Stuck and Scared Part 2 Follow-up Questions Regaurding My Daughters Health

My daughter is also on the hoosier healthwise insurance and if you request a specialist see her then they have to comply. My daughter had multiple UTI infections, she drinks tons of water, goes to the bathroom regularly, wipes correctly etc and still got one every 2-3 months. Her Dr also just wanted to wait and see and I requested she been seen by a pediatric urologist and at first she said no but I called the HHW number on the card and explained what was going on with her and they contacted her Dr. office and requested she be sent to Riley for me. She now goes every 6 months for a check up there and has yearly kidney scans. If you really want or feel like she needs to see a specialist, call the HHW number on the back of the card and speak with someone there and they should be able to help you or put you in contact with someone who can help you. Also if you want to switch doctors, you just have to tell them that and they have to comply with your request if you have reasonable reasons for wanting the switch.

6 moms found this helpful

Get a hemotologist referral, they are the only ones who can accurately handle a blood/immune disease issue. My son went thru the pedi, allergist, then hemotologist and we finally found the answer. It took 3 months and some scary tests but in the end we found the answer, bonus it was something he would/did grow out of and he is fine now. It's time to get busy on this one mommy.

3 moms found this helpful

it sounds as if you need to change doctors and get to the root of the problem.

A child should NOT be given antibiotics for a COLD or the flu - all it does is damage their system.

If she doesn't have allergies - she should NOT be on ANY medication...take her to an allergist and have her TESTED PROPERLY to find out what she is allergic to. If nothing comes up - then you need to ask where you go from there.

If she has allergies - then you should talk to the ENT about the allergy shot or some homeopathic method you can give your daughter....my allergies have been better with the use of a teaspoon or two of LOCAL unpasturized honey.

However, I just don't get how a child is being given antibiotics for a COLD!! What doctor in their right mind would do that to a child?

If she has allergies - go around your home...vacuum daily. keep her window closed. dust frequently. wash stuffed animals every couple of weeks. wash the curtains every three months. wash her bedspread/comforter every three months or more often if needed. if you have carpets - get hardwood floors...if you can afford it.

3 moms found this helpful

Assuming R. is your local Children's Hospital... there is an "end run" around Children's Hospital Specialists & insurance.

The next time she has been sick for a few weeks, you pack a bag, bring your notebook that has all the dates and treatments of her illnesses, and you take her to the Children's Hospital ER.

You walk in, you tell the triage nurse that your daughter is now on week X of being sick, and has been sick for (20/30 whatever number of weeks it is) weeks this year, was sick for x number of weeks last year, and that you're very very scared that something is seriously wrong.

State medical pays for ER visits. When the ER orders tests and specialists, bam. There's your referral you need for your insurance.

ALTERNATELY, change doctors, make and IMMEDIATE appt, and walk in and ask for a referal to a specialist at R..

ALTERNATELY, when you change doctors, SELECT a doctor who is IN and practices out of the children's hospital. Even if it's a few hours away, that will get you in the hospital and that ped will rather naturally refer you to specialists within the hospital itself.

I cannot TELL you how many parents I've met at Seattle Children's who have the exact same story you do: MONTHS of their pediatrician ignoring them, 'normal' hospitals sending them away, and within 20 minutes of being at Children's ER were admitted on the spot for major (but fairly rare) health problems than normal peds and hospitals just don't see enough to recognize.

2 moms found this helpful

First off, you need a breather. I can hear the panic in your voice as you type this post. I feel for you. Anytime our little ones get sick, we only want them to feel better, and make sure that nothing is going on. It is possible that all of this medical concern/medication/stress has lowered her immune system as well as the ability to fight off infection. Her immune system needs to be recharged so to speak. I would make sure that she is taking vitamins/vitamin C tablet daily. Also, for the allergies-does she gargle? Not sure if that would be easy for a 5 year old to do. Sometimes by gargling with warm water/little salt helps to clear out tonsil stones. However, if she constantly is having tonsil stones, it could be that her tonsils are inaffective, and are susceptable towards infection, as well as not being able to fight off infection as easy. This might attribute to her always getting sick. However, since she has the non allergic rhinitis, it does take awhile for that to clear up. Not sure if nasal washes are safe for a young child, but sometimes that helps with the post nasal drip.

