So now that I am over the initial shock and sadness, I suppose I am ready to blog about Jerry's diagnosis. After six months of observation by his two ABA's, his neurologist, and then a psychiatric evaluation, childhood schizophrenia has been confirmed. I can't say that we were completely surprised. We had been seeing the signs for some time and there was just no other explanation. Also, two members of John's close family had/have the diagnosis and heredity does play a factor. If the disease is going to manifest itself, it is typical to be between the ages of 15 and 17. Jerry will be 16 in February. Dr. F said some of the classic autism characteristics we saw in Jerry after his diagnosis at 4 could also have been childhood schizophrenia symptoms that we were simply unaware of because of his autism diagnosis...the paranoia, the thoughts that others were talking about him or out to get him or hurt him, plotting against him.

And apparently, if the disease is already present, just temporarily dormant, it can be brought to the surface quicker by the use of marijuana, even for medical purposes. Jerry took medical marijuana for his seizures and mood from February to May 2017. His schizophrenia symptoms surfaced by the end of May when we immediately took him off of the drug. Trying not to dwell on the should have's, could have's, or would have's. Clearly, at some point, Jerry was going to exhibit the signs of the schizophrenia. It just may have appeared later, early 20's possibly. Remembering and clinging to Romans 8:28 and "all things". As an adult with the onset of the disease, we would have had less influence over his diagnosis and treatment. So there's that!

And with this new diagnosis comes mandatory medications. I say mandatory because until you have experienced your child in the prone position of a parking lot crying and screaming, pale and terrified because someone is shooting at him...watched him argue with an owl on the shower curtain for 20 minutes...cry uncontrollably because a voice was telling him he wanted to hurt his brother Jonathan...seen him pace and argue with people who aren't really there, sometimes sleeping no more than 6 hours out of 48...and walked in to check on him in the middle of the night only to see him sitting straight up in bed and wide-eyed with his favorite superhero poster shredded all over his bed because "he wouldn't stop staring at me and bothering me", well let's just say you just haven't walked a day in our shoes. The medications are mandatory, for his peace and well-being, as well as ours.

He is currently on two antipsychotics that are being tweaked to find the right dosage to make his delusional periods (10-12 days per month) more manageable and even less intense. Haldol is an old-school antipsychotic that helps with the delusions and hallucinations. It is also a medication John's one family member had success with and so the doctor felt would be more likely to help Jeremiah as well. Rexulti is newer and helps with the more positive symptoms of depression, not caring for his personal needs (yes, we are wiping him again), and the mood swings.

So far, the results have been positive. These phases show a less catatonic and terrified/paranoid Jerry. He can tell us now what the voices are saying and why he is crying or what is so funny that he is giggling uncontrollably about. Usually, in those instances, the voices have said something he finds funny. Those are less concerning to us than the voices that are mean and threatening to him. I'm not sure it's a great thing to always know what the voices are saying to him now. Sometimes, they are just downright creepy, but I think it makes Jerry feel better to tell us so we can comfort him.

The visual hallucinations have lessened as well. He no longer seems to see people/entities that only he can see. That's good. Another hair-raising experience is to witness him walk up to a corner of the room, look up, and say, "Oh, there you are!"

Anyway, there are the basics and what we know. You all know that I am a researcher by nature. I research or Google everything to find as much information as I can on a topic and possible solutions to the problems it presents us. This has been a challenge with childhood schizophrenia. There is very little out there. There is a shameful, dirty stigma to the disease that no one wants to talk about it, especially if they or someone they love suffers from it. And that's why I plan to blog about it, as I have other challenges we have gone through with Jerry. People, parents in particular, need to know they are not alone. Someone else is going through similar circumstances, feeling the same grief, facing the same fears of uncertainty. I did find a great Facebook page for Parents of Kids with Schizophrenia and that has proven to be a pretty supportive and sometimes encouraging resource. However, it has at times been downright discouraging as well with stories of incarceration, suicide attempts, and long-term residential care. I try to filter those posts through the truth found in Philippians 4:8, which says, finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things.

