Thursday, July 26, 2018

Luke's Strep Throat Journey

I have been wanting to document this for a while now and am so glad that I am finally getting it on the blog to reference back to as opposed to just having the info all jotted down in the note section of my planner that I know someday I'll never be able to find again. 

So let's start at the begging....

April 2017: Luke got his first round of strep throat and was prescribed an amoxicillin for it...10 day's of the "pink" medicine and then we had a recheck after that and it was still there so he got another round of the "white medicine" (Augmentin- is the white amoxicillin with a booster. After a few trials with the pink we just started advocating for him and asking if they would start with the white every time because he clearly needed something stronger because every time he had the regular amoxicillin for ANY thing we would need to go back for another round of the white.)

May 2017: Strep throat
June 2017: Strep throat
July 2017: Strep throat
JUNE AND JULY 2017- MONO (very rare for children under 8 years of age to get mono...and at this point he was 5...not even 5 1/2)
August 2017: Strep throat
September 2017: Strep throat
October 3, 2017-Strep throat and his tonsillectomy and adenoidectomy consultation
October 31, 2017: Tonsil and Adenoid removal surgery by Dr. Carney (who now has moved! We absolutely LOVED her and could not say enough good things about this ENT specialist)
November: Check up from surgery...All looked well and he recovered and healed wonderfully.
Nov.-Feb : GOOD! We had a good winter for Luke and he did not have strep....


March/April: His P.E. teacher and school teacher had both mentioned that he seemed "less interested" in activities. His p.e. teacher especially said "Luke just usually is all over running all around having fun and playing the games and he just doesn't seem like himself and I wanted to be sure everything was ok at home." And of course all was fine with us at home and I asked Luke that day "Buddy does your throat hurt"....and he replied.... "YES it hurts every day". 
Now through all of this he had never said he had a sore throat but maybe one or two times out of all of those dates above. We either noticed that he seemed different by attitude or behavior OR we took him in for a re check to be sure it was gone and it wasn't. One time he was bringing the garbage cans up the hill and was crying because he "couldn't do it" and I said to Matt "I bet he has strep throat and sure enough he did." They would always ask him when we brought him in if his throat hurt and he would usually say no and of course they would say to me then why did you bring him? My response would be..."He's sleeping more, eating less, lethargic like and not as active and is super moody." Almost every time they would mention how strong he is because the strep would come back positive when to them he seemed not sick at all. 

So the teachers mentioned that to us and we take him to the doctor.....BOOM

End of March2018/Beginning of April 2018: Strep Throat
After his 9th round of antibiotics I saw the on call pediatrician since mine was out of the country and asked if we could get some blood work done on him to be sure all other things were ok. I know that kids will still get strep throat after having their tonsil's and adenoids removed...they did inform us of that at the time of the surgery. However, they also told us that it is the first 2 years that you would noticed the biggest improvement and much less( if any at all) strep throat cases for him would be dominantly non existent and then after the first 2 years post surgery strep throat could return like regular children get and catch it from friends at school, sibilings, during cold season etc. Luke did have 4 months without strep which was a blessing but it sure wasn't 2 years...or very long at all. I did however hope it was just a fluke...but wanted to get the blood tests to make sure that strep wasn't metabolizing somewhere else in his body that was causing him to just constantly live with an "infection". That isn't good for you nor can it feel good to have your body working in overdrive alllll the time. For me I also wanted to know because It's also a terrible feeling to put your son on antibiotics that often because they too have cons to them. 
Luke has complained about his stomach hurting for months and months, that I too have been tracking to see if it's a byproduct of the medicine or if there is something else going on with an allergy, intestinal bathroom type things etc. 

So we had the on call pediacian do the blood work after a very good and through appointment and this is what Dr. Spellmen suggested we should check for and look at in regards to his throat, stomach, and overall health:

April 2018 Blood work:
Bacteria Culture 
Tested for Influenza A & B 
Tested his thyroid  stim hormone 
Heterophile antibodies
Auto Hemogram w/ Auto Diff
Group A Strep Screen
Epstein-Barr Ab test

Praise the Lord ALL LOOKED GOOD! Once you have mono once you're apparently more susceptible to it so I was so curious if it was back but thankfully it wasn't. So maybe just a fluke strep throat in the spring.

But then.....

End June 2018/Beginning of July 2018: Strep throat AGAIN (time number 10 in 14 months) This time he did have a fever and that's how I knew he had it. I am assuming he had it much sooner though by his attitude and such but the fever didn't come until the end of June. 

