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Sean's Health/Symptoms

{This page was last updated on 10-11-21.}

Update 10-11-21: I have decided not to update this page for the time being.  Sean is doing about the same as he has been doing (good and bad days), though he is back to basically daily headaches, as well.  His primary doctor recently made the decision to leave her practice, so we are in the process of finding a new primary for him.  For now, he will see his former primary doctor who he has a physical with next month.  We're hoping to have labs repeated then and see where we go from there.  If we get further direction or a new one, I will update, but until then, I will not be updating here.  Thank you for all your prayers!

On this page, I will keep a current log of sorts on how our son, Sean, is doing.  I am doing this more for family and friends that ask for updates so I have a place to direct them quickly and easily.  Prayers greatly appreciated!
  • Symptoms Began: Beginning of October, 2019.
  • Extreme Fatigue/Easily Wearing Out and Lack of Focus: By far the biggest issues we're having are his extreme fatigue/easily wearing out (despite adequate sleep) and his lack of focus.  Some days are worse than others; some days are better than others.  We are having him get daily exercise to see if this helps, and (so far) it has not made a difference.

    Update 2-10-20: We decided to put his fatigue on a scale.  He told me that on the days he is doing a lot of laying down, he would call that a 5 or 6.  Most days, he thinks he's a 2 or 3.  He tells me there are times he is a 0 or 1, but that doesn't last all day.  He will also go a few days where he almost feels normal again, and then he will crash hard and have days of more severe fatigue.

    Update 2-17-20: Nothing new to report here.  He still has his good and bad days.  I'm glad it isn't worse, but it would be nice to see him not have to deal with the bad days.

    Update 3-9-20: Sean had a really good week last week in this regard.  On days he did feel fatigue it was 1 or 2.  Yesterday, his fatigue got up to a 3, though.  He said was doing great this morning, too (no fatigue, basically).  We'll see how things pan out this week.  We're wondering if the Zinc and/or Elderberry may be helping with the fatigue, but we're not sure.  Either way, I'm glad he had a bit more energy.

    Update 3-16-20: His fatigue and lack of focus seems to come in waves.  Some days he feels great, others (like today), he deals with a lot of fatigue.  He does seem to have more days of more focus and energy than he was, though, so that's good.

    Update 3-23-20: Same as last week, but not as much fatigue.

    Update 3-30-20: Same as last week.  I've decided to not update this section for now unless he starts experiencing a lot more fatigue or no fatigue more consistently.

    Update 4-13-20: He has been dealing with more fatigue, but otherwise not a huge change here.

    Update 4-20-20: His fatigue fluctuates between a lot and not too bad.  I am not going to update this section unless this drastically changes.

    Update 6-8-20: Having a little more lack of focus recently.  He is having a little more fatigue recently, too.

    Update 6-22-20: Focus and fatigue have been better recently with some bad days.

    Update 8-24-20: We have been noticing a little more lack of focus again lately.  His fatigue hasn't been bad, though.

    Update 8-31-20: He still has more lack of focus at times, but it seems slightly improved.  He is also still not dealing with major fatigue.

    Update 9-14-20: We are seeing more lack of focus at times, and he has dealt with a few episodes of major fatigue, but nothing consistent.  We will continue to keep tabs on this and talk with his doctor about it when we see her again in a few weeks, sooner if necessary.

    Update 10-26-20: Same as a  month ago.  We have found that a little bit of black or green tea in the morning, however, help with this.

    Update 11-9-20:  Still dealing with episodes of lack of focus (black or green tea still help with this), and some fatigue at times.

    Update 11-16-20: His lack of focus has been a lot worse lately and normally accompanies his headaches.  He is also wearing out more easily again.

    Update 12-11-20: His lack of focus isn't any worse than it's been, and he is still wearing out a bit easier.

    Update 1-26-21: His lack of focus comes and goes, but feels like he is not wearing out as easily.  Through this whole process, he felt like his ability to remember was impaired.  He feels like his memory is now slowly improving.  We have tried given him some tea at times, and that may be helping his focus/memory, but the jury is still out on that.
  • Palpable Lymph Nodes: He has 2 painless lymph nodes in his neck that are 1 cm in size and have been nearly the whole time (noticed them week 1 or 2).  These were the lymph nodes we were going to get checked out with the neck CT, but we decided to wait at this time to see if something more obvious presents itself health-wise in time.  If they grow bigger, we will get them evaluated right away.  The lymph node on the right side is a little bigger than it was, but it is still not considered extremely large (about 1.5 cm now), so I'm keeping an eye on it for now.  If it continues to grow, I will call his doctor to discuss it.

    Update 2-3-20: The right node seems to be just over 1.5 cm now, but not by much, so we're still just keeping an eye on it.  He may possibly have some other swollen nodes, so we're keeping an eye on them, too.

    Update 2-10-20: The right node seems to be just under 2cm now, and the left one seems to be about 1.5 cm now.  We're still keeping an eye on it for now.  He does seem to have some other nodes that swell at times, too, but I am not consistently feeling them.  I've also decided to go to checking them about once a week on Mondays unless he complains about them.

    Update 2-17-20:  The right and left nodes seems to be slightly larger than they were a week ago, but still not quite 2cm for the right one and not quite 1.5cm for the left.  Other nodes definitely are swelling at times, but nothing that seems to be consistent enough to record for now.  Whatever is happening with the nodes seems to be a very slow process.  If I notice a major change, I'll report it ASAP, but for now I've decided to just watch it until April when we see his doctor again.

