I believe in God. I believe that we are created – with a plan and a purpose. As part of that purpose I believe that while fathers are created to provide for and protect their families, mothers are made to nurture and nourish their families.
It seems that somewhere between work, soccer practice, dance lessons, PTA, and the million other things that mom’s facilitate today, we (as a society) have lost sight of this created purpose. We have turned to pre-packaged, boxed, and frozen foods. I am not judging – life for us is crazy too – I made a frozen pizza for dinner this week. The other night Shawn said to me, “You love cooking.” It was 8:00 at night – the babies had just gone to bed and it was time for me to START dinner. I explained to him that there was a time when I loved cooking, but given the circumstances of our lives I can’t stand it anymore. I still like food but I sometimes find myself disgusted with the prospect of preparing it. It has only been since that conversation that I realized I have been in a food depression.
With BabyM refusing to eat for weeks now and BabyR refusing for at least a week, I have been consumed with frustration and a sort of anxiety. I have been trying to get them to eat ALL DAY – offering the sippy cup again and again – to no avail. This fight has become all consuming lately. Without any change we would most likely be heading toward a feeding tube.
I prayed for wisdom. Many others prayed as well.
Today I decided that the only thing left to look at as THE offender was the formula we had switched the twins to a few months ago. This switch mysteriously coincides with the flare up in their symptoms, but so many other things did too. What’s more, the GI doc told us that the old formula was not nutritionally complete for toddlers AND that there was no way for them to react to this formula since it was also an amino acid based elemental formula. Wow. We continue to learn that he is really not paying attention. As it turns out the old formula is designed for both infants and toddlers – this is regulated by the federal government so they can’t just say that if it’s not true. AND to add insult to injury, many of the FPIES moms have experienced reactions to the new formula as well.
So the challenge…Nutramigen AA (old formula) ALL day
The results...
The twins ate a modest amount first thing this morning. They both pulled the cup away from their mouths and looked at it for a while since it tasted different, but then ate it just the same. Nothing happened – no pain, fussiness, or diarrhea.
They have both been refusing to eat the second and fourth bottle of the day and have gone so far as to push it away or throw it. Today the second and fourth bottles were well received! I felt giddy (truly) when at the bed time feeding Mari saw me pick up her cup and started giggling saying, “ya, ya.”
As of late the typical consumption has been 12 to 16 ounces per day.
Today Mari has already had 15 – and the guaranteed 6 ounces for the “sleep feeding” at 11:00 will bring her to 21 – only 150 calories below her caloric need. I am sure that her little stomach needs a bit of a stretch. She was much less fussy and clingy today too. : )
BabyR actually FINISHED 2 of his bottles today! At bedtime he was up to 25 ounces and his sleep feeding will get him another 6 at least – bringing him to 31…still not where he needs to be for caloric intake, but getting there. He’ll be finishing all his bottles by the end of the week at this pace!
Today was a good day. Watching my children “eat” made me want to cry. It reminded me of the amazing gift it is to nurture and nourish my family.
Thank you for wisdom God.
Tonight I cooked dinner…and I enjoyed doing it.
Thursday, August 19, 2010
Tuesday, August 17, 2010
This Is The Main Point
Yesterday I heard from CHOP. They were calling to “offer me a second opinion.” Woo hoo! The only problem is that the appointment they gave us is October 19th. That is NINE weeks away. It was very nice of them to give us two appointments on the same day – back to back, but they don’t know me. They don’t know that I am willing to drive as far as it takes, as often as it takes, for as long as it takes.
Since we are not existing patients at CHOP there is no way for me to speak directly with the doctors to advocate for the twins. This is not ideal. I have never been great getting past the “gate keepers.” Having been in the sales business for a long time I am keenly aware that this is not my strong point. I pleaded with the scheduler to speak to the doctors again and tell them that I don’t need a same day appointment for both children, and that I am worried about letting the current GI doctor do a scope on BabyM given his lack of knowledge on their condition. She was very nice and told me she would email the doctors back and get back to me. She actually called me a couple of hours later. When I noticed the caller ID I was a bit disappointed because it almost seemed too quick. Apparently the doctors wanted to know when BabyM’s scope was scheduled for. I am still waiting to hear back.
