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Our paleo and PANDAS story
Paleo...
Our paleo story began around Jan 2012 a little after our youngest son, Kaine, was born. My husband, Damon, had been experiencing a lot of bloating/gas issues with his stomach. He will likely kill me if he ever sees this but seriously, the guy could clear out a room with just his burps. It was as if he had constant indigestion. He was also complaining about not being able to lose the couple pounds that lingered in his midsection. I heard about the paleo diet from our chiropractor and a friend, who were both in the best shape of their lives since high school because of paleo. I researched about it and persuaded Damon to try it out and see if it would solve any of his issues..."Just give it a shot", I said. He went at it alone for almost a week and was already losing steam because of the bland and easy food choices he made to accommodate a paleo menu. It mostly consisted of grass-fed hamburger patties, some plain chicken and salads he threw together. He got bored real fast! But he was feeling better and had already lost weight. I decided to join him and dove right into creating meals that had flavor but still fit the paleo guidelines and we all started eating paleo. After 30 days we pretty much ate paleo 80% of the time. We did a "cheat" day about once every two weeks and this new lifestyle was working for us! Damon and I both got leaner, lost fat, I had a flat tummy, had more energy, didn't wake up sore and just felt better!
Somethings a little off...
Around the same time our oldest son, Lucca, was 3 years old. He had been in preschool for about 6 months and was doing great with learning to read, write and making friends. I was amazed with what he was able to do. But he had some weird phases that started happening right when he turned 3 that started to get worse and more frequent. He was all of a sudden very hyper and was having a hard time sitting still, he couldn't get dressed by himself without some help (he was very independent previously), he started having accidents at night (he was potty trained at two), sleeping through the night was becoming a problem and nightmares became the norm, had bouts of OCD, and just seemed off at times with listening and focusing. There was always a reason for the behaviors individually though. He had just started preschool, which created a different routine that he had to learn and explained the tough time getting him up and focused on getting ready. We transitioned him to a big boy bed which explained the trouble with sleeping, nightmares, and accidents. The OCD tendencies would come and go so quickly that we chalked it up to a phase. The trouble sitting still and hyper behavior was a different story, we kept being told he is just an energetic BOY, no need to worry. His teachers weren't concerned because it wasn't consistent, he could focus on things and was excelling academically. They just said he had a little more energy then most and they were working on him "calming" his body down. I became concerned by this hyper behavior because he was always such a calm easy-going boy who would listen. We had always traveled with him, took him to restaurants, parties, stores, etc and would receive compliments from friends, family and strangers about how well behaved he was, how well he listened, how they wish their kids acted like Lucca and to keep up the good work.
Lucca's symptoms continued to come and go and it literally made you feel like you were becoming a crazy person not knowing if it was really happening. We were also fighting allergy season (he's allergic to mold and cats) which was not helping his asthma and was causing a lot of respiratory issues. He was on allergy and asthma meds and was taking ibuprofen for the mild fevers he got associated with the respiratory infections and other colds/viruses here and there. But his strange behaviors started getting less frequent and you almost started to forget about them. At four years old the preschool was still working on controlling his body. He started slamming his body into the walls and the floor during playtime, but they said he's probably just a tough kid because he wasn't hurt and was fine, and they still weren't overly concerned with his extra energy.
A diagnosis, sort of...
We decided it was time to move into the suburbs and find a neighborhood with good public schools. Preschool is expensive (especially in the city) and we wanted a break from that expense. Of course things didn't go as planned and we had to enroll Lucca in a private kindergarten. It was a parochial school and they really didn't deviate from the curriculum which was not very helpful since Lucca was reading and writing already. At our first parent teacher conference, his teacher expressed he had a lot of energy, had trouble staying in his seat, taking the longest route to get around in the classroom but was smart, sweet and funny. He scored well above where he should be, but they never gave him extra work and I started to think his behavior was because he was bored. Then, we got the email. The email that started out with...Lucca is a good boy and I like him but today his energy was over the top. At one point he was spinning around in circles in the middle of the classroom like a dog chasing his tail and she wanted to check in with us and see if anything had changed with his diet, medication, etc. Nothing had really changed, we were still paleo but I gave Lucca a lot more "cheat" days, because of play dates, b-day and school parties, and just letting him be a kid. At this point, we knew we needed to talk to someone. His energy was getting more and more out of control, he wouldn't make eye contact much anymore and his defiance at home was escalating. The nightmares, anxiety at bed and bedwetting were becoming more and more frequent. He had anxiety about robbers, zombies, being sick, school, etc and it became difficult to talk him out of these fears. Lucca would cry uncontrollably even when I was laying right next to him. Some things we blamed on him being a 5 year old boy and that's just how some kids are. We blamed the sleep issues on the moves (we moved twice in about 4 months), new houses and new school. The poor handwriting, inability to sit and focus, and constant movement was blamed on boredom at school but the spinning in circles I could not find something to blame that on.
