More on Baby E's medical history
Here are answers to some of the questions that have been asked in the comments on the summary of Baby E's first 15 months and several other posts. If I've missed any, please let me know.
Baby E has had no testing whatsoever other than allergy skin-prick testing and a blood draw for celiac screening, which tested just two elements and did not test for overall IGA deficiency. The tissue transglutaminase IGA-REF was 0.5 and the IGG-REF was 0.6.
The only reason she got that test was that I called and specifically asked the doctor to order a celiac test after she did so well on a week of no gluten and got sick again when we reintroduced it. I asked if he wanted to see her considering how sick she was, but he ordered the test without seeing her at that time.
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DH has a niece with celiac and my sister can't tolerate any gluten but hasn't been tested for celiac. That along with a number of other things in the family history makes it seem to me like something that should at least be ruled out, given her symptoms. I'd been asking about celiac testing for months, but both the ped and the allergist thought it unecessary when I had asked before.
Baby E did have the PKU testing just after birth, with the drop of blood from the heel.
Other than a vitamin K shot at birth she's had no vaccinations (although our other children are vaccinated) because according to our pediatrician's research the vaccines all seem to have ingredients she's very allergic to (corn and soy derivatives, mainly).
Our pediatrician feels that in her situation the risks outweigh the benefits for vaccinations at this time, but he's working on trying to find some that don't contain her allergens. He stays very up-to-date on the latest vaccinations and research, and is listed on the CDC website as a doctor who has contributed to some of the studies.
He's a very good pediatrician; well-known in this area and has received a number of awards and recognition. He was also my pediatrician when I was a child.
Baby E was much larger than either of my other two babies, at about 9 lbs, in comparison to just over 7 lbs with the other two. She was a week late as opposed to the others who were a week or two early.
I had threatened miscarriages with all my pregnancies, but had only one actual early m/c (my first) out of 4 pregnancies.
By the time Baby E was born (birth story here), I'd been having a lot of contractions as close as 3-5 minutes apart for 6 weeks. Her left fist was next to her right cheek and it was a very hard labor--10 1/2 hours of pushing from transition to delivery. She seemed very healthy and was amazingly social from birth. She is very bright and has hit all the developmental milestones at the expected time or (more often) early.
She stayed at the 98th to 90th percentile for her first 6 months, growing steadily. Just before 6 months we started her on solids.
She stayed at 20 lbs from 6 months to 1 year, and is now somewhere between 21.5 lbs and 23 lbs depending on the scale. I thought she'd lost weight when she weighed 23 lbs at the allergist and 21.5 lbs at the GI specialist, but then later she still weighed 23 lbs on the allergist's scale.
So I'm guessing she still weighs about the same--probably closer to 21 or 22 than to 23 lbs since that's the weight we've gotten more often.
My other two girls have always hovered between the 5th and 25th percentile, so she's still my largest baby even though she's slightly below 50th percentile now. She doesn't look gaunt or skinny at all . . . just less chubby than she used to be. My side of the family are all petite and DH's are large and tall.
So, anyway, all that to say she hasn't gained weight but slow weight gain isn't unusual for our family at this age. My middle child was smaller at age 2 than Baby E is at 15 months.
We see a pediatric allergist and we had one appointment with a GI specialist that we didn't like. Since our insurance allows self-referrals, our ped didn't officially refer us to the allergist--just wrote a couple of names down on a paper towel for me as suggestions and told me to find one myself.
I sort of self-referred to the GI specialist after our ped's nurse gave me his phone number and told me to call and ask him my questions about celiac testing because she didn't know the answer and wasn't willing to ask our doctor, for some strange unknown reason.
The GI's office was so confused about why I'd be calling with a question when we weren't a patient there than I just made an appointment and figured I'd ask him at the appointment. He wanted to do an endoscopy and celiac screening, but wasn't willing to discuss working around Baby E's allergies with what she was given for the procedure.
After that appointment Baby E was so sick that I made an appointment with her ped to rule out other illnesses. Dr. B wasn't in that week, so we saw another ped who felt Baby E's issues were probably GI related and agreed that celiac sounded likely given the difference the week of no gluten. She wrote a referral to a different GI specialist.
The earliest appointment the GI had available was in mid-December. When I called Dr. B's office to ask if that was okay, the nurse talked to him and said he had a friend there and would try to pull some strings to see if he could get us in earlier. That was last week, and we haven't heard anything else about it.
I've been trying to get in with Dr. B, our regular pediatrician, but the nurse talked to him and said he didn't want to see her for at least 2 more weeks since the other doctor had just seen her. So we have an appointment with him a week from tomorrow.
