I've been wanting to create this new family blog for a long time. It's been so long since I made a journal entry for Ben to update everyone on his progress. We got busy with our move from SW MN to ND and I just didn't have the energy. Since then, Jack and I have also been diagnosed with Lyme Disease. Everyone keeps asking me how we are all doing and I figured it was time for a slight blog change! :-) I created this site, so you can not only keep up with Ben and his updates and doctor appts, but we can update everyone all at once as to what is going on. I also want to use this site to share our struggles. I don't post them for sympathy or to embarrass us, but to let others know that we are a real family with real struggles and that if someone else is going through the same things, you are not alone and we get it!
BEN has had a pretty "quiet" year. Last summer we were given his PAX8 diagnosis and left with just that - a diagnosis. It didn't change anything except give him another title. We were told to check back in a year as a follow up to his progress. We traveled to Gillette's in St. Paul at the end of July to make contact with an endocrinologist. PAX8 is linked to congenital hypothyroidism. Even though Ben doesn't have that, his geneticist wanted Ben to start seeing someone who could watch him grow and make sure we caught anything if it did start showing up. We did lots of blood work, we did a bone x-ray of his left hand to see if his bone growth matched his age, and we did a thyroid ultrasound to check and make sure everything was ok after Ben's thyroglossal duct cyst removal surgery from 2 years ago. The bone x-ray came back at 6 years old for Ben. He just turned 5 in June. They don't get too concerned until the difference in bone age and actual age is greater than (I can't exactly remember what the nurse said), but I think it was something like 16 months. They'll continue to monitor that. His ultrasound came back great and no worries there. As for the blood work, his TSH (thyroid stimulating hormone) came back much higher than they would have liked, but his free T-4 and free T-3 looked fine. We will re-do the blood work at the end of September or early October.
On Monday, Ben had a full day of appts again at Gillette. He saw genetics first. There wasn't much to update on. Once you get a diagnosis, unless anything changes, there isn't much to discuss. I found out that Ben was their first patient who was able to get whole exome sequencing done and since last summer, they have done many. All have come back with some sort of genetic disorder. His geneticist said that shows just how common genetic issues are. He also said because they are becoming more common and technology is advancing that possibly 5-10 years down the line, this will be a mainstream test. Instead of jumping through hoops in the beginning stages of diagnosis, this will be the first test they run. Insurance companies will (hopefully) start covering them too. I asked if that ever happened, if we could run Ben's test again and he said, "absolutely". Although the diagnosis fits Ben, there are still certain symptoms he has that does not fit this. I am not (and neither is Ben's neurologist that we saw later in the day), convinced that PAX8 is Ben's only diagnosis. There is still something else going on, but for now we wait and just see how it all plays out. I asked if Ben would ever get worse from this or if he could potentially get better, or even start developing "typically". He said that this is a genetic mutation. He doesn't see Ben ever getting worse, but it's hard to tell how things will move forward. He said that Ben will almost for sure need some sort of support for the rest of his life. If we continue to get him therapy, it will hopefully help, but there is no cure for this. He said Ben will probably continue to be delayed in some way. That took the pressure off me. I can't cure him and I'm not trying to, but the outside world can be so cruel! We don't need to see genetics again for 2 years now unless something changes. His geneticist did want to (at some point) get a new MRI of Ben's brain just to see where things are at since it's been 2 years since his last one.
Ben's next appt was physical medicine and rehab. She wanted to see how he is moving (arms, legs, muscles, etc) and make sure things aren't getting worse. He needs new SMOs (his braces/orthotics) because his feet keep growing, but we have an order for new ones and will get those fitted up here in ND. She didn't have too much else to say. She wants to see him back in 8 months.
Our last appt of the day was neurology - my favorite (and I sincerely mean it)! Ben has the best neurologist and I look forward to appts with him because I always feel listened to and he's seen Ben longer than any other doctor has - since Ben was 15 months old. He believed me when everyone else said I was crazy and that there was nothing wrong with Ben and that "he'd grow out of it". I told him that I thought Ben had a seizure in church about a month ago. He stared off into the back of the church, didn't blink his eyes at all, and I couldn't pull him out of it. I shook him, blew air in his face, and smacked him (lightly!) on his cheek. It seemed like forever, but was probably a minute or two until Ben slowly pulled out of it, turned his head towards me, and looked me in the eyes. It scared me. He did a lot of starting spells when he was younger, but I haven't noticed them in probably a year or so. He's started doing them again within the last couple of months, but I never thought anything of them, because they don't last long. His doctor said it was most likely a seizure because past EEGs show that Ben's brain waves are high risk for them. He suggested possibly trying seizure meds on him. His reasoning is that they are small seizures now, but a lot of times that's how they start and then they grow into bigger ones. He said a lot of times individuals might just need the drug for a year or so and they never have one again. I declined for now because we don't want to give him meds if we're not 100% sure that it's exactly what is happening. He said he at least wants Ben to have a rescue drug. It's just like someone carrying around and EPI pen. I'll have one and the school will have one (one needs to be with him at all times). If he has a seizure for more than 3 minutes, then we need to give it to him. He also suggested we do an updated video EEG to see what's going on, since it's been 2 years since his last one (he had the VEEG and MRI done 2 years ago during the same hospital stay). That made me feel better, because at least we will know whether his brain is getting worse, staying the same, or getting better. Ben will do another inpatient 48 hour VEEG (video electroencephalogram) and we'll hope to do his MRI before we go home on that last day. His doctor said, "plan for 2 days, hope for 1". I have him scheduled for the second week in October, but we've been put on the wait list and hope to be moved up to September.
