Re: Introduction - Cassidy Hotz - more info about EE

[Guest guest]

and all,

I am happy to share our story and some more facts about EE for those who are

interested. I hope that this isn't too off topic!

Tobit was almost 3 when he was diagnosed. The average age at diagnosis for kids

with EGID is 7, so we were ahead of the curve. As a baby, we knew he was

sensitive to my diet, but we never figured out what I couldn't eat. He had

recurrent bouts with bronchitis and pneumonia. By a year old, he had diagnosed

food, environmental, and drug allergies.

We had seen about 30 Dr.s before he finally was diagnosed, but none of them ever

figured it out. I figured out that he needed to be tested for it by researching

on the internet and talking to moms of EGID kids. Tobit's primary symptom was

screaming in pain, though he did have other symptoms like diarrhea, vomiting,

and weight loss. He literally was screaming for 3-5 hours a day. I had been

trying to get an appointment at Cincinnati Children's Hospital Medical Center

(one of the top EGID clinics in the country) for months and I was at my wits

end. I ended up calling and leaving a message at the Children's Hospital of

Philadelphia CPED (the other top clinic in the country for EGID) one day while

Tobit was screaming. I literally cried and begged for someone to help my son.

Exactly two weeks to the day after that call, we were sitting at CHOP getting a

full allergy/GI workup. We stayed in Philly for two weeks and went home with a

diagnosis and some hope - he had moderate-severe EE and asthma in addition to

his previous diagnoses. He was put on an extreme elimination diet (ten safe

foods) and elemental formula (EO28, which is a type of neocate). It took us

almost a year to stabilize him, a little more to get him completely pain free,

and another two years to wean off formula entirely. He's had several severe

bouts of pneumonia, including a very serious episode in 2007 where we were told

to 'pack like he isn't coming home with you.' He recovered and hasn't been

inpatient since, though keeping on top of his asthma is one of our biggest

concerns.

He now has 45 foods! He is tall for his age and right on target for weight. He

has a reading delay from being so sick in the first three years, but his

progress has recently picked up and it looks likely that he will be on grade

level by the end of the summer. We couldn't be more blessed!

As far as EGID, I have heard researchers say that it is possible that it will

become as common as hayfever. Right now, the suspected incidence is 1 in 10,000.

On our first visit to CHOP (in 2006), they told us that 10 years before, when

they saw their first EGID case, they literally had no idea what EGID was. By

2006, they had 1000 EGID patients, with more calling daily.

The reality for us as lactation consultants is that the incidence of food

allergy is increasing to such a degree that if you haven't seen severe allergy

cases yet, you likely will soon. Scientifically, we don't know very much about

the allergy population in general and the EGID population specifically, which

makes this a challenging population to work with.

I am aware of several cases where babies were allergic to the elemental formulas

and moms needed to either take pancreatic enzymes to safely nurse or had to

drink the formula themselves. These formulas are extremely expensive - $1000 a

month for a toddler - and they are rarely covered by insurance. Families can

easily be overwhelmed by bills. I have also seen many times where the family is

given an inappropriate formula, usually a hydrolysate formula, in place of a

true elemental formula. There are only two options for elemental formulas -

neocate and elecare. It is common for a child to tolerate only one flavor of one

brand, which further complicates the situation.

Lastly, here are some interesting links for more information.

*American Partnership for Eosinophilic Disorders- www.apfed.org

*CURED - Campaign Urging Research for Eosinophilic Disease-

http://www.curedfoundation.org/

*Food Allergy and Anaphylaxis Network- www.foodallergy.org

*Kids with Food Allergies (an online network for families)-

www.kidswithfoodallergies.org

[Guest guest]

I'm sorry my post went through without my signature. I had a little bit of help

from my three year old!

I am happy to discuss allergies or EGID further. It definitely is a topic close

to my heart.

Best wishes,

Cassidy

[Guest guest]

Cassidy,I want to thank you for sharing this with us.  This is the first time I have heard of this disorder.  So very sad.  While watching the videos I needed a box of tissue.  My heart goes out to you and your family and all the families suffering with this horrible disorder.

This is allergies to the extreme.  Why is this happening????BlessingsShari

 

I'm sorry my post went through without my signature. I had a little bit of help from my three year old!

I am happy to discuss allergies or EGID further. It definitely is a topic close to my heart.

