Wow! My poor darling! So far, she has been to her pediatrician, the GP, the pediatric consultant, pediatric gastro-enterologist and now to a dr with a specialty in nutrition. Whew! I am exhausted just thinking about it, but I am so thankful that I have been persistent throughout all of these "professionals" telling me that my daughter is OK. M is not "sick". However, she also not healthy and as her mother, who sees her every day, all day (and night!), I think these professionals need to acknowledge that perhaps mother DOES know best.
So, armed with the the knowledge that I might possibly know what I am talking about when it comes to my daughter, I nervously hauled her to the next specialist. I was having a bad day, so, at the last minute, I asked my husband to come with us to the pediatrician with the speciality in nutrition who I'll just call the MD/nutrition. Thank goodness my husband was there! M decided to have a meltdown in the office, which was fantastic! The dr got to see her arching her back, spitting up, crying inconsolably and eating constantly! We first saw the dietitian before the MD/nutrition who could not believe how much M ate in one sitting. She actually broke her own record this morning. She ate the full double jar (toddler sized) of squash, a quarter jar of the step 1 peas, 10 tablespoons of cereal and a few tablespoons of quinoa!!!! Whoa, mama!!!! The appointment was chaotic with M's constant upset, dietitian coming in and out of the room, MD/nutritionist answering his phone throughout and the student observing and receiving instructions throughout!!!
Well, not only did I feel heard at this appointment, but this doctor came up with a plan and some possible diagnosis. Eureka! He advised that :
1) It might be reflux (too much stomach acid and the food comes back up in the form of throw-up, causes gassiness, respiratory issues and hours of screaming).
2) It might be fat malabsorption (not sure what this is yet--still have to research it--in my spare time).
3) He is referring her to an allergist. I'm very satisfied that referral is being made. I have been asking her pediatrician for this referral for a months, but he kept saying she is too young. This is NOT true. Babies CAN be tested for allergies.
4) I asked him for a referral to a new pediatrician. One that will LISTEN and BELIEVE me when I express concern for my child. He agreed to do so. I have been exploring possible pediatricians on my own, but it is hard to get into a new one without a referral.
5) The dietitian is analyzing the recipe for the homemade formula. It is due to the homemade formula that the gastroenterologist was so concerned ie that M. is getting enough calories and macronutrients. The MD/Nutritionist is concerned about M getting either too much of or not enough of something in this formula. From my observations and the observations of other people who regularly see M, she has been thriving since introducing homemade formula. Her behaviours and issues have been significantly reduced with the homemade formula. However, with the introduction of solids, some of the behaviours/issues returned. I expect the analysis to come back with positive reviews, but I am prepared to hear of any concerns.
From this experience I have learned the following:
1) When the primary caregiver has a concern about baby, the concern is REAL. DO NOT allow a pediatrician or any other person talk you out of being concerned and insisting that your concern be looked into by the appropriate professional. If the pediatrician won't listen, talk baby to a GP. If the GP won't listen, take baby to a walk-in clinic. I had expressed concerns to the pediatrician months ago that M might have reflux and he would not even entertain the idea of considering this possibility.
2) When taking baby to a specialist, bring another adult to care for baby while you are talking to the specialist. Bring a pen and a notebook to keep an ongoing log of visits, specialists, etc.
3) Keep an ongoing log of concerns, from birth to present, including mom's prenatal history.
4) Look at mom and dad's family history. The MD/Nutritionist asked if I or my husband's family have a history of reflux. My father and brother both have reflux. My husband has heartburn. Even if the doctor does not ask (none of the other specialists asked for family history), offer this info.
5) Ask for feedback from those adults who regularly see your child. Do they see the same concerns? This is important for you to feel supported and validated in your concerns for your child.
Tuesday, November 24, 2009
Sunday, November 8, 2009
Ear Piercing
I did not realize what a heated subject ear piercing is until I started discussing piercing M's ears. One friend declared that piercing a baby's ears is desecrating her body without her permission. At a baby's first birthday party, the grandmother who has never met M looked at her and bluntly asked me why I pierced my daughter's ears. Wow! What to say to such an obvious judgement?