    Update 2-24-20: The right node is basically 2cm, and the left one is basically 1.5cm.  He is also definitely having other nodes swell at times.  I'm still just keeping an eye on it for now as he has an appointment in April, but if they start growing at a faster rate, I'll call her sooner.

    Update 3-9-20:  The right node is still the same size (basically 2cm), but the left one seem to be slightly smaller than it was, but still over 1cm.  He still has other nodes that swell at times, too.  We'll still continue to monitor this.

    Update 3-16-20: No change in this regard.

    Update 3-30-20: Still no change in this regard.  I am not going to update this section unless the nodes shrink or grow a lot or another node starts being consistently swollen.

    Update 7-27-20: The right and left lymph node both appear to be the same size and slightly smaller than before (best guess is about 1cm each).  Hopefully, the nodes will continue to shrink or at least stay smaller.  I'm wondering if the Tagamet has something to do with this, as that is the only real change he's had (we are also trying a trial off the fiber gummies he takes (and it looks like he will need to resume them as he is starting to deal with a little constipation off of them), so there is a possibility that he had an issue with those, but unlikely as he was on them for at least a year without issue before all of this began), and will mention it to his doctor when we see her on Friday.

    Update 8-3-20: The lymph nodes are pretty much the same as they were last week.  His doctor was pleased, and is not sure if the Tagamet played a part in it, but was going to research that out.  If we switch back to Pepcid or he goes off the stomach med altogether and the lymph nodes swell again, we will definitely be looking for a GI related cause, and he may end up going to a Gastroenterologist over an Endocrinologist or Rheumatologist.  We shall see.

    Update 8-24-20: The lymph nodes are staying pretty consistent size-wise (about 1cm each).

    Update 10-12-20: The lymph nodes are feeling just slightly larger than they were, especially the right side, but still not as big as they'd been in the past.  I'd say the left one is just slightly over 1cm, and the right one is maybe up to 1.5cm.

    Update 10-19-20:  His lymph nodes are still feeling slightly larger than they were.  I'm not sure they are any bigger than last week, but I'll be keeping tabs on them.

    Update 10-26-20: His lymph nodes are like they were a few weeks ago, but I don't think they are growing more than the 1cm on the left and the 1.5cm on the right.  I'm still keeping tabs on this.

    Update 11-9-20:   His lymph nodes appear to be the same as they were a month ago.

    Update 12-11-20: His lymph nodes appear to be the same as they've been.

    Update 1-26-21: His lymph nodes appear to be about the same as they've been, but the right one is just slightly bigger than the left one now (about 1cm on the left and probably no more than 1.25cm on the right).
  • Headaches: His new normal is essentially no headache, but he's starting to have nearly daily headaches that range from 2 to 3 on the pain scale with some of them reaching up to a 5 or 6 in pain (no obvious cause for these headaches).  Normally, these headaches do not last long (normally less than an hour), and he normally doesn't take anything for them.  When he does take something (1 or 2 OTC ibuprofen), the pain meds seem to work.  He takes 2K Vitamin D daily that helped the headaches go completely away at first (he had intractable migraine level headaches for at least a month), too, but (because the headaches are breaking through at times) we are thinking it is no longer as effective as it had been.  He is also been working on drinking more water to make sure that there is no dehydration playing into this.

    Update 2-10-20: The headaches are a few times a week now, but he normally doesn't take anything for them.  They are normally a 2 or 3, but sometimes a 5 or more.

    Update 2-17-20: Headaches are the same as they have been - a few times a week, minimal to moderate pain, and he doesn't normally take anything for them.  We still cannot pinpoint an obvious cause.

    Update 3-9-20: His headaches have been a bit more often lately (pain ranging from 2 to 4 without pain meds, and generally go away within a few hours, but not always), but that may be in part due to the more active weather patterns we've been experiencing.  He's dealing with one right now that is in his left sinus, and he only feels pain when he moves his eyes (yes, that's moves his eyes, not his head) to the right.  It's very odd.  I did call the eye doctor about that because it was linked to eye movement, and we're monitoring it for now (they told me to take him to his primary doctor if it continues and let her make the call about sending him to them or not).  The Advil did mostly take care of it, but not completely - it went from a 4 last night to about a 1 right now.  If it continues, we'll take him in.

    Update 3-16-20:  The headaches are similar to what he experienced last week (more often, and ranging from 2 - 5 without pain meds, that sometimes go away on their own within a few hours), but the weird eye issue seems to have resolved itself.  We'll see how it goes.

    Update 3-23-20:  Similar issues as last week, but a little less frequency of headaches.

    Update 3-30-20: Similar to last week.  I will only update this section if he starts having headaches more often or having more painful headaches or they completely go away.

    Update 6-1-20: A few more headaches than normal lately.

    Update 6-22-20: When he has headaches, they are worse than they'd been and normally require him to take OTC Advil (normally, just 1, but sometimes 2).  He isn't necessarily having more headaches, though, so that is good.

    Update 7-27-20: He says that when he forgets to take his Pepcid/Tagamet (he is on Tagamet right now), he seems to always get a headache.  The headache goes away when he starts taking it again.  He still gets breakthrough headaches now and again like mentioned above, too, but he says the headaches are much worse when he forgets to take the stomach med.  From all appearances, the Pepcid/Tagamet seems to be one of the keys to keeping him feeling better, and the Tagamet may be doing a better job than the Pepcid was if it indeed is contributing to the lymph node swelling going down.

