Tuesday, November 5, 2013

Taegan Milk Trial / T Tubes / CPAP

We really enjoyed the milk trial and it really opened up many new foods and cooking for the whole family was definitely easier adding milk. We were all sure Taegan would pass. We felt good about it and he didn't have any signs/symptoms of milk bothering him. He told me several times that we didn't need to do the scope because he knew he was going to pass. We scoped him for the 11th time in August and we were shocked when we saw the scope pictures. They weren't horrible, we had seen worse, but they looked like the EE was coming back. I felt sick about it and his first question when he woke up from surgery was if he was allergic to milk. You could see where the eosiniophils were starting to form patches along his esophagus. We were pretty devastated and of course my first reaction is to pull milk out of his diet. 
 
Getting too big to carry.

After talking about it to the doctor and doing some research we decided to try flovent and allow him to still have milk. So now we are on a flovent/milk trial and he will be scoped in a couple weeks to find out if that worked or not. I hate medicating kids but knew this day might come, and felt o.k. about the decision after much debating. Taegan has had his biggest weight jump after being on milk. His pediatrician calls him chunky monkey. He loves ice cream and is 60 lbs and 50". I like seeing him this way though, as most of this life he was so skinny.

So Taegan has also had 3 ear infections since putting the tubes in. I didn't find out until he had his first ear infection that the ENT messed up and put in normal tubes instead of T tubes like he had originally planned. There are higher risk for the T tubes but we have once again decided to put in T tubes. This poor kid gets ear infections frequently and if he gets sick with anything it usual turns into an infection. It is nice to do the scope and Tubes at the same time. We will also draw his blood again to see where his allergy numbers are at. 

Kadence and her CPAP:

Kadence has done extremely well with her CPAP. She has a hard time sleeping without it. I have to say the worst part is the rats nests in her hair every morning. We are still frustrated in the fact that she is still having terrors despite her CPAP and anxiety medication. They aren't as regular but they are still happening and sometimes she will walk out of bed with her mask attached and pull the machine upside down and then the water is blowing in her face and she doesn't know what is going on or how to get it off because she is out of it. It is kind of scary sometimes and I have a weird fear or her drowning by her CPAP. (Probably couldn't happen...but the thought crosses my mind.) 


 The kids having fun at swimming lessons with their cousins and best friends.

 Taegan enjoys his karate class.
Best birthday cake yet. Ice Cream cake.






Saturday, July 13, 2013

Imipramine and Night Terrors

Kadence has been using her CPAP for a couple months now and her night terrors have not stopped. We met with the doctor and the Cpap has helped her to breathe better. Before cpap she had stopped breathing on average of 9.7 times per hour. After using it a couple months her average is 2.7 times an hour. Because her night terrors are causing a problem for the whole family he decided to try medication. I hate using medication but we are tired of being up every night and it also effects her brother. We are hoping to see an improvement and hopefully be able to lower the dose of the medication or stop completely after she has gone some time without terrors.

Friday, June 7, 2013

Sleep Apnea Fun

We got the results that Kadence does have sleep apnea and have been sleeping with this mask for several weeks. She has done better than I thought she would. The first few days I didn't think she was ever going to get use to it, but kids always surprise me. She is still having terrors but not as often. We are still up just as much because of the mask waking her up or the seal breaking and the whirlwind that hits her. Sometimes she is disoriented and walks away from her bed with the mask still attached and pulls over the machine. We have kept her in our room ever since she got it because she needs help often and the mask really mutes her cries so it is hard to hear her. 

We visited with Primary Children's heart doctor and we will see her every 2 years and watch for calcification. We need to have the rest of the family checked out because it is hereditary, but so far looks good.

Monday, April 15, 2013

Taegan Scope + T Tubes / Kadence Heart


Taegan had his 10th scope to get a baseline before we started a milk trial. This is very exciting for us and would be HUGE if he passes. He has not had milk since diagnosed at a year old and there are many foods he has been wanting to try. We also had tubes put in for the 3rd time but this time they are T tubes. 

 
This was the easiest scope he has done. In the past he was really scared of the blue guys and always cried but this time he didn't cry. He didn't feel very good when he woke up and his throat hurt but he did awesome. His scope looked great and had a result of 3 per high power field which is the best we have been without medication. I was very surprised considering how the environmental allergens had been really bothering him.

He was excited to try ice cream, hot chocolate, and go-gurt. Some foods he was excited for that he doesn't like are mac'n cheese and cheetos . We were told that he probably wouldn't like milk because he is use to soy and he doesn't like milk plain, doesn't really like grilled cheese or quesadilla but I bet he will eventually like it.

