ninth grade. We didn’t seek any help for it, and after a week he was healthy again. A few days later he started to doubt if the food was eatable and he checked regularly the expiration date on all packages. He also started to wash his hands and blow his nose compulsively. He spat a lot. It wasn’t a big issue, since these new behaviours didn’t limit him in his everyday life. To my surprise the son suddenly wanted to go with me to our summer cabin during the days. I got excited, I thought that time had passed when he wanted to hang out with his mom. Far later I would come to realize that the son suffered from separation anxiety.
The school started and after three weeks, everything escalated. One day the son didn’t show up to the first class, they found him in the bathroom where he washed his hands compulsively. There was blood in the sink, the hands were torn. Suddenly he developed eye spasms, he blinked with his eyes forcefully all the time. He started to reject food and the majority of the portion went into the garbage.
I googled and found PANS/PANDAS. BUP (The psychiatry department for kids and teenagers) wasn’t helpful, they meant that PANS/PANDAS is a controversial diagnosis that needs more research. One doctor at the medical centre took pity on us, after he had read an article in a doctor’s magazine about PANDAS, and he subscribed antibiotics for fourteen days. The doctor also send remittance to a child clinic for further analysis.
The paediatrician agreed that it probably could be PANS/PANDAS and gave a treatment with Ibuprofen all according to the guidelines from BUP IP in Stockholm, its one of the two clinics in Sweden that does research on PANS/PANDAS. The paediatrician contacted BUP and asked them to write a remittance to BUP IP.
The paediatrician encouraged me to do anything to get the son to eat. I did everything and then some more. I spend six hours a day on cooking and serving food. I adjusted the food situation extremely and it helped a little. But it was extremely provocative when the son rejected my food and I couldn’t figure out a better way to get him to eat. And how the son suffered. The stomach screamed with hunger, he wanted to eat but he just couldn’t get the food inside of him.
The son suddenly felt better. The compulsions decreased, but above all this the son could eat more food. I bought disposable gloves and then he didn’t have to wash his hands as often. The chapped and sore hands healed. The test results for streptococci and borrelia came, they were negative. The test result for mycoplasma got delayed and was put on hold for a month, but it was positive for both IgG and IgM antibodies. The paediatrician subscribed Doxycycline for fourteen days.
Nov, Dec 2017-Jan 2018
The son got worse. He was now fully convinced that all food were poisoned by dirt and bacteria and that he would die if he ate it. For example, if he accidently moved the foot a millimetre then he visualized how all the dirt and bacteria swirled up from the floor and landed on the food, and then the food would be poisoned. It became necessary with nutrition beverages to keep him alive. He dared to take them because I explained that they were manufactured in factories with the same hygiene standard as the factories that manufactures medicines, and that the foil on the nutrition beverage ensured absolute cleanliness. One day he was very late coming home from school. When he finally got home, he said that he had been feeling so weak that he had to walk and lead the bike.
The son could suddenly not fall asleep and he only slept for four hours a day. His anxiety of dying of blood-poisoning or an infection was on repeat in his mind. He had separation anxiety; he couldn’t let go of me when it was time to sleep. Maybe because I functioned as a help-tool, I could help him so he would function better, than to try to figure out things on his own.
One night I left him alone, according to the advice I had been given from the expertise about not enabling the OCD:S. He wandered around all night and told me that he had started to cry. My sixteen-year-old son that I had not seen cry since he was very little. That night he only slept one hour and the next day in school, he fell asleep in one of the classes. The sons highest wish was to continue to go to school, so I decided that I would do everything, so he could continue to do so. The son was fully aware of the burden it was for me to help him, and he thanked me for helping him.
The paediatrician increased the Ibuprofen dosage to maximum, but no effect. The son didn’t dare to take Melatonin because he was convinced that the pills would make him fall into a deep sleep, which he would never wake up from. I explained and comforted ´´It´s PANS that’s doing this to you. Don’t you agree´´? ´´Yes, why else would I bee like this´´.
The son had severe OCD:S, for example he couldn’t grab the handle on the car door, even though he wore disposable gloves and thick mittens. He held his breath when he passed certain areas at home and in school, to avoid toxic air. He had hallucinations, he saw scabs on his body and dirty stains on the sink and the kitchen table, that weren’t there. He stopped using his computer, because he was convinced that the keyboard was covered by dirt which couldn´t be wiped off. He became sensorial hypersensitive and every little movement against the bedding, he experienced it as it caused life threatening gashes on the skin. He got problems with the urination, he felt the need to urinate mostly all the time, but he couldn’t pee. He stopped swallowing his saliva completely, because he thought that there were bacteria and dirt in it. He collected the saliva in the mouth and spat it out in the sink.
The paediatrician subscribed Cortisone for five days and it helped a bit for the OCD:S, the sensorial hypersensitivity and the urination, but nothing against the other symptoms. The paediatrician asked BUP IP for advice and he found out that he absolutely couldn’t continue the treatment with Cortisone.