Best wishes,

Cassidy

-- ~~~~~~~~~~ Shari Silady ~~~~~~~~~~~~~ " Mothers have as powerful an influence over the welfare of future generations as all other earthly causes combined. "

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Guest guest]

> Cassidy,

> I want to thank you for sharing this with us. This is the first time I have

> heard of this disorder. So very sad. While watching the videos I needed a

> box of tissue.

> My heart goes out to you and your family and all the families suffering with

> this horrible disorder.

> This is allergies to the extreme. Why is this happening????

> Blessings

> Shari

Thank you. We truly are one of the lucky families. Tobit was breastfed until a

month before diagnosis and he has never needed a feeding tube. The disorder

tends to divide into thirds - a third get better over time, a third stay stable

(whatever that is for that child), and a third will deteriorate significantly

over time. Tobit seems to be in the top third, though puberty will have a huge

impact on his disorder's progression.

In March of last year, they published a study in the Nature Genetics that they

believe is responsible for EE. It is called TLSP. Previously, they had diagnosed

approximately 500 gene differences in the esophageal tissue of EE kids.

I believe that it has to do with pollution of our bodies and environment and,

especially, of our food supply. The thing that is really important for us all to

remember is that it isn't just EE that is increasing, it is allergies of all

kinds. That is what is truly alarming. Perhaps these kids are the canaries in

the coal mine?

Cassidy

[Guest guest]

Cassidy,

I have recently worked with a mom whose toddler has EGID and like you, I think

the incidence will rise dramatically. My personal interest is in gut function,

but I think we are being overtaken by the level of environmental damage,

ingestion of GMOs, vaccines, dental mercury, fluoride and other toxins, in

combination with medicalized birth and maternal malnutrition (often due to the

mother's own gut damage). My interest is in healing the gut, but as you know,

some situations are so severe that it is a huge trial. To be honest, it sounds

like you have done amazingly well with your son and I suspect you will have a

lot to offer other parents and your colleagues in years to come.

Tow, IBCLC, France

>

> and all,

>

> I am happy to share our story and some more facts about EE for those who are

interested. I hope that this isn't too off topic!

>

> Tobit was almost 3 when he was diagnosed. The average age at diagnosis for

kids with EGID is 7, so we were ahead of the curve. As a baby, we knew he was

sensitive to my diet, but we never figured out what I couldn't eat. He had

recurrent bouts with bronchitis and pneumonia. By a year old, he had diagnosed

food, environmental, and drug allergies.

>

> We had seen about 30 Dr.s before he finally was diagnosed, but none of them

ever figured it out. I figured out that he needed to be tested for it by

researching on the internet and talking to moms of EGID kids. Tobit's primary

symptom was screaming in pain, though he did have other symptoms like diarrhea,

vomiting, and weight loss. He literally was screaming for 3-5 hours a day. I had

been trying to get an appointment at Cincinnati Children's Hospital Medical

Center (one of the top EGID clinics in the country) for months and I was at my

wits end. I ended up calling and leaving a message at the Children's Hospital of

Philadelphia CPED (the other top clinic in the country for EGID) one day while

Tobit was screaming. I literally cried and begged for someone to help my son.

Exactly two weeks to the day after that call, we were sitting at CHOP getting a

full allergy/GI workup. We stayed in Philly for two weeks and went home with a

diagnosis and some hope - he had moderate-severe EE and asthma in addition to

his previous diagnoses. He was put on an extreme elimination diet (ten safe

foods) and elemental formula (EO28, which is a type of neocate). It took us

almost a year to stabilize him, a little more to get him completely pain free,

and another two years to wean off formula entirely. He's had several severe

bouts of pneumonia, including a very serious episode in 2007 where we were told

to 'pack like he isn't coming home with you.' He recovered and hasn't been

inpatient since, though keeping on top of his asthma is one of our biggest

concerns.

>

> He now has 45 foods! He is tall for his age and right on target for weight. He

has a reading delay from being so sick in the first three years, but his

progress has recently picked up and it looks likely that he will be on grade

level by the end of the summer. We couldn't be more blessed!

>

> As far as EGID, I have heard researchers say that it is possible that it will

become as common as hayfever. Right now, the suspected incidence is 1 in 10,000.