So, in Dec 2013 we met with a therapist and discussed Lucca's behavior issues. Lucca couldn't even sit still on the couch while we spoke to the therapist. He literally was climbing, crawling and just jumping out of the seat. We explained the constant movement, how he started having trouble making friends because he was in their faces, on top of them, didn't respect boundaries, or just didn't listen, how he reverted to baby talk (which didn't help with making friends), lack of eye contact and his trouble falling asleep and staying asleep. The therapist diagnosed Lucca with ADHD (Hyperactive) and my heart sank. It didn't make sense to me, this was not a kid that ever presented hyperactivity until he reached 3 years old. I very reluctantly accepted the diagnosis and we jumped into therapy. Lucca started to do better, especially after he was over the many colds/viruses that he got over winter. We did reward charts and worked on him calming his body. He started reading in his bed at night to help him fall asleep by himself and it all started to work. We limited his liquids before bed and no more accidents. He was making progress and it was great! We had an awesome summer and he no longer had asthma (outgrew it and only had meds when needed, mostly when he was sick). We decided Lucca needed to be challenged more and moved him to a public school.
A complete 180...
The therapist suggested we not tell the new 1st grade teacher about the ADHD diagnosis and see what her take was on Lucca, not jade her opinion prior to them meeting. When I received a phone call from his teacher about a week or two into the start of the school year I prepared for the worst...so imagine my surprise that she just wanted to introduce herself and say what a joy Lucca was to have in her classroom. She welcomed us to the school and appreciated Lucca's patience in learning the new rules. I'm SORRY, WHAT!!!??? Lucca's patience!!! I really started to feel like I was crazy and maybe it was just boredom at his old school and he was just an energetic boy. I was baffled and beside myself, even Damon was shocked. Things seemed to be better and it was a relief!
Our relief only lasted about a month though. Lucca started acting up at school again and his teacher contacted us. We let her in on Lucca's ADHD diagnosis and set him up on a program called Check-In/Check-Out. It allowed Lucca a break to discuss what he needed to work on in class and a reward system. The program seemed to fit him and he was doing pretty well. He continued the therapy and we worked with him on calming his body and it seemed better... not perfect but better then before. His writing was completely legible, he made friends well, he was able to fall asleep on his own most nights (but still wouldn't sleep through the night) and accidents had diminished. He graduated from the Check-In/Check-Out program and was doing well in school again. Then, we finally found a house to purchase and moved again for the third time in 2 years!
Ups and downs...
The move was difficult and it was 5 days before Christmas 2014. Moving in general is tough, but moving in the winter with 2 young boys right before Christmas is hell and I don't recommend it to anyone!! The winter was bad and we were snowed in quite a bit, which made everyone a little stir crazy. The boys couldn't get along with each other for more then 5 minutes, were constantly fighting and it became impossible for me to get anything done. They had this brand new play area just for themselves and they couldn't get along long enough to enjoy it! I was so happy that school was starting again because I couldn't take it anymore! I did worry though because this was Lucca's third school in 2 years. But we had already done a little tour before winter break and Lucca met his new teacher, who he seemed to like. She was impressed by his reading and I told her about his ADHD diagnosis prior to his arrival to prep her. She didn't seem concerned and was confident she could work with him. Of course, one of us got sick right after Christmas and we passed our germs to each other. We probably had some sort of flu or bad cold and started the common routine of ibuprofen for the fevers.
It becomes pretty stressful when everyone is sick and Lucca wasn't making it any easier. He just wouldn't listen at all and was moving/jumping/climbing all over the place. He started with the nightmares again, the anxiety, bedwetting, and frequent wake ups in the middle of the night to the point I slept in his bed more than ours. We again blamed it on the move, leaving friends, new school and new house. Then the day after he started the ibuprofen, for the fever, he was all of a sudden a different kid. He wanted to help me, help and play with Kaine, he sat nice, he was listening to directions, took a shower all by himself (every day tasks had become hard for him to do alone). I even texted Damon stating "We had an awesome day and Lucca was a great help" ...it had been a long time since I could say that. At bedtime Lucca said to me "Mom, I'm going to listen like this everyday, because today was a great day, we had so much fun!". I instantly felt like the worst parent in the world. I started thinking I expect too much from this kid, I yell too much, I need to be more patient, he's only 6 years old, take a deep breathe, don't be so hard on him...I cried. I felt like I was failing as a parent. Why couldn't I keep my cool with this kid but I also thought why can't this kid just listen to me and calm down every now and then!!?? Starting the next day, I worked on my patience and I felt like Lucca worked on his listening but both quickly ended.
We're losing him...
Lucca continued to struggle at his new school. After a couple of months his teacher called me and was unsure whether it would be good for Lucca to move on to second grade. Academically he was fine, but she wasn't sure he had the ability to focus or sit still long enough to handle the demands of second grade. Damon and I needed to figure something out fast! Damon had read about neurofeedback and we decided to give it a try. It's expensive and not covered by insurance but we were willing to try anything. Basically it is a way to retrain the brain and we started with the brain mapping. Well wouldn't you know it... his brain mapping didn't show the typical ADHD issues and he had a weird "blip" on his brain waves. The therapist was still confident neurofeedback would be successful but we needed to go at it a different way.