    Update 8-3-20: Along with forgetting to take his meds causing headaches, we have noticed that flashing lights (think strobe lights) cause nearly instant severe headaches.  So far, we haven't noticed any seizure activity from flashing lights, but we'll keep an eye out for that.  If that happens, we will be contacting his doctor and setting up more tests/labs.  Thankfully, headaches from flashing lights does not necessarily mean seizure activity will eventually happen or is happening , and hopefully it will stay that way.

    Update 8-17-20: Sean will be having an EEG when it can be arranged to check on the above mentioned headaches to make sure we are not messing seizure activity and to see how serious the issue is.

    Update 8-24-20:  We are still waiting to have the EEG done.  He is having more severe headaches recently, some are even migraine level.  If this continues, I will speak with his doctor about it.

    Update 8-31-20: His EEG is scheduled for the end of next month.  He is still having more headaches, some migraine level, too.  His doctor is aware of this, and we will make more decisions after we get the results of the EEG.

    Update 9-28-20: His EEG was "normal", so that is good.  He is still dealing with headaches, some migraine level, though.  We are meeting with his doctor in a few weeks to discuss next steps.

    Update 10-19-20: He is still dealing with more headaches, some migraine level.  His doctor wants us to see the results of the HIDA scan and address that issue before moving forward with any headache issues as his stomach issues and headache issues appear to be linked at least a little bit.  He may need to see the neurologist again, however.

    Update 10-26-20: He is the same as he was a week ago, though his headaches are nearly daily now.

    Update 11-2-20: Switching back to the Pepcid seems to have greatly reduced his headaches.  We'll know in time if this is a permanent change, but we are grateful that he has some relief in this area.

    Update 11-9-20:  He is still having migraine level headaches at time, though they still seem to be less often on the Pepcid.  Drinking some black or green tea daily seems to help keep the headaches away or at least muted, too.

    Update 11-16-20: We are back to essentially daily headaches, some migraine level.  Advil helps most times, and sometimes the tea helps.  Other times, not much seems to help the headaches.  The headaches have moved from the forehead area to the top of the head.  Normally, they are on the right, top of the head, but sometimes they are on the left or both sides/in the middle.  He says the pain is just different (sometimes it is just pain, sometimes it feels like squeezing or pressure), and sometimes he will have intense sensation without pain similar to numbness.

    Update 12-11-20: His headaches are about the same as they were a month ago, though he is having a few headache-free days or days were the pain is very minimal.

    Update 1-26-21: He is nearly headache-free most of the time, though he has silent migraines or mild headaches at times.
  • Stomach Pain/Nausea and Lack of Appetite: Normally not present now, but he will have days when he will have these without a known cause.  He is taking Pepcid for this, and it helps, but not as good as it once did as he is having break through nausea/pain (generally nausea) at times.  He also has less of an appetite than he did.  Some days will be better than others and (for now) he will eat because he knows he should even when he's not feeling hungry (though if he is feeling nauseated, he doesn't eat well, but thankfully that isn't very often), and we are having him weigh-in weekly to make sure his weight stays steady or doesn't drop too much.  If he does start to lose weight, then we are to talk to his doctor about it.  His weight today (1-27-20) was a little less than last week, but not enough to be too alarming, so I'm going to continue to monitor it and will notify his doctor if this becomes a pattern.

    Update 2-3-20: His weight has dropped a little again, but still nothing alarming.  We'll keep monitoring it.  If this pattern continues, we'll contact his doctor.

    Update 2-10-20: His weight has gone up a little, but it is not back to what it was.  We will keep an eye on it.  Also, he is having a little more stomach pains/nausea at times, but not really more than once a week.  His appetite tends to go in spurts of being really good to not great.  He is also drinking more water, so that's good, too.

    Update 2-17-20: His weight increased a little, so he is now back up to what he was.  His appetite seems to be better overall, too, so that's good.  He is drinking more water overall, too.  Hopefully this trend of feeling better and stable weight will continue.

    Update 2-24-20: His weight dropped, but not too much, so we're back to monitoring this again.  He is still drinking water better.  His appetite is normally good, too.  He has had some issues with heartburn/stomach pain/nausea at times over the last week, but nothing too crazy, so we're just keeping it noted and seeing if it continues.

    Update 3-2-20: His weight stayed the same, so that's good.  He is dealing with the nausea/stomach pain/heartburn at times still, too.

    Update 3-9-20: His weight is up a bit.  He's dealing with what we think is heartburn at times, and possibly a bit more often recently.  We're keeping an eye on it.  He's not been as consistent about drinking water, so we're working on that.

    Update 3-16-20: His weight is up again, and he is still dealing with the heartburn/nausea/stomach pain issue at times.

    Update 3-23-20: Same as last week.

    Update 3-30-20: His weight has dropped a little, but not too much.  He is also still dealing with the same heartburn/nausea/stomach pain issues at times.

    Update 4-6-20: His weight has gone up a little, but not too much.  Otherwise, he is the same as last week.

    Update 4-13-20: His weight seems to be staying with in a pound or 2 of what it was, so I will not update this section unless he's had a huge change in weight.

    Update 6-1-20: His weight has actually gone up a bit, but still nothing crazy.  He's having a bit more issues with nausea and stomach pain at times.  His appetite has been ok.

    Update 6-22-20:  His weight is still going up steadily, which is good because he is very skinny.  Nausea and stomach pain seems to be better.

