Nasty Infection

Last Sunday (12/12) Alexander came down with a nasty upper respiratory infection with a low grade fever.  It seemed to spread quickly throughout the house, and Wednesday I brought him to the doctor.  Since his fever was continuing and his cold was worsening, we thought he should be seen.  The doctor confirmed that, yes, he was very sick, but also that he had swelling in his right ear and behind his right eye.  It seemed like a viral infection had turned bacterial, as well, and typically at this point a doctor would prescribe an antibiotic and send you on your merry way.  This is where our journey must differ from the norm, and here we sit 9 days later with a sick toddler and over a week of work missed.

Because of Alexander's GI history, there is great concern with prescribing him antibiotics unless absolutely necessary.  As his doctor put it, "I don't want to give him an antibiotic for a few days, and have him sick for the next 3 months because of it."  While I have always known that antibiotics can cause some GI upset, we never thought about how the treatment of common illnesses could upset Alex's system.  Aside from little colds, this is only the second time Alexander has been sick with an infection in 21 months. 

Today we went back to the doctor.  His sinus infection seems to have dissipated a bit (the eye swelling has gone down), but his ear has gotten worse.  It seems to be more uncomfortable than painful.  He gave us a script for Zithromax (a 5 day antibiotic) to have in the event his fever jumped up to 101 or his ear seemed to be terribly painful.  We are not to fill it at this time - he said it's about 50/50 if we'll need to use it.  If we do, he must go on probiotics at the same time, and continue them for about 2 weeks after the antibiotic is done.  We are really hoping to not need it.  His GI system has continued to be mostly calm on the dairy-free diet with the Prevacid.  We do NOT want to upset it in any way!  So for now, it is just fluids, rest, and Tylenol for any pain management. 

Interestingly enough, he said that the infection may cause his ear to perforate, but that it would be a good thing for Alex.  It would drain the infection and heal on its own.  It's so weird how so many things that would appear "bad" are actually good, and the things that seem "good" can be so bad for him. 

Thanks to everyone who's been checking in.  And a big "Thank you!" to my wonderful coworkers (you know who you are) who have been so understanding and kind during my absence.  Alexander also sends his love to his playmates he's been missing.  I told him we were going to the doctor this morning and he said, "Sylvie?! Lou?! Cazowine?!" [Sylvia, Liam, Caroline].  He can't wait to come play again!

Merry Christmas to those who observe and a very Happy and Healthy New Year to you all!

All is well

So far so good with the Prevacid. Alexander is sleeping much better at night, and is more comfortable during the day.  He's been able to tolerate some foods in moderation that he couldn't have at all before (like fresh apples).  His diapers have remained relatively okay, and we aren't taking our "presents" home from day care anymore. 

Overall, we'd say he's doing very well.  We are going to continue to keep him completely off of milk and see if the lower GI issues return while he is OFF milk.  Though he's been having mini flare-ups, they only last for a day or so and then resolve (as opposed to the weeks long flare-ups before). 

We were able to enjoy home-made pizza as a family the other night - it was a very special moment for us.  A local organic grocery store had really good vegan cheese. It didn't taste like mozzarella, but it did taste good!  :) 

All is calm and well for the time being.  We feel blessed to have such supportive individuals in our lives and such a funny, sweet, and entertaining son. 

Approval!

After some tense moments today (and lots of prayers!), Alexander will be able to go back on the Prevacid.  What is (hopefully) even better is that there is now a generic.  Generic means a much less expensive prescription, but there's always that apprehension about whether or not it will be as effective. 

Say a prayer all goes well at the pharmacy and that Alexander's system responds favorably!

Meds

We contacted Alexander's doctor today to put him back on his Prevacid.  It was with a heavy heart I made the call.  I don't think any parent wants to have their child on meds long term.  We really tried everything we could to keep him off, but we have seen a steady increase in his reflux and decline in his sleep (which affects many aspects of his health and well being).  Since we can see where he's headed, we decided to put him back on before he is at a crisis point.  Now we wait for the insurance to approve it.  Our doctor has been relatively confident that it will go through okay.  We now wait and see.

