anorexia

[Tamistwins]

Hi!

My daughter will be 8 in 3 months and she only weighs 40 pounds. She barely eats a thing. She goes to school with out eating. Sometimes I can get a bite or two in her mouth, today it was one bite and her whining she's not hungry. Then, when she comes home from school I see that she hasn't eaten her lunch. We haven't been officially diagnosed but she is so thin and it is like a chore for her to eat. Any suggestions on what to do? what have your doctors said for those of u with official diagnosis?

[Doug]

My dd has a hard time eating also

You need to call Dr.K or Dr.B or someone

that will get you on the right track

to see if she has PANDAS and what you need

to start doing about it.

Having a hard time eating is very common

with PANDAS.

We have been to see Dr.k twice for IVIG

and he is very good, and I have been told that Dr.B is also

very good.

The first step is the hardest.. but it needs to be done

Tracie.

[Tamistwins]

My dd has a hard time eating also

You need to call Dr.K or Dr.B or someone

that will get you on the right track

to see if she has PANDAS and what you need

to start doing about it.

Having a hard time eating is very common

with PANDAS.

We have been to see Dr.k twice for IVIG

and he is very good, and I have been told that Dr.B is also

very good.

The first step is the hardest.. but it needs to be done

Tracie.

Thank you Tracie,

We have been to Dr. B and had Ivig 2x and she is on antibiotics. Her eating has declined enormously. I am worried that she tasks so much medicine and barely eats. How is your daughter now?

[sf_mom]

If I remember correctly both your twins have done IVIG and you have seen Scott Smith. There are other chronic infections that have been known to cause anorexia. I know you are on the cusp of seeing Dr. Jones but this is what he says about Babesia so I think it is important to discuss your daughter's weight with him.

 

"The parasite that causes Babesiosis destroys red blood cells and causes a malaria-like illness which can be fatal. Symptoms include fever, chills, sweats, muscle pains, breathing difficulties, headaches and malaise. Patients may also experience episodes of depression, dizziness, vomiting, bleeding tendencies, acute respiratory distress syndrome, dark colored urine, anemia, swollen spleen, congestive heart failure, renal failure, petechial rash, bruising, jaundice, pulmonary edema, myocardial infarction, anorexia, evidence of shock and encephalopathy. Symptoms may range from mild to severe. Babesiosis symptoms can be similar to malaria symptoms."

 

I would also do comprehensive stool samples on your daughter via Scott Smith if you haven't already. You'll be able to look at absorption, good bacteria... etc. For our daughter who was extremely under weight at one (she was essentially falling off the weight chart) we found very little absorption and digestive enzymes are recommended. We also do IgG powder, hd probiotics and kefir smoothies. She is still very thin but now in the 27% which is a huge turn around for her.

 

All three of my children are suspected to have Babesia and our older son too has made a complete turn around with treatment in both height and weight.... now in 96% for his age in both categories. He grew 2 1/2 inches and gained 8 pounds in less than 6 months.

 

Hang in there.... as you know, I've believed you've needed to investigate other infecting agents for you kids and I am so happy you are seeing Dr. J and took the appointment. Good Luck

Edited February 17, 2011 by SF Mom

[dcmom]

Tami

 

Both of my girls have had eating issues with pandas. Ultimately remmission due to medical intervention was the answer.

 

In the meantime, we adopted strategies to get in the calories:

 

keeping healthy tasty mini bite type snacks on the table at all times

 

variety variety variety- never know what will appeal

 

dinner in front of the tv helped - with plates with a variety of small bites

 

daily smoothies with Kefir, frozen fruit, scoop of sorbet, ice and vanilla protein powder

 

letting child cook/ bake with you- sometimes makes them want to eat it

 

good luck- this can get scary pretty quickly. We had double luck with steroids- improving all pandas symptoms, and increasing (even temporarily) antibiotics.

[EAMom]

Does your dd have any distorted body image or other OCD features (eg fear of choking) that seem to be the cause of the anorexia?

 

Has she always been like this? how long? Or was she normal once and suddenly fell off the growth charts?

 

Are there particular groups of foods that she won't eat?

 

Does she complain of stomach pain? Could it be GI related? I agree with SFMOm that it makes sense to find other causes of the anorexia.

 

What other PANDAS symptoms that resolved (or didn't) with IVIG/antibiotics?

[Tamistwins]

My dd has a hard time eating also

You need to call Dr.K or Dr.B or someone

that will get you on the right track

to see if she has PANDAS and what you need

to start doing about it.

Having a hard time eating is very common

with PANDAS.

We have been to see Dr.k twice for IVIG

and he is very good, and I have been told that Dr.B is also

very good.

The first step is the hardest.. but it needs to be done

Tracie.

Thank you Tracie,

We have been to Dr. B and had Ivig 2x and she is on antibiotics. Her eating has declined enormously. I am worried that she tasks so much medicine and barely eats. How is your daughter now?

[Tamistwins]

If I remember correctly both your twins have done IVIG and you have seen Scott Smith. There are other chronic infections that have been known to cause anorexia. I know you are on the cusp of seeing Dr. Jones but this is what he says about Babesia so I think it is important to discuss your daughter's weight with him.