On our first visit to CHOP (in 2006), they told us that 10 years before, when

they saw their first EGID case, they literally had no idea what EGID was. By

2006, they had 1000 EGID patients, with more calling daily.

>

> The reality for us as lactation consultants is that the incidence of food

allergy is increasing to such a degree that if you haven't seen severe allergy

cases yet, you likely will soon. Scientifically, we don't know very much about

the allergy population in general and the EGID population specifically, which

makes this a challenging population to work with.

>

> I am aware of several cases where babies were allergic to the elemental

formulas and moms needed to either take pancreatic enzymes to safely nurse or

had to drink the formula themselves. These formulas are extremely expensive -

$1000 a month for a toddler - and they are rarely covered by insurance. Families

can easily be overwhelmed by bills. I have also seen many times where the family

is given an inappropriate formula, usually a hydrolysate formula, in place of a

true elemental formula. There are only two options for elemental formulas -

neocate and elecare. It is common for a child to tolerate only one flavor of one

brand, which further complicates the situation.

>

> Lastly, here are some interesting links for more information.

> *American Partnership for Eosinophilic Disorders- www.apfed.org

>

> *CURED - Campaign Urging Research for Eosinophilic Disease-

http://www.curedfoundation.org/

>

>

> *Food Allergy and Anaphylaxis Network- www.foodallergy.org

> *Kids with Food Allergies (an online network for families)-

www.kidswithfoodallergies.org

>

[Guest guest]

Thanks for sharing this, Cassidy, and good for us LCs to

know about the disorder.

Fay Bosman, IBCLC

[Guest guest]

Crazy timing, Cassidy...but I have another EGID case now.  Are you willing to be a resource for this mama?  Would you charge a fee?

, I'd love to hear about the mom you worked with and what helped.  You can email me at pugetsoundbreastfeeding@... if you have the time.

> and all, > > I am happy to share our story and some more facts about EE for those who are interested. I hope that this isn't too off topic!

> > Tobit was almost 3 when he was diagnosed. The average age at diagnosis for kids with EGID is 7, so we were ahead of the curve. As a baby, we knew he was sensitive to my diet, but we never figured out what I couldn't eat. He had recurrent bouts with bronchitis and pneumonia. By a year old, he had diagnosed food, environmental, and drug allergies.

> > We had seen about 30 Dr.s before he finally was diagnosed, but none of them ever figured it out. I figured out that he needed to be tested for it by researching on the internet and talking to moms of EGID kids. Tobit's primary symptom was screaming in pain, though he did have other symptoms like diarrhea, vomiting, and weight loss. He literally was screaming for 3-5 hours a day. I had been trying to get an appointment at Cincinnati Children's Hospital Medical Center (one of the top EGID clinics in the country) for months and I was at my wits end. I ended up calling and leaving a message at the Children's Hospital of Philadelphia CPED (the other top clinic in the country for EGID) one day while Tobit was screaming. I literally cried and begged for someone to help my son. Exactly two weeks to the day after that call, we were sitting at CHOP getting a full allergy/GI workup. We stayed in Philly for two weeks and went home with a diagnosis and some hope - he had moderate-severe EE and asthma in addition to his previous diagnoses. He was put on an extreme elimination diet (ten safe foods) and elemental formula (EO28, which is a type of neocate). It took us almost a year to stabilize him, a little more to get him completely pain free, and another two years to wean off formula entirely. He's had several severe bouts of pneumonia, including a very serious episode in 2007 where we were told to 'pack like he isn't coming home with you.' He recovered and hasn't been inpatient since, though keeping on top of his asthma is one of our biggest concerns.

> > He now has 45 foods! He is tall for his age and right on target for weight. He has a reading delay from being so sick in the first three years, but his progress has recently picked up and it looks likely that he will be on grade level by the end of the summer. We couldn't be more blessed!

> > As far as EGID, I have heard researchers say that it is possible that it will become as common as hayfever. Right now, the suspected incidence is 1 in 10,000. On our first visit to CHOP (in 2006), they told us that 10 years before, when they saw their first EGID case, they literally had no idea what EGID was. By 2006, they had 1000 EGID patients, with more calling daily.

> > The reality for us as lactation consultants is that the incidence of food allergy is increasing to such a degree that if you haven't seen severe allergy cases yet, you likely will soon. Scientifically, we don't know very much about the allergy population in general and the EGID population specifically, which makes this a challenging population to work with.