As always, keep us in your prayers as we navigate these uncharted waters. Above are two fairly informational videos about childhood schizophrenia if you would like more information.

It has been a while since I've blogged...on purpose if truth be told. It has been an interesting summer, to say the least, and to be honest I just wasn't ready to let the world know where we were and what we've been going through. Embarrassed? A little. Sad? A lot. 

First off, physcially Jerry has been doing great. He is almost 88 pounds at this point, eating like a horse, and we are not even using the feeding tube anymore. It's still there, in case we need to use it again, but at this point, it looks like he will no longer need it sooner rather than later. Probably still the end of the year before he is free of it entirely, but we can at least see the light at the end of the tunnel. And compared to this time last year? Wow. What a difference a year makes. This time last year we were still detoxing from our two-week hospital adventure.

Mentally and behaviorally? Well, that's another story. As some of you may recall, we were trying Marinol, medical marijuana to help take the edge off of Jerry's anger and OCD issues. We stopped that at the end of May. We just weren't seeing the results we'd seen initially anymore and, after years of medication therapy, John and I have developed a new philosophy. If it isn't working, why give it to him? So we stopped the Marinol.

It's been a long time since Jeremiah was on no medications at all, of any kind. We figured it was time to see where his baseline was...emotionally and behaviorally. And what better time than over the summer when he is in the safety of his own home and surrounded by family who loves him at his best and his worst?

It was about that time, the end of May, when Jerry began to cycle through some strange periods of behavior, the likes of which we have never seen in him before.

One day he simply woke up and wasn't speaking to us. He was speaking, just not to us. He began having full conversations that appeared from our perspective to be one-sided, but to Jeremiah, were very much two-way conversations. His new "friend" even had a name. Jack. During this period, which lasted roughly 11 days, Jerry ate only when we placed food in front of him, cried and laughed randomly (never at us, but at something Jack told him), stared but never really looked at us, and could go for more than 24 hours without any sleep. He paced back and forth, talking, crying, and staring awkwardly at random objects, but seldom us. He also wandered aimlessly during this time and we really had to keep a close watch on him out in public because he would just walk off aimlessly. He followed our lead and directions, but often after repeating ourselves multiple times while he just stared blankly at us.

Then Jerry woke up another day and he was Jerry again...times 10. He was teasing and super aggressive, cursing and hitting, impatient, irrational, and just exhausting and quite literally impossible. Just about the time we thought we couldn't possibly live through another minute of his behavior, bam...delusions and Jack were back.

Each period lasted roughly two weeks, give or take a few days. And we recorded his behavior during each one carefully, as did his behavior therapists who were just as perplexed by this new behavior pattern. We even videoed his more delusional periods for documentation purposes.

By the end of July, we knew it was time to go see his neurologist, Dr. "F." His first suggestion was an EEG to make sure that Jerry's delusions were not the side effects of active seizures. They were not. The day we took Jeremiah into his office for an examination, he was right in the middle of one of his delusional cycles. Try as he might, he could not get Jerry to look at him, but seemingly through him. Jerry talked non-stop to his "friend" as he paced the tiny office we were in, never engaging with Dr. F directly. This was one of the times that Jerry's "friend" was funny and entertaining it seemed as he walked around giggling incessantly, to the point that he drooled down the front of himself.

Dr. F seemed as puzzled as we were, but said that it was very clear that he was having psychotic breaks of some nature and was currently in the middle of one. As much as he knew we had been trying to avoid medication, he strongly encouraged us to consider an antipsychotic, for Jerry's well-being and ours. He also gave us an as-needed anxiety aid for him that would also help to calm him during his times of higher anxiety and aggression. That night we started him on Zyprexa at 10 mgs.

While we have seen less aggression and calmer Jerry during his more difficult stages, he is still cycling. And now, even during those periods when he for the most part seems back to the old Jerry, he still struggles with hearing the voices. It's not so bad when "Jack" is entertaining and causing the giggles. It's almost funny actually. But it's during the times when Jack is threatening and has Jerry scared that are the most difficult to see him in.