In the mean time I spoke with another FPIES mommy and asked if she had any advice. I called the Eosiniphillic Clinic at CHOP and got some insight into how the clinic works. They told me that unless there is a confirmed EGID they will not see the patient. The good news is that the same doctors are the ones who see FPIES children; they just have to be set up as multiple appointments rather than in the clinic. The director of the clinic also told me that allergy is the driving force behind FPIES diagnosis and treatment. WHAT!? This makes me so frustrated with our Dr. Fancy Pants (GI doctor). He has never referred us to an allergist. I took them to an allergist once to look into IgE mediated allergies, but while I liked the doctor, she really didn’t know much to anything about FPIES (although FPIES was her impression). She handed me a medical study about the condition (which I already had) and sent us on our way. She did want to see the babies in a month to see how many foods they were on, but since they failed each trial I canceled the appointment. I am not sure now whether to be mad at myself or just frustrated. Maybe if I had kept going to see her SHE would have referred me to an FPIES literate allergist.
What to do from here… I am not sure. I know I cannot go back to the first allergist – she is no expert in the condition. I hesitate to switch to CHOP allergy since the twins NEED to see a GI just as bad. Perhaps I will get the ball rolling with CHOP allergy and CHOP GI.
Wisdom – I need wisdom.
Yesterday after the CHOP scheduler called me back about the date of BabyM’s scopes I sent out an email to some very amazing people. I have been sending prayer requests and updates to these people for almost a year and a half and I have no doubt that their prayers have made a difference. We have two children who before we have ever known what is wrong – have been getting the appropriate treatments. All along the way God has opened every door and provided for their every need. Sometimes it is difficult to remember that – but when I come to the end of myself God renews my strength. He has been doing that for a year and a half as well.
Today the story of Jesus calming the storm came into my mind. I was just walking up the stairs and a simple line came into my mind. “It was the main point.” Years ago I did a devotion with Sim, an amazing woman of God, where she focused on the fact that Jesus was sleeping. She repeatedly stated, “This was the main point – not the side point – Jesus was sleeping!” Often times we read this story in Matthew 8 and marvel (like the apostles did) that with just a word from Jesus the storm stopped raging.
The men were amazed and asked, "What kind of man is this? Even the winds and the waves obey him!"
What Sim was saying though is so important – and the Lord brought it to my recall today for a reason. Jesus was sleeping in the boat. He was not worried, he was not afraid, he was not scurrying around trying to save the boat, he was not even praying like he often did. He was sleeping. Like Sim said – this was the main point.
Today I am thinking of the twins and I know that Jesus is sleeping. He has it all under control. With one word he will speak things into motion.
“You will soon see the light at the end of the tunnel”
Since we are not existing patients at CHOP there is no way for me to speak directly with the doctors to advocate for the twins. This is not ideal. I have never been great getting past the “gate keepers.” Having been in the sales business for a long time I am keenly aware that this is not my strong point. I pleaded with the scheduler to speak to the doctors again and tell them that I don’t need a same day appointment for both children, and that I am worried about letting the current GI doctor do a scope on BabyM given his lack of knowledge on their condition. She was very nice and told me she would email the doctors back and get back to me. She actually called me a couple of hours later. When I noticed the caller ID I was a bit disappointed because it almost seemed too quick. Apparently the doctors wanted to know when BabyM’s scope was scheduled for. I am still waiting to hear back.
In the mean time I spoke with another FPIES mommy and asked if she had any advice. I called the Eosiniphillic Clinic at CHOP and got some insight into how the clinic works. They told me that unless there is a confirmed EGID they will not see the patient. The good news is that the same doctors are the ones who see FPIES children; they just have to be set up as multiple appointments rather than in the clinic. The director of the clinic also told me that allergy is the driving force behind FPIES diagnosis and treatment. WHAT!? This makes me so frustrated with our Dr. Fancy Pants (GI doctor). He has never referred us to an allergist. I took them to an allergist once to look into IgE mediated allergies, but while I liked the doctor, she really didn’t know much to anything about FPIES (although FPIES was her impression). She handed me a medical study about the condition (which I already had) and sent us on our way. She did want to see the babies in a month to see how many foods they were on, but since they failed each trial I canceled the appointment. I am not sure now whether to be mad at myself or just frustrated. Maybe if I had kept going to see her SHE would have referred me to an FPIES literate allergist.
What to do from here… I am not sure. I know I cannot go back to the first allergist – she is no expert in the condition. I hesitate to switch to CHOP allergy since the twins NEED to see a GI just as bad. Perhaps I will get the ball rolling with CHOP allergy and CHOP GI.