If she was retested for MRSA, and it was negative, then I would try not to worry about it. They didn't catch it the first two times, but did the last time, and she was retested and it stated she was negative.

If this occurs every 6 months, then it probably is allergy related. The clearing the throat is from post nasal drip as well. It also is habit forming when you do suffer from chronic allergies, sinus issues.

For the mean time, make sure she gets enough rest, fluids, lots of veggies and fruit, and plenty of excersize. You both need a breather from all of this stress. I hope this helps in any way.

When my son is sick, and his doctor looks at me like I am nuts for worrying, I just start to cry and tell her that I am a nervous mommy, and just need reassurance that my son is going to be okay. Most times, they then soften a little, and try their best to not laugh at me, and think I'm crazy. They also take more time explaining things, as well as putting me at ease.

2 moms found this helpful

Hi T.,

I am sorry your child has had such a rough go with sicknesses! I would keep looking for the right specialist untiil you find him/her. Never give up. If you feel there is something seriously wrong, don't take the wait and see approach--keep going until you find someone who will listen to you and answer your questions. I wish I could help you more, but I don't have any other advice for you. Best wishes and hope she gets to feeling better realy soon!

M

2 moms found this helpful

I would check your home, to be honest. If your daughter is allergic to something in the home then she would be more susceptible to getting sick from illnesses outside of the home due to a compromised immune system.

My best friend's husband and daughter have severe asthma. They were allergic to their 2 year old Golden Retriever as soon as he got his 2 year coat. Nothing they did with the dog alleviated their symptoms and they had to rehome the poor dog. Her husband almost died because of having such a bad reaction.

In addition to that, they were both always sick and the daughter was always, always having sick days from school. The husband was having too many asthma attacks even once the dog was gone. They had to have their furniture completely cleaned, replace all of the mattresses in the house, replace the area rugs, and they had to scrub down all of the walls, floors AND CEILINGS with a special cleaner. They also got an air purifier and dehumidifier for each floor of their home. Everything has to be cleaned and washed in a timely manner rather than being left damp to avoid the risk of mold.

They got a "hypoallergenic" dog. As soon as the husband and kids come in from playing outside they put their pollen-laden clothes in the washer. They wash surfaces twice daily. Illnesses have drastically reduced. When the daughter has allergy symptoms, she goes to school unless it triggers a severe asthma attack.

I have a compromised immune system as well, but keeping my home free of mold and keeping things clean, including "washing" my cats and making sure that they're brushed daily, helps control my allergies. I take daily Claritin (generic version) to help out, although Winter is very rough for me and I do get sick a lot from whatever the girls bring home.

But when my kids get sick, I don't keep them home for the entire duration of their illnesses. I keep them home as long as they're fevering, contagious, or they feel so horrible that they can't get out of bed. If their symptoms can be controlled otherwise, then they go to school. Same for myself. I have so much to do that even as a SAHM I can't just sit home.

As for your doctor situation... call your insurance company. TELL them that you want a list of local doctors in your network because you ARE switching due to the current one being incompetent. They work for you, not the other way around.

2 moms found this helpful

I'm so sorry for what you're going through.

If you can, try getting opinions from many different healing modalities, from ultra-mainstream to ultra-alternative. Each one has their blind spots, each one has their strengths. Don't take any answer as "true" that doesn't match with your observations. *You* have the most detailed and comprehensive information about your child. You are the expert, not the people with the fancy degrees. I've gotten useful medical information from MD's, ND's, chiropractors, physical therapists, massage therapists, energy healers, and my mother.

Remember that sensible medical advice can come from non-medical providers. After my car accident, an MD found no broken bones and declared me un-injured. The junk man took one look at my car in the junk yard and said "go back and see a specialist. There's no way in hell you got out of that vehicle without injuries." I went back and saw a sports medicine doctor who specialized in soft-tissue injuries. The first MD was wrong. The junk man was right. I had a lot of very severe soft-tissue injuries.

Regarding finances: know that a lot of medical providers offer steep discounts to people who pay cash up front. This is especially true of alternative health care providers. In many cases, paying in cash is less than the copay for insurance.