Lucca had started becoming more and more irritable and harder to control. He was a handful at home and now started getting in trouble at school more. His handwriting had become illegible (when we could actually get him to write), he struggled and no longer liked to read, he didn't like his favorite subjects anymore (math and science), his defiance was through the roof, he started having accidents in public and at night, his energy was crazy, he wasn't eating as much and started getting super picky or not eating at all, his coordination was off and no longer was good at sports, he constantly was slamming himself into walls and falling on purpose, it would take two hours for him to fall asleep because of anxiety, some minor OCD things started happening (he had to have certain doors closed and certain lights on), his pupils were always huge, there was little to no eye contact, fidgeting/drumming with his fingers, his hands were constantly in his mouth and he started talking/whispering to himself (to the point I started to question his sanity). Lucca also started having huge anger/rage fits towards me and Kaine, it no longer felt safe leaving them alone together. Lucca would get so worked up and want to attack that I would have to hold him for 5-10 minutes until he would calm down enough that I felt comfortable letting him go. I was told daily "I hate you!" and I felt like I was dealing with a 15 year old girl not a 6 year old boy! The scariest thing was after our first session of neurofeedback, we went out to eat and after dinner Lucca ran out of the restaurant, stood on the patio table and started screaming and talking to himself. I yelled at him to get down and asked him what he was thinking and doing...the kid had no idea what I was talking about, he had no idea he had been on the table and he had no idea what he was screaming. Something wasn't right and this wasn't ADHD. I didn't know what was happening to my sweet, affectionate, lovable, funny, smart Lucca and it was breaking my heart!
Could it be...
The next morning Lucca woke up around 5am with a fever. I started the usual routine of ibuprofen and Damon said maybe this is why he has been acting so weird/odd/off/crazy...he's been coming down with something. I thought well strep is going around so maybe that's what he has. Instantly, a lightbulb went off in my head! PANDAS!!!!!
About a year and a half prior, I had heard of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) from my dear friend who worked at a preschool where one of the little boys was diagnosed with PANDAS. She had never heard of it before and gave me a little run down because I had also never heard of it. I remember I tried pegging Lucca into the diagnosis but he never had strep to our knowledge (he only ever had fevers for a day or two with a sore throat), had no tics or obvious OCD (I really didn't understand all his OCD/tic tendencies until later), and all of his other symptoms we blamed on something else. When I had heard about PANDAS it didn't fit but now things were different, all of his symptoms had escalated to a point that Lucca was no longer himself. PANDAS seemed more like a possiblity now.
Around 8am, Lucca woke up and was smiling, laughing, making eye contact, listening, sat nice for breakfast (sitting long enough to eat was a huge struggle and so was eating), asked for permission before he did something, played nice with Kaine and was just a completely different kid from the day before. I immediately went into research mode and searched online for anything and everything on PANDAS. I learned one of the hardest parts of PANDAS is actually getting a diagnosis. It is still relatively new and some doctors have never heard of it, don't believe it, or don't have enough knowledge on it and don't want to learn about it. I called our pediatrician's office and asked if any of the doctors were familiar with PANDAS, I was told one of the doctors was and I made an appointment immediately that day.
Please listen to me...
I knew I had to explain everything to the doctor but the whole appointment didn't really go well. The doctor looked at Lucca and said he looks like he has ADHD and didn't see a need for a throat culture because he didn't show any signs of strep. FYI, strep can hide in many places in the body and doesn't always show up in throat cultures. I kindly asked for a throat culture any ways and reluctantly he ordered it to "put my mind at ease". Lucca was already having issues with being at the doctors office and was all over the place (the ibuprofen was wearing off) and didn't want anything going in his throat. The nurse tried to do a throat culture but barely made it to the back of his throat and I knew I needed to find a new doctor. The throat culture (if you can call it that) came back negative and we were on our way back to the computer to find a new doctor.
I finally found a doctor close by that had a ton of knowledge on PANDAS...it was his specialty, Jackpot!! Now, we had to wait about a week to see him. I called the neurofeedback therapist to reschedule his sessions and explained the situation. She actually had heard of PANDAS and was listening to me! She believed PANDAS was the reason for the "blip" on his brain mapping and why his brain didn't present typical ADHD. She agreed that the symptoms seemed to fit PANDAS but I needed to find a good doctor. She said it was best to heal his body and then we could work on his brain. I got off the phone and finally felt like I could breathe again and that I really wasn't crazy after all!!
Longest two weeks of my life... Lucca finally met with the PANDAS specialist and he was skeptical when I told him Lucca's symptoms. Lucca didn't present like a typical PANDAS patient, he didn't have noticeable tics and didn't have what I considered OCD symptoms. Lucca actually kept a lot of these symptoms hidden or masked them with his constant moving or maybe I just got so busy with life that I didn't notice all these small things until I really started paying attention. I didn't realize that he would have small tic movements before he went to sleep, I didn't realize that his movements with his hands and arms were a tic, I didn't realize that his repetitive questions was a tic/OCD, I didn't realize that his finger tapping was a tic, I didn't realize his teeth grinding was a tic, so these were things I didn't express to the doctor.