Wisdom – I need wisdom.
Yesterday after the CHOP scheduler called me back about the date of BabyM’s scopes I sent out an email to some very amazing people. I have been sending prayer requests and updates to these people for almost a year and a half and I have no doubt that their prayers have made a difference. We have two children who before we have ever known what is wrong – have been getting the appropriate treatments. All along the way God has opened every door and provided for their every need. Sometimes it is difficult to remember that – but when I come to the end of myself God renews my strength. He has been doing that for a year and a half as well.
Today the story of Jesus calming the storm came into my mind. I was just walking up the stairs and a simple line came into my mind. “It was the main point.” Years ago I did a devotion with Sim, an amazing woman of God, where she focused on the fact that Jesus was sleeping. She repeatedly stated, “This was the main point – not the side point – Jesus was sleeping!” Often times we read this story in Matthew 8 and marvel (like the apostles did) that with just a word from Jesus the storm stopped raging.
The men were amazed and asked, "What kind of man is this? Even the winds and the waves obey him!"
What Sim was saying though is so important – and the Lord brought it to my recall today for a reason. Jesus was sleeping in the boat. He was not worried, he was not afraid, he was not scurrying around trying to save the boat, he was not even praying like he often did. He was sleeping. Like Sim said – this was the main point.
Today I am thinking of the twins and I know that Jesus is sleeping. He has it all under control. With one word he will speak things into motion.
“You will soon see the light at the end of the tunnel”
Friday, August 13, 2010
The Latest Food Failure
With BabyM already diagnosed failure to thrive and now starting lose weight, we decided – with the ok from our favorite doctor – to trial a nutrient rich food. While Dr. Sullivan wanted us to trial a previously failed food, I took it as a “sign” that Wegmans didn’t have any organic sweet potatoes on the three different days that I went. We decided to go with Avocado.
Yesterday’s avocado trial was very funny. BabyR spit out the little cubes each time either he or I put one in his mouth. BabyM was more daring and ate a good bit. I finally mashed it up and had to sprinkle “pow-pow” (formula) over the top to get BabyR to give it a go.
BabyM started with hiccups before she even finished…not a good sign. After a few hours BabyR became clingy and fussy. Both BabyM and BabyR seemed to lose their appetite for the rest of the day. I took note knowing that only time would tell. This morning BabyR passed a stool that was unremarkable for the most part but still it did looked consistent with what we see when a food is leading to a reaction – we’ll have to give him a second portion and watch. BabyM on the other hand gave us quite a bit of information. The problem with the information is that I have only seen this with her once and it is not a “typical” reaction. She passed a stool spotted with small white “curds” – most likely malabsorbed fat. What this means I have NO idea. I am hoping some of the other FPIES mommies can offer some insight as to whether they have seen the same thing in their children.
With the GI doc on vacation until next week we’ll have to wait to get “expert” medical feedback. It is not as though his advice has been on target. Honestly I find the idea of consulting with him unnerving at this point since he treats me like some crazy diagnosis hunter. The funny thing is I AM looking for a specific diagnosis and I won’t stop until I get it…THE RIGHT ONE!
Taking this latest food failure into account I am tired. I spend hours researching –trying to find direction, ideas, and answers. I hope we can get into CHOP soon.
I am in need of God’s peace on days like these.
“You will soon see the light at the end of the tunnel.”
Jehovah Shalom
Yesterday’s avocado trial was very funny. BabyR spit out the little cubes each time either he or I put one in his mouth. BabyM was more daring and ate a good bit. I finally mashed it up and had to sprinkle “pow-pow” (formula) over the top to get BabyR to give it a go.
BabyM started with hiccups before she even finished…not a good sign. After a few hours BabyR became clingy and fussy. Both BabyM and BabyR seemed to lose their appetite for the rest of the day. I took note knowing that only time would tell. This morning BabyR passed a stool that was unremarkable for the most part but still it did looked consistent with what we see when a food is leading to a reaction – we’ll have to give him a second portion and watch. BabyM on the other hand gave us quite a bit of information. The problem with the information is that I have only seen this with her once and it is not a “typical” reaction. She passed a stool spotted with small white “curds” – most likely malabsorbed fat. What this means I have NO idea. I am hoping some of the other FPIES mommies can offer some insight as to whether they have seen the same thing in their children.