So we made another appointment and this time We saw our family doctor at Morrison Medical Associates and she just felt awful and said she felt terrible even have to give him ANOTHER round of antibiotic. But she reminded me that strep throat left untreated can be very dangerous as well so she gave us another prescription and referred us back to the ENT to have him looked at by a specialist. 

July 17, 2018 : ENT appointment. I had to take him to Dr. Geisler since our wonderful ENT moved away. This doctor unfortunately was so not helpful and down right rude. I left sobbing and my sweet and so loving husband even went as far as calling the clinics patient advocate department infuriated over it all. They addressed the situation with the specialist and she agreed the appointment did not go as it should. We were not charged out $75.00 copay for specialist appointments due to that situation... Thank GOD! So after that we scheduled an appointment back with our pediatrician to see his thoughts. The good that came out of the ENT appointment is she agreed this repeat strep isn't normal however the surgery was and still is successful. None of his tonsil tissue started growing back(that can happen) and everything looks very good from a surgical stand point. So that was nice to check off my list. 

That leads us to Today

July 25, 2018: Dr. Corpuz enjoyed all my detailed info from above on top of being able to see it all in the computer from records! Hahaha!! But hey...I have to keep track because sometimes we go in town if we can't make it to Clinton.

Here are his thoughts....
Luke's strep throat has colonized. That basically means it is now a resident there. It is a bacterial infection of the throat that lives there. Unfortunately that means that it is either "active" or "non active". But if you swabbed and cultured him on the daily it would probably always test positive for strep. If it causes symptoms of a super bad sore throat or a fever for more than 2 days then getting antibiotic is best....if it doesn't than it is apparently ok to leave it be. It is a little bit of a struggle for me to hear that because I know under treated strep throat is dangerous. I have a very good friend of mine that had her son's travel to his brain and after going to iowa city they finaly realized that he needed a seriously strong medicine to clear that infection. So of course I beg the question with "How do I know when to treat and not treat him...I don't want to give him ONE MORE ROUND of medicine but I would hate to leave him untreated and cause more problems." 

His reply was:
"You're his mom....follow your heart...if he has a fever get him treated with medicine and if he doesn't then let his body heal itself. In the mean time keep doing what you're doing (we have been giving him a good live probiotic to hopefully help with his gut health and restore the good that has been stolen over this past year.) and be sure to give good nutrients, proper rest, lots of fluids, vitamins (extra in the winter etc) to keep his colonized strep laying as dormant as possible and he will be fine. 

He did decided to run another blood panel and check his urine. He had 6 tubes of blood taken and successfully went pee in a cup for the first time.  He wanted to be sure his liver isn't being effected by all this strep and to check for any other stationary infection. 

We got the results back from part of far these all look good and are normal: 
Platelet count
Electrolyte count
Kidney function
Thyroid function
Urine (liver) function
SOOOOO very thankful for all of that!

The one test they did also take today that will take a few days to get back is a celiac panel. He is thriving and striving in growth so that is a great sign...
however they wanted to rule out his chronic stomach ache issues just to be sure by running a celiac panel test to make sure he doesn't have any food allergies or celiac disease. I will update on that when it comes back. 

For the future....we just pray...that he is DONE with it. All the doctors do agree that it's not normal he seems to be getting it again and again especially after his recent surgery. We are going to boost his immunity and watch him carefully. We pray these probiotics will restore his tummy and those aches will go away. Dr. Corpuz did say that if they don't go away that he would possibly want to send us to a gastrointestinal specialist to take a look inside his tummy closer but from what he can tell the abdomen seems fine and the positive blood test reports also seems like a good sign for as far as any major issues go. He said effects from antibiotics on a stomach (if that is what the pain is from) can take quite a while to restore back to "normal" feeling. 

In our own efforts we have:
*changed his toothbrush so many times
*tried new toothpaste just incase for some crazy reason the one he was using wasn't right
*implemented gargling mouth wash daily because one doctor told us it may help with bacteria in his throat
*changed pillow's and pillow cases
*Daddy pulled back the carpet and all the ceiling tiles to ensure there was no mold or anything causing this chronic strep throat
*Changed the fan from air purifier to regular box fan
*started running a dehumidifier by his room (even though we live on a hill, have never had water, he has huge windows we open often, and air circulates so well in our split level house...we couldn't help but try that too) 
*live probiotics
*diffusers in the house
*lots of water, juice only once a day, healthy food, lots of good sleep and naps when we can, etc
*and much more I'm sure I can't even think of. 

Now we just wait for the celiac test and keep praying he doesn't get another fever and need more antibiotics for his strep throat. 
IF that does happen in the near future....I am assuming they will send us elsewhere. 
God is good...Luke is thriving and a super healthy boy. So many other children have it so much we will choose gratitude and have faith for the future. 

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