Other than his intense gas pains, Alex's lower GI system has otherwise settled a little bit.  He is loving his books, puzzles, blocks and magnadoodle.  We are excitedly preparing for the holidays and hoping that Alexander will be feeling well by then. 

Blood test results

I got Alexander's blood test results today.  All of his levels were normal.  That should make us happy, and in a way it does.  It's also disappointing that we've hit another dead end.

His newest issue is these random, intense attacks of gas pain.  He had these back in February and March, but they had subsided since then.  I hope they stop soon - it's so heartbreaking to watch.

So, we are back with the default diagnosis of "it's just something he'll grow out of."

Bloodwork Complete

Alexander's pediatrician was all for the bloodwork, so I ran down there yesterday to grab the script and we were at the lab at 7AM this morning.  Unfortunately for Alex, he wasn't seen until 8:15 - that's a loooong wait for such a little, active guy.  He was extremely patient and we all survived the actual blood draw.  He checked some different baselines and ran the Celiac test.  We hope to hear the results by the end of the week.  His doctor also said that if we start being concerned that there might be internal bleeding (consistently excessive pain or disturbing diapers) to just run a diaper down and they'll screen it for blood.

So we'll see if anything shows up in his bloodwork, and just continue our watchful waiting. 

Happy Halloween!

I wish Alexander was able to enjoy this weekend more.  He had some nice visits with family and friends yesterday in his costume.  I know we all enjoyed seeing him dressed up more than he did.  Today, he was able to have a good visit with his Grandma, but really tanked shortly thereafter. 

His appetite has been down the past few days, and this afternoon/evening, he has been having terrible gas pains.  He is in so much pain - it is so sad. The past few days have also shown some questionable diapers.  We are calling the doctor in the morning and requesting the Celiac bloodwork. Hopefully, we will be able to get it done Tuesday and have that piece done.  We will see if it'll be that easy.

As a plus for Alex, since he can't have candy, he has received a number of Halloween gifts from family and friends!  Many new and fun things to enjoy, and lots of new ORANGE things!! (his favorite color).

An update...

I have received a number of emails looking for an update on Alexander, so here it is...

As far as Alex's lower GI tract - he had a very good week.  It wasn't ideal, but it was definitely acceptable and seemed to be headed in the right direction.  Yesterday and today began to look questionable, so we will see what this week brings.  Hopefully, it's just a little dip in the healing process, and things will look up again this week.

Alex is walking a very fine line between needing to go back on meds for his upper GI tract.  His reflux has definitely been worse these past 2 weeks.  It has been flairing up daily.  The "fine line" comes in because sometimes it is painful for him, and other times it is painless.  The one area of most concern at the moment is the reflux in his sleep.  I think it's actually safer for him if it is painful while he is sleeping.  "Why?" you ask. Because he wakes up and sits up. Whereas when he vomits in his sleep and it's painless, he is more likely to aspirate because he doesn't wake. 

Prevacid is the med that controls the burning.  Reglan is the med that controls the tone of his stomach and prevents the reflux from occuring.  Reglan is also a very dangerous medication and one we are trying desperately to avoid. 

We don't really care for any of these med options, so we're choosing option 3 - Alex quickly grows out of this and it is no longer an issue!

In spite of his troubles, Alexander is doing really well.  He has been happy, chatty and mischievous - as you'd expect any 19 month old to be.  He is continuing to gain weight nicely and is looking healthy.  He even has a little bit of fat on his belly you can pinch now! 

Combine Alex's love of the outdoors with his love of the color orange, and you can imagine how much fun he is having this fall!  We're excited to make some visits this Halloween weekend and I'll be making a special treat for Alex to enjoy.

Thank you all so much for your continued love, support, and prayers.  They are truly appreciated!