> > I am aware of several cases where babies were allergic to the elemental formulas and moms needed to either take pancreatic enzymes to safely nurse or had to drink the formula themselves. These formulas are extremely expensive - $1000 a month for a toddler - and they are rarely covered by insurance. Families can easily be overwhelmed by bills. I have also seen many times where the family is given an inappropriate formula, usually a hydrolysate formula, in place of a true elemental formula. There are only two options for elemental formulas - neocate and elecare. It is common for a child to tolerate only one flavor of one brand, which further complicates the situation.

> > Lastly, here are some interesting links for more information.> *American Partnership for Eosinophilic Disorders- www.apfed.org>

> *CURED - Campaign Urging Research for Eosinophilic Disease- http://www.curedfoundation.org/>

> > *Food Allergy and Anaphylaxis Network- www.foodallergy.org> *Kids with Food Allergies (an online network for families)- www.kidswithfoodallergies.org

>

[Guest guest]

I'd love to hear more about breastfeeding recommendations for this condition

, do share your professional insights wont you? You must be taking

referrals from somewhere this condition is being diagnosed, Cassidy describes

the average age of diagnosis around 7 and I'm assuming you are working with

infants? How is this diagnosed?

Thanks!

> > and all,

> >

> > I am happy to share our story and some more facts about EE for those who

> are interested. I hope that this isn't too off topic!

> >

> > Tobit was almost 3 when he was diagnosed. The average age at diagnosis for

> kids with EGID is 7, so we were ahead of the curve. As a baby, we knew he

> was sensitive to my diet, but we never figured out what I couldn't eat. He

> had recurrent bouts with bronchitis and pneumonia. By a year old, he had

> diagnosed food, environmental, and drug allergies.

> >

> > We had seen about 30 Dr.s before he finally was diagnosed, but none of

> them ever figured it out.

[Guest guest]

me too! me too! Beebe, M.Ed., IBCLC Lactation Consultant/Postpartum Doula www.second9months.comBreastfeeding Between the Lines: http://second9months.wordpress.com/Facebook: www.facebook.com/thesecond9months--- Subject:

Re: Introduction - Cassidy Hotz - more info about EETo: Date: Tuesday, April 19, 2011, 8:05 PM

I'd love to hear more about breastfeeding recommendations for this condition , do share your professional insights wont you? You must be taking referrals from somewhere this condition is being diagnosed, Cassidy describes the average age of diagnosis around 7 and I'm assuming you are working with infants? How is this diagnosed?

Thanks!

> > and all,

> >

> > I am happy to share our story and some more facts about EE for those who

> are interested. I hope that this isn't too off topic!

> >

> > Tobit was almost 3 when he was diagnosed. The average age at diagnosis for

> kids with EGID is 7, so we were ahead of the curve. As a baby, we knew he

> was sensitive to my diet, but we never figured out what I couldn't eat. He

> had recurrent bouts with bronchitis and pneumonia. By a year old, he had

> diagnosed food, environmental, and drug allergies.

> >

> > We had seen about 30 Dr.s before he finally was diagnosed, but none of

> them ever figured it out.

[Guest guest]

, I'd be happy to be a resource for this family and any others that anyone

comes across in the future. I do not charge a fee for phone/email support. I do

prefer phone calls over emails from families - I find it difficult to address

the myriad concerns in an email! What are your thoughts about this population?

Are you being referred local cases only?

, what is your experience working with this population? I expect you

have a different perspective than this very medicalized approach?

, , and all,

I know of no specific breastfeeding recommendations that work across the board

with EGID kids. Most Dr.s recommend switching to elemental formula immediately.

If the family/Dr. decide to do steroid treatment, then there may be no changes

made to the diet at all. The best clinics attempt dietary control first, usually

an elimination diet that eliminates at least the top 10 allergens and any foods

that the child tests + to (by skin prick or patch testing, sometimes by RAST as

well). If this fails, then they may try a more rigorous elimination diet and

elemental formula as a supplement (we were sent home with instructions to 'pull

anything that you suspect may cause any reaction at all'). If this more rigorous

diet fails, then they will usually go to an elemental only diet (at CHOP, I

*believe* this groups is around 10% of patients, but I am not completely sure of

that number). The options for a breastfeeding mother sometimes include a 'total

elimination diet' that has only a few foods or just a standard elimination diet

with pancreatic enzymes. You have to keep in mind that science knows very little

about this disorder, so even the best clinics tend to fly by the seat of their

pants to some degree. For every actual answer we get from my son's clinic team,

we get 3 or 4 " we just don't know " s. It is also important to note that the

treatment depends largely on the number and location of eosinophils, the overall

condition of the child, and parental preference about diet/treatment. There is a

large degree of trial and error because each case is so unique.