I spent quite a bit of time debating whether or not to pierce M's ears. I surveyed everybody I know as to what their reasons were for or against piercing. Those who were against piercing basically felt that the decision should be left to the child and when she is old enough to ask for pierced ears, mom would take her to get them pierced. The other common theme amongst the naysayers was the idea that piercing ears is a mother-daughter bonding moment that is cherished by both for a lifetime.
I asked my own mother why she decided to wait until I was 8 yrs to pierce my ears. Her response was simple: nobody pierced their baby's ears at that time. Well, I don't remember the actual piercing of my ears. But, I remember them getting infected. I remember my mother trying to clean the pus out every night and dropping earrings down the drain in the bathroom. I remember when my mother took me to the doctor and I had a meltdown when the doctor showed me the HUGE syringe he wanted to stick in my ears to drain the pus. I remember being given the choice of either letting the doctor stick the syringe in my ears or letting the piercings close up. I chose the latter. My eight year old mind was never going to allow a syringe near my ears.
I chose to pierce my daughter's ears as a gift to her. I didn't want her to remember any pain associated with ear piercing. After all, I have never met a girl who regretted having her ears pierced. However, I have met lots of girls who want and wish their ears were pierced.
I took M. to the mall with her father when she was 5.5 months old. I had gone to the mall earlier in the week with M. and watched a couple of children get their ears pierced. The girl who was about 8 took it like a trooper. The baby, who was probably about 1-1.5 yrs cried and I watched as her mother wiped the tears off of her face. I did not think I was strong enough to do this alone. M.'s father videoed the event. The lady at the mall was going to have her colleague pierce one ear while she pierced the other one simultaneously. However, M. was so wiggly that the mall said that she would just pierce one ear at a time. She also told me that I was not allowed to pick M. up and comfort her between ears. Heartbreaking.
M. sat on my lap for the piercings. She cried after her first ear was pierced and continued to cry until after the second one was done and I was able to comfort her. I had a bottle prepared for the occasion so I could offer her a little bit of bottle comfort after her trauma. It worked. Her ears were tender for about an hour and then M. was back to normal. I have to clean her ears twice a day for the next 8 weeks. She absolutely loves when I touch her ears and clean them. Usually, she is wiggling around on the change table, trying to roll over and grab anything and everything. Yet, when I show her the q-tip and alcohol, she stops writhing around and patiently waits for me to clean her ears. It is so validating. Her earrings look beautiful and M. will not have any memory of the trauma of the piercing. I am so glad that I made this decision to pierce her ears.
I spent quite a bit of time debating whether or not to pierce M's ears. I surveyed everybody I know as to what their reasons were for or against piercing. Those who were against piercing basically felt that the decision should be left to the child and when she is old enough to ask for pierced ears, mom would take her to get them pierced. The other common theme amongst the naysayers was the idea that piercing ears is a mother-daughter bonding moment that is cherished by both for a lifetime.
I asked my own mother why she decided to wait until I was 8 yrs to pierce my ears. Her response was simple: nobody pierced their baby's ears at that time. Well, I don't remember the actual piercing of my ears. But, I remember them getting infected. I remember my mother trying to clean the pus out every night and dropping earrings down the drain in the bathroom. I remember when my mother took me to the doctor and I had a meltdown when the doctor showed me the HUGE syringe he wanted to stick in my ears to drain the pus. I remember being given the choice of either letting the doctor stick the syringe in my ears or letting the piercings close up. I chose the latter. My eight year old mind was never going to allow a syringe near my ears.
I chose to pierce my daughter's ears as a gift to her. I didn't want her to remember any pain associated with ear piercing. After all, I have never met a girl who regretted having her ears pierced. However, I have met lots of girls who want and wish their ears were pierced.
I took M. to the mall with her father when she was 5.5 months old. I had gone to the mall earlier in the week with M. and watched a couple of children get their ears pierced. The girl who was about 8 took it like a trooper. The baby, who was probably about 1-1.5 yrs cried and I watched as her mother wiped the tears off of her face. I did not think I was strong enough to do this alone. M.'s father videoed the event. The lady at the mall was going to have her colleague pierce one ear while she pierced the other one simultaneously. However, M. was so wiggly that the mall said that she would just pierce one ear at a time. She also told me that I was not allowed to pick M. up and comfort her between ears. Heartbreaking.
