Anemia….BF/Formla ? AGAIN.

[Anonymous]

Thank you all for your responses!

Today I asked for a test for celiacs and allergy testing. The doctor agreed to both. We do the blood test for celiacs on Monday and I have a referral to a pediatric allergist. He did say however that both sets of testing were definitely less accurate at this age.

As far as scoping etc. I will have to ask the ped. GI. (again). I have definitely been thinking about changing doctors. We are in SE Idaho. The referral clinic for here is Primary Children’s hospital in Salt Lake City which is where we have been going. It is three hours away. Boise is four hours away and there is a pediatric GI there at St. Lukes that I could possibly try (it is a much smaller clinic than the one at Primary Children’s).

I have to say though that I thought long and hard about it at first as our doctor would have referred us to either but I felt much better about Primary Children’s. Beyond that, if I were looking for a larger metropolitan area that might have better doctors, I guess I would have to look at Seattle area, Portland area, or maybe Tri-Cities or Spokane. That would be a serious trek. I think it is about 13 hours drive to Seattle. I do have family I could stay with though.

My difficulty is that if we are going to make a switch, I really need to KNOW that I am headed somewhere likely to be better. The ped. GI we are going to now is very well respected. I don’t have the time or the money to be doing trial and error right now. If you have heard of someone wonderful in the Northwest or Utah I would love to hear about it!

Thanks,

Kara

[Anonymous]

I will see what i can find out for you

[Anonymous]

kara, where are you? i am in southern idaho—burley to be exact.

we go to dr. henry thompson in boise and i practically worship the ground he walks on!

my youngest, sylvia,was failure to thrive, anemic, refluxing almost 25% of the time and her esophagus was getting ulcerated. we discovered she was not gaining weight before we would have even been able to get in to primary children’s. sylvia had a fundoplication when she was almost 10 months old. i also have fifteen year old twins with reflux that dr. thompson treats. also, my twins and my 11 year old have celiac disease—-once again, dr. thompson is the one we take them to for this. one of my twins also has an eating disorder—-dr. thompson was the one to first suspect this. he hospitalized her at st. lukes for 2 weeks and then sent her on to seattle children’s.

another thing i really like about this doc is that he is almost the same age as me and his children are the same age as my youngest kids—–he has twins that are just 4 months younger than sylvia. let me know if you want a phone number—-in fact, we are seeing him tomorrow, i can get you a card—–i am assuming you must live somewhere near me?

kevieb2006-9-14 20:30:48

[Anonymous]

Hi Christine,

Thanks for writing! We are in Blackfoot. I would love it if you would get me a card or even just his information would be great. Have you had any experience, comparison wise, between any of the ped. GI’s at primary Children’s and Dr. Thompson? Just curious, how did he approach the celiacs? Besides the celiacs, have you had any allergy issues and how has he handled them?

Thanks!

Kara

[Anonymous]

kara, send me an e-mail and i will get the info to you.

kevheiner@msn.com

just reading back over your posts this is what i gather—-sounds to me like your little one has had some significant weight loss if he has gone from the 50% to the 5%. it could just be genetics, but it looks fairly suspicious with all of his other problems.

your son might get more relief with prevacid—–alot of people have had to “move on” to prevacid from prilosec and zegerid is the same med as prilosec.

the only personal experience i have had with primary children’s is that they would not even open their books to make me an appt. when we first contacted them. i was put on a list and told our appt. would likely be at the end of may when they did make it——–2 years later i am still waiting for them to call with our appt.—–it’s a good thing i didn’t wait for them because sylvia was in a pretty bad way.

a friend of mine took her son to primary children’s and felt like they were pretty impersonal and when her son had a scope she felt like it was more assembly line style. she later took her son to the doc we see in boise and was thrilled with him. she eventually took her son back east to a specialized clinic and he was diagnosed with FPIES. i have heard the “impersonal” comment about primary children’s several times from other peoples experiences—-however, i have also heard that they are very good.

another thing i really like about the doc in boise is that he is really good about the fact that we live so far away and is very willing to do what we can by phone. he also has phone hours every morning, so if you call and leave a message, he will call you back himself—-you don’t have to send messages back and forth through the nurse.