Taegan's first year playing city soccer. He is loving it.

Kadence

Kadence had an ENT check up from getting her tonsils and adenoids removed. While the ENT was listening to her heart he heard something weird and told us to get it checked out.
Kadence doing her EKG

Getting her Chest Xray
 

 Echocardiogram 

We know she has a hole in her heart and a bicuspid aortic valve. We will meet with Primary Children's Pediatric Heart doctor in May to discuss.


Kadence getting her Sleep Study Done. This went surprisingly well. She was a good sport even though she was very annoyed with the tape and chords. Will be getting results soon.



Monday, March 25, 2013

Taegan Environmental Allergies

Since Taegan was having so many issues with allergies in his eyes and nose I decided to get him pricked for environmental allergens. We also wanted to prick him once more for milk before we started a trial. We were surprised how allergic he was to environmental. They did 11 common trees, weeds, and grasses around our area and he was allergic to all of them, most of them really allergic. The allergist said he was a highly allergic kid and we need to do the shots as soon as he is old enough to cooperate.  He thinks around age 7, but Taegan is very afraid of shots because he has had so many so I guess we will see.
Taegan is being scoped this week and we will be starting a milk trial. He has never had any reaction to milk on the pricks but his blood shows up a little. His blood will also be drawn to check his numbers and he is getting T-tubes in his ears because he has fluid in his ears often and gets infections. This will be the 3rd time he has had tubes in his ears.We also weaned him off of omeprazole. I guess it depletes your body of calcium and it isn't good to be on it for very long. I was unaware of this side effect but glad to be off.

Kadence allergies

I decided to get Kadence pricked because of some issues we have had with her. She is and has been a difficult child for years. She is very emotional and has had night terrors for 2 years. I was hoping they would have gone away by now. Everyone in the house is tired. Taegan had terrors until he was 4 1/2 years old. They haven't gone away and they seem to be getting worse so we have done a few things. First she was allergy tested and they found she is allergic to milk,some trees, and weeds. I had wondered about milk because she had started getting stomach aches for the last few months off and on. 
 
I took her to an E.N.T. and they found she had enlarged adenoids (Taegan had his removed too), and so we did surgery and they also removed her Tonsils. She has never had surgery before so she was so excited counting down the days. She wasn't too happy waking up though.
I took her to the sleep disorder clinic and he was glad we had removed her tonsils but said she had a very small airway. He wouldn't be surprised if she needs a CPAP. We will be going in soon and doing the Overnight sleep study.





Thursday, February 7, 2013

Update....1 Year later



Wow, I haven’t blogged FOREVER. Part of the reason is that things have been going so well and the other part is I have been a lazy blogger I guess. I need to update though because this blog is part of my medical records on Taegan.
Taegan is ½ way through his first year or Kindergarten. Like everything else with him I was very nervous about the whole situation especially when I learned snacks were involved daily.  Like preschool, I pack his snacks and they are separate from the other kids. I am very blessed that he has an awesome teacher that works well with our situation. I met with the school nurse and the teacher before school started and went over the epi pen and Benadryl instructions. At the end of our meeting I learned that the school nurse was a traveling nurse and covered several schools so that wasn’t too comforting and I considered it to be mostly a waste of time considering there was a big chance she wouldn’t even be at the school if an anaphylactic reaction occurred. Luckily his teacher has the epi in her classroom and I continue to pray we never have to use it.
 
First Day Kindergarten - excited to ride the bus.

