Could my son have pans?

[MamaSadie]

I've just learned about PANS and so I haven't done very much research yet, but I'm realizing more and more that every problem that my son has ever had are a symptom of this illness. My only question is that since its my understanding that PANS occurs because of an infection, how could this be the case for him? The only infection I remember him having was a flu he had around the age of 7 months (and he began suffering from his issues from birth) and then a flu at age 4. I don't remember being sick while I was pregnant with him. I did have an incident when I was 20 weeks along with him, I began having a lot of back pain after drinking the glucose yuckyness for the gestational diabetes test, I started having contractions, they determined that I was in danger of going into preterm labor, they injected me with steroids, and I got better. No fever though. I will list his symptoms from birth.

From birth, the first things I noticed were his lack of eye contact, complete discomfort while being cuddled (he would push me away or wriggle himself away, even while nursing) and his apparent anger. He would be very red in the face and cry a lot for no reason that I could find. He also really didn't like having his diaper changed at all, he would make very angry faces and cry and get red. He still needs frequent promoting to make eye contact and still is very uncomfortable with touching.

When I began giving him solid food, he showed a strong dislike for most foods. I thought he was only being stubborn and so I was persistent with him, but he would actually gag and cry and at times vomit. This lasted until he was about 2 and I stopped trying to make him eat things he didn't like, figuring that he was just picky and that I should calm down. He still refuses to eat most foods.

At 9 months, he began banging his head quite forcefully on the floor, walls, or furniture. When he began doing this, he would do it spontaneously, seemingly for no reason. He did this until about 18 months, the last few months he would do it more often to get my attention. I asked his pediatrician about it and he told me that it was not uncommon and he wouldn't give me a baby helmet or suggest anything to help. I switched my children's pediatrician at that point.

As a toddler, he showed a lot of aggression and rage, he was somewhat violent with me and his older sister, but I figured it was normal toddler behavior. When he was not being aggressive he was very energetic and silly. At around 3 he suddenly went from aggressive to timid, nervous, and anxious, but still displaying the extreme hyperactivity and goofyness at other times. At about 4 years old he developed a third state, which was very withdrawn, depressed, and sullen. He still goes between these three basic states: happy (very hyper), timid (anxious/panicked), or sad (withdrawn, depressed).

When he was around 2 he was starting to talk in sentences, but regressed almost completely by the age of 3 (almost no speech at all), and didn't get back to sentences until almost 4. He was still hard to understand until 4.5.

At 4 he had about a week of bedwetting.

Since starting kindergarten (it's been 8 and a half months) his school has noticed the following: depressive moods, social problems (unable to make friends, "telling on" other children frequently, even when they are across the room from him), wandering around the room and being unresponsive, saying things that make no sense (like telling school psychologist very seriously that she has a dirty sock under her desk), not focusing, not being able to complete work independently (needs one on one attention to complete any work), needing constant promoting to do anything(even throwing away his garbage), anxiety, problems with fine motor skills

He has recently been whispering to himself almost daily

He was recently diagnosed with migraine headaches (not sure if this is relevant)

I strongly suspect sensory processing disorder (hypersensitivity to light, sound, touch, and some need for tactile simulation (like the head banging as a baby. He still does things like throwing himself down or against a wall, today he was rolling on the bed at the doctor's office after I repeatedly asked him to be still, things like that)

He recently has had more trouble with bedwetting

I do notice that his eyes look dilated sometimes when he is in his panicked state. I never knew what that meant or if I was imagining it.

He has some ocd-like traits (things have to fit perfectly on him, he hates tags, waistlines and socks have to be straight, he always takes his shoes off immediately when he comes in the house, he can't stand having any wet or dirty spots on his skin or clothing, he always puts the toilet seat down... these are things some grown people forget, this is why I mention this. I realize this does not mean ocd, and that people who suffer from ocd have much more to struggle with, these are just a few things I notice that give me suspicions)

His school did an iep and concluded that he is not eligible for special education, they do not consider him autistic. They suggested I contact community mental health for the possible depression and anxiety. I did so, we qualified for home based services with a wonderful therapist who has helped us with a couple of things, but honestly this is barely scratching the surface. The school also suggested OT with someone who specializes in sensory processing disorder, and we are in the waiting list. His pediatrician is aware of the issues and thinks he might also have adhd... I'm not really wanting to explore that just yet. I don't think he is THAT hyper.