With the GI doc on vacation until next week we’ll have to wait to get “expert” medical feedback. It is not as though his advice has been on target. Honestly I find the idea of consulting with him unnerving at this point since he treats me like some crazy diagnosis hunter. The funny thing is I AM looking for a specific diagnosis and I won’t stop until I get it…THE RIGHT ONE!
Taking this latest food failure into account I am tired. I spend hours researching –trying to find direction, ideas, and answers. I hope we can get into CHOP soon.
I am in need of God’s peace on days like these.
“You will soon see the light at the end of the tunnel.”
Jehovah Shalom
Wednesday, August 11, 2010
Waiting...Not So Patiently
The Children’s Hospital of Philadelphia (CHOP) has a clinic that specializes in eosiniphillic disorders. These disorders are encompassed in the acronym EGID. We still need to ruled out an EGID for BabyM and BabyR, but either way the doctors at CHOP will be able to help. It will be amazing to be able to speak to a doctor that knows about FPIES. I can’t imagine I will have to advocate at the same level with doctors who know what they are talking about. I am sure I will still have to be informed and involved, but I am hopeful that this experience with the medical community will be totally different than the entire year and a half of BabyM and BabyR’s lives.
The intake process with CHOP is complete, but because the twins have been seen by a GI doctor in the past the appointment is classified as a "second opinion." That being the case, the medical team has to review their past medical records to even be able to give us an appointment. Until the records are reviewed they can’t even give me an estimate of how long it will take. Meanwhile BabyM has her scopes scheduled for September 10th (Good old Dr. D. has still not called me back about BabyR's scopes AND he went on vacation!) I am just praying that we can get into CHOP before BabyM's scopes so that the real specialists can take care of it. I know they won’t be able to scope her by then, but I am somewhat nervous that Dr. D. could miss something since he doesn’t seem to know too much about FPIES.
So, I am still waiting…not so patiently.
The intake process with CHOP is complete, but because the twins have been seen by a GI doctor in the past the appointment is classified as a "second opinion." That being the case, the medical team has to review their past medical records to even be able to give us an appointment. Until the records are reviewed they can’t even give me an estimate of how long it will take. Meanwhile BabyM has her scopes scheduled for September 10th (Good old Dr. D. has still not called me back about BabyR's scopes AND he went on vacation!) I am just praying that we can get into CHOP before BabyM's scopes so that the real specialists can take care of it. I know they won’t be able to scope her by then, but I am somewhat nervous that Dr. D. could miss something since he doesn’t seem to know too much about FPIES.
So, I am still waiting…not so patiently.
Monday, August 9, 2010
The Princess and the Pea...nut
Oh the life of an FPIES mom. Believe it or not it feels a little strange having to ask people if you can vacuum their floor whenever you go to their house. I guess it wouldn’t be so strange if you were just trying to help out with their housework, but when your motivation is to make sure there are no crumbs of food hanging around – it almost seems like your spewing insults at them.
Yesterday we were next door at my brother’s house before heading out with his family. As usual we spent most of the short time there chasing after my little scavengers as they prowled around for little things to eat. Sure enough they both managed to find some tiny crumb to put in their mouths.
Our practice is so ask them to take it out, sweep the mouth, and offer some ice chips or a pacifier. Unless of course they have managed to chew it up and have surely already ingested some – then we let them enjoy themselves and keep our eyes open for a reaction. So far – 100% - we always get one.
Well the little man found what we thought was a Cherio and was munching away. I tried to sweep his mouth with no luck – this was a lock-jaw scenario! So off we went on our outing. Fifteen minutes later while walking around the college I realized that this little guy was still chewing on something. Shawn, Bethany and I all tried to get him to open his mouth – there was no way a Cherio would last that long without being total mush. Finally we were able to sweep his mouth to find…little bits of a honey roasted peanut. The little bits were all that was left!
Yikes! As you can imagine we were nervous about an immediate anaphylaxis (IgE) reaction - even though the twins don’t really have any IgE mediated allergies – BabyM is classically allergic to soy and BabyR to dust mites but that’s about it as far as we know. Still, we watched and waited for a little while. Thank God nothing happened. Well – nothing happened immediately.
After having gone to bed at 7:30 BabyR woke up screaming around 10:00. He was sitting up, holding onto one ear and was inconsolable. We checked his temperature which was a bit elevated and decided to give him some Tylenol. Alll I could think was “oh great not another ear infection.” This morning BabyR woke up early and fussed until I went in to get him – absolutely nothing unusual there. BabyM and I spent the morning with a fussy boy who had no interest in eating and who still had a low grade fever.
