Allergist Cannot Confirm nor Deny My 7Mo Has Asthma

Updated on July 28, 2008
F.M. asks from Corder, MO
18 answers

Okay, I had you all about the asthma before on my 7 mo old. They have him on asthma regimen, and he was only in green zone for 3 days this last month. He has been in the Er twice since he got out of the hospital a month ago. So, today, we finally get to the allergist, and I was so glad. His asthma is not in control, and they had not given him more steroids even though he has been in the Red for quite some time. The last 10 days, he has been turning blue around the mouth and nose, purple fingernails, dusky, grey and very soft. But, he has always been responsive, even playful at times. A lot of this happens when he is asleep. The ER doc and the allergist both got to see his color issues. The allergist said that they are thinking that he either doesn't have asthma afterall, and/OR he has something else going on. Which I have been trying to get ppl to listen, and even got blown off by the Er docs last night, even though his color was very bad. I think he has a seizure Mon evening.

So, they are sending me to a cardiologist, and maybe even a pulmnologist. The overall doc said it could be reflux that could be causing his color changes. He does not spit up ever, and he never cries. Our PCP, who he referred me back to, says we won't waste our time on that. They checked his blood for anemia, considering he is pale most of the time now. He was never like that before. He is just now getting his appetite back from a month, last night.

And, then I wonder, what are the chances? We live nearly 2 hours from the children's hospital. And, I was talking to my friend today in a public place in a small town I rarely visit over an hour away, and another lady tells me how the cardiologist "Dr. so and so" is such a good one. She had experience with him, because her grandson was diagnosed with a heart problem very young, and he has asthma as a side effect.

The drs also were very good about avoiding telling me what this kind of thing might mean, just instructions to go back to our dr for different referrals.I thought they would send us for a sleep study, perhaps apnea?? But, no. And, I will have to be patient, our doc says, as it will probably be a month to get that appt with the heart doc. Anyone have any experience or know anyone who has dealt with this type of thing? Thanks, Kymberli

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So What Happened?

You'll be happy to know that I went back that night and they admitted him for observation. The next day was Friday, and the echo came back fine. so, they were going to give me the option of taking him home and doing the rest through the clinics, but the pulmonologist is like a House MD man, and he said no way. They would continue tests through the weekend and by Monday we would have the answer. We had the answer 2 hours later. Well, by Monday early, he had his surgery for a congenital heart defect, that was more vascular in nature. He had a vascular ring that is commonly misdiagnosed as asthma. Well, they only do 3-4 surgeries for this per year, so that is how rare it is, in a big city children's hospital. And, this formed in gestation at the same time that I had lost our twin, so I wonder is something just went "squeak" at that time. We have a lot of heart stuff in our family histories, but we have 6 healthy children. They say there is no possibility that our 6 yo that has been recently diagnosed with asthma (and has a very narrow trachea) could have this, but if she does (as she has developed these things back when they both had the same virus) it could go down the same road but she is 6yo. And, that would be 1 in 100 million. LOL

This is the typical time they diagnose this birth defect. I have 6 healthy children, this really is a surprise. But, the good news is that if he doesn't really have asthma (he could still), then this is fixed and should not have any lasting effects, and he would be cured. His low immunity will also be boosted because his circulation is good now. The color changes and good oxygen stat points to a cardiac issue, comes to find out.

And, they were soooo glad I brought him back in. They have all been oogling over this fat and happy, smiley baby, because most children coming in with this are already thin, pale, coughing and wheezing. And he wasn't. So that gives him an advantage to recovery.

And, the lady who was his EMT from Centerpoint to Children's last month, did his IV Sunday night, and he went to her and even cuddled with her AFTER she put the thing in his hand!! Even the male docs here have said how cute and adorable he is, and the neurologist said that he was glad he met our baby! Now, he is 20 hours out of surgery, and has already nursed well, and sleeping quietly in bed. I had to hold him all day and night, but now he is fine. Kymberli

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M.M.

answers from Kansas City on

As a nurse and a mom you need to get your child seen ASAP.. If your doc won't help find another that will. Doctors are a dime a dozen search for one that is willing to listen and get you into a cardio doc. If your PCP makes the appt. for you you will get in sooner than if you make the appt. depending on how serious your PCP makes the issue sound..

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J.A.

answers from Kansas City on

I'm not going to claim to be smarter than these doctors, but it seems as though your son should, at the very least, be on an apnea monitor 24/7 until this is figured out! Did they take his Pulse Oximetry while in the hospital? I had a preemie son who was sick this winter due to "baby asthma". I did not like what my peditrician was telling me so every time he got a cold I went straight to CM Urgent Care. Until someone listens to you, keep taking him back to the ER or UC as needed. You're him Momma, so keep fighting for him. If nobody listens, take him to a different doctor.

