Little Man's birthday is next week, so we got an appointment scheduled and completed yesterday. First on the agenda: weight check. Little man is now 24#8oz. and 34" tall. He is in the 19th%tile for height and 12th%tile for weight. Holding his own curve, although it looks like a bouncing ball all around the 10th%tile line- he does stay around 10th%tile. One the growth chart, it is more about the curve than about the number. A pound or two at this age is all that separates from one end of the curve to another. At his highest (at 8# at birth, he was 57th%tile, he hovered in the 40th%tiles for those first 6mo, and then took a plunge from Nov.2009 to January 2009, this is after we tried soy for the first time and when began to multiply quickly, except his weight. He maintained his own curve again until after corn fail when he hit a 5%tile low, not dipping that low again until after soy challenge fall of last year. The patterns present themselves when you look at it all laid out on the growth chart graph. I follow his weights not because I want to obsess over every ounce but because the patterns of intakes and outputs can tell us a lot about what is going on in his gut- healing or inflammation? Absorbing nutrients or malabsorbing them?
Height taken, it is off somewhere because his height curve is a bouncing ball too....that doesn't make sense. People don't shrink like that. But there are a few weights like that too- done in off-pediatrics floor appointments, where I want to just say "don't record that, you didn't do it right anyway and his growth chart is enough of a mountain range". He is much shorter than his brothers at this age, after all their daddy is 6'3". But maybe he simply will take after his French ancestors (my dad), so then he's right on track.
The nurse enters his height and weight in the computer, and prints me the growth chart. She hands the paper to me and Little Man grabs for it, takes it and "reads" it- as if he is studying it. This gives the nurse a good chuckle. He does this a lot with books at home as well, full intent into the book- as if he is reading it. I admit, it is super cute. The nurse is surprised that he does that a lot. I comment he does it with writing too- uses a pen/pencil with paper and will look and draw as if with much intent. She asks to see him do it, so I hand him a pen and he promptly takes it and starts to "draw"- complete with tongue sticking out! It was priceless and made her day. "See you later" he says to the nurse, her part is done and in comes the pediatrician.
Quick discussions about his weight gain, and current measurements. He is growing proportionately, and appropriately at this time, and that is encouraging. Next is his development. I check off on a "scoring" sheet for things he should be doing at this age. He "scores" at 2yrs.3-6mo. on everything which is good that he's meeting base milestones but I already knew that. It continues to amaze me that he isn't further behind, with everything he goes through. That said, I don't agree that he is in the 2yrs.3-6mo. milestones category, not if the category's were written with his brothers milestones in mind. But I do feel the things he may be a few steps behind on, he will catch up. Here again, he's following his own curve and developing appropriately. We discuss his speech specifically, I am a little concerned, or more like watchful, that his speech has "exploded". There is a point with toddlers where they go from a few dozen words to so many you can't count. Little man has his few dozen words, uses them well, learns a new one every day or every few days (depending on how he's feeling) but he hasn't exploded his language yet. I'm not overly concerned, just watchful. The pediatrician feels the same- not over concerned but agrees to be watchful, if we haven't noticed his "explosion" of language within the next 4-6mo., we can move for further evaluations. I agree, this is a good plan. The pediatrician adds that he feels little man is just a calm natured little boy, and will talk when he has something good to say. He is probably right. And he is right that little man is calm natured, we've been getting a lot of comments on that lately and his daddy and I can't help but to think of the first year of his life when we were told it was his "temperament" that made him so fussy and non-sleeping, and crying all the time. I know, in my heart and soul that Little man was a calm spirited boy- hiding underneath all that pain.
We wrap it up with discussions of his current diet, current goals for expanding his diet, a peek at his eczema that popped back up after sucrose reaction and hasn't completely quieted down yet. A complete exam, for which little man is so cooperative for- he has this doctor visit thing down!
And then an anemia discussion. Last check was one month ago, do we feel he needs to be checked today? No.....although he had a strong bloody diaper after blueberry (I will spare you the picture I took!), and has started some wood chewing again and has been more pasty looking some days, we had 3 days of Elk going strong, maybe we can replenish his stores with real food and avoid the offset he gets from IV Iron infusions? The Pediatrician agrees we can do a wait and see, being that his physical exam looks good except his pale skin and somewhat pale in his lower eye lid. We plan a weight and lab draw for ~6weeks from now, unless something else comes up in between. Having a plan is good.