when we first suspected celiac in one of the girls,(an allergist had run the screen) i called him and even though he had not seen her before, because he already knew us, he scheduled her endoscopy the next week and met her right before he did the endo—-he also let me stay in and watch the endo.—-but i think that was because she was a little older. he did not scope my 11 year old—-i guess when 3 kids in one family have positive blood work for celiac, it becomes a no brainer, so he skipped the scope on her.

he gave us a folder with celiac info in it and a list of other parents of celiac children. it lists the parent name and phone number, what town they live in, the ages of their celiac child/children and if the child is male or female. there is also a celiac kids support group that has been started up by some of the parents. we haven’t been to an activity yet, but we plan to some time.

if you suspect celiac, don’t take him off gluten before testing for it.

[Anonymous]

I was just reading an article and found something about anemia. It said that chronic inflammation of the esophagus can cause chronic blood loss and anemia. If you email me andreaksullivan@sbcglobal.net I can email it to you.

[Anonymous]

sylvia was anemic and the doc said it told him that she probably had a pretty good case of esophagitis. after she had her fundoplication and her esophagus healed, her anemia went away without ever having to give her an iron supplement.

[Anonymous]

Well, I would sure like to know what is contributing to the anemia. We saw another doctor in the same clinic yesterday with my daughter and he saw David’s chart (it was tucked in my daughters) and he did a double take at the iron numbers and said “WOW! that’s really low!” He was immediately concerned to make sure steps were being taken to help. His approach sounded about the same though….formula, solid food and iron suppliment.

I made an appointment with Christine’s ped. GI in Boise. Interestingly enough, they scheduled David Oct. 11th. When I made his next appointment at Primary Children’s a week or two ago, they couldn’t get me in until late November and that was with the nurse practitioner. Dr. Thompson’s office also said that if they received his record’s soon enough that they could probably get him in sooner so I’m working on getting those to them quickly.

We had blood drawn for the celiacs test yesterday and should get results by the end of the week and we see a pediatric allergiest tomorrow. I am feeling more peaceful having made these steps. We’ll see how it all comes out.

Thanks for all your input!

Kara

[Anonymous]

We had David’s one month check back yesterday after being put on iron and formula (he’s about 1/2 on formula and 1/2 breastfeeding at this point). He did well. His blood work showed improvement and the doctor was pleased.

I am glad too but also confused. His diapers have been terrible since starting iron. They have a ton of mucus and are full of black specks that I can only think must be dried blood (they are also dark green but I know that is normal for being on iron). I told the doctor this but after he saw the improved numbers he said they wouldn’t look so good if it were blood. He also said that being on iron scewed the test numbers so it really didn’t do any good to retest.

I’m glad if it’s not blood, but then what in the world is it? I begin to doubt myself. It doesn’t seem that my observations mean anything. How can he be so anemic because of bleeding in his intestinal tract when his diapers look great with no sign of blood and then how can he be doing so much better with his diapers looking so terrible? I can’t make sence of anything anymore.

His celiac test came back negative but did show low for Immunoglobulin A. Serum. As far as I can tell, it is inconclusive what a low IgA number means. The studies I saw said that low numbers were more prevalent among those tested for CD and those with CD but really all that was conclusive was that kids with intestinal problems tend to have low IgA numbers.

We did skin prick testing at the allergist and all that came up as positive was peanuts. The rest of the major allergens did not show positive. He even tested for breast milk, allimentum and Neocate. We are waiting to hear back on the blood tests. They had to be sent to Primary Children’s.

We are still looking forward to an Apt. with Christine’s GI on the 11th.

Thanks for listening!

Kara

[Anonymous]

kara, one of my kids is IgA deficient—we had to do specialized testing find out whether or not he had celiac as the normal tests won’t tell you anything if you are IgA deficient. hopefully celiac is NOT what you are dealing with, but with david being so young, even if he weren’t IgA deficient, the tests probably would not be accurate.

we saw the ped gi on thursday—-i told him you were coming. i really hope you have as good of an experience with him as we have.

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