M. sat on my lap for the piercings. She cried after her first ear was pierced and continued to cry until after the second one was done and I was able to comfort her. I had a bottle prepared for the occasion so I could offer her a little bit of bottle comfort after her trauma. It worked. Her ears were tender for about an hour and then M. was back to normal. I have to clean her ears twice a day for the next 8 weeks. She absolutely loves when I touch her ears and clean them. Usually, she is wiggling around on the change table, trying to roll over and grab anything and everything. Yet, when I show her the q-tip and alcohol, she stops writhing around and patiently waits for me to clean her ears. It is so validating. Her earrings look beautiful and M. will not have any memory of the trauma of the piercing. I am so glad that I made this decision to pierce her ears.
Thursday, November 5, 2009
Visiting the Pediatric Gastro-Enterologist
Well, M was an angelic baby during the long visit to the gastro-enterologist. But the days since that visit have been no picnic. The crying and writhing in pain are back. She arches her back, which is a sign of belly pain. The flatulence abounds. My poor baby--I wish I could have a do-over with the gastro.
Today I spoke to my colleague at the hospital who covers the pediatric floor. I asked her if the hospital does pediatric EEGs (brain scan) as there is some mild concern that M. has seizure activity. Turns out that my colleagues son has epilepsy and at age 18 he still sees a pediatric neurologist who happens to do EEGs, too. Score! A recommendation based on the personal experience of a nurse--how much better can it get? So, I called back the gastro and gave her secretary the info of this dr so M can be referred to her. Unfortunately, the gastro is apparently going away for a week and today is her last day at work. It was a different secretary that I spoke to this time, so no guarantees were given around whether the requisition would be signed today or in a week.
However, my colleague admonished me for jumping the queue to get my daughter in to see the gastro. I told her that it was not my decision as to when the appointment would be. I simply shmoozed the person who makes those decisions. Professionally, I have huge ethical issues with people jumping the queues, favoritism and unequal access to a so-called universal health care system. However, as a mother, I will do absolutely anything it takes to get my daughter what she needs as quickly as possible. Wouldn't you?
Today I spoke to my colleague at the hospital who covers the pediatric floor. I asked her if the hospital does pediatric EEGs (brain scan) as there is some mild concern that M. has seizure activity. Turns out that my colleagues son has epilepsy and at age 18 he still sees a pediatric neurologist who happens to do EEGs, too. Score! A recommendation based on the personal experience of a nurse--how much better can it get? So, I called back the gastro and gave her secretary the info of this dr so M can be referred to her. Unfortunately, the gastro is apparently going away for a week and today is her last day at work. It was a different secretary that I spoke to this time, so no guarantees were given around whether the requisition would be signed today or in a week.
However, my colleague admonished me for jumping the queue to get my daughter in to see the gastro. I told her that it was not my decision as to when the appointment would be. I simply shmoozed the person who makes those decisions. Professionally, I have huge ethical issues with people jumping the queues, favoritism and unequal access to a so-called universal health care system. However, as a mother, I will do absolutely anything it takes to get my daughter what she needs as quickly as possible. Wouldn't you?
Tuesday, November 3, 2009
Seeing the Specialist.
The pediatrician has been telling me that M is fine since he started seeing her the day after she was discharged from the hospital. All of the screaming, weight concerns, skin discoloration, excessive sweating, constant eating of huge quantities, bowel movements that were so solid that she had a skin tear in her bum...everything is normal. Well, I know I am a fierce mother bear, but I also like to think that I am not paranoid or a hypochondriac by proxy. After my friend's parents heard my daughter scream inconsolably for hours, arching her back and trying to self-soothe with her (oh-so-adorable) thumb, they agreed with me and encouraged me to become my daughter's advoc ate.
So, I took her to the GP with a typed and itemized printout of my prenatal history, and issues with M. since she was born, including all the good stuff like meeting her milestones early or on par to balance out the not so good like throwing up (not spitting up) all the time. He listened and read my print-out and lo and behold, referred me to a pediatrician who does consults. After waiting for a month for this consult, the dr, who is only in on Thursdays from 9am-12pm (I kid you not!) the appointment was cancelled at 9:38am on the same day of M's 11am appointment. Why? Wait for it...The dr had the flu. So, what you are telling me is the dr did not display any symptoms of illness until that day, after 9am???? I was so angry I took my daughter back to the GP and demanded a new referral. The next pediatric consultant was available to see her in a couple of days. Eurekah!