Now, on to planning that birthday party!!
Showing posts with label Pediatricians. Show all posts
Showing posts with label Pediatricians. Show all posts
Friday, June 3, 2011
Tuesday, May 10, 2011
IV Iron Sucrose = corn
Little man has had IV before: IV hydration, IV dextrose, IV nutrition. His iron has been administered via IV and his anemia responds well to this, restoring his bodies iron stores to make oxygen rich hemoglobin for energy and brain health.
Little man has had IV iron Dextran in the past. Dextran is a sugar made of many glucose molecules. Sugars for IV (detrose, dextran, sucrose) are most commonly derived from corn. We have always seen some symptoms with these IV solutions, but never very significant. Nothing significant enough to over-ride his need for receiving the solutions. It is always a lesser of two evils approach. IV dextrose brought him out of acidosis following tapioca fail; IV nutrition healed his villus atrophy, IV iron dextran corrected his anemia. IV iron dextran takes 6hours to infuse. There is a shorter version: IV iron sucrose.
Sucrose is a sugar made of fructose and glucose molecules. So, it is a more complex molecule, that the body will still have to break down. But wait, he has a gut allergy- right? Yes, FPIES is a food allergy of the gut. The gut takes the "hit"- as if there were hives or eczema happening on the surface of the intestines, or anaphlyaxis of the stomach. But the mechanisms are thought to be T-cell mediated. T-cells travel through the lymph system. T cells are not limited to just the gut- that is merely where they are concentrated and trained to recognize for this type of allergy. But Tcells also respond to skin- look up Atopy Patch Testing. Also, read here: NonImmunoglobin E-mediated Immune Reactions to Foods by Dr.Spergel where he illustrates how learning about Tcells from Atopic Dermatitis patients has furthered understanding of this immune mechanism of food allergy.
So, dextrose is from corn, dextran is from corn, sucrose is also from corn (isn't everything?). IV iron sucrose takes 45min. vs. IV iron dextran's 6hrs. We know Little Man has symptoms from the iron dextran but we are suspicious that it is just draining to withstand an IV poke, followed by a 6hr.infusion. It takes him a few days to re-coop from that. We decide it is worth trialing the iron sucrose, to see if his body responds any differently, or at least see if the less time will be less draining on his system.
We move nowhere while getting IV iron- there are too many residual symptoms to know what is related to what, and it takes too much on his body. So any food trials we are doing, have to stop during IV iron. We are supposed to get it done two times a week, but with the 6hr.infusion, it is just too draining. A 45min.infusion may give us that 2x/week and get his iron restored so we can take those symptoms, and the anemia out of the symptomatic picture. It's worth a trial. It's always all about the trials.
Once again, he is fatigued during the IV placement, and lab draw- too tired to even fight me. We get through the 45min.infusion and come home to relax. I check his labs online, and see his hemoglobin is now up to 9.5 (from 8.5)! It rose a point with his previous infusion! I am thrilled, but wait....that means the recent fatigue isn't from the anemia? It's on the rise, a 9.5 is a GOOD hemoglobin for him! (normal range is 10.5-13.5g/dl). A look further down the list of CBC and I see his Leukocytes are low at 5.1 (normal range 6-11 x 10(9)/L) and his Platelets are high at 569 (normal range 150-450x 10(9)L). These are his "signature" post-reaction labs. Thankfully, they are only marginally away from normal range. They can indicate either inflammation or infection in the body. He isn't sick, but he is re-cooping from a mystery reaction.....now more clear, seeing these labs, it was a reaction- we just don't know for sure what to.
We expect him to re-coop nicely, following a rest on the iron infusion day....hoping his hemoglobin levels respond nicely again to this infusion. Instead - he continues to decline. Is he still re-cooping from the Saturday reaction? Maybe. But he is going on the wrong direction.....from bad to worse. Why? And why is he so sleepy? So fatigued? He seems flu- like, but isn't running a fever, has low muscle tone and is getting dehydrated looking, losing weight, and very pale. His diaper changes are green, slime, mucus, and blood specked, and very randic smelling. An FPIES family knows that reaction smell- the kind that you can smell from upstairs when he is downstairs! The kind that takes 8hrs.to clear from your house, even though you wrapped up the diaper and put it right outside in the trash. Yep, that diaper. But, how does that happen if the sucrose (corn) did not go through his gut? I suspect it has something to do with the involvement of the lymph nodes in the colon. At Little Man's first scope, lymphnodular hyperplasia was visualized, it has been clear on every other scope but I suspect this lymph system would be "processing" those recognized Tcells- and the evidence is in that diaper.
