At a Loss!!! Please Help!!!

Updated on May 26, 2012
J.B. asks from Mount Laurel, NJ
15 answers

My 6 year old daughter has been through more than most her age. She has had bouts of sinus and ear infections as a baby but when she hit pre-k it exploded! For the past two years it seems like through out pre-k and now thru kindergarten it feels like we have lived in doctors offices. We were finally recommended to an ENT and went forward with getting her tonsils and adenoids removed in Feb of this year. She contracted a secondary infection and after battling through that wound up with strept yet again!!!!!! We were then sent to an immunologist who started her on a sinus rinse, sinus spray, pro-bio tics, as well as a very low dose of 4ml of bioxcin (SP?) sorry its late and don't feel like digging for a bottle!! Anyway with this antibiotic that was prescribed my six year old had to go without dairy due to the fact that it would break down properties of this medication. Did I mention it was a 21 day regiment!!! So after doing all of this and her missing most of her kindergarten year because of it we wind up back at her pcp with the fevers starting all over again! They diagnose it as a drug-resistant infection and tell us to follow up with a different ENT because the first we had no luck with getting on the phone when there were complications and then the immunologist as well. So we go back to the immunologist for them to pull 15 tubes of blood out of my child and that's only half of what they needed. I now have to wait 24 hrs and take her back Friday to complete all of the blood work. They have also ordered a sweat test which I'm not familiar with exactly what that consists of just yet other than the fact that your only option for an appointment is to leave a message for them to schedule you!!! I somehow managed to express my extreme frustration with the new ENT office which has agreed to see her this Friday as well at 8:30am in an office that is at least an hour and a half away! I am willing to go to extremes to actually get to the root of my daughters problems!!! I have done nothing but hit dead ends and pumped her with antibiotics which might actually cause autoimmune deficiency down the road and a surgery that did not seem to do any good with the original problem. I am a single mom who has been thru college and now I'm thinking I should have gone the doctor route because it may have taken less time to figure out what is wrong with my baby!! She is my one and only and because of complications I will never have another of my own. If anyone can relate or point me in a direction that has an answer behind it it would mean the world to me and an absolute blessing just to get my little girl to where she can actually be a kid again!!!

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So What Happened?

The orders say Mannose-binding lectin 16039, lymphocyte mitogen and antigen stimulation, cc 17678, comprehensive metabolic panel 10231, isohemagglutinin titer 29837, haemophilus influenza type B antibody (IGG) 35135, lymphocyte subset panel ! enumeration 7197, ESR (SED RATE) 809, CBC w/diff 6399. And I believe all of the tubes were not completely full. And they are suppose to do another 9 items to test for this Friday. I also left out on Friday they will be testing her urine for a routine culture and 3 different stool samples that I have to catch and do various different things with. She has also been dropping weight and is now down to 40 lbs from around 46 when this first started to hit the hardest in September of this year.

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C.W.

answers from Santa Barbara on

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!

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E.O.

answers from Los Angeles on

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!

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J.W.

answers from Lexington on

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.

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V.W.

answers from Jacksonville on

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>>>>

1 mom found this helpful
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A.S.

answers from Dallas on

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.

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K.S.

answers from Miami on

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.

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M.P.

answers from Raleigh on

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!

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M.O.

answers from New York on

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

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D..

answers from Charlotte on

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

J.M.

answers from Philadelphia on

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

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L.L.

answers from Charleston on

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!!!!

☆.H.

answers from San Francisco on

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?

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P.K.

answers from New York on

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.

J.S.

answers from Jacksonville on

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

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G.B.

answers from Oklahoma City on

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.

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