Diagnosis is always by biopsy of the upper and possibly lower GI tract (EGD

and/or colonoscopy with biopsy). The area where the eosinophils are found

denotes the type of EGID (EE is esophagitis, EC is colitis, EGE is

gastroenteritis, EG is gastritis). Each area has a threshold, a minimum # of

eosinophils that must be present to diagnose. For the esophagus, the number is

15 if reflux has been ruled out (the preference is for the child to be actively

treated for reflux at the time of scope to rule out this possibility). The other

areas have higher thresholds and a bit more controversy about what is

normal/pathological. There are no current blood tests or other markers that can

diagnose EGID - biopsy is the only option. The disorder can be patchy, so it is

imperative that multiple biopsies (anywhere from 3-5) be taken per area. For

example, in the esophagus, you'd expect 3-5 biopsies from each of the three

areas (distal, medial, and proximal).

Please keep in mind that I am not a Dr. and that I am speaking from my

experience and those of the families I have known/worked with. Each Dr. has

their own perspective on proper treatment and each case is highly unique.

Cassidy, who is feeling slightly guilty about writing novels all the time!

[Guest guest]

Cassidy,What does  EGID stand for ? Ghislaine Reid, IBCLCLactation ConsultantMontreal, Quebec, Canada De : [mailto: ] De la part de CassidyEnvoyé : 20 avril 2011 17:31À : Objet : Re: Introduction - Cassidy Hotz - more info about EE , I'd be happy to be a resource for this family and any others that anyone comes across in the future. I do not charge a fee for phone/email support. I do prefer phone calls over emails from families - I find it difficult to address the myriad concerns in an email! What are your thoughts about this population? Are you being referred local cases only? , what is your experience working with this population? I expect you have a different perspective than this very medicalized approach?, , and all,I know of no specific breastfeeding recommendations that work across the board with EGID kids. Most Dr.s recommend switching to elemental formula immediately. If the family/Dr. decide to do steroid treatment, then there may be no changes made to the diet at all. The best clinics attempt dietary control first, usually an elimination diet that eliminates at least the top 10 allergens and any foods that the child tests + to (by skin prick or patch testing, sometimes by RAST as well). If this fails, then they may try a more rigorous elimination diet and elemental formula as a supplement (we were sent home with instructions to 'pull anything that you suspect may cause any reaction at all'). If this more rigorous diet fails, then they will usually go to an elemental only diet (at CHOP, I *believe* this groups is around 10% of patients, but I am not completely sure of that number). The options for a breastfeeding mother sometimes include a 'total elimination diet' that has only a few foods or just a standard elimination diet with pancreatic enzymes. You have to keep in mind that science knows very little about this disorder, so even the best clinics tend to fly by the seat of their pants to some degree. For every actual answer we get from my son's clinic team, we get 3 or 4 " we just don't know " s. It is also important to note that the treatment depends largely on the number and location of eosinophils, the overall condition of the child, and parental preference about diet/treatment. There is a large degree of trial and error because each case is so unique.Diagnosis is always by biopsy of the upper and possibly lower GI tract (EGD and/or colonoscopy with biopsy). The area where the eosinophils are found denotes the type of EGID (EE is esophagitis, EC is colitis, EGE is gastroenteritis, EG is gastritis). Each area has a threshold, a minimum # of eosinophils that must be present to diagnose. For the esophagus, the number is 15 if reflux has been ruled out (the preference is for the child to be actively treated for reflux at the time of scope to rule out this possibility). The other areas have higher thresholds and a bit more controversy about what is normal/pathological. There are no current blood tests or other markers that can diagnose EGID - biopsy is the only option. The disorder can be patchy, so it is imperative that multiple biopsies (anywhere from 3-5) be taken per area. For example, in the esophagus, you'd expect 3-5 biopsies from each of the three areas (distal, medial, and proximal). Please keep in mind that I am not a Dr. and that I am speaking from my experience and those of the families I have known/worked with. Each Dr. has their own perspective on proper treatment and each case is highly unique. ;)Cassidy, who is feeling slightly guilty about writing novels all the time!