Also, try doing a lot of your own research. Get books from the library and read up on different approaches to health care, specifically the immune system, the respiratory system, and allergies. If you read something that sounds "right", find a health care provider who can evaluate your child in that area.

Keep in mind that there may be many different causes stacked up on top of each other. Keep looking for answers until you get to the bottom of it.

On an immediate basis with the MRSA, look at GSE and colloidal silver. These are powerful antibiotic alternatives that can be effective in situations when antibiotics are not.

Good luck!

2 moms found this helpful

My advice is this:
1) get her on a GOOD probiotic ASAP--if you're gut is balanced and healthy, it greatly affects the rest of your body
2) consider having a CBC, iron levels, etc. checked; she may be low in certain areas that are affecting her immune system from doing its job
3) if the above 2 don't do the trick, look to possible allergies--food, chemical, enviromental; get rid of any toxic cleaners in your house, vaccuum regularly, wash bedding regularly and dry on HOT; consider an elimination diet of the top 8 allergens (pull one at a time)--first should be dairy, followed by gluten if you don't see any changes with dairy. Make sure to remove all traces. It may be a favortie food that she eats on a very regular basis that she cannot tolerate.
Good luck and try to avoid antibiotics at all costs.

2 moms found this helpful

I'm not sure I understood it all correctly, but it sounds very frustrating. That doctor...ooooh...I think I would do whatever I could to discredit him! How dare he call CPS like that. What a jerk! I had to see an infectious disease doctor once too, and he was really, really weird. Maybe only weird people become those types of doctors (hehe). Glad you ended up not having issues with that.

MRSA is definitely something to take seriously. What a stupid comment from him about that.

I really had no advice. I know some people have allergies that always bother them. My daughter is immune compromised and takes weeks (months) to get better from illnesses, but it's for a different reason. Her body doesn't make enough blood to fight illnesses. We also homeschool her. We had chosen to anyway, but we would even if we hadn't already decided that, so I totally see why you chose that. You don't want them sick all the time!

Mostly just sending support and hoping you get the answers you need.

2 moms found this helpful

im not sure about your daughters health baby girl, but i have been looking into homeschooling my two boys. I am concerned about the school system, curricullum based on state standards that are controlled by federal grants. It seems to me that right now our schools are only teaching our children what will be on the tests in order to pass the children and continue recieving grant money. I have found a lot of great teaching material and sites that are dedicated to help parents with all of the facets of homeschooling. However, I am seriously thinking that homeschooling is not the right choice. The social skills they learn from going to school are so important, and these skills are something that I cannot teach them at home. I understand that your lil one is sick, but I would think really hard about the decision to keep her home. There are life lessons that she is missing out on, and social intelligence is becoming more and more important in the world that we live in. The best of luck with whatever decision you make!!!!

2 moms found this helpful

Hi T.,

I'm sorry your daughter is having such a difficult time. I was wondering if maybe an immunologist would be able to help? I found a website where you can ask doctors a question. Maybe they would be able to lead you in the right direction?

http://www.justanswer.com/sip/Health/General%20Medical?r=...

I wonder if she has a zinc deficiency. I get over colds a LOT faster- or manage to not get it at all if, when I first notice symptoms, I take Zicam. I like the cherry rapidmelts. The directions are for adults and children over 12, but I wonder if you talk to her doctor about it, if he would ok it.
They have found zinc to be important in getting over colds. Here's an article:

http://voices.washingtonpost.com/checkup/2011/02/zinc_hel...

Hope it helps :)

Best wishes!!

2 moms found this helpful

I'm so sorry you are going through this. It sounds like you are trying your best with your daughter but the doctor(s) you have gone to are not helpful at all. First, I just wanted to say that homeschooling your child can be a great experience; we are homeschooling our children by choice and so far we really like it. My question is, are you able to take her out to parks and activities and field trips? Are there any homeschooling groups in your area where she can interact with other children? If you are able to find other kids for her to play with, and able to take her out to different activities, then homeschooling can be a great choice (one that many people choose not for health reasons but for a whole long list of other reasons).