We went to the children’s clinic and met the paediatrician. When we spoke on the phone the next day, he stated that ´´He is really very sick´´. The paediatrician contacted BUP and begged them again to write a remittance to BUP IP, which they hadn’t done yet.
The son and I went through it day by day, we suffered severely. Suddenly the son wasn’t capable of taking the nutrition beverages and the situation turned critical. The paediatrician then went against BUP IP:S guidelines and he followed the international guidelines instead. He subscribed long term treatment with antibiotics and maximum dosage of Ibuprofen. The son’s wellbeing improved a little. The eye spasms disappeared completely and the eating got better. The best part of it all, the son started to draw again, which he hadn’t done since he got sick. Finally, a remittance was sent from BUP to BUP IP, four months after the paediatrician asked for it the first time.
I called BUP IP to explain how severely sick the son was, how he got anxious and miserable of waiting, and I asked them to take particular consideration of it. I got the answer that it probably wasn’t any problem, because you could have a snack while you were waiting. It felt like a very peculiar answer, since the son couldn’t eat.
The son went to BUP IP for evaluation. They stated: ´´It is very rare that we see such severe OCD here in the reception´´ (CY-BOCS 38, CGAS 35) and ´´We know you are making huge adjustments and it will only make it worse and worse´´. With the next breath they said that nothing indicated that it was PANS/PANDAS.
Their recommendation was treatment with therapy and if necessary, antidepressants, which they offered the son to get at the reception in Stockholm. We turned them down since the son was in a too bad state, he didn’t have the strength for travels and treatments.
Shortly thereafter, the son´s wellbeing dropped fiercely to the worst state ever. He couldn’t go to school anymore and he missed everything that includes with graduating the ninth grade.
He had OCD:S twenty-two hours a day, he could barely speak. He said two words and repeated them a hundred times before it loosened up till a full sentence. One meal took two and a half hours to accomplish and then he only had two bites. Every time he went to the bathroom, it took at least one and a half hour, the shower took two and a half hours. He has described it as, that he got a feeling that it didn’t turn out to be right, that he had to start over. Sometimes the brain didn’t function at all. When he had finished one moment, he couldn’t figure out what to do next and therefore he started all over again.
There was nothing left of my healthy son, as he was before he got sick. It was like he had been exchanged with a robot with syntax error in the programming code. Though that robot had a very human look, which shined with fear and despair. The look told me that the son was still in there, locked in behind the robot’s steel-shell. I cried and cried the moments he wasn’t in my surroundings. I was so exhausted. One time I laid in fetus position on the kitchen floor and whined ´´They have to put him to sleep, I can’t take this anymore´´.
The paediatrician then added Doxycycline above Spectramox and Ibuprofen as treatment. Partly since the son had earlier tested positive for mycoplasma and there were similarities with the crash then and now. Partly because the son’s siblings had a tedious cough and there were many students at the school coughing, the son however did not cough.
After one week Doxycycline, the son glimpsed by for a minute, he could get a whole sentence out on the first try. The wellbeing improved slowly, slowly and slowly, but it was still on an unendurable and unhuman level.
After three weeks with Doxycycline the son could suddenly for the first time in eight months, ingest adequate number of calories a day from food. The son’s disease no longer felt life-threatening. I and the son endured the days completely separated from the remaining family’s life. The son’s compulsion made it so he never could go to bed until 3 at night. I used to sit then in the son’s room in an office chair, so he would dare to doze off, wake up, doze off etc. to finally fall a sleep around five in the morning.
After seven weeks with Doxycycline (plus the maximum dosage of Ibuprofen for five months and Spectramox for three months) the son’s wellbeing were so well that we could travel to the child clinic for some test samplings. When I called to check on the test results, I found out that the lab no longer performed an analysis of mycoplasma titres. I begged and pleaded ´´But everything depends on those titres´´! The paediatrician managed to get the lab to analyse it anyway and bingo, the titres had increased. However, the doctor that had analysed the test encouraged the paediatrician to not to tell me about it, because the result of increasing titres doesn’t show if it’s a passed infection or a present one. The paediatrician told me anyway and the result from the test was enough for him to continue the treatment with Doxycycline and furthermore he wrote a remittance to BNK in Gothenburg, the second reception in Sweden that research PANS/PANDAS, for a second opinion.
Slowly the wellbeing improved and suddenly the son could do things that was inconceivable before. ´´How could you do that´´? ´´I didn’t get a feeling in my mind that told me this is dangerous´´. He could sit by the computer again which increased his quality of life enormously.
But then the phone call came from the paediatrician when he informed me that he was ending the treatment with Spectramox and Doxycycline, because BUP said that BUP IP judged that the son didn’t have PANS/PANDAS and that the son would not have treatment for those types of illnesses. I cried, snuffled, begged and pleaded to the paediatrician to continue with the treatment during a one-hour long phone call, but it didn’t help. Some day later a letter came from the paediatrician where he informed me that all antibiotics treatment would end immediately.