    Update 7-20-20: His weight seems to be leveling off.  His nausea and stomach pains are better, too, as long as he takes his Pepcid/Tagamet as prescribed. (He is on Tagamet as of today because Pepcid is hard to get right now.  We're not sure if he'll stay on Tagamet or go back to Pepcid when it is available.  We shall see.)

    Update 7-27-20:  His weight is still the same.  He can have stomach issues (nausea and/or pain) when he forgets to take his Pepcid/Tagament (he's on Tagamet right now).  From all appearances, the Pepcid/Tagamet seems to be one of the keys to keeping him feeling better, and the Tagamet may be doing a better job than the Pepcid was if it indeed is contributing to the lymph node swelling going down.

    Update 9-7-20:  His weight is still doing well.  He is, however, having some periods of nauseating pain that are either just below the belly button or just above.  This pain in normally more mild (level 2 or 3, at most 4), but he has had 2 episodes where the pain was an 8 or higher.  One of these episodes of intense pain was also accompanied by body shakes.  His doctor is aware of this, and we've decided to do another ultrasound of his gallbladder soon.

    Update 9-14-20:  He continues to have the episodes of nauseating pain, but nothing too extreme normally.  So far, he has only had one other time when he told me he felt like he was going to have shakes again, but didn't.  It is something we're keeping tabs on, and I am making a separate category for the shaking episodes below as I'm not sure they are related to the nauseating pain, but might be.  Also, his ultrasound revealed that he gallbladder is contracted again and now there is some thickening.  He will be consulting with a general surgeon soon.

    Update 9-28-20: His meeting with the general surgeon was today.  His recommendation is for a HIDA scan which will have as soon as it can be scheduled, and then go from there.  We threw around a lot of possible next steps, but those all depend on the results of the HIDA scan and on the general surgeon's review of Sean's previous tests and labs.

    Update 10-5-20: He is still having some bad stomach pain days with nauseating pain.  The episodes don't normally last all day, but sometimes they do.  We're keeping an eye on it, and we will keep his doctor informed about all of this.

    Update 10-12-20: Same as the 10-5-20 update, though he says sometimes he just has nausea and not pain.  The nausea is becoming more often, as well.  There may be a link between spicy/fattier foods and the nausea/pain, but it isn't consistent enough to be 100% sure.  He is also dealing with more lack of appetite, and his weight has gone down a few pounds in the last week because of it. 

    Update 10-19-20:  He is doing the same as he was on 10-12-20.  His weight is still decreasing, but not enough to red flag, as of yet.  His appetite hasn't been the greatest either more often than not.  We are still keeping an eye on it.

    Update 10-26-20: He is definitely having more stomach issues.  We've switched him back to Pepcid to see if maybe the Tagamet was just a bit too strong.  So far, he hasn't had much change, but his appetite has been better, so his weight is up just slightly.  We also have instructions to start him on Bentyl to rule out/in IBS.  The plan is to see how he's doing on the Pepcid over the next day or so.  If he feels a lot worse, we will switch back to the Tagamet, and then over the weekend (after he's has a few days back on the Tagamet) place him on the Bentyl.  He has an appointment with a general surgeon a week from Tuesday to discuss how he's doing and to get a second opinion (this was his original surgeon's idea - I will explain more under "Future Plans").

    Update 11-2-20:  He is still dealing with stomach issues.  Some days are good, some days are not.  He feels like he may be doing a little better on the Pepcid, so the Tagamet may indeed have been too strong.  He also did not go on the Bentyl as he is already prone to constipation due to being gluten-free, so we added pear juice to his diet along with his daily fiber gummies.  He did have one issue in the last week where he woke up in the night feeling pretty bad, but not bad enough to wake me up.  It may have been bad gas pains, but we're not sure.

    Update 11-9-20: Taking Pepcid vs. the Tagamet, making sure he drinks enough water, and making sure he is taking the fiber gummies and pear juice consistently seem to be helping the stomach pain.  We're not sure which of these things is making the most difference, but I'm just glad he is feeling at least a little better in this area.  He has not really had any complaints in this department over the last week.  Hopefully, this will continue.

    Update 11-16-20: He is still doing a lot better in this area.  He hasn't had any stomach pain recently.  His appetite is improving, too.

    Update 12-11-20:  Yesterday, he started having pain in the lower to upper right quadrant of his abdomen along with pain in the back at the same level and on the same side.  It is not the nauseating pain it was before, and it does seem to be more positional or with movement (generally after he gets up or when he sits down).  I did talk to the GI office about this over the phone, and they have given me instruction on what to look for (fever, more intense pain, nausea) that would require a visit to the ER.  He does not have an appointment yet to see the GI, but I am hoping we might be able to get a TeleHealth, and hope to see about that on Monday.

    Update 1-26-21: He was able to have a TeleHealth in December of 2020 with the GI.  They decided to do a stool sample test, and it came back normal.  No other tests or labs are planned at this time.  He is still dealing with severe pain and/or nauseating pain at times (the pain ranges from middle near the belly button to the lower to upper right quadrant of the abdomen), and it seems to be somewhat linked to missing a dose of Pepcid, eating a lot of spicy and fatty foods in a row, or a combination of both.  Bananas sometimes seem to bring on some stomach upset, as well, for some reason.  That makes me wonder if there would be an issue then with potassium, and I will mention that to his doctor the next we speak.  His appetite also comes and goes.
  • Center/Right Lower/Overall Chest Pain/Tightness/Asthma-like Symptoms: He is also having some center and/or right lower chest pain/tightness at times like he did before he started taking the Pepcid with generally no obvious cause (this type of pain went away completely for a little while after he began the Pepcid).  He also sometimes has overall chest pain with generally no obvious cause.  Most of the time, these episodes are brief (minutes long), but other times they last longer.  The pain can range from just a tight feeling to being sharp and intense.  He has also had some tingling or "pins and needles" sensations in his chest.  He can also have times when it hurts to take a deep breath.  Because these sensations are sometimes linked to when he takes a deep breath or come after and/or during exercise, we are starting to wonder if this may be a form of asthma or have an association with asthma (asthma is very prevalent in the family history, and he did have it when he was younger with certain illnesses) vs. something like acid reflux (essentially what the doctor thought was most likely the issue and why he is on Pepcid) even though he has no wheeze or classic asthma symptoms.  We are keeping a close eye on this, and will let his doctor know if this continues or gets worse.

