The SparrowPosted: September 28, 2012
I am so sorry it has been so long since my last “Caleb Update”. The reason is…I really don’t know much more. It all ebbs and flows and there is no rhyme or reason to anything. So-I will try to sum up what I do know and make it brief (for your reading pleasure :))
First…something that seems to confuse most is his lactose intolerance. That is not an allergy. It means that his intestines do not contain the enzyme needed to digest lactose. Breast milk is made up of lactose and there is nothing you can do about that. Because we don’t know what is wrong with Caleb, I still hope and trust my milk is best for him and his healing so instead of putting him on a lactose free formula…I give him a lactase enzyme which allows him to digest it. Otherwise it sits in his gut and rots/ferments and causes all that pressure that got us hospitalized the first time. He is diagnosed Lactose Intolerant.
Since the gluten enzymes are located right next to the lactase ones…and he still struggles to digest…we assume his gluten ones are “broke” too…so I am on a gluten-free diet.
As for the GERD and Sandifer’s Syndrome that he has been diagnosed with….wait….he is actually diagnosed with severe GERD…
He doesn’t have either.
See, what happened was, when he was hospitalized from all the pain from the lactose fermenting…no one would consider he was lactose intolerant because it is super rare in babies…and he was thriving…when he should have been withering away…and since there was no GI available to do a pH probe to test him…they just assumed he had GERD, and sent us home with Prevacid (which shuts down the proton pumps in the stomach that produce acid). However, the Prevacid didn’t make him better so I went with my hunch and gave him the lactase enzymes and he started doing great! So the doc said to take him off of Prevacid…so I did and we ended up back in the hospital. Within 36 hours off of Prevacid he was having seizure like episodes. They diagnosed him with Sandifer’s Syndrome-a neurological response to the pain of GERD. So we left the hospital back on Prevacid.
We finally got a GI and when I told him I never thought Caleb had GERD he agreed to do a pH study on him. I had to take him back off Prevacid for the study. I asked the GI if I should stop it that day and he said yes! So I did….
And within 36 hours the hell ensued. So off to the pharmacy I went to get more Prevacid…a different brand this time…and ended up calling a friend of mine who is a pharmacist to ask her two cents….
YOU HAVE TO WEAN OFF PREVACID! If not, all the proton pumps come back “on” and BAM! Overload! Hence the neurological response. So…I put him back on Prevacid just so I could wean him off.
We are now two weeks Prevacid-free and nowhere does his blood work indicate that he even had/has GERD!
His blood work does, however, indicate that something is still going on…his liver enzymes are high (200 when they should ideally be 13) and one of his white blood cell types (neutrophyls) (yep, you have 5 different types of white blood cells :)) is really low (his have varied from 200-900 and the should ideally be closer to 8000!) So now he was awarded the diagnosis of Neutropenic. Because he can’t fight off anything when they are that low…he…I mean we…have just suffered through three back-to-back episodes of thrush, a bacterial infection and a virus.
After I got him off the Prevacid…I had another hunch…and started looking into Prevacid a bit more and found this:
Lansoprazole (Prevacid), dosage 1.4 mg/kg/day
Adverse effects: headache, diarrhea, abdominal pain, elevated tranaminase, and neutropenia (rare).
“Elevated tranaminase” is liver enzymes! Neutropenia is having low neutrophyls…those white cells he lacks! So I was even more grateful to have him off of it. Although they did another round of blood work after he was off it and everything was worse than it was when he was on it 😦 HOWEVER, he was also on Nystatin for his thrush and fighting Thrush. Soooooo-I am super prayerful that the next round they do shows improved results and my hunch was right and problem: solved!
So, then…what is the problem? Well, he also stops breathing.
After we treated the lactose intolerance-we didn’t have any more episodes or at least none that I knew of…however-after we started giving him the lactase enzymes…I assumed all of our problems were over and I took him off of his monitor and started sleeping with him in my bed again. So he may have been having episodes all along but I never knew of any.
On Friday-while I was nursing him-he made two really weird movements and then was “gone”. I don’t know how else to describe it. I felt like I was holding a doll. I ran him to the bathroom and flipped on the light to see him. He was “gone”. I ran downstairs and told Mike to call 9-1-1. I laid him on the floor, limp and lifeless but stiff…and started chest compressions. YES I have CPR certification and when it came to my own baby forgot EVERYTHING. You don’t do chest compressions on an infant…but in my head…not being able to think…I. just. wanted. to. keep. his. body. moving. Okay-I can’t talk anymore about this…he began breathing on his own (or maybe from my stellar CPR techniques :)) and that’s what counts. Needless to say, he is back on his monitor. It has gone off 4 more times since then but all in the same night (Saturday night).
Okay-this is gettng loooooong. To sum it up…we have had our care transferred from Presbyterian medical group to University of New Mexico where an attending and a resident took a liking and interest and asked to have us transferred to them. That was an answered prayer for us and I am so hopeful that they will shed some light on all of this for us. At the very least-I feel like they care about him…and me. The seasoned Attending took hold of me and said “You can stop…you don’t need to do this anymore…I’ve got him now….” It felt so good to have someone care…they have spent the week getting medical records transferred and pooling together people to get their two cents. I will see both docs on Monday to see what they have to say and/or how they want to proceed.
He had a vascular liver ultrasound done on Friday and everything looked good from what the Ultrasound Technician could determine.
I will also say that if you saw Caleb…you would never know anything was wrong with him. He is happy, squishy, smiley, sweet and the best thing in the world…and although I have worked really hard to help Caleb (by taking a gazillion digestive enzymes at every meal to break down my milk as much as possible for him, taking a trillion supplements to give him liquid gold, and changing/learning everything I know about food and the small intestine and healthy bacteria and probiotics and and and…) there have only been two people that have done anything that showed a noticeable improvement in him and that is his Homeopathic M.D. and his chiropractor. They, together, got the brain/nerves talking to the liver and made it continue to flow and the way it changed him was noticeable and undeniable-and we were as skeptical as they come!! I don’t know what his homeopath did but I referred to it as “he is jacked up again” and she would say “I un-jacked him up again” 🙂 and as far as that area goes…he has remained “un-jacked” but don’t ask me how or why 🙂 I am just utterly grateful to both of them!
I write all of this as matter-of-factly as I keep track of it in my head…I make light of it because I don’t know if there is any reason not to and as my mother-in-law keeps saying “don’t borrow worry”.
I have a lot in my heart but I don’t want to pour it out…So I will share this one and only one that sums up just about everything I feel…
I have never felt more joy in my life caring for something or someone than I do for Caleb…It is supernatural…and I know that comes from God. However, I find myself worried that He is giving me so much joy because I won’t have him for very long.
and then I speak Truth to myself instead…and the most reassuring, comforting Truth that comes to me again and again is in Matthew 10:
29 Are not two sparrows sold for a penny? Yet not one of them will fall to the ground outside your Father’s care.[b] 30 And even the very hairs of your head are all numbered. 31 So don’t be afraid; you are worth more than many sparrows.
So we meet with the new docs on Monday and I am hopeful I will have more to share with you then. In the meantime…if you think of please pray for wisdom for these doctors and healing for Caleb…his digestive system and his apnea-they call it Acute Life Threatening Episodes…so someone come up with a better name for it than that! Pa-lease!!
Oh and if you want to know anything about food…enzymes…digestion…bacteria…holla! 😉