We hold him all the time for a few days- we contemplate bringing him in to see his pediatrician....we know there is little that can be done, and he is eating/drinking, and he's not throwing up, he's just so very tired. This is reminding me way too closely of his post-corn fail last July...and I'm getting nervous- when will he turn the corner? Two days later, with little change and no improvements, we try to get him scheduled with his pediatrician, and are unable to that day. We got an appointment for the following day, and his pediatrician shares our concern that he looks "punky" and not his usual self. He assures me his ears and lungs are clear, his breathing is steady, his blood pressure is stable. We just need to wait it out, watch him closely, push fluids/his formula, the TLC we've already been doing. He assures me he is on-call and wants to see him again if he does not improve.
Already he has been making improvements that day, so we are hopeful he will continue to make improvements everyday. Thankfully, he does. Each day has gotten better since then and by this weekend (Happy Mother's Day), he was finally talking, smiling and playing again. His energy is still low, and he's still re-cooping but making great strides the past few days as well. We have some ground to make up, as he lost almost 2# over the past few weeks. His appetite has been picking up daily, and he does well as long as his probiotic is in his formula (getting small amounts in every bottle).
Little Man's daddy and I are sure this downhill slide wasn't as much from the reaction as it was from the sucrose- a full body response- sparing his stomach and small intestine. We will not plan to do IV iron sucrose again. It remains to be seen if we will need to go back to IV iron dextran. We are hopeful to trial some meat soon instead. How about Bison?
Little man has had IV iron Dextran in the past. Dextran is a sugar made of many glucose molecules. Sugars for IV (detrose, dextran, sucrose) are most commonly derived from corn. We have always seen some symptoms with these IV solutions, but never very significant. Nothing significant enough to over-ride his need for receiving the solutions. It is always a lesser of two evils approach. IV dextrose brought him out of acidosis following tapioca fail; IV nutrition healed his villus atrophy, IV iron dextran corrected his anemia. IV iron dextran takes 6hours to infuse. There is a shorter version: IV iron sucrose.
Sucrose is a sugar made of fructose and glucose molecules. So, it is a more complex molecule, that the body will still have to break down. But wait, he has a gut allergy- right? Yes, FPIES is a food allergy of the gut. The gut takes the "hit"- as if there were hives or eczema happening on the surface of the intestines, or anaphlyaxis of the stomach. But the mechanisms are thought to be T-cell mediated. T-cells travel through the lymph system. T cells are not limited to just the gut- that is merely where they are concentrated and trained to recognize for this type of allergy. But Tcells also respond to skin- look up Atopy Patch Testing. Also, read here: NonImmunoglobin E-mediated Immune Reactions to Foods by Dr.Spergel where he illustrates how learning about Tcells from Atopic Dermatitis patients has furthered understanding of this immune mechanism of food allergy.
So, dextrose is from corn, dextran is from corn, sucrose is also from corn (isn't everything?). IV iron sucrose takes 45min. vs. IV iron dextran's 6hrs. We know Little Man has symptoms from the iron dextran but we are suspicious that it is just draining to withstand an IV poke, followed by a 6hr.infusion. It takes him a few days to re-coop from that. We decide it is worth trialing the iron sucrose, to see if his body responds any differently, or at least see if the less time will be less draining on his system.
We move nowhere while getting IV iron- there are too many residual symptoms to know what is related to what, and it takes too much on his body. So any food trials we are doing, have to stop during IV iron. We are supposed to get it done two times a week, but with the 6hr.infusion, it is just too draining. A 45min.infusion may give us that 2x/week and get his iron restored so we can take those symptoms, and the anemia out of the symptomatic picture. It's worth a trial. It's always all about the trials.