    Update 2-17-20:  He hasn't complained of this in at least a few weeks, so I'm glad about this.  We'll see if this stays away or comes back.

    Update 3-2-20: Along with the nausea/stomach pain/heartburn recently, he has also complained of center chest pain again off and on.  This is nothing steady yet, but we'll keep monitoring it.

    Update 3-9-20:   He's still complaining on center chest pain off and on, which is what I believe to be heartburn.  Tums did seem to help it, so we're going to assume it is heartburn for now.  If it continues or gets worse, we'll take him in.

    Update 3-16-20:  He is still complaining about the same issues as last week, but nothing too crazy or consistent to take him in for.  He also occasionally have issues of possible asthma-like symptoms (like loss of breath support more than shortness of breath) that are associated with activity (normally during things like singing vs. other physically activity), so we're suspecting maybe a bit more asthma (he's had issues with asthma-like symptoms since well before all this began).  He still says he feels like he is able to breath ok, and he's had no coughing.  Again, none of this has been severe enough to take him to the doctor over, but we will continue to monitor it.

    Update 3-23-20: He has not had as many issues with this recently, so that's good!

    Update 3-30-20:  He is having similar issues to what he had when I updated on 3-16-20.  This issues seems to come and go.  We've yet to pinpoint a true trigger, but will keep looking into it.  We have noticed that sometimes the pains/asthma-like issues are positional or physical (how he is sitting or a sport he is playing), sometimes they are linked to diet (spicy foods, especially), and other times they seem to be linked to his back or even chest cavity feeling/being out of place.  Sometimes he will have painful breaths (like it hurts to take a deep breath at times), but none of it is consistent enough or last long enough to report to his doctor sooner than our scheduled appointment with her in June at this time.  Again, he's had no fever with this at all, and there is no evidence of bruising or injury.

    Update 4-6-20: Nothing new to report here (he has days that he has essentially no issues, and other days when he has issues as described above), so I will refrain from posting anything here unless things are markedly different.

    Update 6-1-20: Some right lower rib/chest pain when he sings at times.

    Update 6-15-20: The odd pain when he sings is still continuing.  It seems to be brief, but it can be intense.  He seems to lose his ability to sing when this happens, too.

    Update 6-22-20: Same pain at times when he sings, and sometimes it will also be on the left side.

    Update 7-6-20: Same issues when he sings, but it also seems to be almost asthma-like.  It's not consistent enough to know for sure, but we're keeping tabs on it.

    Update 10-12-20:  He still has some asthma-like symptoms when he is doing intense exercise, but he will not have the asthma-like symptoms at other times of lighter exercise.

    Update 12-11-20: Same asthma-like symptoms with intense exercise.  He does have times where he feels a heaviness/tiredness in his chest, too, and that normally happens when he feels more tired.

    Update 1-26-21: He has not had issues with the asthma-like symptoms as much.  It is not completely gone, but much improved.
  • Rash/Itchiness: I am mentioning this here, but it isn't a symptom that is new to the last few months (rash only - itchiness was added in June of 2020).  He has had Keratosis pilaris since he was very young, and we're not sure if this is associated with his current issue or not.  We suspect it is not, but I will keep this here, anyway.

    Update 2-17-20: Because the rash has not changed or spread, we're assuming for now that it is just the Keratosis pilaris.

    Update 6-8-20: He has noticed that if his veins are visible ("popping out" or raised) that they itch.  He has also noticed that if he gets a bug bite that it does not itch when it normally would. 

    Update 9-14-20: I have noticed some facial flushing on his cheeks and sometimes on his nose at times, especially recently.  I plan to discuss this with his doctor when he sees her in a few weeks.

    Update 10-19-20:  His doctor had no real concerns just yet in this area.  She wants us to follow-up with the surgeon about the HIDA scan, and discuss further plans with him once those results are in.

    Update 11-16-20: I still continue to see some facial flushing at times.  Sometimes this is accompanied by an elevation in body temperature, other times not.

    Update 12-11-20: He is still having the same issues he was a month ago.

    Update 1-26-21: This has not changed.
  • Body Aches/Pains:  He deals with knee, collar bone/shoulder, and back pain at times with no obvious cause.  The knee pain at least may be related to growing pains, but we're not sure.  The collar bone/shoulder pain (left side only) may be due to the fact that he broke it awhile back, and it is just aching for some reason.  He may also be dealing with his back being out of place at times, too.  He has no joint swelling or redness, and the only joint pain he has at all is the knee and shoulder pain. 

    Update 2-10-20:
      Still his biggest complaint in this area is the back and left knee.  There is still no swelling or redness, just sometimes they feel stiff or sore, and his back feels out of place at times.  He also says sometimes his breast bone feels like it moves on him.  He does have a slight pigeon chest, so that may have something to do with that.