No shame on the paediatrician. My understanding is, when you consult a colleague with more experience about a severe and complicated disease, the whole point is to follow the advice you get. The paediatrician therefore had no other choice.
I called the BNK in Gothenburg that had just received the remittance from the paediatrician. I got to talk to a senior physician, a specialist with kids and teens psychiatry. They listen to me and then made the decision to subscribe Naproxen, Spectramox and Doxycycline until the son could get an appointment to BNK by the end of august. I ended the contact with BUP so they wouldn’t get a view or opinion about the son’s treatment from now on.
When the summer came with heat and sun, the son could follow his dad and his siblings out for a boat ride and swim in the ocean. At that time, he hadn’t been outside the front door since the middle of march. I wasn’t in on the boat ride; I was at home and asleep.
We went to BNK in Gothenburg and met the senior physician, a specialist with kids and teens psychiatry and also a specialist with kid’s neurology. They concluded that the son probably had PANS and that the treatment with Naproxen, Spectramox and Doxycycline would go on. The paediatrician back home was cooperating later with BNK, and made sure that the son got further valuation to exclude other illnesses. It became LP, MR EEG and a lot of blood samples, although no samples to look for infections. All the test results were without a remark except Ferretin-P which was low.
Nov 2018- June 2019
The son felt better and better but suddenly the wellbeing decreased again, he probably caught some virus infection from his four siblings which had coughs and fever. Then the paediatrician after some consultation with the senior physician at BNK, made a decision about treatment with IVIG.
The first treatment was in the middle of December. There were instant improvements, but unfortunately the son caught some infection with coughing and a sore throat after the IVIG and the infection caused deteriorations. He also caught a staphylococcus infection in one of his big toes just before the second IVIG by the end of January and he got a third antibiotics for fourteen days.
There were also improvements after the second IVIG however the son suddenly struggled with putting two and two together with his sight and hearing. The son was really freaked out and so was I. If the sight and hearing didn’t work, what was left for the son in his already limited everyday life, where the only occupation that worked was to watch TV and sit in front of the computer. New tests showed a present parvovirus infection. It was a complete mess of improvements and deteriorations and it was hard for the paediatrician to draw any conclusions about the effect of IVIG.
The entire spring that followed, the son felt as if he were having the flu but without the fever. The throat was really red with phlegm, but no other infections were found. To rule out that it wasn’t Spectramox and Doxycycline that caused the throat problems, both kinds were removed with a promise of IVIG within 24 hours in case the son would totally collapse.
He didn’t, however he deteriorated slowly and slowly. It was tough in a new way and it was a huge hindrance, the life with PANS were breaking me. At a school meeting about the younger brother, I heard myself suddenly say ´´You should probably place big brother in a boarding school, I can’t take it any longer´´.
New results in the middle of June showed the parvovirus infection, but with a question mark if it was a past or a present infection. The paediatrician however made the decision to treat with IVIG for a third time by the end of June, and there and then it turned, the son regained his life.
July 2019- Nov 2020
After the summer the son could start high school after he had been on sick leave for sixteen months. I could for the first time in twenty-two months leave the son and be reassured that he could eat and go to bed at night without my help. During these twenty-two months I had helped the son with all the meals and nights, all of them.
It had been tough for the son to reconquer his life, from being severely ill and helpless to almost completely healthy and independent. He has had almost 100% presence in school. He has started playing floorball and now this fall he has started with theatre. An amazing milestone was when he was a way on a school trip to Romme alpine for four days.
The son got six pulsars with Dexametason from October until March. In the middle of April, the son got for the first time as an adult, go to his new doctor which is a rheumatologist. Since the middle of July, he’s on a low dosage with cortisone that gradually has been reduced and will be removed entirely, when the new treatment with Azatioprin has started.
The son is almost himself again. He still has some compulsions but they don’t limit him in a problematic way in his everyday life. The adult psychiatry has analysed him and come to the conclusion that he is that well, that he wont need neither treatment with KBT or SSRI.
Sure, we live with a new normal in our everyday life, but that is more than ok, considering how we have had it in the last three years. The relief is indescribable, that it now states in the son’s journal that he has the diagnosis: F068 Pediatric Acute-onset Neuropsychiatric Syndrome (H), and that he will be treated with intravenous Cortisone and IVIG if he gets worse again. The adult psychiatry agrees with the rheumatologist about the diagnosis and the continuation with immune modulating treatment.
It will probably take a while before it sinks in, the ´´war´´ is over.
PPN Guidelines for Diagnostics and Therapeutics
PANS Research Consortium, Guidelines:
Part I—Psychiatric and Behavioral Interventions
Part II—Use of Immunomodulatory Therapies
Part III—Treatment and Prevention of Infections
A Pediatric Infectious Disease Perspective on Pediatric Autoimmune Neuropsychiatric Disorder Associated With Streptococcal Infection and Pediatric Acute-onset Neuropsychiatric Syndrome.
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