Where we've been the past 8 months and how we got to where we are today

Dear Friends and Family (who are still reading this blog):

My blogging has unfortunately come last on my priority list these past MANY months and I feel so bad about that – not only to keep my bloggy friends updated on The Hoyt Family adventures, but also because I started this blog back when Caitlin was 1 year old as a way to keep an online journal for us to always remember how our family was growing and the milestones our child(ren) were accomplishing. So, when I don’t get to blog, I feel sort of guilty (but if you really know me, I guess you could say that I feel tremendous guilt about many things! LOL)

So, I wanted to try to start getting back into blogging as time permits since I have been under a lot of stress for many months (going back starting with my first trimester of pregnancy with Madison) to very recently. Now, I’m under the “normal” stress of life, but I feel “better” enough to journal again.

I am a big believer in prayer (as you know) and I know that I should ask for prayer for my own family, but sometimes you just trust in God to provide and don’t feel like you can ask others to pray. Anyway, I don’t really think that makes sense in my heart, but in my head, that’s the way I proceeded to believe during our struggles. I hope to update you in this post in order for you to know how much unsaid and unanswered prayers can affect someone. I know that many of you pray for others on a daily basis and I did feel covered in prayer as we went through the following health issues. No matter what, I know that I believe…

1) I’ve been having some health issues since I was about 12 weeks pregnant with Madison (see here my updates from May 2009 when I was hospitalized for some tests). And also wore multiple heart monitors to monitor my abnormal heartbeat and abnormal EKG while I was pregnant as well as 7 weeks after I had Madison (whoa was that a trip – having to breastfeed a newborn with a monitor around my neck and taped to my chest!!) The story could be really long, but the long and the short of it is that I keep getting tested for lots of stuff (from heart, to brain, to kidney) and from my repeat (like I went every week for 5 weeks!) blood work at cardio…My blood work came back ok on thyroid and electrolytes (had been out of whack 4 weeks before that) but potassium is still way too low (signs my kidneys aren’t working properly)…so we upped my dosage of potassium supplements even more and my cardiologist finally said that I have one of two genetic kidney disorders. At this point I was taking a diuretic that’s supposed to keep potassium in my system and not make my heart skip beats anymore (I was having heart palpitations due to my low potassium). Even when I was upping my potassium supplement intake, my potassium levels were decreasing (this was the sign my kidneys aren’t working properly). Most recently I noticed a difference in the amount of urine I was excreting. This should not decrease with a diuretic…so then the docs said I needed to limit my amount of sodium intake to 2300 mg per day only. Great, I thought, more stuff to remember! I went to visit my dad and step mom in DC who are doctors/researchers of genetic disorders. I asked them to test me while there so I could know exactly which disorder I have so that we can treat it properly. I was having to leave work early every week to get these blood/urine tests and it was getting aggravating and I’m sure annoying to my awesome boss (although he always told me not to worry about it). While in DC, I found out that without doing an almost impossible genetic test – they are only done in EUROPE right now for this specific gene - that due to my low potassium and heart palpitations (as symptoms) that I have Gitleman’s Syndrome. It is not as bad as we thought (my cardiologist thought I could have Barterr’s Syndrome) but talked it over with 3 different renal doctors (one pediatric and 2 adult) so that I wouldn’t have to go through the hassle of going to different doctors (I love this cardio!!!) and confirmed that I would not have made it to age 31 without being diagnosed at an early age with Barterr’s. Strangely enough, Gitleman’s is typically diagnosed in adulthood and with women, most get diagnosed during or post pregnancy! The other awesome thing about Gitleman’s is that it is a recessive gene – which means there’s probably no chance (if any) of my kids getting the syndrome. Barterr’s on the other hand, is a dominant gene – which means that the kids had more chance to get it…So, all in all, this is the best syndrome out of the two to have – and, both require the same treatment (spironolactone – a diuretic that holds on to vital minerals (specifically potassium) so that the “genetically messed up” kidneys don’t rid the body of them. Also, Gitleman’s is pretty asymptomatic (low potassium as well as other vital minerals and heart palpitations can be really the only symptoms and some don’t ever notice these…) so I shouldn’t have to worry about any other symptoms popping up (unlike Barterr’s). After taking the diuretic for one week, I had my blood tested yet again and my potassium levels dropped again! BUT the doctor said that I just need to up the dosage and retest in a few weeks to make sure the med was working. At the next visit I had taken the spironolactone for 4 weeks. They tested me and my levels increased dramatically. After six more weeks of taking the diuretic at the new dosage my potassium levels went up from 3.3 to 4 (this is great!) So I’m to continue with the meds and have a follow up in about 8 months unless I feel like I need to be seen before then. I’m really thanking the good Lord that He was able to show all the doctors involved what I actually had and what had been going on for months of pregnancy and beyond as well as over the years (I’ve felt the heart palpitations for about 2 years and always assumed it was emotionally related). Plus, not driving to the med center every week has really helped me dramatically.


