No school and one CrAZy week!!!

Last week was supposed to be our first week back to school after taking a much needed week off.

However, our daughter came down with a very mild case of the flu on Monday and Tuesday. She actually handled that part really well. The only things she experienced from the flu were sleepiness and a fever. Even then, her fever never made it past 102.5. She had no sore throat, no muscle pains, no achiness, etc...  

I debated on giving her Tamiflu. The pediatrician's office really pushed it. I even filled the prescription and everything. They also gave me an earful about getting the flu shot in the future. I gave them an earful myself. My children have not received the flu shot on over 7 years. This was one of my children's first time to ever get the flu (and a mild case of it at that!). I told them the odds against NOT getting it again in the near future seemed to be in my favor.  Anyway, upon doing research when we arrived home, Tamiflu has been known to cause nausea and vomiting, and since our daughter has had her fair share of that in the past already, we decided against it thinking she may be one of the ones to experience these side effects. Plus, Tamiflu only claims to lessen the days of the flu by 24-36 hours. That's it?!? Doesn't really seem worth it to me. AND, there is no research to even back up those claims!!! Anyway, since her flu only lasted 2 days, I was so glad we opted not to give it to her.  

Starting on Monday, her tummy also began to hurt in that same area as always at the same time she had the flu. By Tuesday, she had her full fledged back pain and nausea too...no vomiting this time around though. Wednesday morning, she woke up fever free, just exhausted from her stomach/back pain. She remained fever free through Thursday, but her appetite was still not back to normal. 

I should note, that on Wednesday morning, we received a phone call from her gastrologist letting us know her ultrasound we had done earlier in the month showed she had a UPJ osbtruction. On Friday, her fever came back and so did her sever back pain and nausea. Although her fever was gone again, she was not well by Saturday, and knowing what we knew about UPJ now, we were afraid she had a kidney infection.

We spent all day Saturday in the Texas Children's ER. No kidney infection tho, just another episode of UPJ. She usually doesn't have them this close together. All her blood work and urinalysis came back ok. They said the fever on Friday must have been some little virus she picked up due to her immune system being weak.

Poor gal missed every chance to perform in our church play and she had worked so hard for and had been faithfully attending every practice since we started. Everyone felt so bad for her. Good news is, once all this is taken care of, hopefully, she'll never miss another thing again due to UPJ :)

It's Monday again. Needless to say, we didn't do a lick of school last week. This week won't be much better. Now I don't feel well. I have felt a cold coming on for quite some time, and now that things are calm, it all hit me this morning. We will manage to get in a full day of school today and hopefully another tomorrow. After that though, we plan to take the rest of the week off to visit Granny, finish up Christmas shopping, and go to our daughter's urology appointment. I hope I get to feeling better or I will be missing out on every bit of it :(

So, here's to another CrAZy week!

  

UPJ Obstruction - not the best news, but not the worst news either

So, what is a UPJ obstruction?

The technical term for it is Ureteropelvic junction (UPJ) obstruction. It is a blockage at the point where part of the kidney attaches to one of the tubes to the bladder (ureters). This blocks the flow of urine out of the kidney.

Our daughter has a narrowing of the ureter tube and because her symptoms are intermittent, it most likely kinks up on itself to completely block off the kidney for a period of time. This explains her excruciating back pain and the mass (which is her kidney and tube enlarging) that can be felt when she has an episode.  

She did not have the typical urinary tract infections associated with this. I don't think she's ever had one of those. Every test she has ever had run for urinary tract infection came back clean. She did not have blood in her urine (that we could ever tell). She also didn't have kidney stones. What she did have was severe localized abdominal pain which moved more to the back as it progressed and a palpable mass appeared accompanied by vomiting...LOTS and lots of vomiting. She couldn't keep anything down. She cried all day long and scrunched up into a little ball. She'd drift in and out of sleep and in some of her most severe cases, her lips would turn a blue or purplish color. This typically lasts an entire day and night. Can you imagine an entire day and night of feeling like your kidney was about to burst open?!?! Then, just as quickly as it comes on, it goes away just as fast...as if it was never there. 