The doctor was concerned though. What alarmed him was that Lucca was zombie-like and was "looking thru you". The best we could do was get some blood tests to check his titers level and start a round of antibiotics and see if there were any changes to his behavior. When we took Lucca to get his blood drawn, he literally was a zombie. He sat in the chair on Damon's lap and let it happen. He didn't cry, fuss, worry, or anything...he just sat there. Keep in mind this was a kid that cried a couple of weeks ago because of all the blood from when he lost his first tooth. Now, this kid was letting needles enter his arm and remove the blood completely stone faced. Lucca started antibiotics that night after the bloood work. Damon and I weren't allowed to discuss his behavior until we met with the doctor again, the doctor wanted an unbiased opinion from both of us and Lucca's teacher. Spring break was just about to end so Lucca would be going back to school on antibiotics and we could gather everyone's opinion.
I cried a lot...
Let me start off with...I am not a crier!!! Damon has seen me cry maybe 5 times in the 12 years we have been together. It's just not something I do. But when it came to my child and watching him come back to me, I cried a lot!
It was a rough start but very quickly I started to see bits and pieces of our old Lucca come back. Over the next couple of days there were ups and downs but he slept thru the night and didn't have anxiety before going to bed, listened better and started just having fun! He actually started to have a real smile and laugh again, not some forced or crazy laugh...he was actually happy, and it made me cry. He started making eye contact again and told me he doesn't have bad dreams anymore only good dreams, which made me cry. He was able to play with Kaine again, didn't attack and when something happened he could say sorry and mean it, which made me cry. Lucca would tell amazing stories about his day and look at you the whole time and it made me cry. He would hug you and mean it and it made me cry. There had been such a different Lucca for so long I forgot some of the things that made Lucca well...Lucca, and seeing, experiencing and hearing them all made me cry. Lucca got calmer was able to sit and eat normally again and started to do well in school. He sat and did his homework without fussing and said to me one night, "Mom, look at how nice I wrote my words! Normally I can only do one word good but I was able to do all of them this time!!", which made me cry. In two weeks there was so much crying because of so many good things, I can't even remember them all. I think it is awesome that there are too many to list or remember and it will make me cry now.
Don't go away...
After two weeks of antibiotics we met with the doctor again and he saw an instant change in Lucca. He was pretty confident that he had PANDAS and it was a relief to finally have a diagnosis that made sense. Now, it was a waiting game. We had to see how long it would take for his symptoms to come back while he was off the antibiotics and wait for another episode/flare up to truly diagnosis it as PANDAS. WHAT!!!?? But I just got Lucca back, I don't want to lose him again! Sadly, Lucca started to fall back into his PANDAS behavior almost immediately after finishing the antibiotics and it was frustrating, sad and heartbreaking and again I cried. I didn't want Lucca to go away! The only good thing is this confirmed that Lucca definately had PANDAS and we had to find a different treatment because antibiotics weren't going to make this go away easily enough.
Our doctor suggested IVIG (IntraVenous Immune Globulin; it is a sterile solution of concentrated antibodies gathered from thousands of healthy donors which is administered into a vein). We wanted to work fast and within a couple of weeks we had the IVIG scheduled. IVIG is given over the course of two days and we sat in the surgical center for 4-6 hours each day with Lucca hooked up to a machine receiving these healthy antibodies to boost his immune system. Lucca was a trooper and did very well during this whole process. He had a couple of headaches but we tried to keep him as hydrated as possible and gave him some ibuprofen to relieve the headaches. Lucca was given a steroid burst which made him quite hyper but otherwise he was doing okay.
On our road to recovery...
It took several weeks for things to get better after the IVIG. There were glimpses of a calm, symptom-free Lucca but they were very sporadic. Then they started getting more frequent and would last for longer periods until it became the opposite, we began to only see glimpses of the PANDAS behavior. It was close to a month before we reached that point but it was a great place to be! During this time we started working with a homeopath and integrative doctor along with our PANDAS specialist. We learned that PANDAS has a strong sibling history and realized we needed to keep an eye out for Kaine and include him in the healing process. We also learned that Lucca has a mutated MTHFR gene, this means it is harder for his body to get rid of heavy metals and toxins. We needed to remove as many toxins from his body and any inflammation, so the paleo diet and clean living was the perfect solution. Inflammation plays a big factor for any autoimmune disorder, you want to reduce as much inflammation in the body as possible. Inflammation is the body's natural defense, it is part of our immune system but what we don't want is constant inflammation which wreaks havoc on the body. This is why the ibuprofen was working so well for Lucca and why he would act better, it would reduce the inflammation in his brain. We also added in supplements and vitamins to help boost his immune system, brain and overall health.
We became more strict with the diet and allow a cheat day only on special occasions (birthdays and big parties) and never two days in a row to allow the body time to react and get rid of the "cheat" meals or inflammation. The boys have been great and understand that this is just the way we eat and they feel better! Their bodies have adjusted and react when they have sweets, gluten and dairy...their tummies start to hurt, they don't feel well and it doesn't always taste so good (especially sweets). It doesn't take long for your body to adjust and your tastebuds start to change. It's been a long journey but I'm learning what works best for our family and wanted to help similar families, others with autoimmune diseases or anyone else that wanted to make this lifestyle change.