We are blessed...

We are blessed to have such a wonderful pediatrician!  He called me today before he left for Boston.  He was able to speak with the specialist and get Alexander's chart straightened out.  He went over with me what changes were made and verified that everything he had said was accurate.  Everyone is in agreement that we will not do anything for the time being.  It seems like Alex's lower GI tract may be settling down, and everyone wants to see how long this lasts before any more testing is done.  The specialist also agreed to the Celiac blood work when he flares again.  A simple blood test seems like a more logical step than more scoping right away.  If they can keep Alex's file straightened out, we have slightly more faith in another visit to Albany Med. 

We are blessed to have so many caring friends and family.  Many people have reached out to us.  In just the short time that this blog has been up, we've heard about specialists throughout the country that may be able to offer us assistance.  We have had prayers given on our behalf and received words of encouragement.  We have been offered sympathetic ears and warm embraces. 

We are blessed that Alex's condition is not more serious and has not affected his development.  Many children with Alex's conditions (particularly this lower GI issue) have developmental delays from the malnurishment.  His pediatrician always remarks on how impressed he is with Alex's development and how lucky we are that he isn't having developmental issues.  For some kids, that's what it takes for more intervention to happen. 

We continue to teeter with the reflux issue, but are grateful that things are a little quieter for the moment.  We are trying to enjoy this lull, but it's very hard to not be anxious about when "the other shoe will drop."  Thank you all for your support.

Love our Pediatrician!!

So we saw the pediatrician this morning.  First he addressed the current reflux issue.  Because the reflux is not presently causing Alexander pain, we are going to keep him off meds.  We will continue to keep an eye on it, and if any pain occurs or blood returns, he'll have to go back on meds.  Our doctor continued to reassure me that they would be able to get approval for Prevacid if Alex needed to be back on something. 

Then we turned our attention to the issue with the specialist.  He was sadly not surprised to hear about my issue, as they have had many similar issues.  I was shocked to hear that none of Alex's previous test results were sent to his pediatrician.  They had requested them (the doctor had personally called for results) and never received any word.  He encouraged me (three times) to seek another opinion; to have fresh eyes look at Alex's history.  He suggested going to Boston.  Our pediatrician will actually be out in Boston this weekend, and said he would talk to the doctors out there and see who they use.  He had some names that he had referred to in the past, but wanted to make sure they were still practicing out there. 

He will also be calling the specialist either tomorrow or next week to personally clear up Alex's history and decide on a course of treatment.  He was baffled as to why the specialist wouldn't order a simple blood test.  So, as a mom, I felt very supported after our visit and it was comforting to be validated in the midst of all of this.  As a bonus, Alex was finally able to get his 18 month shots and flu vaccine.  He was also able to stop at his child care provider's for a playdate after the appointment.  He's sleeping comfortably at the moment, and hopefully he'll continue to feel well.

Frustration...

The screw-ups in Alexander's pediatric GI office continue.  I had a nice argument with the nurse there this morning.  Last week we were planning to schedule Alex for another endoscopy and a colonoscopy to screen for Celiac Disease, and to see if anything else was going on.  This morning she calls and says that Celiac has been "ruled out" because he already had an endoscopy in July. "But he wasn't on wheat then,"  I said.  "Yes he was," says the nurse.  "No he wasn't," I say.  "Yes he was. The doctor said he was," says the nurse.

So they referred him for an abdominal X-ray to look for a blockage.  I called his pediatrician in my frustration about not being listened to and my confusion about why they are SO screwed up over there.  We're seeing the pediatrician in the morning.  He had his abdominal X-ray this afternoon, but no results yet.

He has been having trouble with his reflux over the past week.  His pediatrician is looking to put him back on a med tomorrow when we meet.  We hate the thought of him on meds again, but it seems to be necessary for atleast the time being.  I am glad that we had the time "off meds," though, so we could see how he would do.