The majority of these birth defects are found while the child is still in the womb. Hers was not diagnosed. Even then, some of these require no intervention and correct on their own. Hers got worse. Our daughter is 9 years old now and has been suffering with this noticeably for the past few years.

Anyway, more can be found about it here.

It was diagnosed with a simple ultrasound. A simple ultrasound!!!! I had asked other doctors for ultrasounds of this area before, but most passed us off and told us it was just constipation...including the ER at the hospital. I wish we were more persistent then like we are now. 

So, what's next?

We are researching pediatric urologists today and will make an appointment with one tomorrow. She will have a full UPJ evaluation. Based on all of those tests and findings, we will determine what to do next. With all the research I have done, she will most likely need surgery to correct the problem. We hope there has not been any permanent damage to her kidney so far and we want to get this sorted out asap because, left untreated, most people experience kidney failure as their condition worsens.

UPJ obstruction...that's our answer and it all adds up. It's not the best news, but it's not the worst news either. 

Ok, NOT what we were expecting...cyclic vomiting?

It was just a little over a year that I posted a series about my daughter and cyclic vomiting.

If you would like to get caught up, you can check these posts out.

Cyclic Vomiting (part 1)

How Cyclic Vomiting affects my little girl (part 2)

Cyclic vomiting and what we are trying (part 3)

If anything, writing down my thoughts and keeping detailed journals and blogs have helped me to keep track of what we have done, when we have done it, and relay that info on to the doctors in order to best diagnose a treatment path. 

Keeping detailed journals has been SUCH an asset! If you are going through something and the docs can't figure it out and you have more questions than answers you MUST keep a detailed journal or blog. There is no way I would have ever been able to keep everything straight without writing all of this stuff down!

I left off in part 3 where we were trying different things. One was eliminating gluten from her diet. We did and she did seem to get better. We went the longest we have ever gone without a vomiting episode in quite a while when we did that. 

We did (and continue to) see a wonderful doctor at Texas Children's who encouraged us to keep doing what we were doing if it was helping. Our daughter experienced 2 significant growth spurts during this time and the cyclic vomiting was lessening, so obviously we assumed me were on the right track.

Wrong! Well, sort of. I mean, the gluten was causing some of her stomach issues and with that out of the way, other underlying issues surfaced.

She started to have a few more vomiting episodes. Some were associated with accidental gluten ingestion, but others were unexplained and it was the unexplained ones that were wearing on my mind.

How can this be happening? We are doing everything right!

We started noticing, when she drank a coke or other heavily sugared drink, she would tend to have an episode. So, we took her off of all sodas and sugary drinks. The doc said sugar can slow down a person's digestive process and cause some of her symptoms. So, taking her off seemed to help...for a time anyway :/

Even off the gluten, sodas, and other sugary drinks, she was still having unexplained episodes of vomiting that seemed to be happening more frequently despite our best efforts. One thing more prominent now though was her increasing stomach and back pain....in one certain location. 

She would get so bad sometimes that you could even feel a knot or a mass in that area. We assumed it was inflammation of her intestines from something she ate or drank causing that bulge or gas or constipation as had been thrown at us time and time again from her pediatrician. (I never sat well with the constipation idea tho b/c my daughter had frequent bowel movements and was taking in a lot more fluid than she ever had in the past.)

We had a follow up appointment to discuss this with her gastrologist.  My husband and I were beginning to think it was an obstruction of some sort. About a year prior, the gastrologist had written down something called a UPJ obstruction on the white board as a rare, but possible cause to her problems. It was so far down the list that we really didn't pay a whole lot of attention to it. Since we had ruled out a lot of the other causes and the issue was still happening, we started to think more and more about it being some sort of intermittent obstruction.

So, we followed up with an ultrasound of the kidneys just to be sure. 

Turns out, she has a UPJ obstruction :/

(more to come in the next post)