Good luck and Happy Cooking and Eating!
Jen
Paleo...
Our paleo story began around Jan 2012 a little after our youngest son, Kaine, was born. My husband, Damon, had been experiencing a lot of bloating/gas issues with his stomach. He will likely kill me if he ever sees this but seriously, the guy could clear out a room with just his burps. It was as if he had constant indigestion. He was also complaining about not being able to lose the couple pounds that lingered in his midsection. I heard about the paleo diet from our chiropractor and a friend, who were both in the best shape of their lives since high school because of paleo. I researched about it and persuaded Damon to try it out and see if it would solve any of his issues..."Just give it a shot", I said. He went at it alone for almost a week and was already losing steam because of the bland and easy food choices he made to accommodate a paleo menu. It mostly consisted of grass-fed hamburger patties, some plain chicken and salads he threw together. He got bored real fast! But he was feeling better and had already lost weight. I decided to join him and dove right into creating meals that had flavor but still fit the paleo guidelines and we all started eating paleo. After 30 days we pretty much ate paleo 80% of the time. We did a "cheat" day about once every two weeks and this new lifestyle was working for us! Damon and I both got leaner, lost fat, I had a flat tummy, had more energy, didn't wake up sore and just felt better!
Somethings a little off...
Around the same time our oldest son, Lucca, was 3 years old. He had been in preschool for about 6 months and was doing great with learning to read, write and making friends. I was amazed with what he was able to do. But he had some weird phases that started happening right when he turned 3 that started to get worse and more frequent. He was all of a sudden very hyper and was having a hard time sitting still, he couldn't get dressed by himself without some help (he was very independent previously), he started having accidents at night (he was potty trained at two), sleeping through the night was becoming a problem and nightmares became the norm, had bouts of OCD, and just seemed off at times with listening and focusing. There was always a reason for the behaviors individually though. He had just started preschool, which created a different routine that he had to learn and explained the tough time getting him up and focused on getting ready. We transitioned him to a big boy bed which explained the trouble with sleeping, nightmares, and accidents. The OCD tendencies would come and go so quickly that we chalked it up to a phase. The trouble sitting still and hyper behavior was a different story, we kept being told he is just an energetic BOY, no need to worry. His teachers weren't concerned because it wasn't consistent, he could focus on things and was excelling academically. They just said he had a little more energy then most and they were working on him "calming" his body down. I became concerned by this hyper behavior because he was always such a calm easy-going boy who would listen. We had always traveled with him, took him to restaurants, parties, stores, etc and would receive compliments from friends, family and strangers about how well behaved he was, how well he listened, how they wish their kids acted like Lucca and to keep up the good work.
Lucca's symptoms continued to come and go and it literally made you feel like you were becoming a crazy person not knowing if it was really happening. We were also fighting allergy season (he's allergic to mold and cats) which was not helping his asthma and was causing a lot of respiratory issues. He was on allergy and asthma meds and was taking ibuprofen for the mild fevers he got associated with the respiratory infections and other colds/viruses here and there. But his strange behaviors started getting less frequent and you almost started to forget about them. At four years old the preschool was still working on controlling his body. He started slamming his body into the walls and the floor during playtime, but they said he's probably just a tough kid because he wasn't hurt and was fine, and they still weren't overly concerned with his extra energy.
A diagnosis, sort of...
We decided it was time to move into the suburbs and find a neighborhood with good public schools. Preschool is expensive (especially in the city) and we wanted a break from that expense. Of course things didn't go as planned and we had to enroll Lucca in a private kindergarten. It was a parochial school and they really didn't deviate from the curriculum which was not very helpful since Lucca was reading and writing already. At our first parent teacher conference, his teacher expressed he had a lot of energy, had trouble staying in his seat, taking the longest route to get around in the classroom but was smart, sweet and funny. He scored well above where he should be, but they never gave him extra work and I started to think his behavior was because he was bored. Then, we got the email. The email that started out with...Lucca is a good boy and I like him but today his energy was over the top. At one point he was spinning around in circles in the middle of the classroom like a dog chasing his tail and she wanted to check in with us and see if anything had changed with his diet, medication, etc. Nothing had really changed, we were still paleo but I gave Lucca a lot more "cheat" days, because of play dates, b-day and school parties, and just letting him be a kid. At this point, we knew we needed to talk to someone. His energy was getting more and more out of control, he wouldn't make eye contact much anymore and his defiance at home was escalating. The nightmares, anxiety at bed and bedwetting were becoming more and more frequent. He had anxiety about robbers, zombies, being sick, school, etc and it became difficult to talk him out of these fears. Lucca would cry uncontrollably even when I was laying right next to him. Some things we blamed on him being a 5 year old boy and that's just how some kids are. We blamed the sleep issues on the moves (we moved twice in about 4 months), new houses and new school. The poor handwriting, inability to sit and focus, and constant movement was blamed on boredom at school but the spinning in circles I could not find something to blame that on.