We are there now. We saw Dr. F for a check-up today. He wanted to see him before he goes back to school. Scared Jerry showed up yesterday afternoon. He paced all evening last night and didn't fall into bed until 5 am this morning. Then he was up at 8, wide-eyed and still scared. He has been pacing all day, even in Dr. F's waiting room.

When Dr. F. tried to give Jerry a high-five today, Jerry refused and yelled "space!" You would have thought Dr. F was poking him with needles by his reaction to taking his blood pressure and checking his reflexes. He sat in the exam room and cried, at one point telling us that he was tired of "all of it." It was heartbreaking really. Dr. F was very concerned by what he was seeing today and increased his Zyprexa to twice a day. He also encouraged us to use the anxiety aid more frequently, especially when Jerry was as he saw him today, scared and very paranoid.

The picture posted above was during one of Jerry's paranoid periods, when Jack was more of a foe than a friend. We were at the movies and, as you can see by the expression on Jerry's face, some of us were more there than others.        

Jack has made Jerry laugh, scared him, had him in tears, and convinced him once that people were shooting at him. That was in a parking lot when he grabbed Michaela and I who were walking on either side of him, began screaming, and dropped to his knees. We had to practically carry/drag him to the van. He was pale as a ghost and crying the rest of our drive. Once, Jack was "responsible" to moving items around in Michaela's room and destroying others in Jonathan's just to try and get Jerry in trouble...according to Jerry. Needless to say, the kids are encouraged to lock bedroom doors when they are not home now...and sometimes even when they are.

He is convinced actors on the front of movie jackets and characters on the front of books are out to get him and telling him things and he has ripped all of the Marvel posters off his bedroom wall because they were "staring at me" and "wouldn't leave me alone." Today he asked for a bath and then kneeled on the edge of the bathtub naked and screaming because he was too scared to get in. he yelled, "Turn it off, turn it off!" Typically he loves baths and takes two a day, just because. 

As always readers and friends, pray for us. We have placed an alarm on the front door to alert us in the event Jerry tries to go out on one of his up-all-nighters. We are praying for him and over him like mad. We do our best to make him feel safe when he feels threatened by Jack and love him unconditionally when he is having his bouts of aggression.

​In reality, this is brand new territory for us. I can make token boards, reward charts, behavioral modification plans, and follow a medication regimen. I can kiss scraped knees and keep my distance when he is not in the mood to be touched or loved on. I can turn down too loud and remove him from situations that cause him sensory overload. And I have become an expert meltdown detector!

I cannot, however, get rid of Jack, no matter how hard I try. He's a bully whose parents I can't call or force to keep his distance from Jerry. Shoot, I can't even see him. The best weapon we have against him at this point is prayer. And truthfully that's hard for this momma who wants to make it all just go away. So pray with us please. This is uncharted territory...for us, not for God. Pray he will give us wisdom in dealing with this, peace that He has it all under His control and that none of this has taken Him by surprise, wisdom for Dr. F in the best treatment plan for Jerry, his new school year that starts in two days, and a complete and total deliverance for Jerry from Jack.

Thanks guys. Love you all. 

I know it has been a while since my last update, but not much has changed, which in our lives is a good thing! Ok, we have had some crazy behavior issues the last few weeks with the anticipation of summer, but what Florida teenager isn't bouncing off the walls and "over it' when it comes to getting up early and going to school everyday as it is so beautiful outside and Adventure Island is open?

Today we saw the GI doctor for the first time since his G-tube replacement surgery on April 14th. Been loving the new button tube by the way. Anyway, on April 14th, he weighed 70.6 pounds. At today's visit, he weighed 75.24 pounds! That's 4.64 pounds in just over one month! Yes, I did that math!

The new goal? 92 pounds! At 92 pounds, we can remove the tube altogether. At this rate of weight gain, that's in about 4-5 months. So he needs to eat 1,800 calories a day.

Of course, with every praise comes a prayer request. Jerry has a nasty granuloma growing around his port. Click here for more information on just what that is. Basically, his body is trying to close the hole it knows should not be there by growing extra skin. This is causing some irritation and making the site sensitive.