We haven't actually seen Dr. B since September, though I've called with concerns and talked to his nurse a number of times since then.
Both the pediatrician and the allergist seem to be very low-interventionist with a high threshold for concern. That's usually a good thing, but I'm getting a bit frustrated with it at the moment--especially when they keep telling me that Baby E doesn't even need to be seen.
I have taken her to the doctor so many times when she was miserable, and they couldn't find anything wrong with her. I've been told she's perfectly healthy so many times that I'm starting to feel like the boy who cried wolf.
Baby E has had no testing whatsoever other than allergy skin-prick testing and a blood draw for celiac screening, which tested just two elements and did not test for overall IGA deficiency. The tissue transglutaminase IGA-REF was 0.5 and the IGG-REF was 0.6.
The only reason she got that test was that I called and specifically asked the doctor to order a celiac test after she did so well on a week of no gluten and got sick again when we reintroduced it. I asked if he wanted to see her considering how sick she was, but he ordered the test without seeing her at that time.
################
DH has a niece with celiac and my sister can't tolerate any gluten but hasn't been tested for celiac. That along with a number of other things in the family history makes it seem to me like something that should at least be ruled out, given her symptoms. I'd been asking about celiac testing for months, but both the ped and the allergist thought it unecessary when I had asked before.
Baby E did have the PKU testing just after birth, with the drop of blood from the heel.
Other than a vitamin K shot at birth she's had no vaccinations (although our other children are vaccinated) because according to our pediatrician's research the vaccines all seem to have ingredients she's very allergic to (corn and soy derivatives, mainly).
Our pediatrician feels that in her situation the risks outweigh the benefits for vaccinations at this time, but he's working on trying to find some that don't contain her allergens. He stays very up-to-date on the latest vaccinations and research, and is listed on the CDC website as a doctor who has contributed to some of the studies.
He's a very good pediatrician; well-known in this area and has received a number of awards and recognition. He was also my pediatrician when I was a child.
Baby E was much larger than either of my other two babies, at about 9 lbs, in comparison to just over 7 lbs with the other two. She was a week late as opposed to the others who were a week or two early.
I had threatened miscarriages with all my pregnancies, but had only one actual early m/c (my first) out of 4 pregnancies.
By the time Baby E was born (birth story here), I'd been having a lot of contractions as close as 3-5 minutes apart for 6 weeks. Her left fist was next to her right cheek and it was a very hard labor--10 1/2 hours of pushing from transition to delivery. She seemed very healthy and was amazingly social from birth. She is very bright and has hit all the developmental milestones at the expected time or (more often) early.
She stayed at the 98th to 90th percentile for her first 6 months, growing steadily. Just before 6 months we started her on solids.
She stayed at 20 lbs from 6 months to 1 year, and is now somewhere between 21.5 lbs and 23 lbs depending on the scale. I thought she'd lost weight when she weighed 23 lbs at the allergist and 21.5 lbs at the GI specialist, but then later she still weighed 23 lbs on the allergist's scale.
So I'm guessing she still weighs about the same--probably closer to 21 or 22 than to 23 lbs since that's the weight we've gotten more often.
My other two girls have always hovered between the 5th and 25th percentile, so she's still my largest baby even though she's slightly below 50th percentile now. She doesn't look gaunt or skinny at all . . . just less chubby than she used to be. My side of the family are all petite and DH's are large and tall.
So, anyway, all that to say she hasn't gained weight but slow weight gain isn't unusual for our family at this age. My middle child was smaller at age 2 than Baby E is at 15 months.
We see a pediatric allergist and we had one appointment with a GI specialist that we didn't like. Since our insurance allows self-referrals, our ped didn't officially refer us to the allergist--just wrote a couple of names down on a paper towel for me as suggestions and told me to find one myself.
I sort of self-referred to the GI specialist after our ped's nurse gave me his phone number and told me to call and ask him my questions about celiac testing because she didn't know the answer and wasn't willing to ask our doctor, for some strange unknown reason.
The GI's office was so confused about why I'd be calling with a question when we weren't a patient there than I just made an appointment and figured I'd ask him at the appointment. He wanted to do an endoscopy and celiac screening, but wasn't willing to discuss working around Baby E's allergies with what she was given for the procedure.
After that appointment Baby E was so sick that I made an appointment with her ped to rule out other illnesses. Dr. B wasn't in that week, so we saw another ped who felt Baby E's issues were probably GI related and agreed that celiac sounded likely given the difference the week of no gluten. She wrote a referral to a different GI specialist.
The earliest appointment the GI had available was in mid-December. When I called Dr. B's office to ask if that was okay, the nurse talked to him and said he had a friend there and would try to pull some strings to see if he could get us in earlier. That was last week, and we haven't heard anything else about it.