So, in Dec 2013 we met with a therapist and discussed Lucca's behavior issues. Lucca couldn't even sit still on the couch while we spoke to the therapist. He literally was climbing, crawling and just jumping out of the seat. We explained the constant movement, how he started having trouble making friends because he was in their faces, on top of them, didn't respect boundaries, or just didn't listen, how he reverted to baby talk (which didn't help with making friends), lack of eye contact and his trouble falling asleep and staying asleep. The therapist diagnosed Lucca with ADHD (Hyperactive) and my heart sank. It didn't make sense to me, this was not a kid that ever presented hyperactivity until he reached 3 years old. I very reluctantly accepted the diagnosis and we jumped into therapy. Lucca started to do better, especially after he was over the many colds/viruses that he got over winter. We did reward charts and worked on him calming his body. He started reading in his bed at night to help him fall asleep by himself and it all started to work. We limited his liquids before bed and no more accidents. He was making progress and it was great! We had an awesome summer and he no longer had asthma (outgrew it and only had meds when needed, mostly when he was sick). We decided Lucca needed to be challenged more and moved him to a public school.
A complete 180...
Our relief only lasted about a month though. Lucca started acting up at school again and his teacher contacted us. We let her in on Lucca's ADHD diagnosis and set him up on a program called Check-In/Check-Out. It allowed Lucca a break to discuss what he needed to work on in class and a reward system. The program seemed to fit him and he was doing pretty well. He continued the therapy and we worked with him on calming his body and it seemed better... not perfect but better then before. His writing was completely legible, he made friends well, he was able to fall asleep on his own most nights (but still wouldn't sleep through the night) and accidents had diminished. He graduated from the Check-In/Check-Out program and was doing well in school again. Then, we finally found a house to purchase and moved again for the third time in 2 years!
Ups and downs...
The move was difficult and it was 5 days before Christmas 2014. Moving in general is tough, but moving in the winter with 2 young boys right before Christmas is hell and I don't recommend it to anyone!! The winter was bad and we were snowed in quite a bit, which made everyone a little stir crazy. The boys couldn't get along with each other for more then 5 minutes, were constantly fighting and it became impossible for me to get anything done. They had this brand new play area just for themselves and they couldn't get along long enough to enjoy it! I was so happy that school was starting again because I couldn't take it anymore! I did worry though because this was Lucca's third school in 2 years. But we had already done a little tour before winter break and Lucca met his new teacher, who he seemed to like. She was impressed by his reading and I told her about his ADHD diagnosis prior to his arrival to prep her. She didn't seem concerned and was confident she could work with him. Of course, one of us got sick right after Christmas and we passed our germs to each other. We probably had some sort of flu or bad cold and started the common routine of ibuprofen for the fevers.
It becomes pretty stressful when everyone is sick and Lucca wasn't making it any easier. He just wouldn't listen at all and was moving/jumping/climbing all over the place. He started with the nightmares again, the anxiety, bedwetting, and frequent wake ups in the middle of the night to the point I slept in his bed more than ours. We again blamed it on the move, leaving friends, new school and new house. Then the day after he started the ibuprofen, for the fever, he was all of a sudden a different kid. He wanted to help me, help and play with Kaine, he sat nice, he was listening to directions, took a shower all by himself (every day tasks had become hard for him to do alone). I even texted Damon stating "We had an awesome day and Lucca was a great help" ...it had been a long time since I could say that. At bedtime Lucca said to me "Mom, I'm going to listen like this everyday, because today was a great day, we had so much fun!". I instantly felt like the worst parent in the world. I started thinking I expect too much from this kid, I yell too much, I need to be more patient, he's only 6 years old, take a deep breathe, don't be so hard on him...I cried. I felt like I was failing as a parent. Why couldn't I keep my cool with this kid but I also thought why can't this kid just listen to me and calm down every now and then!!?? Starting the next day, I worked on my patience and I felt like Lucca worked on his listening but both quickly ended.
We're losing him...
Lucca continued to struggle at his new school. After a couple of months his teacher called me and was unsure whether it would be good for Lucca to move on to second grade. Academically he was fine, but she wasn't sure he had the ability to focus or sit still long enough to handle the demands of second grade. Damon and I needed to figure something out fast! Damon had read about neurofeedback and we decided to give it a try. It's expensive and not covered by insurance but we were willing to try anything. Basically it is a way to retrain the brain and we started with the brain mapping. Well wouldn't you know it... his brain mapping didn't show the typical ADHD issues and he had a weird "blip" on his brain waves. The therapist was still confident neurofeedback would be successful but we needed to go at it a different way.