    Update 2-17-20: He seems to be having a lot of lower back issues (mostly feeling like his back is out).  Some times he still complains of knee pain or like his legs are weak and don't want to support him.  Thankfully, the weakness feeling normally passes within a few minutes and doesn't happen too often.

    Update 2-24-20: He has had a lot more knee issues in the last week, especially with his left knee.  He'll have times where it feels it won't support him, hurts, feels weak, or all of the above.  There is no redness or swelling, though, so that's good.  I've told him that, if this continues, we'll take him in to get it looked at.  It may simply be growing pains, but it's better safe than sorry.

    Update 3-2-20: Same complaints here with knee and back, though at times he will have side/hip pain.  Again, normally nothing too severe and no swelling or redness noted, but we're keeping track of it.

    Update 3-16-20: Same complaints here with knee and back, though at times he will have side/hip pain or even rib pain.  Again, normally nothing too severe and no swelling or redness noted, but we're keeping track of it.  He also occasionally has left side rib pain that comes and goes (has had this for a few weeks, he's told me); it is sometimes upon movement and rarely upon taking very deep breaths.  He says the rib pain (when he has it) is normally a 2, but can range up to 5, rarely a bit more than 5.  There is no bruising or sign of injury or of anything that seems too severe, so we're keeping an eye on it.

    Update 3-23-20: Generally, if he's going to have a pain complaint, it has been his left knee.  He still complains off and on about his back, ribs, etc., but not as much as his knee.

    Update 3-30-20: Nothing new to report from 3-23-20, so I will only update this if that changes.

    Update 6-1-20: More mid-back pain (some back pain came with nausea) and knee issues recently.  The knee pain is the worst.  Also has leg weakness issues.

    Update 6-15-20: More of the same pain as described on 6-1-20 is going on.  We're wondering if this can be fixed with chiropractic, so we will be looking into that after he has an x-ray to see if there is another issue we've missed with the back.  Years ago, he had a bit of a curve in his spine that seemed to be stabilizing or even improving.  The x-ray he is having done will tell us if that curve is back or worse or if there is another issue (like a leg length discrepancy) that may be causing the pain.  He is getting the x-ray this week, and we should know more soon.

    Update 6-22-20: Same issues with lower/mid-back and knees.  The x-ray was done, but we haven't gotten the results yet.  We hope to know more this week.

    Update 7-6-20: Same issues as mentioned above.  We did get the x-ray results back, and I will list them in the "Abnormal Labs and Procedure Results" section.  I will say this, though, the issues he's facing could definitely be related to spinal curvature and/or leg length discrepancy.

    Update 7-13-20: Same issues, but at times he says he feels like something is pushing out from inside against his spine (he's had this sensation off and on the whole time, but I forgot to mention it until now as he recently started talking about it again).  This issue normally resolves itself or is fixed when the back is aligned.

    Update 7-27-20: He is still having issues with the lower back and left knee.  On Friday, we're to see his doctor to measure leg length and see about getting a lift.  Next week, I am hoping we can begin chiropractic care with him to see if that helps, too.

    Update 8-3-20: The leg length discrepancy appears to be about 1/4 inch.  We are getting a lift for him soon.  We're hoping to start chiropractic shortly, as well, to see if that helps with any back/hip pain. 

    Update 8-24-20: We have still not gotten the lift for Sean nor started chiropractic care, though we hope to do both soon.  He is still dealing with mid/lower back pain and knee pain at times.

    Update 9-28-20: We got the lift for Sean and it already seems to be making a difference for him in regards to knee pain.  We hope this continues!

    Update 10-12-20: Though he still deals with back or knee pains at times, they are improved since he got the lift.

    Update 10-26-20: He is starting to have more issues with his back and knee again despite the lift.  Due to the area the back pain is, I'm starting to wonder if there may be some kidney involvement, and will look for signs of those kind of issues.  It is something I plan to discuss with the surgeon next week.

    Update 11-16-20:  He is doing a bit better in this area.  He will have issues with his back and knee at times, but not as much as he was.

    Update 12-11-20: He is having a bit more back and knee pain recently.

    Update 1-26-21: He is still having issues with is knee at times, but his back seems to be better.
  • Low Grade "Fever" and More Frequent Illness: At times he will run a 99 range temperature with or without chills at times when he is experiencing any of the above symptoms (he has no other sign of illness when these low grade fevers occur).  He has also dealt with at least 1 cold/sinus-type issue per month since this began, and he is normally my healthy kid who is sick maybe twice a year if that.

    Update 2-17-20: He still seems to be feeling not 100% more often.  He normally just has a lot more congestion or a dry cough.  Since there hasn't been a true fever with it (he's never gone higher than low 99s), he is still able to be out and about, but he does seem to wear out more quickly when he feels this way.
    Update 3-16-20: He says he feels like he feels pretty good more often, and we haven't had the 99 range temps lately.  He still has his days of just feeling off, but normally he feels like he's well in these regards.  Pains seem to be up, as mentioned above, but at least he doesn't feel blah, too.

    Update 3-23-20:  He seems to be dealing with more allergy-like symptoms recently, so we've had him take allergy meds more.  They are helping.  Other than that, he seems to be doing well in this area.

    Update 3-30-20: Same as last week.

    Update 4-6-20: No change, so I will refrain from updating this unless there is marked difference in this area.