Wow, there's so much going on with your daughter! I'm so sorry. I'm trying to read through your post again and figure out what I would do in your situation. First, I think it would be a good idea (if you haven't already) to have a written list, in a notebook, of everything your daughter has gone through. Request medical records from previous doctors, write down everything (all the antibiotics) she has taken, all the tests she has had and the results, everything so that you can keep track of it all. That way, if you decide to switch doctors, you will have it all for your own records. When my brother had cancer and had to have lots of treatments, my mom kept track of it all in a notebook and had it for when they moved to a different state.

Second, is it a good idea for her to have had so many antibiotics? I know the doctors might have thought so, but I remember learning from my microbiology class that having too many antibiotics can actually raise your risk of getting antibiotic-resistant bacteria (like MRSA). Again, I am not a doctor, but it could be something you could bring up to your doctor if it is still an issue.

Third, I agree with the other posters who say to go through your house and try to get rid of any possible allergens. I have asthma and allergies and this is always the first thing they recommend. I think mold is the most challenging of all the allergens because mold can hide in the craziest places, but try your best in getting rid of all possible allergens (and cover her mattress with an allergy-proof cover, and wash her bedsheets in hot water once a week).

Last, maybe you can insist that the doctor give you that referral to Rileys (I assume you mean the children's hospital?). If she has gone through years of getting sick and not really knowing why, it warrants trying to get a second opinion. If you don't like your doctor, then get a list of all the doctors in your area that accept Medicaid and try out each one until you find one who is willing to work with you. I'm so sorry you are going through this, and I hope you are able to figure it out so that she can stop being so sick all of the time. Good luck!

2 moms found this helpful

My daughter had her tonsils out at 8 and it was the best thing we ever did. She constantly had colds and post nasal drip and sore throats. We had strep tests all the time but they were negative since it was just caused by mouth breathing at night since her nose was almost closed with these huge tonsils and adenoids. The pediatrician fought me for almost 2 years and said that even if tonsils are infected they just treat them now and not take them out. I finally just demanded to see an Ear-Nose-Throat (ENT) specialist, who said that the pendulum has swung too far the other way. When I was a kid (I am 50 now) everyone had their tonsils out if they had a cold at around age 6 and now no-one gets their tonsils out unless you insist. After the surgery the ENT doctor said they were some of the largest tonsils he ever removed, they were completely growing into her nasal passages clogging her nose breathing. She is now 14 and her colds, sniffles, sore throats have literally been NON existent. After surgery she needed to stay home for about 10 days - the main concern is that there can be bleeding from the tonsil beds right after surgery and again about 7-10 days later when the scabs fall off. My daughter had no complications, did not even take painkiller after the 2nd day since it tasted funny (tylenol with codeine).
Another story - a friend of mine also took 2 years to go from doctor to doctor to find out why she was losing weight and would become allergic to anything she ate. She ended up with intravenous night feedings at home because she was getting deathly skinny. She finally got so fed up with all the different doctors having different opinions that she arranged to have a conference call with all of them (about 5) so they could discuss what was wrong with her. They finally found out that she had had some kind of viral infection that was now gone but it caused her stomach muscles to weaken and they no longer digested the food correctly. A single pill every day now helps her stomach muscles contract better when she eats and all her symptoms are gone. Just be careful what each "specialist" tells you since they tend to find something in their own specialty, which may only be a side effect of the true issue - she was told she had severe allergies, leaky gut, perhaps cancer, blood disease,etc. etc. when it turned out to be a mechanical problem of her muscles not contracting causing undigested food to travel through her system and not giving her any nutrition plus pain and diarrhea and weight loss. Good luck, and keep lots of notes and all her records with you so other doctors can see what each said.

2 moms found this helpful

I was very hesitant to have my son's tonsils out too because I'm not of the mind set that they are 'superfluous'. I believe every part of our body is there for a purpose .... so I waited a year. Then I met a doctor who agreed with me, all of our body parts are there for a reason, BUT we have a lot of duplicity as well. There are other parts of our body that do the same thing as our tonsils just in case some of them don't work well. My son did 100% better in things I hadn't even thought of once we had those out, so if that has been recommended, think seriously about having it done.

Although there is always a risk with surgery, this one is not very invasive. It is over in 15 minutes and there is not a lot of opportunity to spread infection. Just follow the instructions after and keep her drinking.

With that said, you should definitely wait until you talk to a doctor you feel comfortable with and who takes your concerns seriously ... they are out there.