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| Lucca's handwriting right before the move. |
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| Lucca's handwriting right before Spring Break. |
Lucca had started becoming more and more irritable and harder to control. He was a handful at home and now started getting in trouble at school more. His handwriting had become illegible (when we could actually get him to write), he struggled and no longer liked to read, he didn't like his favorite subjects anymore (math and science), his defiance was through the roof, he started having accidents in public and at night, his energy was crazy, he wasn't eating as much and started getting super picky or not eating at all, his coordination was off and no longer was good at sports, he constantly was slamming himself into walls and falling on purpose, it would take two hours for him to fall asleep because of anxiety, some minor OCD things started happening (he had to have certain doors closed and certain lights on), his pupils were always huge, there was little to no eye contact, fidgeting/drumming with his fingers, his hands were constantly in his mouth and he started talking/whispering to himself (to the point I started to question his sanity). Lucca also started having huge anger/rage fits towards me and Kaine, it no longer felt safe leaving them alone together. Lucca would get so worked up and want to attack that I would have to hold him for 5-10 minutes until he would calm down enough that I felt comfortable letting him go. I was told daily "I hate you!" and I felt like I was dealing with a 15 year old girl not a 6 year old boy! The scariest thing was after our first session of neurofeedback, we went out to eat and after dinner Lucca ran out of the restaurant, stood on the patio table and started screaming and talking to himself. I yelled at him to get down and asked him what he was thinking and doing...the kid had no idea what I was talking about, he had no idea he had been on the table and he had no idea what he was screaming. Something wasn't right and this wasn't ADHD. I didn't know what was happening to my sweet, affectionate, lovable, funny, smart Lucca and it was breaking my heart!
Could it be...
The next morning Lucca woke up around 5am with a fever. I started the usual routine of ibuprofen and Damon said maybe this is why he has been acting so weird/odd/off/crazy...he's been coming down with something. I thought well strep is going around so maybe that's what he has. Instantly, a lightbulb went off in my head! PANDAS!!!!!
About a year and a half prior, I had heard of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) from my dear friend who worked at a preschool where one of the little boys was diagnosed with PANDAS. She had never heard of it before and gave me a little run down because I had also never heard of it. I remember I tried pegging Lucca into the diagnosis but he never had strep to our knowledge (he only ever had fevers for a day or two with a sore throat), had no tics or obvious OCD (I really didn't understand all his OCD/tic tendencies until later), and all of his other symptoms we blamed on something else. When I had heard about PANDAS it didn't fit but now things were different, all of his symptoms had escalated to a point that Lucca was no longer himself. PANDAS seemed more like a possiblity now.
Around 8am, Lucca woke up and was smiling, laughing, making eye contact, listening, sat nice for breakfast (sitting long enough to eat was a huge struggle and so was eating), asked for permission before he did something, played nice with Kaine and was just a completely different kid from the day before. I immediately went into research mode and searched online for anything and everything on PANDAS. I learned one of the hardest parts of PANDAS is actually getting a diagnosis. It is still relatively new and some doctors have never heard of it, don't believe it, or don't have enough knowledge on it and don't want to learn about it. I called our pediatrician's office and asked if any of the doctors were familiar with PANDAS, I was told one of the doctors was and I made an appointment immediately that day.
Please listen to me...
I knew I had to explain everything to the doctor but the whole appointment didn't really go well. The doctor looked at Lucca and said he looks like he has ADHD and didn't see a need for a throat culture because he didn't show any signs of strep. FYI, strep can hide in many places in the body and doesn't always show up in throat cultures. I kindly asked for a throat culture any ways and reluctantly he ordered it to "put my mind at ease". Lucca was already having issues with being at the doctors office and was all over the place (the ibuprofen was wearing off) and didn't want anything going in his throat. The nurse tried to do a throat culture but barely made it to the back of his throat and I knew I needed to find a new doctor. The throat culture (if you can call it that) came back negative and we were on our way back to the computer to find a new doctor.
I finally found a doctor close by that had a ton of knowledge on PANDAS...it was his specialty, Jackpot!! Now, we had to wait about a week to see him. I called the neurofeedback therapist to reschedule his sessions and explained the situation. She actually had heard of PANDAS and was listening to me! She believed PANDAS was the reason for the "blip" on his brain mapping and why his brain didn't present typical ADHD. She agreed that the symptoms seemed to fit PANDAS but I needed to find a good doctor. She said it was best to heal his body and then we could work on his brain. I got off the phone and finally felt like I could breathe again and that I really wasn't crazy after all!!
Longest two weeks of my life... Lucca finally met with the PANDAS specialist and he was skeptical when I told him Lucca's symptoms. Lucca didn't present like a typical PANDAS patient, he didn't have noticeable tics and didn't have what I considered OCD symptoms. Lucca actually kept a lot of these symptoms hidden or masked them with his constant moving or maybe I just got so busy with life that I didn't notice all these small things until I really started paying attention. I didn't realize that he would have small tic movements before he went to sleep, I didn't realize that his movements with his hands and arms were a tic, I didn't realize that his repetitive questions was a tic/OCD, I didn't realize that his finger tapping was a tic, I didn't realize his teeth grinding was a tic, so these were things I didn't express to the doctor.