Once again, he is fatigued during the IV placement, and lab draw- too tired to even fight me. We get through the 45min.infusion and come home to relax. I check his labs online, and see his hemoglobin is now up to 9.5 (from 8.5)! It rose a point with his previous infusion! I am thrilled, but wait....that means the recent fatigue isn't from the anemia? It's on the rise, a 9.5 is a GOOD hemoglobin for him! (normal range is 10.5-13.5g/dl). A look further down the list of CBC and I see his Leukocytes are low at 5.1 (normal range 6-11 x 10(9)/L) and his Platelets are high at 569 (normal range 150-450x 10(9)L). These are his "signature" post-reaction labs. Thankfully, they are only marginally away from normal range. They can indicate either inflammation or infection in the body. He isn't sick, but he is re-cooping from a mystery reaction.....now more clear, seeing these labs, it was a reaction- we just don't know for sure what to.
We expect him to re-coop nicely, following a rest on the iron infusion day....hoping his hemoglobin levels respond nicely again to this infusion. Instead - he continues to decline. Is he still re-cooping from the Saturday reaction? Maybe. But he is going on the wrong direction.....from bad to worse. Why? And why is he so sleepy? So fatigued? He seems flu- like, but isn't running a fever, has low muscle tone and is getting dehydrated looking, losing weight, and very pale. His diaper changes are green, slime, mucus, and blood specked, and very randic smelling. An FPIES family knows that reaction smell- the kind that you can smell from upstairs when he is downstairs! The kind that takes 8hrs.to clear from your house, even though you wrapped up the diaper and put it right outside in the trash. Yep, that diaper. But, how does that happen if the sucrose (corn) did not go through his gut? I suspect it has something to do with the involvement of the lymph nodes in the colon. At Little Man's first scope, lymphnodular hyperplasia was visualized, it has been clear on every other scope but I suspect this lymph system would be "processing" those recognized Tcells- and the evidence is in that diaper.
We hold him all the time for a few days- we contemplate bringing him in to see his pediatrician....we know there is little that can be done, and he is eating/drinking, and he's not throwing up, he's just so very tired. This is reminding me way too closely of his post-corn fail last July...and I'm getting nervous- when will he turn the corner? Two days later, with little change and no improvements, we try to get him scheduled with his pediatrician, and are unable to that day. We got an appointment for the following day, and his pediatrician shares our concern that he looks "punky" and not his usual self. He assures me his ears and lungs are clear, his breathing is steady, his blood pressure is stable. We just need to wait it out, watch him closely, push fluids/his formula, the TLC we've already been doing. He assures me he is on-call and wants to see him again if he does not improve.
Already he has been making improvements that day, so we are hopeful he will continue to make improvements everyday. Thankfully, he does. Each day has gotten better since then and by this weekend (Happy Mother's Day), he was finally talking, smiling and playing again. His energy is still low, and he's still re-cooping but making great strides the past few days as well. We have some ground to make up, as he lost almost 2# over the past few weeks. His appetite has been picking up daily, and he does well as long as his probiotic is in his formula (getting small amounts in every bottle).
Little Man's daddy and I are sure this downhill slide wasn't as much from the reaction as it was from the sucrose- a full body response- sparing his stomach and small intestine. We will not plan to do IV iron sucrose again. It remains to be seen if we will need to go back to IV iron dextran. We are hopeful to trial some meat soon instead. How about Bison?
Saturday, April 16, 2011
I can't do it alone....
There, I said it. I've been saying it a lot lately actually. I have always said it but maybe not out loud as much. Maybe it is because in the beginning of the spiral of events, I was seen as not coping. Maybe I wasn't....but I do believe I was coping as best as I could have for the time (but certainly could not have stayed in that frame of mind for long). My not coping was then viewed as my son's illness not being as serious as it was. The self doubt, stress and anxiety that brings certainly doesn't encourage coping skills.
I have since adapted multiple coping skills. Accepting help is one of them. Accepting help from outside but inside too. Little Man was breastfed, formula's had made him very sick. He depended on me to provide him nourishment and comfort. I was the one providing his nourishment- whether I was with him or not. I was the one providing him comfort in the middle of the night when his pain and attacks would disturb his sleep. So much disturbed sleep, the world was becoming a haze of auto-pilot wife/mother/worker. I can't do it alone....
