Three year old child PANS or Childhood Disintegrative Disorder

[Jupiter]

I would like to share the story of our son who is dealing with PANS since February. We are a family living in Germany. Unfortunately I could not find any PANS/PANDAS parent support forum/Group in Germany and I have the feeling that information/research about this condition is very scarce if you just search the web in the German language.

I’d like to reach out to those families are/have been on the same path as us, to ask for your experience and advice and to hear your stories on how you deal or have dealt with it. I know this a long post, but I ask you to read it please and share your experience with us in case you have(or have heard) a similar one. We are quite desperate and broken.

 

 

This is how it started:

Our son turned three years old this March. At the beginning of February he started showing psychiatric symptoms. He was sick at time, which we thought was a cold (our whole family had flu-like symptoms). He would not get better, his nasal mucus was quite yellow-greenish. So we took him to his doctor as we thought he might need antibiotics, which they did not deem for necessary (I have to mention that in Germany doctors are really very conservative with prescribing antibiotics). Over the next week we realized he is very uneasy, fidgety, keeps walking in the living room all the time and just cannot sit still or play with his toys, so we brought him to the doctor once again (we did this three weeks in row), again no problem was identified from their side. Then a couple of days later he got 40 Celsius fever which we treated with Ibuprufen at home which worked well, some days later he all of sudden started complaining that one of his feet hurts and was really screaming and in panic when telling me this. At the next appointment with his doctor they tested with two throat swabs for Strep and Influenza B which both were negative so again nothing was done there. The next days he started talking to himself quietly and would smile or laugh sometimes. Symptoms got more severe every day would pass, he would become absent, one could not communicate with him or ask him something and get an answer. The turning point for us was on a weekend where he got a horrible panic attack and starting screaming for no obvious reason, he would ask me and my husband to hug him but we could not calm him in anyway. This happened two or three times that day. So we of course took him to the hospital. The doctors there could not help us, as they were not specialized in Neuro-Psychiatric diseases. He started developing tics, OCD, extreme cognitive decline, lots of teeth grinding and autistic-like behavior like rocking and head banging, repeating words, etc. His other symptoms include dilated pupils (not always however quite often), bending over and looking through legs. He started putting toys or his toe in his mouth (again he does not do it always but you rather expect this behavior from a toddler). We have not really started the potty-training with him, but before this all happened and he would poo in his pampers he would come to me and insist that I change it, which he does not do anymore. He has what I think severe separation anxiety, as he comes to me every couple of minutes to take him and hug him and is emotionally very labile (starts crying for no obvious reason). He seems to have hallucinations, but we cannot really prove it as he is not able to tell us that. He is most of the time in his own imaginary world with intrusive, mostly very negative thoughts (he keeps saying someone hit him or took his toy from him or damaged his toys) and starts crying.

 

 

Diagnosis and Treatment:

To cut the story short, after weeks of calling and visiting several different doctors, we were admitted to a pediatric hospital after 4 weeks. They did two EEGs (one while sleeping), one MRI from the brain which all were normal. They tested the spinal fluid and the blood for some values and a couple of antibodies which were all normal. Autoimmune encephalitis was ruled out. In terms of  the differential diagnosis two possible conditions remain which are PANS or childhood disintegrative disorder. Since then, he has received two therapy sessions (4 weeks apart ) for three days. In each session he received “Methylprednisolone(Cortisone)” and “Privigen(IVIG)” injections for three consecutive days. Although we have seen tiny marginal improvements (we see this usually 10 to 14 days after each therapy) his condition lapses and varies from day to day. In general we do not see much improvement in his condition and he still has severe psychiatric/cognitive deficits. The head physician (in whom I really believe) is considering Rituximab for the upcoming therapy session. I am scared and unsure about the future. What does it mean that he is considering Rituximab, are we moving in terms of diagnosis toward the childhood disintegrative disorder (my greatest nightmare) or are PANS patients also treated with it? Do you know any similar cases? If yes, what alternative medication has been used for you child which did work and which medication didn’t?

Thank you for the patient reading and your feedback!

 

 

 

 

Edited Wednesday at 09:29 PM by Jupiter