We are trying a steroid cream to shrink the tissue. If that doesn't work, the doctor will use Silver Nitrate to cauterize it. It's similar to removing a wart and involves a significant amount of stinging for a time afterwards. Hence, prayer request. Please pray that the steroid cream shrinks the tissue. Poor guy has had enough pain for a while. And said doctor talked about the stinging in front of him so I don't need to tell you how adamant he is that burning that skin off is NOT going to happen.

Also pray we, Jeremiah, his classmates, and his teachers/therapists survive the rest of this week...the last week of school! I will update everyone on how he ended this school year next week!

We have been home three days now and Jerry is getting around better. He is at least standing up straight and walking a little bit faster than Tim Conway on the Carol Burnett Show. Wow. That just dated me, didn't it?!

Anyway, we are home, we are surviving on the new diet, and the shock of it all is finally starting to wear off as we settle back into routine. Tomorrow Jerry even returns to school. And I say that "we" are surviving the shock of the new diet because this really is a family thing. We are all adapting to what Jerry can eat at home, out at restaurants, and when at others' homes.

We saw the GI doctor today for his follow-up and he is at 68.2 pounds, a few less than what he was discharged from the hospital at, but with the change in diet, I think that is to be expected at first. It has been a frenzy of Pinterest and Google around here to figure out what he can and cannot eat. Thankfully, the dietician at the hospital gave me her cell number should I have any questions. She is likely regretting that decision right about now!

We follow up with the GI again in 5 weeks when we will schedule Jerry for a one-day outpatient surgery at St. Joseph's to get his G-tube replaced with a button-style one. Basically, the extra "appendage" now dangling about 7" from his belly will be gone and just a button-style protrusion will be there as a feeding port instead.

​When does that one get removed? That is the million dollar question. It's all up to Jerry I suppose and how quickly he gets back to eating normally and gaining some serious weight. And so the journey continues.

It is the end of day 3 here at St. Joseph's...take 2. After a grueling cleaning out process, Jerry underwent his colonoscopy and endoscopy today. The results? Nothing worth writing home about as the saying goes. Besides some mild gastritis in his stomach, his scopes were not very revealing. The doctor did say that there are some things that simply cannot be seen without a microscope and so he did multiple biopsies from Jerry's esophagus, stomach, and colon. Those results should be in Friday.

So now what? Tomorrow morning Jerry will have another small bowel follow-through, his third since July. This will show if the SMAS has returned as a result of his loss of appetite and even greater loss of weight. His weight is less now than it was when he was released from the hospital back in July.

If the SMAS has returned or is even on the immediate radar, they will re-insert his NJ tube into his small intestine so that we can begin supplementing him with nutrients from special formula in an attempt to bulk him up again. Not that bulk has been any sort of descriptor for him at all over the last 10 months since this battle first began. The most he has weighed since last April is about 75 pounds. Now he is 65.

For as much as Jerry hates the feeding tube, I am giving myself the perseverance and patience pep talk having him home with one will require for us as well. It's an IV-pole-toting, formula-smelling-and-mixing, tube-leaking, booger-encrusted, sticky-face-tape-wearing, kinked-tubing, error-beeping, up-in-the-middle-of-the-night, pole-dragging-up-and-down-the-stairs, endless-supplies-ordering, line-flushing existence that takes time to see as routine. Nor do I want it to become such.

If the SMAS is not present or an impending danger, he will be evaluated for a G-tube instead. And no, it is nothing like a G-string. A G-tube is surgically inserted into his stomach and considered a more long-term feeding support system. It's also a more discreet, less embarrassing option for an active teenage boy in school.

Of course the great mystery has yet to be answered. What made Jerry stop eating, caused his subsequent weight loss and eventual SMAS, and resulted in this crazy roller coaster ride for us all in the first place? That is the million dollar question folks. And no one really knows. But one thing we are certain of at this point. If Jerry's biopsies taken today come back normal, the only other possibility is that this is behavioral.