    Update 10-5-20: For the first time in awhile, he ran a 99 range temp when feeling bad (bad stomach ache) for most of a day (he was fine the next day, and he had no other symptoms other than a bad headache which normally goes hand-in-hand with his bad stomach episodes more often than not).  We're keeping tabs on this, and will let his doctor know what's going on.

    Update 10-12-20:  We are still dealing with symptoms like those mentioned in the 10-5-20 update.

    Update 10-19-20:  Sean is still running 99 range temps at times like mentioned above and under the same scenarios as listed above.  Like I mentioned in other areas in this post, his doctor wants us to follow-up with the surgeon after we get the HIDA scan results before making any further decisions.

    Update 11-9-20:  Sean's temperature is remaining normal.  We have not noticed a 99 range temp (we only check when he's not feeling 100%), so that's good.

    Update 11-16-20:  He is starting to run more 99 - 100 range temperatures at times again with no sign of obvious illness (other than headache).  The temperature may stay elevated for an hour or so or all day, it just depends.

    Update 12-11-20: We have not noticed more elevated temperatures, though sometimes he will run in the 99s.  Again, there has been no obvious sign of illness with the elevated temp, though sometimes he will have a headache with it.

    Update 1-26-21: We have not had any issues with elevated temp recently, even if he is dealing with headaches or abdominal pains.

  • Body Shakes: I decided to make this a category of its own on 9-14-20 because I'm not sure the shakes he has experienced are from the nauseating pain, though they might be.  It is also somewhat possible that they could be seizure activity as he did mention he felt different after the episode was done (he'd dealt with extreme fatigue and lack of focus leading up to the extreme nauseating pain and body shakes, and then felt like the fatigue and focus issues cleared up quickly after the shaking was done, and the nauseating pain reduced after the shakes ended and not the other way around), and he could tell when he almost had another shaking episode.  Anyway, he has had 1 definite episode of uncontrollable shaking, and 1 definite episode where he felt like the shaking was going to start, and it didn't.  It will be interesting to see what his EEG says.

    Update 10-5-20: His EEG was "normal", as I mentioned previously.  He still feels like he could get shaky, especially when he is feeling really terrible, but has not had another shaking episode.  We're keeping an eye on it, and will continue to discuss this with his doctor.

    Update 10-12-20:  He still has times when he feels like he is going to start shaking or is shaking when he has more intense stomach pains.

    Update 11-2-20:  He has times where his hand shakes.  It normally isn't too long or too bad, though.  I will bring this up with the surgeon tomorrow.

    Update 11-16-20:  He is still having the issue with the hand shaking (both will do it).  The shakes seem to be lasting slightly longer now.  He also noticed that, months or longer before all this started back in October of 2019, he had more random and intense hand shakes.

    Update 12-11-20: He is not having any worsening issue with the hand shaking recently, and appear to be gone for now.  This is one of the symptoms that comes and goes at random.

    Update 1-26-21: The hand shaking is still showing up now and again, but it is not gotten more intense.  The hand shaking seems to happen after he has done more intense activity.

  • Abnormal Labs and Procedure Results: {Here I will only list current labs that are off, not ones that were  off or that are on the border of being off.  All labs like that, along with labs listed here, are being monitored, though.}  His ANA was positive (1:320, Dense Fine Speckled pattern), but all titers were within normal limits.  All other blood labs are now within normal other than the eosinophils which are mildly high (0.7 now) and have been this whole time.  His UA revealed a high pH and +1 protein, but neither of these are too concerning at this point, but we are keeping an eye on things, making sure he gets enough water, etc.  The only other oddity of note was that his gallbladder was contracted when he had his ultrasound, but they are not too concerned about that at this time because there was no signs of stones or infection, and he isn't in major pain.  Again, this is something we are aware of and monitoring and know what symptoms would constitute an emergency.

    Update 6-22-20: Recently labs showed normal C-Reactive Protein, Urinalysis, and CBC with the exception of his Eosinophils (they are now 0.6 vs. 0.7 from the fall).  No other work-up will be done at this time, nor will he be referred to another specialist unless something looks off with the x-ray or if labs come back abnormal in future.

    Update 7-6-20: X-ray came back showing "increasing levoconvex curavture of thoracolumbar spine, centered at T12 level.  Curvature is approximately 15 degrees.  No acute abnormality identified.  Based on measurements to the inferior edge of the image, the left leg appears slightly larger than the right.  There is associated pelvic tilt."

    Update 9-14-20:  He abdominal ultrasound showed a contracted gallbladder with some thickening.  We will be discussing this with a general surgeon soon.

    Update 9-28-20: His EEG was "normal".  We will discuss next steps with his doctor in a few weeks when we see her again.

    Update 10-19-20:  We are still awaiting the results of his HIDA scan.  No other tests have been ordered at this time.

    Update 10-26-20: Sean's HIDA scan results were "normal", though he did have pain during the test so there may still be an issue with the gallbladder.  His surgeon suggested a follow-up/second opinion by another surgeon in his office, so that's what we are going to do next week.  No other labs have been ordered.

    Update 11-9-20: Sean's most recently labs showed another high ANA result (1:160, Homogeneous Pattern).  We also got a copy of the HIDA scan report which noted "enteral gait aspect biliary reflux".  All other labs are "normal".  No other labs were ordered at this time.

    Update 1-26-21: As I mentioned above, he had a TeleHealth appointment with the GI in December of 2020.  They ordered a stool specimen test, and that all came back normal.  No further labs or tests are planned at this time.

