At a Loss!!! Please Help!!!

OK, *red flag*!! 15 tubes of blood??? I work for a national laboratory and have my handy dandy chart for maximum blood draws at one time and per month for pediatrics. For example, a child 41 - 60.9 lbs may have 20 mls of blood drawn at one time...nowhere near 15 tubes. What is the ENT testing for? Let me know if I can help clarify any of the testing.

**Thanks for adding what the tests are. Elsa O. did a great job explaining what the tests are. Don't be afraid to have the physician go through each one of them with you. I also second a blood test instead of the sweat test for cystic fibrosis. It sounds like they are really trying to get some answers based on the tests requested.

Best of luck!

Wow, seems like you can't catch a break! The tests the immunologist ordered are to test for different types of immune deficiencies, to see if her white blood cells work properly, which might be a reason why she gets so many infections, the CBC looks for anemia, platelet count and size, as well as a breakdown of the diffreent types of white blood cells. The H. Flu test is done to see if her body responded adequately by creating antibodies to the 4 shots she must have received over the first 2 years of her life, again to test how her immune system is working. The sweat test is done to look for cystic fibrosis, though there are several blood tests that can be done nowadays to look at the most common types of mutations that cause cystic fibrosis and are easier than the sweat test. I know it's a lot to take in, but if things don't seem to be working out, (not sure what type of insurance you have, if it's a PPO, I would really just look for another immunologist, like you did with the ENT, and who is hopefully closer to you than 2 hours away!! and schedule and appointment and sign a waiver to have the old immunologist fax over her records; if it's an HMO, then I would go back to her pediatrician and ask for a referral to another one, but sometimes those take a few weeks, which obviously sucks). When you go back to the immunologist, ask him/her to explain in detail what they think they are dealing with, and what each test is for. Make a list of all the questions you have and go down the list with each specialist. Good luck!

I would get her tested for food allergies/sensitivities, and focus on healing her gut. Food allergy testing is both the IgE skin scratch test as well as the IgG blood testing (can be done without a blood draw - just finger pricking). As for the gut, after prolonged antibiotic use, some may need to have anti-candidals (such as prescription Nystatin) for yeast overgrowth in the gut, and a diet low in sugar and refined carbs as well as having probiotics and prebiotics.

If she has not been checked for nutritional deficiencies (iron, vitamin D, etc.) I'd consider that as well.

Sometimes we are better off seeing an MD who also specialized in Integrative or Functional medicine.

I have no answers, but it seems like you could use a huuuuuge hug right about now. Sending one virtually and saying a prayer for your daughter and you to get through this.

<<<<hugs>>>>

Hugs to you. Saying prayers for you. Also, you may be able to google each test to see what they are. I have a feeling i know what some of it is, but i dont know for sure, so i dont wnt to say.

Per christine below, read this about max blood draws in pediatrics.

http://www.drgreene.com/article/how-much-blood-too-much-g...

Especially pay attention to what it says about using adult procedures to draw in pediatrics. Ask QUESTIONS. As many as you can think of. Start a list now, research on the internet and arrive armed on Friday with information.

OMG your poor baby. How horrible for both of you. Iknow kids are exposed to new germs in pre and kinder. My got sick alot too but not to the extreme you have faced.Mostly fevers and stomach virus stuff. I do not have any pearls of wisdom for you but my thoughts are with you and I hope you are able to get through this soon. Also you might want to start her on jump start at home on the computer and get packets from teachers so she is not held back.

Has anyone referred you to an allergist? My son was like your daughter- constant ear infections and antibiotics. Since he is allergic to a lot of the penicillin based antibiotics, our options were limited. The antibiotics he did take stopped working. Around the time that we were referred to an ENT for tubes, we also were referred to an allergist. We had the tubes put in but infections continued. Then, with the help of an allergist, we found out my son had severe allergies- like epipen level allergies. One we eliminated those allergens as best we could and started allergy medications we noticed a HUGE difference. He was like a different kid! Anyway, its something to consider if it hasn't been suggested before. I know how upsetting and frustrating it is to have to stand by and watch your kid suffer so. I hope you get some answers soon!

Just a quick note to say, I agree with everyone who's suggested both ear tubes and looking for dietary sensitivities. My son had chronic (and I mean constant) ear infections until we took him off all dairy products. This takes some getting used to, but what I wound up with was a kid who eats a healthy diet and just about never gets sick.

Best wishes,

Mira

Does your daughter have ear tubes?

Honestly, everything that the doctors have done sounds like standard operating procedure.

I would ask for an MRI or CT scan (NEW EQUIPMENT, not the old scanners). Ask about thickened cilia skin or a concha bullosa. It's better to know that not to, even if you choose to allow her face to grow - surery for a concha bullosa is controversial anyway, and not necessarily curative.

I wouldn't feel bad that you had the tonsils and adenoids out. They just coplicate things when they are nasty and full of germs, which hers undoubtedly were.

I hope the best for you and your daughter - best of luck with these tests!

Dawn

=( I hope this is all behind both of you soon and she gets better quickly

Ok, so this may sound crazy, but find a chiropractor with pediactric experience (most call themselves family chiropractors, but as about their experience with little kids). I was super apprehensive, but we have been through the ringer with medical specialists and drug regiments and so forth with my daughter as well. I took her to an experienced chiropractor and with 1 adjustment we saw a night and day difference. She is now getting adjusted 3 times a week (will eventually wean down to once or twice a month) and is a whole new kid. The doctors are baffled, but the proof is obvious for all to see. Our insurance does not cover this, and it is a huge strain on our budget but I know it will get cheaper as we wean down frequency and it is worth forgoing other things to make it happen because it has been such a monumental turn around for her.

Good luck mama!!!!

While I don't have personal experience with this, I know a few moms who went through the type of scenario you describe. In all of those cases allergies were to blame. Have you been to an allergist?

Sweat test only requires something like a wrist watch. She will wear it for
a while (no longer than 24 hours) just cannot remember. However, I
would take her to an allergist. Allergies can play havoc! Good luck.

I don't really have any advice, but I will be praying for you and your daughter! How frustrating. :(

It sounds like they are being thorough. I am so sorry she is having to go through all of this but if they find something that has a time limit and catch it in time then it is so worth the stress and worry.

IF they don't find anything I would be totally pissed. I can't imagine how hard this is for you.

I ALWAYS tell docs that I am over 100 miles away and need appointments that I can drive to while the sun is up. That way they try to schedule the appointments between 10am and 3pm. If they only had this opening then of course you had no choice. BUT in the future you might consider asking them to schedule you where you don't have to get up at 5am to drive to a different town in the dark for an early appointment.

Often times they start at the top of the page when scheduling, 8am, and work their way down. So the time they offer you on that particular day may be just one of many many times and days they have that week.

Take care of yourself too mama. Let us know what happens with her.