2 moms found this helpful

I'm going to approach this from a different standpoint: my son started a preschool program at a local daycare at age 3. He was sick a lot! He switched to full-time at the daycare when I began working there. His illnesses continued. By age 4, he was on Zyrtec, nasal spray, & daily eye drops. & again, the illnesses continued. They ranged from simple cold-like viruses to strep......again & again.

& I want to be very clear on this: prior to this preschool/daycare program, he'd had minimal illness & only 1 ear infection.

End result: tonsils & adenoids were removed. 6 weeks later, another round of strep.....& no interrruption in the allergy symptoms. I was frustrated beyond belief! I quit my job...because his illnesses were jeopardizing it. Within 2 weeks of leaving the daycare, most allergy symptoms were GONE! We continued with our appt with the allergist, & her opinion was that all that we'd been thru had been the direct result of environmental issues at the daycare.

When she said that, reality hit me: in all of the storerooms at the daycare, mold was growing rampantly. As in, if you pulled baby equipmt from storage, you could wipe the mold off with your hand! So, in the end, my son tested positive for an allergy to mold.....& that was it. To this day, I truly believe that if I'd known what was going on....then that surgery could have been prevented.

Soooo, flipping this to your situation: what's going on in your home? If she did okay on vacation....is there a chance that the culprit is in your house? Could it be mold, dust, tobacco smoke, pets? I know you said she was sick at school.....but it seems to me that it's also happening at home. Take a good, hard look at your environment & think about what could be triggering her! Reactions to allergies can appear to be illness. At this point, I highly recommend doing a total house, top-to-bottom gutting & cleaning - just to see if it helps her!

One more thought for your daughter: has she been checked for asthma? The clearing of the throat is part of what I feel the need to do....when my "allergy-induced" asthma kicks in!

Moving on to you: wow! It sounds like your stress level is really off the charts right now. As other posters mentioned, please try to find a support group for yourself! IBS is challenging to live with.....& implementing some of the ideas posted may provide you with some relief. I wish you luck with this!

& as for your level of frustration with the medical field & your daughter's treatment: you seem to be really intense in regards to your requests. Fully document each & every symptom/event with your daughter. Make sure you are cool, calm, & collected with each/every interaction with the dr/nurses. Do not give in to panic & paranoia.....it will not serve any justice for your daughter!

I realize you are concerned & worried....but a few things jumped out at me: when your daughter is ill, is she running a fever? Is it just allergy symptoms, such as runny nose/cough/watery eyes? Or is it full-blown with a fever over 101? When you say it lasts for weeks.....yes, allergies can tie you up for weeks! But kids still go to school with these symptoms! That's where one of my concerns lies.....is she really sick enough to warrant staying home? How much of this is truly illness & how much is ???fear on your part??? I really, really hate phrasing it that way.....please don't take offense! But for me, when I read both of your posts....there is seriously concern that you may be part of the problem. Please, please take a good, hard look at the whole picture....& please, please think hard on my comments. Maybe, just maybe, there is some room for readdressing your assessments of her health! I sincerely wish you Peace.

1 mom found this helpful

I feel the same as Sue H. Check your home for mold and dust. Even inside the walls can be moldy and you dont see it but the spores get in the air and she breathes it. Is she really sick enough to miss so much school. I know its hard to tell sometimes, but a runny nose isnt really reason to stay home. Id see if theres a fever and coughng a lot. But like I said, its hard to tell. Also, maybe you are so in gear due to her trouble with health that now all you focus on is her health. Is there a way to step back and relax and not worry or panic so much about it? Gosh, I cant imagine how,. but wouldnt you love to not spend your whole day dwelling on her health? Im sure she is wishing she had a few days or "other people's normal" too. Maybe talk to a counselor and see if they can help you to get a better view of whats going on. Im not saying you are nuts, or over exagerating the situation, but maybe you have let it consume your life and you need someone with better skills than us, to help find a way to let some of it go. I have a 28yr old daughter with type 1 diabetes and believe me, I have let it consume way too much of my mind and life. I dread everytime she gets sick, or goes out and doesnt get enough rest, or coughs, and after a while Im sick from stress and shes just fine! So lets hope you find some good answers, and handle it in a healthy way so your and her lives continue happy.