Just before nap time he decided to tell me exactly what was going on. For the first time since his last bit of goat cheese a week or so ago, BabyR had a stool marked with a good bit of mucous.
Ok – no infection, just another positive FPIES reaction. I have never noted fever as a food ingestion symptom before, but after a quick google search and reading one of the medical studies – there it was. I guess this is probably one of the more extreme reactions so far – at least in terms of how quickly we saw the reaction.
I guess perhaps it goes without saying, but I’ll say it just the same – don’t be offended if I ask to vacuum your floor!
Yesterday we were next door at my brother’s house before heading out with his family. As usual we spent most of the short time there chasing after my little scavengers as they prowled around for little things to eat. Sure enough they both managed to find some tiny crumb to put in their mouths.
Our practice is so ask them to take it out, sweep the mouth, and offer some ice chips or a pacifier. Unless of course they have managed to chew it up and have surely already ingested some – then we let them enjoy themselves and keep our eyes open for a reaction. So far – 100% - we always get one.
Well the little man found what we thought was a Cherio and was munching away. I tried to sweep his mouth with no luck – this was a lock-jaw scenario! So off we went on our outing. Fifteen minutes later while walking around the college I realized that this little guy was still chewing on something. Shawn, Bethany and I all tried to get him to open his mouth – there was no way a Cherio would last that long without being total mush. Finally we were able to sweep his mouth to find…little bits of a honey roasted peanut. The little bits were all that was left!
Yikes! As you can imagine we were nervous about an immediate anaphylaxis (IgE) reaction - even though the twins don’t really have any IgE mediated allergies – BabyM is classically allergic to soy and BabyR to dust mites but that’s about it as far as we know. Still, we watched and waited for a little while. Thank God nothing happened. Well – nothing happened immediately.
After having gone to bed at 7:30 BabyR woke up screaming around 10:00. He was sitting up, holding onto one ear and was inconsolable. We checked his temperature which was a bit elevated and decided to give him some Tylenol. Alll I could think was “oh great not another ear infection.” This morning BabyR woke up early and fussed until I went in to get him – absolutely nothing unusual there. BabyM and I spent the morning with a fussy boy who had no interest in eating and who still had a low grade fever.
Just before nap time he decided to tell me exactly what was going on. For the first time since his last bit of goat cheese a week or so ago, BabyR had a stool marked with a good bit of mucous.
Ok – no infection, just another positive FPIES reaction. I have never noted fever as a food ingestion symptom before, but after a quick google search and reading one of the medical studies – there it was. I guess this is probably one of the more extreme reactions so far – at least in terms of how quickly we saw the reaction.
I guess perhaps it goes without saying, but I’ll say it just the same – don’t be offended if I ask to vacuum your floor!
Friday, August 6, 2010
The Battle Rages On, But...
I am thanking God for leading us in this rollercoaster journey.
Long ago, the twins started out at a large pediatrician’s office where they were until around six months old. Although I had to hold her hand through much of BabyM and BabyR’s initial GI difficulties in life – I liked our doctor quite a lot. Early on the office refused to accommodate the alternate vaccine schedule we wanted to do (in particular because we feared complicating the twin’s issues with loads of different vaccines). They did not refuse to keep the twins on as patients, but they sent us to the PA Vaccine Clinic since they would administer which ever vaccines you requested. I filled out the paperwork at the vaccine clinic INCLUDING the questions about allergies. They were so intimidated by the allergy issues that they refused to give ANY vaccines to the kids and insisted that the shots needed to be given with supervision of a doctor (the clinic was run by nurses) just in case there were complications.
Right there in the clinic I called the pediatricians office, explained the situation, and pleaded with them to make an exception on their vaccine rule. They refused. As I was leaving the clinic, one of the women behind the desk mentioned that she might know of a doctor who would do an alternate schedule. She gave me a name and phone number which I slipped into the vaccine book that I had brought with me.
When I called the doctor’s office they told me that they did not offer vaccines at all. The receptionist told me that it was probably because as a family practice they didn’t see many children. I slipped the little piece of paper back in the book and kept looking for a pediatrician that could help us. We did find one. He turned out to be a vaccine advocate and planned on bullying me into doing things the “right way.” Each time I gave in to him I left the office terrified that I had made the wrong decision and upset that he had pushed me into something that my husband and I had put a lot of thought and research into.