2) After noticing a bruise that came from NOWHERE in April (it was on Madison’s forearm) I was on the lookout and racking my brain for anything and everything that she could have bumped it on. She was not mobile at this point so I was not sure how she could have bruised herself so badly (and it was black only after the first day)! At this point I was also prompted to remember and question why she had been stiffening her arms/leg/torso (whole body really) for about a month (pretty much anytime of day not just when fussy or excited) but mostly at night. She closed her eyes not just when she was tired or blinking for longer than a few seconds. When her body tensed up she usually cried out for a millisecond. These stiffenings appeared totally involuntary. My mind went immediately to seizures. I do have a seizure disorder and have always worried that I’d pass it onto my kids. I looked at her pupils for the first time a month before. I think I’ve been in denial and didn’t want to look. I studied Cait’s many years ago and found nothing. Madison’s right pupil IS bigger than left. This is the only physical confirmation (besides a full on seizure) one can do to see if someone has a seizure disorder. I was totally freaked and worried. So, I took Madison to the doctor on the following Thursday – the nurse on the phone when I made the appointment said my fears were founded due to my history with seizures. At the appointment, Madison's doctor didn't worry about the bruise but she did a CBC (blood panel) just to put my mind at ease. Praise the Lord, she does not have cancer or anemia. I am so blessed to know this! The doctor did want to hear about my seizure history after hearing about what I was worried about seeing in Madison. After hearing all that she asked a few "food related" questions and said, "I think she has Sandifer Syndrome." If you look this up it is uncanny really how similar the symptoms are to seizures (and the fact that the symptoms are considered “sudden onset” which is how her symptoms were – they came from out of the blue). Her doc prescribed Prevacid and Zantac and said to try that for 4-6 weeks and if it works then that was the problem the previous 8 months of her life (not colic like we thought!). Her pain had just risen so high from the acid increasing in her body that she had started tensing up so much that it was showing these "seizure like" signs...it also explained the crying and not sleeping. She hoped and thought that if the meds worked then we should see a new baby!! I was obviously hoping for Sandifer Syndrome but was sad that she had been in pain for 8 months and we thought it was colic!! I knew she was spitting up a lot but I guess I thought it was "normal baby" amounts (since Caitlin did not spit up that much)...anyway, her doctor still ordered an EEG just to rule out seizures (because of my history)...So, we had the EEG in mid May. Here’s the story on that: Madison was great, considering the circumstances. A non-sleep EEG was ordered which means she could not sleep at all after she woke up the day before until the test when they tell you to go to sleep. It was a normal night on the day before - she was up crying until 2am. She woke up the day of the EEG at 5:30 am and didn't truly fall asleep until she had to for the EEG until 3pm!!! There were times during that morning (around 9:30) that I thought I wasn't going to be able to keep her awake, but then my mom came over to help. That helped a lot. We got to Texas Children’s at 1:45 and by the time they'd put all the electrodes on her head it was 2:40! Then they did the strobe light tests (while she was awake) and good thing my mom was there cause I can't look at those things because of my seizure disorder. I went into the bathroom that they had in the same room for that part. Then at around 3pm I got to lay on the bed with Madison and nurse her to sleep. She fell asleep after about 5 minutes and we got to sleep for 20 minutes. I had to wake her up (nope she wasn't happy!) and the test continued for another 20 minutes. Then it took about 20 more minutes to take all of the electrodes off and clean her head off (paste and marker and tape). The nurses were great - so sweet and patient. We got the results about 2 weeks later (it was agony waiting)! I found out that Madison’s EEG came back normal (Praise The Lord!!!) So we are not thinking seizures now, but are thinking Sandifer Syndrome. My only issue is that even though she’s taking Prevacid & Zantac she is still “stiffening up” and is still “spitting up” the same amount! At her 9 month check-up, my pediatrician and I discussed why she was still showing signs of the Sandifer if she was on the meds. I really hated seeing her stiffen and if her little body was still in pain from the acid - - that is too sad! So her pediatrician said that sometimes children with Sandifer take up to 15 months to recover!! Finally, in late June, Madison did not show anymore signs of the Sandifer (both in the stiffening and spitting up department). I was so relieved to not suspect pain in her little body and that we were hopefully on the mend in the sleep department! Going to work after only 1-3 hours is brutal! My body has (several times) shown signs of shutting down and some days I knew that I shouldn’t be driving, but I kept on keeping on. Whatever I needed to do or handle for my baby, I was and am determined to do. I have not seen an improvement on Madison’s sleep to this day. She now sleeps between 1 and 4 hours a night and usually only takes a few hours of naps at the babysitter’s. I’m not sure what keeps her up or what keeps her from needing sleep, but her pediatrician says that babies will know when they NEED to sleep and will catchup on those “days.” Not sure when Madison (or I) will “catchup” but it better come soon because going on 11 ½ months of not much sleep is wearing Mommy out!

Thank you for reading this VERY long update on our health. We have been through a lot to get to this point and again, we are praising God that he has healed us and has protected us from true pain and sickness like other families have endured and are still enduring.

I am praying for each of you, no matter if I know your struggles or not, that you would be protected and feel the love of our Heavenly Father on a daily basis.

Love,
Amanda