I've been trying to get in with Dr. B, our regular pediatrician, but the nurse talked to him and said he didn't want to see her for at least 2 more weeks since the other doctor had just seen her. So we have an appointment with him a week from tomorrow.
We haven't actually seen Dr. B since September, though I've called with concerns and talked to his nurse a number of times since then.
Both the pediatrician and the allergist seem to be very low-interventionist with a high threshold for concern. That's usually a good thing, but I'm getting a bit frustrated with it at the moment--especially when they keep telling me that Baby E doesn't even need to be seen.
I have taken her to the doctor so many times when she was miserable, and they couldn't find anything wrong with her. I've been told she's perfectly healthy so many times that I'm starting to feel like the boy who cried wolf.
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Posted by purple_kangaroo at 12:45 PM[Permanent link]
8 Comments:
You are NOT the boy who cried wolf. There is definitely something going on with her, though she seems otherwise healthy.
Hugs and kisses.
You know your child better than anyone else. If you feel there's cause for concern, there's cause for concern. I think your data collection will give these nay-sayers a kick in the pants when they take the time to look it over.
I know it's hard when you are faced with people who are telling you that you're overreacting, but it's not the case. Document. Document all those mood swings. Write down when you feel likke she's out of sorts. Maybe the doctor will spot a correlation that you might have missed.
I hope things turn around for you soon. You and Baby E need some rest. It's exhausting!
Sometimes I read yur accounts of baby e making te sign for food and then not eating, or the unexplained screaming, and I think, "yeah yeah, Silas does the exact same thing, sometimes he's just having a bad day."
But you know, that's me with MY baby. I feel like I KNOW it's just a bad mood.
And you KNOW that's it's more than that with E. So I hope this comes across as supportive, cause I wish there was a more I could do to make it easier for you. Just continue to trust yourself, and take care of yourself. Sending hugs and hope.
Thanks, Liz and Klee.
Bridget, I totally know what you mean. It's just that Baby E is probably in a category 3 or above at least 50% of the time. That's what doesn't seem normal to me.
It does sound like massive food allergies. However in your original post you said She would double over, arch her back, throw her body wildly around, and scream and scream and Before another week passed she was screaming constantly and throwing her body around wildly, completely inconsolable. She cried hysterically for almost 3 days, stopping only to stare into space or doze off briefly, or allow herself to be cuddled when she had exhausted herself. Just sitting and doing nothing is very abnormal for her. We slept very little, and when she did sleep she would cry in her sleep and then wake screaming in pain.
My son does these specific things, and after an EKG was diagnosed with subclinical seizures. In other words, things that don't look like seizures, but they do measure as seizure activity in the brain.
He is now 13 years old (and also autistic, so this is his lesser problem) and the seizure activity is controlled with anti-seizure medication. We have to increase the meds as he grows, so there is a fairly familiar pattern with him of increasing episodes (in frequency and length) when he has grown enough to need the medication adjusted.
A classic "seizure" episode for him is crying and upset, that becomes increasingly bad regardless of what we do, to the point where he is crying inconsolably and cannot respond to anything we do or say. Typically he rubs his eyes with both hands.
We try to move him to a place where we can make things as quiet as possible. After some time, it passes and then he switches - sometimes almost instantly - to giggling and laughing.
His neurologist says that seizure activity in the brain is painful, and he certainly does act like his head hurts. We're not sure if the laughing phase is due to the laughing/crying brain areas being close, or if it just such a relief when it passes that he starts giggling.
If this resonates with you at all, ask for an EKG. I wish you the best of luck - it is agonizing when your little one is so obviously suffering and can't tell you what's wrong.
Teri, that's very interesting; thank you. Baby E does sometimes rub her eyes and indicate that her head hurts when she has crying spells.
Seizure-like migraines do run in my family, and several of us started getting them as children--though none as young as Baby E as far as I know.
I came across your blog from a link from Moreena's blog (The wait and the wonder). I read your 15 month summary and this post and I just wanted to express my heartfelt sorrow for Baby E's health challenegs. I am very blessed by your attitude towards this situation. As I see you thank God throughout your blogs I am impressed by the strength and character you show. You are a testimony to the sustaining strength and grace of God. I will pray for you and your little one. May God continue to give you strength, hope and faith no matter what comes your way!
On a side note... I thought the suggestion someone wrote about videotaping Baby E is a good idea. I am absolutely horrified that the pediatrician and other doctor are not JUMPING to see/help her.
Thank you, Sarah. Your note encouraged me this morning. I'm thankful for God's sustaining us.
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