Juxtaposed to the children’s health there was mine. I was being referred to specialist after specialist and no one could tell me what was wrong with me – well according to them it was all in my head. One day I was doing some research and I came across a specialty called environmental medicine. This sounded like EXACTLY what kind of doctor I needed to see! I searched for one in the area and found one. Yup, ONE. His name was John Sullivan. It wasn’t until I called his office that I realized he was the same doctor I had been referred to by the vaccine clinic. Interesting.
Well this is really about BabyM and BabyR so I will fast forward past all of my own health issues that “Doc” addressed and skip to the point. In November the twins saw Dr. Sullivan for the first time. He was the first doctor who listened, who didn’t think I was overreacting, who agreed that they were suffering from Leaky Gut (something most doctors don’t believe in – even though there are medical studies proving it exists – well they call it something much more sophisticated and swear that it is only a factor in – well who knows what kind of cases). Doc insisted that if we didn’t first heal the gut they would react to every food under the sun. And so the work began.
We have now worked with Dr. Sullivan for 10 months. He is the only doctor in babyM and BabyR’s lives who I trust and respect. And even when he doesn't automatically know the answer he's willing to go deeper. He never makes me feel like my research is useless and he's the one with all the answers.
Today I am thanking God for leading us to Doc. As it turns out there was one other time that we were pointed to Dr. Sullivan – all three instances came from completely different sources. I love those little “coincidences.” What’s more God opened the door for the twins to receive a very expensive “alternative” treatment that no other doctors around even know about.
Today Dr. Sullivan and I checked in regarding this treatment.
We think it is working. We think it may be the reason that BabyM and BabyR’s condition has flared up now – since the treatment must be repeated every two months (and BabyM and BabyR had to skip their last treatment due to strep throat). There is no way for us to be sure just yet since they won’t have another treatment until after the colonoscopy/endoscopy. We have to watch and wait (my favorite thing).
I have still not heard from Mr. White Coat about BabyR’s scopes so the battle rages on. Even still, today I am grateful for Dr. Sullivan!
Long ago, the twins started out at a large pediatrician’s office where they were until around six months old. Although I had to hold her hand through much of BabyM and BabyR’s initial GI difficulties in life – I liked our doctor quite a lot. Early on the office refused to accommodate the alternate vaccine schedule we wanted to do (in particular because we feared complicating the twin’s issues with loads of different vaccines). They did not refuse to keep the twins on as patients, but they sent us to the PA Vaccine Clinic since they would administer which ever vaccines you requested. I filled out the paperwork at the vaccine clinic INCLUDING the questions about allergies. They were so intimidated by the allergy issues that they refused to give ANY vaccines to the kids and insisted that the shots needed to be given with supervision of a doctor (the clinic was run by nurses) just in case there were complications.
Right there in the clinic I called the pediatricians office, explained the situation, and pleaded with them to make an exception on their vaccine rule. They refused. As I was leaving the clinic, one of the women behind the desk mentioned that she might know of a doctor who would do an alternate schedule. She gave me a name and phone number which I slipped into the vaccine book that I had brought with me.
When I called the doctor’s office they told me that they did not offer vaccines at all. The receptionist told me that it was probably because as a family practice they didn’t see many children. I slipped the little piece of paper back in the book and kept looking for a pediatrician that could help us. We did find one. He turned out to be a vaccine advocate and planned on bullying me into doing things the “right way.” Each time I gave in to him I left the office terrified that I had made the wrong decision and upset that he had pushed me into something that my husband and I had put a lot of thought and research into.
Juxtaposed to the children’s health there was mine. I was being referred to specialist after specialist and no one could tell me what was wrong with me – well according to them it was all in my head. One day I was doing some research and I came across a specialty called environmental medicine. This sounded like EXACTLY what kind of doctor I needed to see! I searched for one in the area and found one. Yup, ONE. His name was John Sullivan. It wasn’t until I called his office that I realized he was the same doctor I had been referred to by the vaccine clinic. Interesting.
Well this is really about BabyM and BabyR so I will fast forward past all of my own health issues that “Doc” addressed and skip to the point. In November the twins saw Dr. Sullivan for the first time. He was the first doctor who listened, who didn’t think I was overreacting, who agreed that they were suffering from Leaky Gut (something most doctors don’t believe in – even though there are medical studies proving it exists – well they call it something much more sophisticated and swear that it is only a factor in – well who knows what kind of cases). Doc insisted that if we didn’t first heal the gut they would react to every food under the sun. And so the work began.