M and I showed up with moments to spare for her appointment, only to find out that this dr was called into the adjacent hospital to help resuscitate a baby. What can I say about that??? Luckily, it was the hospital in which I work, so I visited my colleagues, went shopping on the lobby carts (such fab stuff!) and waiting for my cell to ring with the news of the return of the dr.
After about an hour, we were summoned back to the doctor's office. He actually read my print-out (her regular pediatrician initialled it and put it on her chart at my request without actually reading it) , underlining the issues he felt were important. Any concerns that were normal, he didn't just dismiss, he actually explained why the behaviours or symptoms were normal. I felt like a real person in his office. He was sufficiently concerned about her mass intake (her record is 18oz of formula and then cereal in one sitting) to refer her to a pediatric gastroenterologist. (Say that ten times fast!)
A week later, I still had not been called with an appointment date. So, I called the pediatric consultant and then I called the gastroenterologist's office. The secretary, G., told me that since M was not deemed a priority, she will have an appointment in February 2010. Are you kidding? My 6 month old daughter has to wait for what will be the equivalent of 1/3 of her life for an appointment? I was having none of that. I shmoozed the secretary and got her an appt for the same week. The next day I received a call: there had been a cancellation today in two hours. A gift from the gods. I raced to fit in M's enormous, usually 1.5 hour morning routine of eating and getting dressed (yes, it takes her THAT long to eat!) and drive her the 50 km to the appt.
I was very impressed with the gastro. She spent a good hour with us listening to my concerns. She read over my print-out (which I update every couple of weeks now to keep an ongoing record of my concerns) before she saw us. Unfortunately, I was in a catch 22--I had taken M to see a naturopath who gave me the recipe for homemade formula. He also gave her a couple of remedies. These interventions have improved her health significantly. However, the gastro and all the western drs she has seen are concerned about the calories/nutrition of a formula that is not mass marketed. It has removed M from the pathology list, yet the issues were still there, just in more acceptable levels now. I decided to delay pushing for the test for the gluten allergy (my #1 suspicion as the behaviours came roaring back when I introduced barley into her diet). I found out M is eligible for allergy testing now, but it is painful and invasive. (Her pediatrician told me he would not allergy test until she is two). The Gastro was also concerned enough to offer me the option of an EEG (a brain scan) as M was having crying fits where she would stare off into space and I could not get her attention, regardless of what I tried. This is suspiciously like a petite-mal seizure. The Gastro did not feel that this test was necessary but she was prepared to order it if I gave her the go-ahead. The test is quick and painless so I consented. I am hoping it will rule out any seizure activity. Unfortunately, it will not tell us whether she has previously had a seizure. Rather, it will only detect any seizure activity at present. This behaviour has disappeared since the introduction of the homemade formula, so I am fairly confident the test will come back negative. The Gastro is also sending a referral for an MD with a specialty in nutrition who also has a nutritionist working in his office. The wait is only about 3 montsh--not an enternity for a baby!
In the meantime, I took M to see the naturopath this afternoon. After her angelic, healthy behaviour in the Gastro's office, she spent the duration of this visit crying, arching her back and refusing to be consoled. Why couldn't she have shown this side to the Gastro? The homeopath also saw her and we managed to get some homeopathic remedy into her to help with the "colic". M clamped her mouth shut at the site of the dropper, remembering, I'm sure, the natural cough medicine I was syringing into her. She hated that!
Colic is such a non-diagnosis. It just means the baby cries all the time, for no apparent reason. Well, excuse me, my daughter HAS a reason for crying. She just cannot communicate her reason except through crying. I still suspect allergies and a sore belly as the flatulence abounds during these fits. The only reinforcing factor in all of this is that both the Gastro and the Naturopath encouraged me to continue with my due diligence in finding the right diagnosis and care for my baby....It just breaks my heart to see her like this...