[Guest guest]

> Cassidy,

>

> What does EGID stand for ?

My apologies for forgetting to list that info! Eosinophil-associated

Gastrointestinal Disorders

Cassidy

[Guest guest]

Cassidy What area do you live in?Shari

 

> Cassidy,

>

> What does EGID stand for ?

My apologies for forgetting to list that info! Eosinophil-associated Gastrointestinal Disorders

Cassidy

-- ~~~~~~~~~~ Shari Silady ~~~~~~~~~~~~~ " Mothers have as powerful an influence over the welfare of future generations as all other earthly causes combined. "

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Guest guest]

Thanks for sharing Cassidy. I’m helping a family whose young son (7 months) is battling with reflux, gas and overall gastrointestinal discomfort. The parents are at wits end.  The mother has eliminated many foods from her diet. The infant had allergy tests that came out negative. The mother has put into place many tips to taper her overactive milk ejection reflex.  The infant is seen by a team of paediatric specialist (ENT, Ped gastro-enterologist) and being treated with Zantac. The improvement to his misery is minimal. I’m trying to help them get help from various specialist.  Today, the mother told me that she found a large anal fistula. I’m afraid their problem may be more than just GERD. Any advice ? Ghislaine Reid, BA (Translation 1981), LLL (1990), IBCLC(2002)Montreal, Quebec, Canada De : [mailto: ] De la part de CassidyEnvoyé : 20 avril 2011 18:43À : Objet : Re: Introduction - Cassidy Hotz - more info about EE > Cassidy,> > What does EGID stand for ?My apologies for forgetting to list that info! Eosinophil-associated Gastrointestinal DisordersCassidy

[Guest guest]

I do not believe babies can ever " just have GERD " . Allergy tests are generally

useless at this age and do not reflect sensitivities. What food has mom

eliminated? Based on what criteria? Has the baby been evaluated for P

tongue-tie? Has he had bodywork? Have any natural remedies been tried? First

thing I do with OAMER is get mom on magnesium. Mom cannot just eliminate

food--she has to heal her gut.

Tow, IBCLC, France

>

> Thanks for sharing Cassidy.

>

>

>

> I'm helping a family whose young son (7 months) is battling with reflux, gas

> and overall gastrointestinal discomfort. The parents are at wits end. The

> mother has eliminated many foods from her diet. The infant had allergy tests

> that came out negative. The mother has put into place many tips to taper her

> overactive milk ejection reflex.

>

>

>

> The infant is seen by a team of paediatric specialist (ENT, Ped

> gastro-enterologist) and being treated with Zantac. The improvement to his

> misery is minimal. I'm trying to help them get help from various specialist.

> Today, the mother told me that she found a large anal fistula. I'm afraid

> their problem may be more than just GERD.

>

>

>

> Any advice ?

>

>

>

> Ghislaine Reid, BA (Translation 1981), LLL (1990), IBCLC(2002)

>

> Montreal, Quebec, Canada

>

>

>

> De : [mailto: ] De la part

> de Cassidy

> Envoyé : 20 avril 2011 18:43

> À :

> Objet : Re: Introduction - Cassidy Hotz - more info about EE

>

>

>

>

>

>

> > Cassidy,

> >

> > What does EGID stand for ?

>

> My apologies for forgetting to list that info! Eosinophil-associated

> Gastrointestinal Disorders

>

> Cassidy

>

[Guest guest]

Doesn’t magnesium increase the

number of stools even to the point of causing diarrhea?

I know it does for me.

Ellen in Florida

First thing I do with OAMER is get mom on magnesium.

Mom cannot just eliminate food--she has to heal her gut.