The doctor was concerned though. What alarmed him was that Lucca was zombie-like and was "looking thru you". The best we could do was get some blood tests to check his titers level and start a round of antibiotics and see if there were any changes to his behavior. When we took Lucca to get his blood drawn, he literally was a zombie. He sat in the chair on Damon's lap and let it happen. He didn't cry, fuss, worry, or anything...he just sat there. Keep in mind this was a kid that cried a couple of weeks ago because of all the blood from when he lost his first tooth. Now, this kid was letting needles enter his arm and remove the blood completely stone faced. Lucca started antibiotics that night after the bloood work. Damon and I weren't allowed to discuss his behavior until we met with the doctor again, the doctor wanted an unbiased opinion from both of us and Lucca's teacher. Spring break was just about to end so Lucca would be going back to school on antibiotics and we could gather everyone's opinion.
I cried a lot...
Let me start off with...I am not a crier!!! Damon has seen me cry maybe 5 times in the 12 years we have been together. It's just not something I do. But when it came to my child and watching him come back to me, I cried a lot!
It was a rough start but very quickly I started to see bits and pieces of our old Lucca come back. Over the next couple of days there were ups and downs but he slept thru the night and didn't have anxiety before going to bed, listened better and started just having fun! He actually started to have a real smile and laugh again, not some forced or crazy laugh...he was actually happy, and it made me cry. He started making eye contact again and told me he doesn't have bad dreams anymore only good dreams, which made me cry. He was able to play with Kaine again, didn't attack and when something happened he could say sorry and mean it, which made me cry. Lucca would tell amazing stories about his day and look at you the whole time and it made me cry. He would hug you and mean it and it made me cry. There had been such a different Lucca for so long I forgot some of the things that made Lucca well...Lucca, and seeing, experiencing and hearing them all made me cry. Lucca got calmer was able to sit and eat normally again and started to do well in school. He sat and did his homework without fussing and said to me one night, "Mom, look at how nice I wrote my words! Normally I can only do one word good but I was able to do all of them this time!!", which made me cry. In two weeks there was so much crying because of so many good things, I can't even remember them all. I think it is awesome that there are too many to list or remember and it will make me cry now.
Don't go away...
After two weeks of antibiotics we met with the doctor again and he saw an instant change in Lucca. He was pretty confident that he had PANDAS and it was a relief to finally have a diagnosis that made sense. Now, it was a waiting game. We had to see how long it would take for his symptoms to come back while he was off the antibiotics and wait for another episode/flare up to truly diagnosis it as PANDAS. WHAT!!!?? But I just got Lucca back, I don't want to lose him again! Sadly, Lucca started to fall back into his PANDAS behavior almost immediately after finishing the antibiotics and it was frustrating, sad and heartbreaking and again I cried. I didn't want Lucca to go away! The only good thing is this confirmed that Lucca definately had PANDAS and we had to find a different treatment because antibiotics weren't going to make this go away easily enough.
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| Making Lucca laugh. |
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| Lucca's glove friend at IVIG. |
Our doctor suggested IVIG (IntraVenous Immune Globulin; it is a sterile solution of concentrated antibodies gathered from thousands of healthy donors which is administered into a vein). We wanted to work fast and within a couple of weeks we had the IVIG scheduled. IVIG is given over the course of two days and we sat in the surgical center for 4-6 hours each day with Lucca hooked up to a machine receiving these healthy antibodies to boost his immune system. Lucca was a trooper and did very well during this whole process. He had a couple of headaches but we tried to keep him as hydrated as possible and gave him some ibuprofen to relieve the headaches. Lucca was given a steroid burst which made him quite hyper but otherwise he was doing okay.
On our road to recovery...
It took several weeks for things to get better after the IVIG. There were glimpses of a calm, symptom-free Lucca but they were very sporadic. Then they started getting more frequent and would last for longer periods until it became the opposite, we began to only see glimpses of the PANDAS behavior. It was close to a month before we reached that point but it was a great place to be! During this time we started working with a homeopath and integrative doctor along with our PANDAS specialist. We learned that PANDAS has a strong sibling history and realized we needed to keep an eye out for Kaine and include him in the healing process. We also learned that Lucca has a mutated MTHFR gene, this means it is harder for his body to get rid of heavy metals and toxins. We needed to remove as many toxins from his body and any inflammation, so the paleo diet and clean living was the perfect solution. Inflammation plays a big factor for any autoimmune disorder, you want to reduce as much inflammation in the body as possible. Inflammation is the body's natural defense, it is part of our immune system but what we don't want is constant inflammation which wreaks havoc on the body. This is why the ibuprofen was working so well for Lucca and why he would act better, it would reduce the inflammation in his brain. We also added in supplements and vitamins to help boost his immune system, brain and overall health.
We became more strict with the diet and allow a cheat day only on special occasions (birthdays and big parties) and never two days in a row to allow the body time to react and get rid of the "cheat" meals or inflammation. The boys have been great and understand that this is just the way we eat and they feel better! Their bodies have adjusted and react when they have sweets, gluten and dairy...their tummies start to hurt, they don't feel well and it doesn't always taste so good (especially sweets). It doesn't take long for your body to adjust and your tastebuds start to change. It's been a long journey but I'm learning what works best for our family and wanted to help similar families, others with autoimmune diseases or anyone else that wanted to make this lifestyle change.
Good luck and Happy Cooking and Eating!
Jen
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