I need help...long.

[W.Jones]

((((((((Mi))))))))

No answers, just a prayer.

[LuckyKitty]

some more and

We're here for you, and it WILL work itself out.

[Screamer]

Yesterday afternoon she finaly had the feeding tube put in. I was so sure they would sedate her for this but they didn't. A had to leave the room and Daddy stuck it out with her.

The night before she was transfered to the other side of the hosp around 8:30 pm. Mom and Dad were instructed to see her into bed, kiss her good night and leave. My DS was so distraught when he called me he just said , "MOM!" and couldn't say another word. I just told him when he was ready to talk to me I'd be here to listen.

I finally talked to him at 7:30 last night. He was a whole different human. He sounded like a big weight was lifted from him. While they were visiting, (only 4 hours a day now) masses of Dr's came and went as they did preliminaries. DS says more than 30 Dr's are assigned to DGD.

One Dr. came to talk to DGD. In the middle of all kinds of questions the Dr asked her why she dosen't want to eat. she finally said to him, "I'm scared."

So he asked what are you scared of and she said "Thunder". At this point they will be working on everything from A to Z on why a child would be scared of thunder and leave her to not eat. All this started on New years Day. All the craziness associated with NYD and the grand finalle is - massive fire works going off at midnight. DGD just went down from there.

Right now that's all they are working on until she opens up to something else. It's a start.

She gets fed 2 teaspoons of Pedisure per hour for now. She lost 2.5 lbs body weight.

DS and DDIL are sounding way more optimistic. They are relieved to have a plan. They are looking into specialist hosp that deal with this situation - pediactric food disorder, of which there are 2 in the nation. One in Milwaukee, WI and Baltimore, MD.

When they were all dealing with the medical side of the hosp, DGD was assigned a specialist in unusual cases. A true Dr. House. Gruff, rough and to the point, you either do as I say or else kind of guy. This did not sit well with DDIL. In the end this Dr. House knew what he was talking about and he was right in all he diagnosed. He stopped in to see DS and DGD for a moment yesterday. He told DS, "I havent' forgotten about you and I'm still working on her case. I have some ideas and we will talk about them later."

This place is amazing.

Thanks for reading, most of all thanks for all your kind words, thoughts, and prayers. I'm letting DS know about everyone here.

Mi *encouraged*

[dmk825]

Mimi - so glad that you all have a little more hope now. Praying that she will soon be her old self.

[Lisa M]

I've got chill bumps of hope reading this! If she does have the propensity for anxiety disorders, sensory intergration disorders, etc. then the thunder sound of fireworks could have set something off. At least she said something that gives them something to go on! The Baltimore Hospital must be the one that was in the link I posted a few days ago. Great that you have choices if it comes to that!
Hang in there Grandma. I feel so badly for your son having to go through this pain but sounds like they have good reason to feel hopeful!

[averyjenn]

Oh Mimi!! Thank God we have some news in a positive direction!! Praying still for your DGD.

And LOL on the House reference!

[Stormyskies]

I was watching Mystery Diagnosis last night and they had a child on there who didn't want to eat. At the sight of food, he would vomit. He would only eat peanut butter and crackers and maybe a few other things, but that was all. They would have to put a shield up at the dinner table so he would not see anyone else's food. Anyway, I thought of your daughter when I saw this show and I thought I would just mention it. The name was Common Variable Immunodeficiency...CVID. Here's an artile I found on it, but it doesn't mention mention anything about someone not wanting to eat. The child on the show was very young when all this was going on with him and he is now fine. Just thought it was worth mentioning. I hope you find out what's wrong with your daughter very soon.

IDF PATIENT/FAMILY HANDBOOK | CHAPTER III

Common Variable Immunodeficiency




Common Variable Immunodeficiency is a disorder characterized by low levels of serum immunoglobulins (antibodies) and an increased susceptibility to infections. The exact cause of the low levels of serum immunoglobulins is not known. It is a relatively common form of immunodeficiency, hence, the word “common”. The degree and type of deficiency of serum immunoglobulins, and the clinical course, varies from patient to patient, hence, the word “variable.”