So, I took her to the GP with a typed and itemized printout of my prenatal history, and issues with M. since she was born, including all the good stuff like meeting her milestones early or on par to balance out the not so good like throwing up (not spitting up) all the time. He listened and read my print-out and lo and behold, referred me to a pediatrician who does consults. After waiting for a month for this consult, the dr, who is only in on Thursdays from 9am-12pm (I kid you not!) the appointment was cancelled at 9:38am on the same day of M's 11am appointment. Why? Wait for it...The dr had the flu. So, what you are telling me is the dr did not display any symptoms of illness until that day, after 9am???? I was so angry I took my daughter back to the GP and demanded a new referral. The next pediatric consultant was available to see her in a couple of days. Eurekah!
M and I showed up with moments to spare for her appointment, only to find out that this dr was called into the adjacent hospital to help resuscitate a baby. What can I say about that??? Luckily, it was the hospital in which I work, so I visited my colleagues, went shopping on the lobby carts (such fab stuff!) and waiting for my cell to ring with the news of the return of the dr.
After about an hour, we were summoned back to the doctor's office. He actually read my print-out (her regular pediatrician initialled it and put it on her chart at my request without actually reading it) , underlining the issues he felt were important. Any concerns that were normal, he didn't just dismiss, he actually explained why the behaviours or symptoms were normal. I felt like a real person in his office. He was sufficiently concerned about her mass intake (her record is 18oz of formula and then cereal in one sitting) to refer her to a pediatric gastroenterologist. (Say that ten times fast!)
A week later, I still had not been called with an appointment date. So, I called the pediatric consultant and then I called the gastroenterologist's office. The secretary, G., told me that since M was not deemed a priority, she will have an appointment in February 2010. Are you kidding? My 6 month old daughter has to wait for what will be the equivalent of 1/3 of her life for an appointment? I was having none of that. I shmoozed the secretary and got her an appt for the same week. The next day I received a call: there had been a cancellation today in two hours. A gift from the gods. I raced to fit in M's enormous, usually 1.5 hour morning routine of eating and getting dressed (yes, it takes her THAT long to eat!) and drive her the 50 km to the appt.
I was very impressed with the gastro. She spent a good hour with us listening to my concerns. She read over my print-out (which I update every couple of weeks now to keep an ongoing record of my concerns) before she saw us. Unfortunately, I was in a catch 22--I had taken M to see a naturopath who gave me the recipe for homemade formula. He also gave her a couple of remedies. These interventions have improved her health significantly. However, the gastro and all the western drs she has seen are concerned about the calories/nutrition of a formula that is not mass marketed. It has removed M from the pathology list, yet the issues were still there, just in more acceptable levels now. I decided to delay pushing for the test for the gluten allergy (my #1 suspicion as the behaviours came roaring back when I introduced barley into her diet). I found out M is eligible for allergy testing now, but it is painful and invasive. (Her pediatrician told me he would not allergy test until she is two). The Gastro was also concerned enough to offer me the option of an EEG (a brain scan) as M was having crying fits where she would stare off into space and I could not get her attention, regardless of what I tried. This is suspiciously like a petite-mal seizure. The Gastro did not feel that this test was necessary but she was prepared to order it if I gave her the go-ahead. The test is quick and painless so I consented. I am hoping it will rule out any seizure activity. Unfortunately, it will not tell us whether she has previously had a seizure. Rather, it will only detect any seizure activity at present. This behaviour has disappeared since the introduction of the homemade formula, so I am fairly confident the test will come back negative. The Gastro is also sending a referral for an MD with a specialty in nutrition who also has a nutritionist working in his office. The wait is only about 3 montsh--not an enternity for a baby!
In the meantime, I took M to see the naturopath this afternoon. After her angelic, healthy behaviour in the Gastro's office, she spent the duration of this visit crying, arching her back and refusing to be consoled. Why couldn't she have shown this side to the Gastro? The homeopath also saw her and we managed to get some homeopathic remedy into her to help with the "colic". M clamped her mouth shut at the site of the dropper, remembering, I'm sure, the natural cough medicine I was syringing into her. She hated that!
Colic is such a non-diagnosis. It just means the baby cries all the time, for no apparent reason. Well, excuse me, my daughter HAS a reason for crying. She just cannot communicate her reason except through crying. I still suspect allergies and a sore belly as the flatulence abounds during these fits. The only reinforcing factor in all of this is that both the Gastro and the Naturopath encouraged me to continue with my due diligence in finding the right diagnosis and care for my baby....It just breaks my heart to see her like this...
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