Speaking of using the epi my 4 year old daughter accidentally shot herself with it. I had an expired one in my church bag. I know, expired sounds bad but when you only get 2 and one is at the school and one is in my kitchen I do have some expired one around that aren’t too expired and there isn’t much food at church. Taegan also wears a necklace I made while at church that says not to feed him anything. Anyway, Kadence was going through my church bag and I didn’t realize it and I heard what sounded like broken glass and she screamed and I ran to her and she had shot herself in the hand with it. Crap, I didn’t know what to do. I called my cousin who is a nurse and we applied heat to her hand to keep the blood flowing. Luckily it wasn’t in a finger because if it would have been she could have lost all feeling forever. She did not feel very good, she got pale, her heart beat was racing, and she thought she was going to throw up and heaved into a bowl. After probably 20 minutes she fell asleep I felt so bad. Of course we had gone over not to play with the epi pen but she is only 4 and I bet she never plays with one again.
I feel we have good control over Taegan’s food allergies right now but environmental is a different story. I think I got a little too comfortable with how well the last couple of years have gone. I have noticed more and more his asthma is a bigger deal than I first realized.  We still deal with him getting sick very easy and it lasting longer and hitting him harder than most kids. We have many sleepless nights if Taegan is sick. I normally put him in our room so I can keep close eye on him if it gets scary. Over Thanksgiving we took him to the ER one night because he had croup and he could not breathe. It scared the heck out of Chris and me.  I was dead asleep and Chris flew into our room, flipped on the light, and slammed his arms on both sides of me shaking the bed yelling, “Taegan can’t breathe.” I ran as fast I could to his room before realizing I couldn’t see and my glasses were still on the night stand. I warned Chris to never wake me up that way again my heart was beating out of my chest I couldn’t even think straight. I did his asthma inhaler and had Chris take him outside.  We took him to the ER to be safe and didn’t want that happening again. We figured he had croup, but had no prior warning signs it hit so fast. They did a croup treatment there and told us he should be fine. 2 days later I was still having issues. I had him wrapped up in a blanket outside but he was coughing so much he puked all over both of us. I called the pediatricians office and they got us 2 days worth of steroids and that finally did the trick. 
Doing his breathing treatments. He gets sick of them but always does them well.
In the ER for Croup
Taegan is such a good kid and never complains about anything.  He is pure boy and I enjoy him so much and love how much he loves life. If he does complain you know it is a big deal but the poor kids is just so use to not feeling normal he doesn’t know what normal is. A few months ago he kept rolling his eyes funny. He would look to the side and blink and continually roll his eyes. I took him to the eye doctor and he definitely has some major allergies going on. The doctor said it is one of the worst cases they have seen and the worst case the assistant had ever seen working there. They said a normal adult would want a fork to scratch out their eyes because of how bad the itching is. He has bumps all over his eyelids from the irritation. Crap. I had no idea what it could be. We put him on Pataday daily and the doc wanted to see us again in a month. I just returned from seeing the doc and his numbers are just as bad as when we started. It is frustrating. The doc has some better medication available but doesn’t recommend it at his age because the side effects could cause more eye damage in the long term and I totally agree. So we are now doing the drops twice a day for awhile to see if that helps. It is hard though, because Taegan is supposed to tell me when his eyes itch but he is so use to it I don’t know if he knows the difference. There are times we definitely see things bothering him specifically some dogs, especially shedding dogs, and cats.
Taegan also picks his nose a lot. It is annoying and embarrassing but I figured there must be something bothering him. I took him to the Ears Nose and Throat specialist. He looked up his nose and said for sure something he is allergic to is bothering him and he probably feels like there is stuff clogging his nose he is always trying to get out. Whatever membrane is in your nose, his were inflamed more than they should be. He prescribed Nasonex and said to take it daily, or switch his allergy medication because you can get immune and that should help cover more things. 


Currently the medications Taegan takes daily are : Omerazole 10mg morning night, Singulair 4 mg, iron supplement, was doing allertec but just switched to Claritin, and pataday morning and night. It is frustrating to know that something is bothering your child but you can’t figure it out. I have an appointment with an allergist from Primary Children’s who comes down every month in March. We are going to do a lot of prick testing on environmental allergies and hopefully find more info out. I am also discussing doing a milk trial with his pediatrician and EE doctor. I hadn’t thought much about it because I have heard milk is one of the highest EE allergens. I was looking over his medical records and milk has never shown up on the many prick tests we did and it did show up in his blood but wasn’t very high and that was 3 years ago. I discussed it with his doctor and he thinks a trial is worth doing. I think we will probably be scoping Taegan soon to get a baseline but I am a little worried about all of the environmental allergies especially since spring is coming and that could raise his numbers but all of this will be discussed and we will see what the doc says. Passing Milk would be a huge blessing. I already feel so blessed to have wheat but Taegan is getting really burned out on the soy. He use to drink it better but lately he doesn’t want to drink it at all. Milk would open up so many more things I am excited about the tests but always fear the worst.
 
Just some pics of the last year.


Taegan being all boy.   Kadence and him can be with each other doing the same thing and Taegan ends up with 3xs the amount of dirt on his body/clothes than she does.

Taegan's favorite food = chicken. I made a sauce that is free of his allergens that we all enjoy so we eat it a lot. This kids can also pack it away.
Taegan getting a little too brave cliff jumping.

Can't forget Kadence. These 2 play pretty well together most of the time and I am so glad they have each other. The fight sometimes but are really enjoy each other for the most part.

Kadence's first day of 2nd year in preschool.

We love to be outdoors. Camping and boating are our favorite things.
Chris had the tag this year. Getting this buck was definitely the highlight of 2012. 
Recent family pic.