DEFINITION: Common Variable Immunodeficiency (CVID) is a disorder characterized by low levels of serum immunoglobulins (antibodies) and an increased susceptibility to infections. The exact cause of the low levels of serum immunoglobulins is usually not known. It is a relatively common form of immunodeficiency, hence, the word “common”. The degree and type of deficiency of serum immunoglobulins, and also the clinical course, also varies from patient to patient, hence, the word “variable.” In some patients there is a decrease in both IgG and IgA; in others, all three major types (IgG, IgA and IgM) of immunoglobulins may be decreased. The clinical signs and symptoms also vary from severe to mild. Frequent and unusual infections may occur first during early childhood, adolescence or adult life. In the majority of patients, however, the diagnosis is not made until the 3rd or 4th decade of life.

Because of the relatively late onset of symptoms and diagnosis, other names that have been used for this disorder include “acquired” agammaglobulinemia, “adult onset” agammaglobulinemia, or “late onset” hypogammaglobulinemia. The term “acquired immunodeficiency” is now used to refer to a syndrome caused by the AIDS virus (HIV virus) and therefore should not be used for individuals with Common Variable Immunodeficiency (CVID). These two disorders are very different.

Most individuals with CVID present first with recurrent bacterial infections and, when tested, have markedly decreased serum immunoglobulin levels and impaired antibody responses. The causes of CVID are largely unknown. Studies on the cells of the immune system in patients with CVID have revealed a spectrum of lymphocyte abnormalities. Most patients appear to have normal numbers of B-lymphocytes, but they fail to undergo normal maturation into plasma cells capable of making the different types of immunoglobulins and antibodies. Other patients lack the helper T-lymphocytes necessary for a normal antibody response. A third group of patients have excessive numbers of cytotoxic T-lymphocytes.

CLINICAL PRESENTATION: Both males and females may have Common Variable Immunodeficiency (CVID). Although some patients have symptoms in the first few years of life, many patients may not develop symptoms until the second or third decade, or later.

The presenting features of most patients with CVID are recurrent infections involving the ears, sinuses, nose, bronchi and lungs. When the lung infections are severe and occur repeatedly, permanent damage to the bronchial tree may occur and a chronic condition of the bronchi (breathing tubes) develops causing widening and scarring of these structures. This condition is known as bronchiectasis. The organisms commonly found in these infections are bacteria that are widespread in the population and that often cause pneumonia ( Haemophilus influenzae, pneumococci, and staphylococci). The purpose of treatment of the lung infections is to prevent their recurrence and the accompanying chronic damage to lung tissue. Regular cough in the morning that produces yellow or green sputum suggests the presence of chronic infection or bronchiectasis (widening, scarring and inflammation of the bronchi).

Patients with CVID may also develop enlarged lymph nodes in the neck, the chest or abdomen. The specific cause is unknown, but enlarged lymph nodes may be driven by infection, immune dysregulation, or both. Similarly, enlargement of the spleen is relatively common as is enlargement of collections of lymphocytes in the walls of the intestine called Peyer's patches.

Some patients with CVID who may not be receiving optimal gamma globulin therapy may also develop a painful inflammation of one or more joints. This condition is called polyarthritis. Although in the majority of the cases, the joint fluid does not contain bacteria, in order to be certain that the arthritis is not caused by a treatable infection, the joint fluid may be removed by needle aspiration and studied for the presence of bacteria. In some instances, a bacterium called Mycoplasma may be the cause and can be difficult to diagnose. The typical arthritis associated with CVID may involve the larger joints such as knees, ankles, elbows and wrists. The smaller joints (i.e. the finger joints) are rarely affected. Symptoms of joint inflammation usually disappear with adequate gamma globulin therapy and appropriate antibiotics. In some patients, however, arthritis may occur even when the patient is receiving adequate gamma globulin replacement.

Some patients with CVID report gastrointestinal complaints such as abdominal pain, bloating, nausea, vomiting, diarrhea and weight loss. Careful evaluation of the digestive organs may reveal malabsorption of fat and certain sugars. If a small sample (biopsy) of the bowel mucosa is obtained, characteristic changes may be seen. These changes are helpful in diagnosing the problem and treating it. In some patients with digestive problems, a small parasite called Giardia lambliahas been identified in the biopsies and in the stool samples. Eradication of these parasites by medication may eliminate the gastrointestinal symptoms.

Although patients with CVID have a depressed antibody response and low levels of gamma globulin in their blood (hypogammaglobulinemia), some of the antibodies produced by these patients may attack their own tissues (autoantibodies). These autoantibodies may attack and destroy blood cells (e.g. red cells, white cells or platelets), or they may cause endocrine disorders, such as thyroid disease or diabetes.