We have now worked with Dr. Sullivan for 10 months. He is the only doctor in babyM and BabyR’s lives who I trust and respect. And even when he doesn't automatically know the answer he's willing to go deeper. He never makes me feel like my research is useless and he's the one with all the answers.
Today I am thanking God for leading us to Doc. As it turns out there was one other time that we were pointed to Dr. Sullivan – all three instances came from completely different sources. I love those little “coincidences.” What’s more God opened the door for the twins to receive a very expensive “alternative” treatment that no other doctors around even know about.
Today Dr. Sullivan and I checked in regarding this treatment.
We think it is working. We think it may be the reason that BabyM and BabyR’s condition has flared up now – since the treatment must be repeated every two months (and BabyM and BabyR had to skip their last treatment due to strep throat). There is no way for us to be sure just yet since they won’t have another treatment until after the colonoscopy/endoscopy. We have to watch and wait (my favorite thing).
I have still not heard from Mr. White Coat about BabyR’s scopes so the battle rages on. Even still, today I am grateful for Dr. Sullivan!
Wednesday, August 4, 2010
This Is Hard.
When does it ever end? When will these medical issues become medical issues instead of one great big fight?
Twenty days ago I get some indication that Dr. D. – Mr. Pediatric Gastroenterologist – was “getting it.” Well, it is not as though my vigorous advocating is what convinced him. No, it was the blood that he saw for himself in BabyR’s stool. At the time of the appointment BabyR was the one with the more severe symptoms – at least in visible and quantitative terms. For this reason Dr. D. was adamant that when the time came to order the colonoscopy and the endoscopy we would surely have to order BabyRB’s procedures first. I agreed that this was fine since we would still be ordering BabyM’s soon after.
Well? The time is here. The testing for bacterial infections, metabolic issues, parasitic infections… all normal. Naturally when I got the results of these tests I left a message with the scheduler to see about scheduling the procedures. Nothing. Day two called back…left a message. When she returned my call she was confused – asking, “what procedures? I did send an email to Dr. D. when you I got your message yesterday but I haven’t heard anything.” Day three – nothing.
In the mean time my poor little girl is vomiting (for no apparent reason), refusing to eat, and yup…losing weight. One would think that upon hearing this Dr. D. would be moved to action. Wrong again. He was given this news on day two. I know things take time, but we are talking about a child who is already below the charts for her weight – which by the way “concerns” him. Today, day four, I called back and this time left a message for Dr. D.’s nurse.
I CANNOT BELIEVE the nature of the call I received:
Nurse R: Hi this is R. from Dr. D’s office.
Me: Hi how are you?
Nurse R: I’m good. Ok, so Dr. D. is going to order the scopes for BabyM. (Interesting inflection – as though he just decided this)
Me: Ok good. I know that will be a few weeks out for scheduling; did he say anything about what to do as far as her losing weight in the mean time?
Nurse R: No, just keep doing your best to get her to eat.
Me: Ok, thanks. Oh, wait what about BabyR’s tests? I know we weren’t going to do them at the same time, but is he going to schedule him too?
Nurse R: No, he just said we’re going to do BabyM at this point.
Me: We were –
Nurse R: (Interrupting) I just asked him that before I called and –
Me: (Interrupting) I’m going to need him to call me then.
ARE YOU KIDDING ME???
MR. White Coat and I had already agreed upon a course of treatment. If the tests all came back normal – i.e. there was no infection to explain away the twin’s (LIFE-LONG) symptoms – it was TIME to get a look at what is going on in their GI tract. Am I going crazy? Just a few weeks ago it was IMPERATIVE (according to Mr. White Coat) that BabyR have the procedures first.
What is perhaps even more frustrating than this game of white coat and patient (cat and mouse), is that all along the way in the course of BabyM and BabyR’s treatment the doctors have wanted to do medical tests on ONE of them – as opposed to both – and then interpret the results and plan a course of treatment for them BOTH. I have had to remind DOCTORS that these are TWO DIFFERENT PATIENTS. This seems nuts to me. If I didn’t have insurance and was asking them to run tests on one of them but to treat them both – they would tell me NO WAY!