Tow, IBCLC, France

[Guest guest]

,How does a Mom proceed to heel her gut ? The mother has eliminated dairy, soy, beef and nuts. She herself has allergies to seafood. I will suggest magnesium. Usually is it combined with calcium. Do you recommend calcium and magnesium combined ? Ghislaine De : [mailto: ] De la part de Envoyé : 20 avril 2011 20:59À : Objet : Re: Introduction - Cassidy Hotz - more info about EE I do not believe babies can ever " just have GERD " . Allergy tests are generally useless at this age and do not reflect sensitivities. What food has mom eliminated? Based on what criteria? Has the baby been evaluated for P tongue-tie? Has he had bodywork? Have any natural remedies been tried? First thing I do with OAMER is get mom on magnesium. Mom cannot just eliminate food--she has to heal her gut. Tow, IBCLC, France>> Thanks for sharing Cassidy.> > > > I'm helping a family whose young son (7 months) is battling with reflux, gas> and overall gastrointestinal discomfort. The parents are at wits end. The> mother has eliminated many foods from her diet. The infant had allergy tests> that came out negative. The mother has put into place many tips to taper her> overactive milk ejection reflex. > > > > The infant is seen by a team of paediatric specialist (ENT, Ped> gastro-enterologist) and being treated with Zantac. The improvement to his> misery is minimal. I'm trying to help them get help from various specialist.> Today, the mother told me that she found a large anal fistula. I'm afraid> their problem may be more than just GERD.> > > > Any advice ?> > > > Ghislaine Reid, BA (Translation 1981), LLL (1990), IBCLC(2002)> > Montreal, Quebec, Canada> > > > De : [mailto: ] De la part> de Cassidy> Envoyé : 20 avril 2011 18:43> À : > Objet : Re: Introduction - Cassidy Hotz - more info about EE> > > > > > > > Cassidy,> > > > What does EGID stand for ?> > My apologies for forgetting to list that info! Eosinophil-associated> Gastrointestinal Disorders> > Cassidy>

[Guest guest]

Hi every one Maybe you ask about the health of the family, sometime it could be problem with the air in the house some kind of bacteria, fungus etc… in French we are calling them: moisissure, who are giving those types of health problem. Did the mom read all those little character on each product, because the same product for 500 gr. Have no dairy in it, but the same packaging with 750 gr has some dairy in it. Anne Charest, IBCLCQuébec Montréal De : [mailto: ] De la part de Ghislaine ReidEnvoyé : 20 avril 2011 19:10À : Objet : RE: Re: Introduction - Cassidy Hotz - more info about EE Thanks for sharing Cassidy. I’m helping a family whose young son (7 months) is battling with reflux, gas and overall gastrointestinal discomfort. The parents are at wits end. The mother has eliminated many foods from her diet. The infant had allergy tests that came out negative. The mother has put into place many tips to taper her overactive milk ejection reflex. The infant is seen by a team of paediatric specialist (ENT, Ped gastro-enterologist) and being treated with Zantac. The improvement to his misery is minimal. I’m trying to help them get help from various specialist. Today, the mother told me that she found a large anal fistula. I’m afraid their problem may be more than just GERD. Any advice ? Ghislaine Reid, BA (Translation 1981), LLL (1990), IBCLC(2002)Montreal, Quebec, Canada De : [mailto: ] De la part de CassidyEnvoyé : 20 avril 2011 18:43À : Objet : Re: Introduction - Cassidy Hotz - more info about EE > Cassidy,> > What does EGID stand for ?My apologies for forgetting to list that info! Eosinophil-associated Gastrointestinal DisordersCassidy

[Guest guest]

Cassidy I really appreciate you taking the time to share this! I've never worked

with this condition and being so rare, it's really interesting to read about

your experiences.

I know you took some time to discuss symptoms earlier but I'm having a hard time

locating that exact e-mail exchange......what is helpful for us as IBCLC's to

know.....

Thanks so much!

>

> , I'd be happy to be a resource for this family and any others that

anyone comes across in the future. I do not charge a fee for phone/email

support. I do prefer phone calls over emails from families - I find it difficult

to address the myriad concerns in an email! What are your thoughts about this

population? Are you being referred local cases only?

> , what is your experience working with this population? I expect you

have a different perspective than this very medicalized approach?

>

> , , and all,

> I know of no specific breastfeeding recommendations that work across the board

with EGID kids. Most Dr.s recommend switching to elemental formula immediately.