I admitted I needed help, I asked Little Man's daddy to help get up with him. I had pumped milk in bottles, he could have. It didn't take many nights for him to ask "what is wrong with him?"....my asking for help helped me to see that it wasn't all in my tired head. His daddy could tell too that something just wasn't right. That began to help both of us see his daytime symptoms more clearly. The more things we tried, the worse he got. Then, I asked for help again. Yet again, help I should have asked for sooner...from our pediatrician. It didn't take long for her too, to say "what is wrong with him?"...and, most importantly (and why I respect her so much)..."I don't know what is wrong but we need help and I will be here through it with you until we figure it out". Asking for help, again, helped me to see that it is so rare of an occurrences that an experienced pediatrician did not fully know it, then why should I think I could understand it. I can't do it alone.
Many of the next steps that followed again crippled me from asking for help. The next steps of us asking for help brought on more of the self-doubt, stress and anxiety when other doctors and specialists did not know what was wrong with him either and dismissed it as not very serious. These were some very long months in our family, and we became more and more inclusive as we felt more and more isolated. Little man's daddy and I leaned on each other. A trip across the country, food trials and reactions, hospitalizations, trying to raise 3 other boys to be strong, smart, considerate, faith-filled young men. I can't do it alone....
I've spoke about how the fellow FPIES moms/families have helped me through this, helped support me, helped me find new roads to explore, new foods to try, new doctors to see, new research. Asking for help in this community has helped to connect many pieces as we share and compare similiarities and differences along the spectrum of this illness. I've also spoke about friends and family who have helped. But the one person I haven't talked enough about is the one I can't do this without. Little Man's daddy.
Little man's daddy wrote this post about us, about our family: Resolved Hero's. For a very private man, this was no small feat, a view from the daddy side of this illness, it was a gift- more than money could buy or a dozen roses could convey.
Often people will ask me, you have 4 kids- and this Little Man requires so much attention...how do you do it all? I don't do it alone....
I have since adapted multiple coping skills. Accepting help is one of them. Accepting help from outside but inside too. Little Man was breastfed, formula's had made him very sick. He depended on me to provide him nourishment and comfort. I was the one providing his nourishment- whether I was with him or not. I was the one providing him comfort in the middle of the night when his pain and attacks would disturb his sleep. So much disturbed sleep, the world was becoming a haze of auto-pilot wife/mother/worker. I can't do it alone....
I admitted I needed help, I asked Little Man's daddy to help get up with him. I had pumped milk in bottles, he could have. It didn't take many nights for him to ask "what is wrong with him?"....my asking for help helped me to see that it wasn't all in my tired head. His daddy could tell too that something just wasn't right. That began to help both of us see his daytime symptoms more clearly. The more things we tried, the worse he got. Then, I asked for help again. Yet again, help I should have asked for sooner...from our pediatrician. It didn't take long for her too, to say "what is wrong with him?"...and, most importantly (and why I respect her so much)..."I don't know what is wrong but we need help and I will be here through it with you until we figure it out". Asking for help, again, helped me to see that it is so rare of an occurrences that an experienced pediatrician did not fully know it, then why should I think I could understand it. I can't do it alone.
Many of the next steps that followed again crippled me from asking for help. The next steps of us asking for help brought on more of the self-doubt, stress and anxiety when other doctors and specialists did not know what was wrong with him either and dismissed it as not very serious. These were some very long months in our family, and we became more and more inclusive as we felt more and more isolated. Little man's daddy and I leaned on each other. A trip across the country, food trials and reactions, hospitalizations, trying to raise 3 other boys to be strong, smart, considerate, faith-filled young men. I can't do it alone....
I've spoke about how the fellow FPIES moms/families have helped me through this, helped support me, helped me find new roads to explore, new foods to try, new doctors to see, new research. Asking for help in this community has helped to connect many pieces as we share and compare similiarities and differences along the spectrum of this illness. I've also spoke about friends and family who have helped. But the one person I haven't talked enough about is the one I can't do this without. Little Man's daddy.
Little man's daddy wrote this post about us, about our family: Resolved Hero's. For a very private man, this was no small feat, a view from the daddy side of this illness, it was a gift- more than money could buy or a dozen roses could convey.
Often people will ask me, you have 4 kids- and this Little Man requires so much attention...how do you do it all? I don't do it alone....