So now I sit and I wait for Dr. D. to call me back. I have prayed for wisdom and I trust that by then I will be calm enough to actually speak to him without “letting him have it” – that never gets you ANYWHERE with these doctors anyway. I find that stroking the ego and allowing them to think that things are their idea works much better – sometimes I even play dumb with them. They love that…they really seem to feed off it.
It is not that I think all doctors are this way. I actually respect those doctors who don’t treat me like some kind of hyper vigilant parent looking for a medical diagnosis… just for kicks or attention. It may seem unbelievable to some, but this is the life of most (if not all) of the parents I have talked to who have FPIES babies.
This is hard. In this fight I am sustained only by faith and grace.
Jehovah Shammah. Jehovah Nissi. Jehovah Rapha. El Elyon.
Twenty days ago I get some indication that Dr. D. – Mr. Pediatric Gastroenterologist – was “getting it.” Well, it is not as though my vigorous advocating is what convinced him. No, it was the blood that he saw for himself in BabyR’s stool. At the time of the appointment BabyR was the one with the more severe symptoms – at least in visible and quantitative terms. For this reason Dr. D. was adamant that when the time came to order the colonoscopy and the endoscopy we would surely have to order BabyRB’s procedures first. I agreed that this was fine since we would still be ordering BabyM’s soon after.
Well? The time is here. The testing for bacterial infections, metabolic issues, parasitic infections… all normal. Naturally when I got the results of these tests I left a message with the scheduler to see about scheduling the procedures. Nothing. Day two called back…left a message. When she returned my call she was confused – asking, “what procedures? I did send an email to Dr. D. when you I got your message yesterday but I haven’t heard anything.” Day three – nothing.
In the mean time my poor little girl is vomiting (for no apparent reason), refusing to eat, and yup…losing weight. One would think that upon hearing this Dr. D. would be moved to action. Wrong again. He was given this news on day two. I know things take time, but we are talking about a child who is already below the charts for her weight – which by the way “concerns” him. Today, day four, I called back and this time left a message for Dr. D.’s nurse.
I CANNOT BELIEVE the nature of the call I received:
Nurse R: Hi this is R. from Dr. D’s office.
Me: Hi how are you?
Nurse R: I’m good. Ok, so Dr. D. is going to order the scopes for BabyM. (Interesting inflection – as though he just decided this)
Me: Ok good. I know that will be a few weeks out for scheduling; did he say anything about what to do as far as her losing weight in the mean time?
Nurse R: No, just keep doing your best to get her to eat.
Me: Ok, thanks. Oh, wait what about BabyR’s tests? I know we weren’t going to do them at the same time, but is he going to schedule him too?
Nurse R: No, he just said we’re going to do BabyM at this point.
Me: We were –
Nurse R: (Interrupting) I just asked him that before I called and –
Me: (Interrupting) I’m going to need him to call me then.
ARE YOU KIDDING ME???
MR. White Coat and I had already agreed upon a course of treatment. If the tests all came back normal – i.e. there was no infection to explain away the twin’s (LIFE-LONG) symptoms – it was TIME to get a look at what is going on in their GI tract. Am I going crazy? Just a few weeks ago it was IMPERATIVE (according to Mr. White Coat) that BabyR have the procedures first.
What is perhaps even more frustrating than this game of white coat and patient (cat and mouse), is that all along the way in the course of BabyM and BabyR’s treatment the doctors have wanted to do medical tests on ONE of them – as opposed to both – and then interpret the results and plan a course of treatment for them BOTH. I have had to remind DOCTORS that these are TWO DIFFERENT PATIENTS. This seems nuts to me. If I didn’t have insurance and was asking them to run tests on one of them but to treat them both – they would tell me NO WAY!
So now I sit and I wait for Dr. D. to call me back. I have prayed for wisdom and I trust that by then I will be calm enough to actually speak to him without “letting him have it” – that never gets you ANYWHERE with these doctors anyway. I find that stroking the ego and allowing them to think that things are their idea works much better – sometimes I even play dumb with them. They love that…they really seem to feed off it.
It is not that I think all doctors are this way. I actually respect those doctors who don’t treat me like some kind of hyper vigilant parent looking for a medical diagnosis… just for kicks or attention. It may seem unbelievable to some, but this is the life of most (if not all) of the parents I have talked to who have FPIES babies.
This is hard. In this fight I am sustained only by faith and grace.
Jehovah Shammah. Jehovah Nissi. Jehovah Rapha. El Elyon.
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