Alex's Story

***This post is intended for anyone who wants more information on Alex's GI history and for anyone who may be having similar struggles with their child. Feel free to ignore it, or contact me if you have any questions.***

Though I had a relatively eventless pregnancy, my labor was full of excitement and Alexander was born via emergency c-section. By the second day he was doing well with nursing, but wanted to feed very often.  Additionally, he was deemed "inconsolable" in the hospital nursery and they would only have him there for his daily checkup.  

After 4 days, we were able to go home.  While home, Alexander never slept.  Now people say that a lot about newborns, but he literally never slept.  You could get 20-40 minutes (max) if you held him - which had to be done constantly.  Whenever he was put down he would scream - not that sweet little baby cry, but what you'd expect to hear from a toddler who's just fallen head first into the pavement.  There were many days when he would cry no matter what I tried.  There was one day that he cried for over 20 hours.  Additionally, whenever he ate, he'd projectile vomit everything back up.  So it was this constant cycle of screaming, feeding, vomitting, and screaming again.

At a week old, Alex was diagnosed with Acid Reflux and started on Tagamet.  Instead of throwing up every feeding, he'd only vomit a few times a day.  After a few months, he was switched to a different formula (Enfamil AR) because it was thicker and would coat his stomach better.  With that switch he only threw up one to two times a day. [Due to Alex's reflux and mismanagement of my health at the hospital, Alex was unable to nurse for more than a few days.  Yes, this was devastating to me.]

Throughout this time, as well, Alex continued to struggle with sleep.  Laying down aggravated his reflux terribly, and he would constantly "comfort feed" to settle his stomach.  Additionally, Alex had a slew of lower GI issues simultaneously.  It took many weeks to get the right balance of powdered formula and ready-made formula.  Too much powder would constipate him and too much ready-made would give him diarrhea.  He also consistently had low-grade temps. 

Things seemed to regulate themselves between 3 and 6 months.  From 6 to 9 months things were great!  At 9 months, however, everything tanked and we're still digging ourselves out of this mess.  Just before Christmas, he developed a rash on his face and his reflux went out of control.  By the beginning of January, he started losing weight from constant diarrhea.  By the second week of January he was in terrible pain and had become listless. He was switched to Prevacid which helped control his reflux. After a few days, his doctor took him off of milk and switched to soy - immediate turn around!  We thought, "Problems solved."

Not quite.  Since then it has been this rollercoaster of lower GI issues (with sporadic reflux) that never seems to end.  He has had bouts of spitting up blood and some blood in his diaper. It was suspected that the spitting up was caused by the acid reflux burning the tissue in his esophagus.  It was also suspected that he had developed colitis from the aggravation to his lower GI tract causing the blood in the diaper. 

By March he was taken off of all wheat products and referred to a Pediatric Gastroenterologist. Because it is such a busy practice, it took until the end of June to get in to see him.  While we waited, Alex was allergy tested for all the major allergens (we thought for SURE the milk allergy would come back positive.)  Nada.  No allergies.  When he saw the specialist, he was referred for an upper GI and an endoscopy with biopsy.  He had to be awake for the upper GI and it was absolute torture for all involved.  The endoscopy was concerning because he was under general anesthesia.  His procedures went well, and other than the upper GI confirming horrible reflux, no results.

At the time, his lower GI tract seemed to calm down for no known reason, so everyone thought it had just resolved itself.  He was put back on wheat and was even able to tolerate milk cooked in food (like, banana bread, etc.)  In late July, we received word from our insurance company that they were not going to cover his Prevacid anymore and we had to switch to a generic (Prilosec).  After 5 days, Alex was taken off of the generic due to a nasty reaction (diarrhea, headaches, photosensitivity).  We decided to try him off of meds, and while his reflux has been manageable with diet modification, his lower GI system has yet to regulate itself again. He is now off of all milk products again, and no one can seem to come up with any "good leads" as to what is going on.