Benny started kindergarten today! He was so proud, but extremely nervous to go. It was super noisy with all the parents dropping off kids. He was unsure of a new teacher, new classroom, and no one he knew. His lip quivered a bit and his hands were going crazy. Anyone that personally knows Benny knows that he does this hand twiddling when he's nervous. He'll have a great day and I can't wait to go pick him up!
JACK has had a tough go around with his lyme. We decided to forgo antibiotics after awhile because they weren't making a difference and his rages and anger we out of control. We travel to Minneapolis (actually Edina) for holistic treatments for him. His doctor suggested we drop his antibiotics and start him on LDI (low dose immunotherapy) therapy as well as herbs to treat all the bugs in his system. Right now, he's been diagnosed with lyme disease, bartonella, babesia, and candida. To easily explain the LDI, is that it basically combines certain antigens with beta-glucuronidase (an enzyme). It then attracts different parts of the immune system to destroy infections. I know it's "out there", and not everyone agrees with it, and there are plenty of articles for and against it, but it's what we've chosen and it's working for Jack. He is SLOWLY getting better. He starts his 3rd round of it on Friday. How it works, is that every Friday (for 5 weeks) he gets a syringe treating a different antigen. After a round is complete, we then look at any reactions he had (extra rage or aches and pains) and we adjust the dose for the next round and do it again. He is still having rages, destroying property, hurting his brothers, and saying really horrible things to all of us, but it is much less than it was happening before. Our entire day used to be filled with it, but now it's just little snippets during the day or not at all. He is still having aches and pain, but again, not as much as he used to. He's such a wonderful kid when he's not flaring or herxing (when the bugs start to die off and leave his system)! I think he's much happier, but he's still not the kid we used to have. He started 4th grade at our local Catholic school this morning. He has horrible anxiety and was really worried about going, but when I left him, he had a smile on his face! With his health and mine, I just couldn't home school this year and he told me he feels like I abandoned him. I know he'll have a great year and will do great things!
LUKE has been diagnosed with encopresis. He basically struggles with chronic constipation and can't feel when he needs to go #2 and doesn't always know that he's gone where he shouldn't. He's SO embarrassed by this. We're working to try and get him healed, but I've heard it's a very long process. He also has had several reactions to cashews, so we're hoping to get him to see an allergist soon, to see if cashews are the only thing he's allergic to, or if there is something else.
SAM is having a tough go around. People keep telling me he's "just a toddler" and "he'll grow out of this", but I am struggling with his anger, aggression, screaming (I'm talking the loudest, high pitch, ear piercing scream you've ever heard in your life - that goes ON AND ON AND ON), defiance, and lack of sleep. This morning he got up at 4am. Justin and I heard his drawers opening in his room and Justin went in to find the light on and he was wide awake and changing clothes. He never did go back to sleep and was a mess all morning because of it. He's always up late, and up extra early, except he's so upset all the time that he desperately needs sleep. No one thinks anything is wrong with him. I made an appt with our chiropractor for next week. Hopefully getting adjusted will just be the tip of the iceberg for him.
I am sick. My neurological lyme is kicking my rear end. Most days I walk around feeling tipsy and drunk (and I haven't had a drop of alcohol). I have horrible headaches where it feels like my head is in a vice and it keeps getting tightened. My body aches from head to toe and my back and neck pain is so bad that I often toss and turn all night because I'm in pain. I see a doctor when Jack goes in Minneapolis (Edina) and I am treating my lyme (and bartonella, babesia, and candida) with herbs and supplements. I'd like to start LDI, but our funds are going towards Jack at the moment. My scariest moment was on Sunday at church. I was feeling dizzy for most of Mass. I started to get shaky before communion and by the time we sat back down after it, my entire left arm was shaking uncontrollably and then the rest of my body followed. I walked out of church bracing myself on Luke's shoulders, looking (well at least feeling like I looked) like I had tourettes or something. I had to watch my hand very carefully to make sure it matched up with Monseigneur's, so I could shake his hand. Justin was not with me but I somehow made it back home. As I got out of our car and headed to the bottom of the stairs in our garage, Justin came to meet me and help me in and my legs gave out and I collapsed into his arms. I had no use of my legs. I could feel that they were moving, but I couldn't move them myself. He had to carry/drag me into our bedroom where I was able to take a nap and feel much better when I woke up. Lyme disease is so scary. No one believes in it. I made a follow up appt with our local doctor just to see if anything else is going on, but this is what lyme disease does to you! It makes you feel like a crazy person and it imitates so many other diseases! I also made an appt with our chiropractor next week when Sam goes in. I need someone local who will also help me heal and make me feel less crazy.
So, there you have it. An EXTREMELY LONG update from our family! It is weird sitting in my office, typing all this, in complete SILENCE!! It is so different not homeschooling this year and I miss my boys, but I know this is best for all our healing. I can't wait to hear how their first days went!
Hugs to you all -