In other words, somewhere, somehow, and at some point, Jerry associated food and eating food with a negative reaction or experience that he cannot forget. Maybe something he ate made him sick once. Maybe it had nothing to do with something he ate at all, but he developed the flu or caught a virus after eating once and so now he associates eating with getting sick and so naturally doesn't want to do it. We've all had similar experiences where the thought of a certain food or even simply smelling it conjures up some foul memory and we just can't bring ourselves to eat it again, even if it was once a favorite food. It may not be rational, but it doesn't matter. Maybe it's an autism-related sensory issue with an out-of-whack sniffer or touchy taste buds. Lord knows we have seen heightened sensory intolerances since he stopped all of his medications. Maybe it's anxiety or fear. At this point, we just don't know. And we may never know. It really doesn't matter. All that matters is getting him to eat again before his tiny self becomes so malnourished that organ damage results.

Physical versus behavioral. If there is one thing I am absolutely without a doubt certain of, it is that behavioral in Jerry will be so much more difficult to reverse and resolve than physical would be. Behaviorally speaking, we are always three steps forward and two steps back in progress-making.

I have to be honest. While I was listening to the specialist tell us that Jerry's scopes appeared to be normal overall, I couldn't help but become discouraged and disappointed. Please hear me out and don't misunderstand me. I do not want anything serious to be physically wrong with my son. But I was hoping for a logical, non life-threatening, swiftly and easily remedied solution to why I have a 65-pound teenage son. Of course, now that I re-read what I just wrote, I see the word logical. And therein lies the problem. Nothing about parenting Jeremiah has ever fallen into the realm of logical! Lol! Why should this be any different?!

Still, we have no definitive answers until the "fat lady sings" on Friday, as these scopes he had today exhaust the battery of GI tests that could reveal what's going on in his little body. And so I am going to refuse to cross that bridge until I come to it, even if it is only two days away! Gonna walk slowly people!

And so that ends day 3. Overall, it was a day that started with the beginning of a much-needed new ladies' Bible study semester, non hospital coffee (It's the little things.), a friend sitting with us while Jerry was in his procedures, a visit from Pastor Mike, another friend getting Micky out of the house for a fun afternoon, that same friend ordering us dinner, getting to go home for a few hours and eat with the other kids, Ben looking and feeling slightly better from his flu bout, Jonathan taking care of replacing two old car tires after we got a flat on the way home from the hospital, John's job and boss being flexible enough for him to work from anywhere with WiFi, a daughter who kept the house running and clean while I was here all day, one of her brothers was sick, and the other one was at work, Jerry's behavior therapist coming to visit with goodies in tow, family coming to visit with Apple pies from Checker's, friends and family from all over texting, FB posting, and calling with well wishes, prayers, support, encouragement, and offers of help, uneventful and uncomplicated anesthesia and procedures, and complete and total strangers dropping off age-appropriate fun boxes of games and activities for each of the kids in the children's hospital. Blessings. More blessings than worries, worries I have absolutely no control over anyway. It's all about perspective I guess.

We knew this was coming. Honestly, I am almost relieved it is finally here. Jerry has been admitted into the hospital once again. He is down to a weight lower than when he left the hospital back in July. He is not eating, unless it is applesauce cups for the last 4 days now. His gastric emptying scan from a few weeks ago was normal so that has been ruled out.

​The plan right now is to do a colonoscopy, endoscopy, and repeat the small bowel follow through to see if his SMAS has returned. We arrived after his GI appointment this afternoon and he is now again acquainted with his nemesis, the feeding tube. He received it like a champ, along with his IV. They are running the liquid Miralax through him to clean him out now and hopefully testing can begin tomorrow.

The colonoscopy was the one test never run so we are hoping to finally get some real answers. They stopped tests when they diagnosed the SMAS, but the bottom line is, the SMAS was just a result of the not eating. We never did figure out why he stopped eating in the first place. Praying the colonoscopy has some answers to that mystery for us.

​If the colonoscopy is clear, well then we begin looking at whether or not this is a sensory issue or possibly ecen behavioral. I will be surprised though. He says everything he eats hurts and cries at the table in front of his food because he is hungry and wants to eat it, but says he just cannot.

​So here we are again. This time, we left a sick cat and a brother with the flu at home. Michaela said she played a mom in her Peter Pan play so she can play one again at home while I am here at the hospital with Jerry. Blessed.