I really feel like PANS explains all of his symptoms, I'm just not sure where the onset would have been our if I'm even looking in the right direction. Maybe I'm just grasping at straws here. Any ideas?

[sf_mom]

It is very possible your son has PANS. His issue since birth indicates he might have picked something up from you in-utero or via breast milk.

 

All three of our children have gestational TBI 'Tick Borne Illness'. They are diagnosed with three specific TBI infections: Lyme, Bartonella and Babesia. Two of the infections are known to pass gestationally from mother to child and via breast milk: Lyme and Bartonella. Our older DS appeared to have classic Pandas (later diagnosed with PANS) while our other two children had similar symptoms to your son and had spectrum issues. Our DDs language regressed at 2 after MMR. All three have been successfully treated for PANS - six years now.

 

Do you have a known tick bite or any obvious health issues? Do you have or had a household cat? Bartonella is often transmitted by a cat scratch and is referred to as 'Cat Scratch Fever'. My symptoms were pre MS - Fibromyalgia like in nature.

Edited May 17, 2016 by sf_mom

[MamaSadie]

Hi, sf mom, thank you so much for your reply. We do have a cat that has been with us since my son was a baby, and have had other cats in and out his whole life. I have never been aware of any ticks, but that doesn't mean they weren't there. I've personally had symptoms of nerve pain that I've suspected were fibromyalgia but that my doctors have failed to diagnose, since around the time my son was a baby. The first time I noticed these pains in myself I remember was one night when he was a baby when I couldn't get warm, I had a space heater and blankets on me and I hurt all over in my bones and it just seemed like I couldn't get warm. Since then I've had nerve pain. My mom and her father also had lupus, and I saw that children with pandas or pans often have relatives with autoimmune diseases.

How would I go about finding out if my son was exposed to one of the tick Bourne illnesses? Would his pediatrician be able to do testing for this? Are there specialized diagnostic centers for children with symptoms of pandas or pans? I saw that many medical professionals are skeptical of pandas and pans and that this is a relatively new topic being explored. I find it fascinating, actually, and I don't think it's a coincidence that children and adults get sick with a medical illness that affects their brain and then they begin to exhibit signs of mental regression or behavioral issues. I think that this could very well be how most "mental illness"begins, through a trauma to the brain from an illness that causes changes in thinking, emotion, or behavior. It makes a lot of sense. Anyway, I'm just kind of wondering where to start. I'm really starting to believe this is what has caused so many problems for my son. He is such a sweet boy and it breaks my heart that he has such a hard time with everything. Thank you again for your response.

[caretothepeople]

Check out the International OCD Foundation or PANDAS Network. They are both organizations that have info on PANDAS that could give you more info and support.

[MamaSadie]

Thank you, I will into those!

[sf_mom]

Chronic Lyme is often misdiagnosed as Lupus, MS, Chronic Fatigue, ALS, Parkinson's and Fibro.

 

I probably picked up Lyme as child camping with my family in Northern MN. I only had a handful of minor symptoms prior to pregnancy that were not bothersome i.e. night waking between 3 and 4 a.m. During and after pregnancy more and more symptoms developed. In my second pregnancy with twins I broke out in a full body rash that our OB thought was PUPPS. I also had edema with only trace proteins at the time. To help with the intense itching from rash my Dr. prescribed steroid shots every other day. After starting steroids, my blood pressure skyrocketed and I develop mild regular seizures of about six a day. As a result of my bad state.... about 10 days on steroids shots my twins needed to be delivered.

 

Pregnancy and other stressors like vaccines, illnesses, broken bones, surgeries are known to kick off Lyme symptoms. It is thought the immune system was probably keeping things in check until these life events happened.

 

Most LLMDs have experience in treating PANS/PANDAS or Lyme induced Autism symptoms. Where do you live?

Edited May 19, 2016 by sf_mom

[sf_mom]

I recommend watch the movie UNDER OUR SKIN.... It will help to get you up to speed quickly on Lyme.

 

http://www.underourskin.com/#home-underourskin