  • Future Plans: As of now (6-22-2020), he has no plans to see a specialist.  If the x-rays look good, we will try chiropractic to see if that helps with some of the back pain.  If they look off, we will discuss with the doctor about next steps which still may include chiropractic.  We also talked about re-visiting the possibility of a gallbladder issue if he continues to have nausea, lower/mid-back pains, etc., because it was contracted in his ultrasound in the fall of 2019.

    Update 7-6-20:  We plan to look into chiropractic care for Sean to see if it helps with the pain or even the scoliosis.  He is to have another x-ray in December to see if there is anymore change (the curvature is not bad enough to see a specialist about at this time).  I will probably look into having him get the x-rays needed to check for leg length discrepancy if issues continue despite chiropractic care or if the chiropractor recommends them sooner.  We will discuss any other issues with his doctor as they arise or if things worsen.

    Update 7-13-20: I asked for the leg length study and for the referral to chiropractic today.  Hopefully I will hear back from his doctor soon in regards to these things.

    Update 7-20-20: We are working on getting the leg length study, and hope to get him to a chiropractor soon.

    Update 7-27-20: He will see his doctor on Friday to get his legs measured to see about getting the left, and we hope to start chiropractic care next week.

    Update 8-3-20: As mentioned above, the leg length discrepancy appears to be about 1/4 inch.  We hope to get the lift soon and start chiropractic shortly. 
     His doctor is not sure if the Tagamet is the reason the lymph nodes shrunk or not, but, i
    f we switch back to Pepcid or he goes off the stomach med altogether and the lymph nodes swell again, we will definitely be looking for a GI related cause, and he may end up going to a Gastroenterologist over an Endocrinologist or Rheumatologist. 

    Update 8-17-20: As mentioned above, Sean will be having an EEG when it can be arranged to make sure we are not messing seizure activity and to see how serious the issue is with his pulsing-light-induced headaches.  We are still working on getting the lift and on starting chiropractic.

    Update 8-31-20: As mentioned above, his EEG is scheduled for the end of next month.  After we get these results, we will make more decisions regarding any other testing and such.  We still are working on getting the lift and on starting chiropractic care.

    Update 9-7-20: As mentioned above, he now will be having another gallbladder/abdominal ultrasound as soon as it can be arranged.  He will also be having the EEG in a few weeks.  We are still working on getting the lift and on starting chiropractic care soon.

    Update 9-14-20: As mentioned above, we will be discussing his ultrasound results with a general surgeon soon to see if he needs his gallbladder removed or what have you.  His EEG is scheduled for next week.  We are still working on the lift and on starting chiropractic care - we are waiting on those things now until after we get the gallbladder situation figured out and have the EEG done.

    Update 9-21-20: Sean's EEG is tomorrow, and his appointment with the general surgeon is scheduled for next week.  His lift is in the mail, and we hope to have it soon.  He still has not started chiropractic care and will not until after his meeting with the general surgeon (and any surgery, if applicable) and we get the results from the EEG.

    Update 9-28-20:  As mentioned above, the EEG was "normal" and next steps in this regard will be discussed with his doctor in a few weeks.  The general surgeon has ordered a HIDA scan, and we will decide on future plans after that is done and the general surgeon has reviewed his previous labs and tests.

    Update 10-5-20: Sean's HIDA scan is set for Thursday, and he sees his regular doctor next week.

    Update 10-19-20:  As mentioned above, we are still awaiting the results of his HIDA scan.  Once we get those, we are to discuss everything with his surgeon and make a game plan.  He could still end up having surgery (if the gallbladder is a problem or they suspect another issue that surgery could fix/detect), he could have to go see the neurologist, he could have to go see a GI specialist, or he could end up seeing a both specialists and/or a few more.  There's a lot up in the air right now.

    Update 10-26-20: As mentioned above, Sean sees another surgeon next week for a second opinion as advised by his original surgeon.  He may end up needing a scope, exploratory surgery, gallbladder surgery (since he did experience some pain during the HIDA scan, even though the results were "normal"), a visit with another type of specialist, more labs/tests, etc.  We'll see.  If the Bentyl helps, then IBS may be our culprit.  There's a lot of things to consider, and I look forward to speaking with the surgeon next week.

    Update 11-2-20: Sean had lab work done today to recheck some things.  He sees the surgeon tomorrow, and we will discuss how he is doing and future plans.

    Update 11-9-20:  Sean will see a gastroenterologist in the near future.  We will discuss with him what is going on with Sean, and then see if more tests or labs are warranted, or if he suggests a different specialist such as a neurologist or rheumatologist or both.

    Update 12-11-20: Sean's GI appointment has yet to be scheduled, and I plan to call on Monday to see about possibly getting a TeleHealth for him.  We have been given instructions on what to do if he has new or worsening symptoms (i.e. fever, worsening pain, nausea/vomiting) that would require an ER visit.

    Update 1-26-21:  Sean's regular doctor is supposed to be back from maternity leave next month some time.  Since the test the GI doctor ordered was normal and we have not heard from him since, I am assuming the GI has no follow-up planned, and would only want to hear from me if Sean had further pain issues (I mentioned to the GI's nurse about issues Sean was continuing to have, and they have not gotten back with me, so I am assuming he has no plans to do further tests right now).  I am also assuming that further care will be delegated to Sean's primary, and I plan on calling her in the future to discuss lab results that we taken while she was out of office as well as his other continued symptoms.  So, I basically plan on "checking in" with her, and seeing if she wants to check certain labs again (namely ANA and related labs), order any further tests, see about a different specialist, or if she just wants us to monitor him for now.

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