Thursday, August 5, 2010
Disaccharidase Deficiency
"The intestinal biopsy from this patient had a generalized disaccharide deficiency"...so reads Little Man's lab results from the biopsy test. I had them mail me his latest labs (pre hospital and during hospital) as I keep a medical file on him at home and like to have copies of things like that. His levels are on the low end of abnormal....they are all about half of what they should be.
This is how his lab results read:
Lactase 12.2 with normal range being 24.5 +/- 8 and abnormal being anything below 15.0
Sucrase 12.2 with normal range being 54.4 +/-25.4 and abnormal being anything below 25
Maltase 50.8 with normal range being 160.8 +/-62.8 and abnormal being anything below 100.
Palatinase 2.0 with normal range being 11.1 +/- 6.5 and abnormal being anything below 5
Well, I'm sure they were waiting for his appt with the GI on the 23rd to discuss these results but here they were on the lab report...and I don't need a GI doctor to tell me what this means.
I KNEW there was an issue with sugars! I had to talk them into doing this test (the GI didn't have to much experience with doing it). It was sent to NY, so we didn't have the result right away.
I am not sure yet if this is something he will have life long, or if it is as I've learned about - a secondary deficiency because of the inflammation.
SO, this would be why he did so poorly on tapioca starch, and all fruits and everything with sugar basically....I have more research to do on it and I hope his GI will have more to add but it was a bitter sweet finding. I knew it.....but I was hoping I was wrong - you know?
Will the mom with more knowledge/awareness on FPIES and her son please stand? Oh, wait- please sit down....she's tired! It's been a long week (ok, it's been a long year). As we learn more about test results and process through more from the hospital stay....I am starting to feel the (long overdue really) impatience with the medical system here. I know his "team" cares very much -- maybe even too much. But, I just wish they could help more....maybe they just think I can handle it (because I am)? I need to find a way to get them on the same page- so this doesn't continue to be so exhausting and so I don't have to constantly think about how I am going to next update everyone...and get them to hear me so they can help me help my little man.
I struggle asking for help. Little Man's daddy and I are not accustomed to asking for help- we are used to doing it on our own. I am not sure if this is just how we were both raised, or because of him being in the military and not having family around, or pride or maybe just plain stupidity but we feel our children are OUR children- and therefore OUR responsibility. God is entrusting them to us. We "dealt" with Little man's "issues" (as we used to call them) for many months on our own- he was sensitive to foods in my breastmilk and this caused a lot of weird symptoms for him. He got more and more sensitive as we introduced formula's and foods and we tried to figure things out. I finally asked for help- not first from his pediatrician but from my colleagues- Dietitian's; shortly after I brought his pediatrician up to speed. I now regret not bringing her in the loop sooner but I was just trying to figure it out on my own (again, my kids = my responsibility) and at this time there was throwing up but nothing severe or violent. When I finally did bring it to the pediatrician, it didn't take many visits for her to realize that something was not right with Little Man. She was worried about eosinophilic esophagitis (which we have since learned the two can look a lot alike in the early months). She knew enough to know something wasn't right, but not enough to know what to do to help. But she continued to try. In and out of specialists we went, doctors in the hospital, an endoscopy with biopsy's, lab tests, and of course many sleepless nights- trapped in a glass box that was suffocating me. That feeling of hopelessness....when your baby is in pain and you just know something is so wrong and you keep reaching out for help, putting yourself out there- vulnerable...having people say you are just too anxious and that is why he is so sick or that you're not coping (how does one cope when you have a sick child and no one knows how to help and you keep getting shut doors?). My walls are still up...and Little man's daddy has a fortress built up....a man's responsibility is to protect.
We were building up a team of doctors that we can trust and rebuilding my ability to ask for help...until, this last hospital stay brought too much of that back and now I am feeling a distrust again. If I ask for more help with managing his care, will I be told I am not coping again? Isn't asking for help part of coping? Isn't building up support systems coping? Blogging is coping for me- it is therapeutic to journal our journey and "get it out", reading others blogs is also therapeutic. Finding "normal" in our lives again is coping. I always accept any suggestions for ways to help cope better. I know that is what is best for my boys. A happy (ie non-stressed) mommy = happy family.