If the family/Dr. decide to do steroid treatment, then there may be no changes

made to the diet at all. The best clinics attempt dietary control first, usually

an elimination diet that eliminates at least the top 10 allergens and any foods

that the child tests + to (by skin prick or patch testing, sometimes by RAST as

well). If this fails, then they may try a more rigorous elimination diet and

elemental formula as a supplement (we were sent home with instructions to 'pull

anything that you suspect may cause any reaction at all'). If this more rigorous

diet fails, then they will usually go to an elemental only diet (at CHOP, I

*believe* this groups is around 10% of patients, but I am not completely sure of

that number). The options for a breastfeeding mother sometimes include a 'total

elimination diet' that has only a few foods or just a standard elimination diet

with pancreatic enzymes. You have to keep in mind that science knows very little

about this disorder, so even the best clinics tend to fly by the seat of their

pants to some degree. For every actual answer we get from my son's clinic team,

we get 3 or 4 " we just don't know " s.

[Guest guest]

> Cassidy

>

> What area do you live in?

>

> Shari

In Aug., we moved from NW Arkansas to central Oklahoma. Our clinic is in

Philadelphia. In the central US, I know of no GIs who use dietary control for

these disorders. Everyone uses drugs or drug combinations to control symptoms.

Many of the families I know choose to travel to clinics using dietary control.

Cassidy

[Guest guest]

Ellen,

If you take it past gut tolerance, yes. I have moms use Natural Calm and start

slowly, working their way up.

Tow, IBCLC, France

>

> Doesn't magnesium increase the number of stools even to the point of causing

> diarrhea?

>

> I know it does for me.

>

>

>

> Ellen in Florida

>

>

>

>

>

> First thing I do with OAMER is get mom on magnesium. Mom cannot just

> eliminate food--she has to heal her gut.

> Tow, IBCLC, France

>

[Guest guest]

Ghislaine,

No, just the magnesium. Moms are far more likely to be deficient in mag. Gut

healing is a process that takes time and commitment. I am doing a day-long

workshop on the topic in May in NY, so I cannot give you an email-long digest. I

usually work with moms over many months.

But, to begin with, unless she can be muscle-tested, I would suggest she

eliminate gluten (not only wheat--all gluten). I usually also use an intake on

the mother's diet to help me identify potential allergens.

Gut healing can include probiotics, enzymes, detoxing (which can include heavy

metals and requires the support of a holistic doctor and possibly removal of

mercury fillings), liver support, use of homeopathic cells salts and often

supplements and usually a serious dietary overhaul focused on phytonutrients and

healthy fats.

Babies often do very well with slippery elm.

Tow, IBCLC, France

IMO, any baby with GERD, needs to be adjusted.

>

> ,

>

> How does a Mom proceed to heel her gut ? The mother has eliminated dairy,

> soy, beef and nuts. She herself has allergies to seafood.

>

>

>

> I will suggest magnesium. Usually is it combined with calcium. Do you

> recommend calcium and magnesium combined ?

>

>

>

> Ghislaine

>

>

>

>

[Guest guest]

,When you say « a baby with GERD needs to be adjusted” you mean that he needs bodywork such as cranio-sacral therapy ? Ghislaine Reid, BA (Translation 1981), LLL (1990), IBCLC(2002)Montreal, Quebec, Canada De : [mailto: ] De la part de Envoyé : 21 avril 2011 21:56À : Objet : Re: Introduction - Cassidy Hotz - more info about EE Ghislaine,No, just the magnesium. Moms are far more likely to be deficient in mag. Gut healing is a process that takes time and commitment. I am doing a day-long workshop on the topic in May in NY, so I cannot give you an email-long digest. I usually work with moms over many months.But, to begin with, unless she can be muscle-tested, I would suggest she eliminate gluten (not only wheat--all gluten). I usually also use an intake on the mother's diet to help me identify potential allergens. Gut healing can include probiotics, enzymes, detoxing (which can include heavy metals and requires the support of a holistic doctor and possibly removal of mercury fillings), liver support, use of homeopathic cells salts and often supplements and usually a serious dietary overhaul focused on phytonutrients and healthy fats.Babies often do very well with slippery elm. Tow, IBCLC, France IMO, any baby with GERD, needs to be adjusted. >> ,> > How does a Mom proceed to heel her gut ? The mother has eliminated dairy,> soy, beef and nuts. She herself has allergies to seafood.> > > > I will suggest magnesium. Usually is it combined with calcium. Do you> recommend calcium and magnesium combined ?> > > > Ghislaine> > > >