Finally, patients with CVID may have an increased risk of cancer, especially cancer of the lymphoid system, skin and gastrointestinal tract.

Patients with CVID do not have physical abnormalities unless complications have developed. Some patients with CVID may have an enlarged spleen and lymph nodes. If chronic lung disease has developed, the patient may have a reduced ability to exercise and decreased vital capacity (the maximum amount of air that can be taken into the lung voluntarily). Involvement of the gastrointestinal tract may in some instances, interfere with normal growth in children or lead to weight loss in adults.

DIAGNOSIS: Common Variable Immunodeficiency (CVID) is suspected in children and adults who have a history of recurrent infections involving ears, sinuses, bronchi, and lungs. The diagnosis is confirmed by finding a low level of serum immunoglobulins, usually including IgG, IgA and IgM. The latter two immunoglobulin classes may be completely absent in some patients or normal in others. Patients who have received complete immunizations against polio, measles, diphtheria and tetanus will usually have very low or absent antibody levels to one or more of these vaccines. Immunization with other vaccines, such as the pneumococcal vaccine, is done to define the degree of immunodeficiency. In some instances, these tests help the physician to decide if the patient will benefit from gamma globulin treatment.

The number of T-lymphocytes may also be determined and their function tested in samples of blood. Normally, approximately 5-10% of the blood lymphocytes are B-lymphocytes and 60-70% are T-lymphocytes. With special laboratory techniques, it is possible to determine if B-lymphocytes produce antibody in a test tube (tissue culture), and if T-lymphocytes help the B-lymphocytes in this task.

INHERITANCE: Because of the non-uniform nature of Common Variable Immunodeficiency (CVID), a clear pattern of inheritance has not been defined. In some instances, however, more than one family member is found to be deficient in one or more types of immunoglobulins. For example, it is not unusual for one family member to have CVID while another may have selective IgA deficiency (see chapter on Selective IgA Deficiency).

TREATMENT: The treatment of Common Variable Immunodeficiency (CVID) is similar to that of other disorders characterized by low levels of serum immunoglobulins. In the absence of a significant T-lymphocyte defect, gamma globulin treatment almost always brings improvement of symptoms. Gamma globulin is extracted from a large pool of human plasma consisting mostly of IgG and containing all the important antibodies present in the normal population (see chapter on Specific Medical Therapy). Patients with chronic sinusitis or chronic lung disease may require long term treatment with broad-spectrum antibiotics. If mycoplasma or chlamydia infections are suspected, antibiotics specific for those organisms may be indicated.

If bronchiectasis has developed, physical therapy and daily postural drainage are needed to remove the secretions from the lungs and bronchi. Patients with gastrointestinal symptoms and malabsorption are evaluated for the presence of Giardia lamblia, rotavirus and a variety of other gastrointestinal infections. Most patients with immunodeficiency and arthritis respond favorably to treatment with gamma globulin.

EXPECTATIONS: Gamma globulin replacement combined with antibiotic therapy have greatly improved the outlook of patients with Common Variable Immunodeficiency (CVID). The aim of the treatment is to keep the patient free of infections and to prevent the development of chronic lung disease. The outlook for patients with CVID depends on how much damage has occurred to their lungs or other organs before diagnosis and treatment with gamma globulin therapy and how successfully infections can be prevented in the future by using gamma globulin and antibiotic therapy.

[AFwife]

I pray she gets better and I know this is going to sound cruel, but has anyone told her, If you don't eat you are going to die, to see if that makes her snap out of it?

Hope she gets better, poor baby.

HUGS!

[walkingwoman]

and for you and your family.

[Lil Donna]

I find this situation totally amazing. I'm so sorry your DGD is going through this. I never would think a child could go with out food for so long. Did someone say something to her about the fireworks- like maybe they fell in her food. Maybe they were so loud that is shook her whole internal/nervous system. Could one of the fireworks have burned her? Did she have sparklers?

We thought it was hilarious at the time but now I'm thinking it was pretty stupid. When my oldest dd was 3 we took her to see fireworks. We were very close and they were LOUD and bright. My dd started to cry and actually ran away from us. (The first time ever) She said she wanted to leave and ran towards the car. We ended up sitting in the car and watching the fireworks but it really truly scared her. WOW! to think that if we didn't leave when we did she could've experienced what your DGD did.