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M.S.

answers from Kansas City on

I would also say to take him to Children's Mercy, even if it is 2 hours away. It might also be a lung condition. At 3-months my daughter was diagnosed with 2 lung conditions. She would turn blue around her mouth occasionally. Children's Mercy is a wonderful hospital. I agree with everyone else, that you should go straight to the ER. Also, they do offer financial assistance if your insurance won't cover it. Good luck and let us know what you find out! I'll be praying for you and you little boy!

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M.T.

answers from Kansas City on

Kymberli,
I am not sure what it could be be but you have to be firm with Doctors, I have been arguing for over a year with my Daughters Pediatrician, about allergies. The Allergist at Children's Mercy said that it isn't allergies, but it may be asthma, well the asthma medicine didn't make a noticeable difference so I took her to a different Pediatrician, happened to be one that used to be in the office with her current one. I found out I didn't like him but her old pediatrician suddenly listened to me after getting a request from the other doctors office for her records. What is going on with my daughter is no where near as severe as what is going on with your son. My Husband and I both have sleep apnea and our color never changes even though we stop breathing. I would be inclined to think heart/lung also, only because my Dad was what they referred to as a blue baby, he had to have a blood transfusion at birth because his blood was not flowing properly, giving him a blue grey tint to his entire body. Are you going to Children's Mercy in Kansas City? That we went to Children's Mercy South and the Allergist did at least try Asthma medicine, it just was hard to tell if it was working, and she won't take the Singulair. So I guess since it is not that bad we will just wait and see if it gets better, it does seem better, I took her of all over the counter medicine when they insisted it was not allergies, but my Mom's dog which I thought was part of what she was allergic to, also died at almost the same time. Good luck with your son's condition, Children's hospitals are generally very good, it does take a while though, but ask questions, I always make a list, don't let them rush you. You make sure you understand and that you feel comfortable with what they say. Hope everything works out for you and your family.
M.

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J.B.

answers from Kansas City on

I just want to start by saying I am so sorry... it is so devestating to be certain that something is wrong and have "professionals" repeatedly try an convince you that you are wrong; you begin to question yourself and your own judgement on top of questioning theirs, it is scary, frustrating, and so much more- you shouldn't have to deal with it.
When I was nursing school one of the biggest lessons of pediatrics is to always trust the parents' judgement if they say "something isn't right"... even when tests all point toward nothing a parent knows their child better than anyone else and they will notice things before the tests say yes. Someone should be listening to you.
Blue, grey, purple! These are not normal colors (I know you know) I just can't believe a doctor would even let you go home with your child... I guess I don't know the exact situation, but I can't believe they sent you home with your baby that clearly oxygen deprived. color changes like that are called cyanosis, check to see if his fingernails have flattened or clubbed-- Hold your finger flat like a ruler, nail side up, level in front of your eyes, you will see that where your cuticle is forms the point of a 'V' formed between your nail and your skin... if that area becomes flattened or the 'V' looks more like a straight line its called clubbing which a sign of longer-term oxygen deprivation. If you really feel this stongly that something is worng, point out all these things to whoever sees your son and get noisy... I know it sounds bad, but I work in a hospital and the squeaky wheel always gets the oil. Insist that you know your child and children in general (since its your 7th) and you know this is not normal. DEMAND that they do something, figure something out, check him in, whatever it takes, but you will not just wait any more. If they refuse, take him somewhere else... you do know your child best, regardless of if you know diseases, or medicine, or anything else. Trust your instinct and use your mama power to make them listen.

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C.R.

answers from Knoxville on

My youngest has asthma, he started this when he was probably 2 months old. I kept taking him to the pediatrician and he would tell me nothing was wrong. Finally about 2 weeks before Christmas he stopped breathing in the middle of the night, we did mouth to mouth and got him to breath again. We live 4 blocks from the hospital, so my hubby jumped into the car with him and went to ER. They whisked him away and my hubby did the paperwork. The doc came out before he was even finished with the paperwork and said why didn't you tell us he has asthma? He replied that he did not know that. Doc said this was the worst case of asthma in a young child(8 mos. old) that he had ever seen. My hubby called me and told me what the Dr. said. That day we changed Dr. The new doc was so much more understanding and compassionate. My son is now 14 and does not suffer much. The first 5-6 years we suffered alot. If you are not comfortable with the doctors and someone else you know has had a positive experience with another dr it would probably be worth it to see that dr. Be honest with the dr. and ask him/her to be honest and upfront about what is going on with your child. You need to make informed choices for your child and can only do that if you know the truth about your childs condition. You can also look things up on the internet, I like webmd. The information seems to be honest and to the point. Good Luck and God Bless