Ok, this post went down a curvy path. But these continued lab results and findings only are bringing more and more of this to surface. I have been saying all of these things about Little Man for months...but I'm not being heard. Will they hear me now?
This is how his lab results read:
Lactase 12.2 with normal range being 24.5 +/- 8 and abnormal being anything below 15.0
Sucrase 12.2 with normal range being 54.4 +/-25.4 and abnormal being anything below 25
Maltase 50.8 with normal range being 160.8 +/-62.8 and abnormal being anything below 100.
Palatinase 2.0 with normal range being 11.1 +/- 6.5 and abnormal being anything below 5
Well, I'm sure they were waiting for his appt with the GI on the 23rd to discuss these results but here they were on the lab report...and I don't need a GI doctor to tell me what this means.
I KNEW there was an issue with sugars! I had to talk them into doing this test (the GI didn't have to much experience with doing it). It was sent to NY, so we didn't have the result right away.
I am not sure yet if this is something he will have life long, or if it is as I've learned about - a secondary deficiency because of the inflammation.
SO, this would be why he did so poorly on tapioca starch, and all fruits and everything with sugar basically....I have more research to do on it and I hope his GI will have more to add but it was a bitter sweet finding. I knew it.....but I was hoping I was wrong - you know?
Will the mom with more knowledge/awareness on FPIES and her son please stand? Oh, wait- please sit down....she's tired! It's been a long week (ok, it's been a long year). As we learn more about test results and process through more from the hospital stay....I am starting to feel the (long overdue really) impatience with the medical system here. I know his "team" cares very much -- maybe even too much. But, I just wish they could help more....maybe they just think I can handle it (because I am)? I need to find a way to get them on the same page- so this doesn't continue to be so exhausting and so I don't have to constantly think about how I am going to next update everyone...and get them to hear me so they can help me help my little man.
I struggle asking for help. Little Man's daddy and I are not accustomed to asking for help- we are used to doing it on our own. I am not sure if this is just how we were both raised, or because of him being in the military and not having family around, or pride or maybe just plain stupidity but we feel our children are OUR children- and therefore OUR responsibility. God is entrusting them to us. We "dealt" with Little man's "issues" (as we used to call them) for many months on our own- he was sensitive to foods in my breastmilk and this caused a lot of weird symptoms for him. He got more and more sensitive as we introduced formula's and foods and we tried to figure things out. I finally asked for help- not first from his pediatrician but from my colleagues- Dietitian's; shortly after I brought his pediatrician up to speed. I now regret not bringing her in the loop sooner but I was just trying to figure it out on my own (again, my kids = my responsibility) and at this time there was throwing up but nothing severe or violent. When I finally did bring it to the pediatrician, it didn't take many visits for her to realize that something was not right with Little Man. She was worried about eosinophilic esophagitis (which we have since learned the two can look a lot alike in the early months). She knew enough to know something wasn't right, but not enough to know what to do to help. But she continued to try. In and out of specialists we went, doctors in the hospital, an endoscopy with biopsy's, lab tests, and of course many sleepless nights- trapped in a glass box that was suffocating me. That feeling of hopelessness....when your baby is in pain and you just know something is so wrong and you keep reaching out for help, putting yourself out there- vulnerable...having people say you are just too anxious and that is why he is so sick or that you're not coping (how does one cope when you have a sick child and no one knows how to help and you keep getting shut doors?). My walls are still up...and Little man's daddy has a fortress built up....a man's responsibility is to protect.
We were building up a team of doctors that we can trust and rebuilding my ability to ask for help...until, this last hospital stay brought too much of that back and now I am feeling a distrust again. If I ask for more help with managing his care, will I be told I am not coping again? Isn't asking for help part of coping? Isn't building up support systems coping? Blogging is coping for me- it is therapeutic to journal our journey and "get it out", reading others blogs is also therapeutic. Finding "normal" in our lives again is coping. I always accept any suggestions for ways to help cope better. I know that is what is best for my boys. A happy (ie non-stressed) mommy = happy family.
Ok, this post went down a curvy path. But these continued lab results and findings only are bringing more and more of this to surface. I have been saying all of these things about Little Man for months...but I'm not being heard. Will they hear me now?
Saturday, July 31, 2010
"Hi!"