 

"The parasite that causes Babesiosis destroys red blood cells and causes a malaria-like illness which can be fatal. Symptoms include fever, chills, sweats, muscle pains, breathing difficulties, headaches and malaise. Patients may also experience episodes of depression, dizziness, vomiting, bleeding tendencies, acute respiratory distress syndrome, dark colored urine, anemia, swollen spleen, congestive heart failure, renal failure, petechial rash, bruising, jaundice, pulmonary edema, myocardial infarction, anorexia, evidence of shock and encephalopathy. Symptoms may range from mild to severe. Babesiosis symptoms can be similar to malaria symptoms."

 

I would also do comprehensive stool samples on your daughter via Scott Smith if you haven't already. You'll be able to look at absorption, good bacteria... etc. For our daughter who was extremely under weight at one (she was essentially falling off the weight chart) we found very little absorption and digestive enzymes are recommended. We also do IgG powder, hd probiotics and kefir smoothies. She is still very thin but now in the 27% which is a huge turn around for her.

 

All three of my children are suspected to have Babesia and our older son too has made a complete turn around with treatment in both height and weight.... now in 96% for his age in both categories. He grew 2 1/2 inches and gained 8 pounds in less than 6 months.

 

Hang in there.... as you know, I've believed you've needed to investigate other infecting agents for you kids and I am so happy you are seeing Dr. J and took the appointment. Good Luck

Thank you for all that info... From that description it dosent sound like she has babesia. I will discuss with dr. But first appointment is for my son. I was thinking that she needs to go to hospital for iv since she barely eats. I'm glad your children are doing better. My daughter used to be a good eater she liked eating adult food. She mostly liked dinners. It's never ending!

[Tamistwins]

Tami

 

Both of my girls have had eating issues with pandas. Ultimately remmission due to medical intervention was the answer.

 

In the meantime, we adopted strategies to get in the calories:

 

keeping healthy tasty mini bite type snacks on the table at all times

 

variety variety variety- never know what will appeal

 

dinner in front of the tv helped - with plates with a variety of small bites

 

daily smoothies with Kefir, frozen fruit, scoop of sorbet, ice and vanilla protein powder

 

letting child cook/ bake with you- sometimes makes them want to eat it

 

good luck- this can get scary pretty quickly. We had double luck with steroids- improving all pandas symptoms, and increasing (even temporarily) antibiotics.

Thank you for those suggestions... She does love fruit and shakes... Not a bad idea adding protein powder what kind do u use. I heard kefir mentioned on this board what exactly its it.

[sf_mom]

Please do mention to Dr. J... You might only have one presenting symptom, can migrate and cyclical in nature. I only have two presenting symptoms which is the maroon like freckles (6 or 7 of them) and deep bone pain in thighs (the deep bone pain only cropped up after treatment). Dr. J has a picture of the freckles on his website www.DRJONESKIDS.org

 

-Wendy

[Tamistwins]

Please do mention to Dr. J... You might only have one presenting symptom, can migrate and cyclical in nature. I only have two presenting symptoms which is the maroon like freckles (6 or 7 of them) and deep bone pain in thighs (the deep bone pain only cropped up after treatment). Dr. J has a picture of the freckles on his website www.DRJONESKIDS.org

 

-Wendy

Thank you Wendy I think he wants to focus on one child at a time but I will mention it to him since we did igenex on both children.

Ty, Tami

[Tamistwins]

Does your dd have any distorted body image or other OCD features (eg fear of choking) that seem to be the cause of the anorexia?

 

Has she always been like this? how long? Or was she normal once and suddenly fell off the growth charts?

 

Are there particular groups of foods that she won't eat?

 

Does she complain of stomach pain? Could it be GI related? I agree with SFMOm that it makes sense to find other causes of the anorexia.

 

What other PANDAS symptoms that resolved (or didn't) with IVIG/antibiotics?

Hi Ea mom, she hasn't always been Like this, none of my children are great eaters but if there was something she really liked she would eat well and now even dinner which was her favorite meal is barely touched. I think she is too young so I don't see evidence yet of distorted body image. She does complain of stomach hurting but i think related to anxiety. We did give her vsncomycin a while back. I don't know about falling off the charts because nothing was discussed with pediatrician. The ped we have seen hasn't seen her from infancy and I'm not crazy about any pediatrician. Since all kids have scripts for antibiotic I don't really see a point going to them.

[EAMom]

PANDAS kids with anorexia can have distorted body image very young (mine was 7.5 years).

 

Did she have other symptoms that were helped with abs and IVIG?

[philamom]

Is she having any difficulty with swallowing and/or GERD like symptoms (heartburn)? Is she complaining of the taste being distorted? Is she complaining of the smell of the food?

[dcmom]

My dd, 5 at the time also became a restrictive eater with pandas. It was not fear of choking or getting fat. She would be hungry sometimes, but could not find anything palatable. All of her old favorites were not appetizing. The whole situation brought her a lot of stress, it was difficult. This issue resolve mostly with abx and steroids- but she still didn't go back to eating her favorites until she has pex.