I hope this all gets resolved soon and that your DGD can get on with her "little girl" life.

[mmam5]

To you and your family... Glad you are with some dr's that are persuing all leads and keeping on top of things! Please keep us up to date as things progress!!!

Couldn't imagine my babies going thru all this...

[handbells]

Please keep us updated on her progress!

[Screamer]

Lisa , the Baltimore hosp is the #1 for treating eating disorders. If nothing else works here this is their next option.

Stormy, that is a fabulous article. Only thing is she won't eat anything. When she was slowing down with her eating right after NYD she would not throw up either. One of these articles is going to have the answer. We just have to find it.

The fireworks thing: in their hometown fireworks are legal (Thank you Governor of Indiana). You can even have 1/4 sticks. This is what the neighbors had that night. I would have been scared too. Instead of getting up to see Mom or Dad we are sure she just hid under the covers and waited it out. I'm so positive this is a big piece of the puzzle.

AF wife they have tried telling her that if she dosen't eat, she couldn't go home. She said, 'ok'. I see now she is safe here. No big noises. Now why won't she eat then?

I don't know if they tried the 'you will die' angle. I don't see how a 3 yo would know what that truly means like me or you do. But I'm not dissing any angle at this point.

Mi <---- to all

[AFwife]

Well I hope she gets better soon.

[Nady]

Originally Posted by Screamer

AF wife they have tried telling her that if she dosen't eat, she couldn't go home. She said, 'ok'. I see now she is safe here. No big noises. Now why won't she eat then?

Maybe because then she'll have to go home?


~~~N

[AFwife]

Poor baby girl.

I just wanna hug her and make her fears go away.

[walkthebeach]

Wow. I'm another one who didn't notice this thread until it was made a sticky. Mercy! Mimi, my daughter, who is now 27, was always such a scaredy-cat. She hated, hated fireworks when she was a little tyke; age 3 to be exact. She was also scared of noisy motorcycles, but fireworks and thunder she especially hated. It never escalated to refusing food. But, it's apparent here that your grand daughter has been traumatized by something. I'm sure the doctors will get to the bottom of it, but it seems sss lowly.... I agree with Whippetlady. I would suggest hynotism by a pediatric specialist. That will tease it out of her, the Reasons behind this refusal to eat. My thoughts and prayers are with you, your dear gd and your family.

[BluOrchid2]

Wow. So sorry to hear about your DGD. I can't imagine. I'm so glad that she's on the feeding tube now, and I hope she'll soon be able to eat on her own.

[chassiepooh]

Thanks for giving us an update, I've been thinking about y'all. And praying for a ray of hope.

Continued prayers.

[walkingwoman]

Continued prayers

[senorina]

letting you know I'm following this and thinking of you.

[katrun]

Prayers and hope they will find what it is that has you DGD in such a state.

[Heab]

[rootbeer]

[SunaBee]

Thinking of you

[Starrynite]

I hope they find the answer, soon. Sending positive thoughts.

[Screamer]

Sunday update.

The Dr's have reinserted her IV because her electrolyes have dropped. She is tolorating the feeding tube and is not throwing up any that is fed to her. She still won't eat. April says the tube is 1/8th of an inch and looks like a string of spagetti. I still imagine she is uncomfortable.

DGD went to the 'craft room' in the AM and had some fun with the other children. Dr's are satisified that she can interact with kids her own age and can follow direction in a controlled setting.

I spoke to DS about the hypnotism. This is one of the first ideas that DS even thought of and discussed it with the Drs at Children's. They said that it wouldn't help in children this young. I tend to disagree and believe that it would tease her deeper thoughts out of her too. At the same time put some thoughts of eating back into her.

One of the ideas being discussed is to take her home, with her feeding tube and IV along with a home care type person, and see how DGD does back in her own enviroment. The Dr's believe she is very comfortable with her surroundings (quiet, calm etc) and as long as she is not eating she can stay in her quiet room. A few of you have suggested this and I agree with it. So does DS and DDIL.

That's about it for today. I get to go up to see her next Sat or Sunday. I'd get to go today but I'm still down with the stomach flu and I don't need to be sharing it with her or anyone else.

Thanks for your continued ideas prayers and well wishes. I let DS and DGD know everyday how complete strangers (to them, not me ) care and are putting lots of thought into this. They are moved by it.

Mi