Little man can't stop saying it! To us, to his brothers, to friends, to strangers, to doctors, to nurses. The mask has been lifted, even if just briefly, again. Little man has lived so many of his days in pain, that he doesn't waste any time getting down to playing and learning new milestones, and words when he is pain free. He can say "hi","hi-5", "daddy", "momma", "woof", "quack", "neigh", "off", "on", "all done". He can give hi-5, wave bye-bye, clap, ask for his bottle, and he's learning puzzles. He also can walk and run of course! :) It is simply amazing to us that he catches up so fast to these milestones when he has less time to practice (because he has spent so much time in our arms, in pain).
We are very grateful we have pulled him out of his failure to thrive state he was heading down. Many FPIES kiddo's have this somewhere in their days, sometimes before diagnosis when little is understood about what is going on, and sometimes after when the right diet is being identified with food trials and eliminations. We have been running close to the wire for so many months, and we do our best to stay on top of his illness so we can learn more about how it is affecting him.
Little man had a follow up with his pediatrician yesterday (he now weighs in at 20#12oz!!!). The major Children's Hospitals (Mt.Sinai, CHOP, Jewish National) utilize a team approach for following these kiddo's and I am trying to duplicate that here- it makes perfect sense. Pediatrician's are at the center of their care, as they help manage the care of the "team" when so many things come into play- Allergist recommendations, GI work ups, Dietitian follow-ups. It all has to be monitored closely to be sure he stays thriving. I know this is where it would help to be at a place like CHOP (where our Allergist is) but we don't live in or near PA, so we are trying to make the best of what we have here. And what we have here, practically in our backyard, is one of the top leading medical facilities in the country- in the world! The doctors that want to learn about FPIES have been great, and they are really trying to help. Our pediatrician is great, and has been through all of this....but I still feel a disconnect between understanding FPIES and helping Little Man. I wish I could figure out how to get this better connected. The many days, months, and now going on a year of Little man being ill and monitoring and connecting his symptoms, and finding a diagnosis to explain it all, and managing his care, on top of him continuing to be sick, and on top of the other everyday things in life- our other children and their needs, our jobs, our home, etc....is all starting to get overwhelming when I also still feel I need to teach everyone about FPIES while trying to connect how it affects Little Man...most especially when he is as ill as he was before being hospitalized. We are trying so hard to find his baseline so we can build his tiny menu. It will be more difficult to do food trials when he is still having blood in stools and waking up screaming at night.
We are very grateful we have pulled him out of his failure to thrive state he was heading down. Many FPIES kiddo's have this somewhere in their days, sometimes before diagnosis when little is understood about what is going on, and sometimes after when the right diet is being identified with food trials and eliminations. We have been running close to the wire for so many months, and we do our best to stay on top of his illness so we can learn more about how it is affecting him.
Little man had a follow up with his pediatrician yesterday (he now weighs in at 20#12oz!!!). The major Children's Hospitals (Mt.Sinai, CHOP, Jewish National) utilize a team approach for following these kiddo's and I am trying to duplicate that here- it makes perfect sense. Pediatrician's are at the center of their care, as they help manage the care of the "team" when so many things come into play- Allergist recommendations, GI work ups, Dietitian follow-ups. It all has to be monitored closely to be sure he stays thriving. I know this is where it would help to be at a place like CHOP (where our Allergist is) but we don't live in or near PA, so we are trying to make the best of what we have here. And what we have here, practically in our backyard, is one of the top leading medical facilities in the country- in the world! The doctors that want to learn about FPIES have been great, and they are really trying to help. Our pediatrician is great, and has been through all of this....but I still feel a disconnect between understanding FPIES and helping Little Man. I wish I could figure out how to get this better connected. The many days, months, and now going on a year of Little man being ill and monitoring and connecting his symptoms, and finding a diagnosis to explain it all, and managing his care, on top of him continuing to be sick, and on top of the other everyday things in life- our other children and their needs, our jobs, our home, etc....is all starting to get overwhelming when I also still feel I need to teach everyone about FPIES while trying to connect how it affects Little Man...most especially when he is as ill as he was before being hospitalized. We are trying so hard to find his baseline so we can build his tiny menu. It will be more difficult to do food trials when he is still having blood in stools and waking up screaming at night.
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