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G.B.

answers from Kansas City on

My son was diagnosed a few hours after birth with a congenital cyanotic heart defect. He started to look dusky while they did his hearing screening and turned out to have a large hole between his left and right ventricle and no pulmonary valve. Basically, his heart couldn't get oxygenated blood to his body. We had a temporary fix at birth which improved his color for a little while then just did his surgery to do the total repair and now he's beautiful pink. Based on my experiences (even though he does not have asthma, possibly because it was caught right away) is definitely take him to a Cardiologist. We go to Children's Mercy and see Dr. Mark Gelatt (travels to both the downtonw CMH and the one in Overland Park). He's a very good doctor, even made a social visit at the hospital after my son's recent surgery, but he tends to mumble so you have to listen very closely to him. So many kids go with undiagnosed heart problems, I really think its better to be safe than sorry. Godo luck and I hope you get to the bottom of this soon!

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J.M.

answers from St. Louis on

F.,

I am so sorry this is happening. I agree with the other moms. Take your baby to the children's ER--even if it is 2 hours away. Kids are scary. They can compensate very well when they are sick, but when they can no longer compensate, they go down so fast. He needs to be evaluated quickly--not in a month or so. Turning blue is not normal for anyone, especially a 7 mo old. Good luck to you. God bless!

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H.H.

answers from Kansas City on

you may want to add a neurologist to your list of specialists to see if you are suspecting seizures. I have a friend with a 3 yr old daughter that has seizures and has been having them for a while and she just kept fighting for the doctors to diagnose the problem. She finally found a good neurologist that listened to her and had a CT scan done and have found the problem and now trying to work with the problem to keep her from having them so often.

S.L.

answers from Kansas City on

Sweet lady... What you need is prayer and LOTS of it. I don't know how you keep from coming unglued. I just can't see a child in such poor condition being left out of the hospital while waiting for the right appointments with the right doctors.

Do you have insurance? I would just keep seeing doctors until someone decides to get to the bottom of all of this NOW!

I had planned on starting a little baby in the daycare once and the day before he was to start he had a heart incident and emergancy open heart surgery. That child remained so ill I never did get to care for him. I have also taken care of 2 children that had heart surgery previous to their time with me. It happens far more than we usually realize. It can be bad and turn on a dime. I just can't imagine making you or him wait! I think you should camp out at the hospital emergancy rooms and refuse to leave until they get to the bottom of things.

Suzi

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E.M.

answers from Kansas City on

GET HIM TO THE CARDIOLOGIST NOW! I am not trying to scare you, however I watch a boy who is now 2 and healthy but at 6 months old we discovered he had complete blockage to his heart. If your child id tuning blue he needs to be seen now! Tell the doc that when you call them and I would insist that your doc give you an epipen. If he quits breathing it could save his life. Your childs health is not something you want to mess around with. I know you said you are far from a childrens hospital but that is where you need to go. Regular docs dont always catch everything. And in Kaden's case of course they did not. I also have a son with asthma that was not caught until we took him to the allergist - we even went to 2 of them until I was satisfied with the care my child was receiving. Have they X-Rayed him to check for pneumonia? The bottom line is that your childs health is in your hands and he needs to be seen by the best. We go to Childrens Mercy Hospital in downtown KC MO. I love the care that we receive for both of the boys and my other kiddos (my own and the ones that I provide childcare for). I am not trying to scare you or demean you as a mother but he needs to get well. Lack of oxygen and/or blood flow can cause brain issues. I wish you the best of luck, and if you do live far from a childrens hospital they should have a room where you can get some slepp if you need to stay longer than a day. I know Childrens Mercy does for sure. Keep us mommas updated! E.

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T.C.

answers from Kansas City on

With all of his symptoms, it does sound like it could be a heart issue. My now 4 year old was born with a congenital heart defect and had some of the same symptoms. We went to Children's Mercy and had a wonderful experience. He ended up having heart surgery at 10 months and did amazingly well. The cardiologist will do an EKG and an echocardiogram - both simple and nonevasive - and will be able to tell a lot. I'd recommend going to a pediatric cardiologist.

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V.T.

answers from Topeka on

My biggest response is to keep going to the doctors until they do something about it. My son was sick for about three months, very sick, and although they ran test after test, and couldn't find anything, I kept going. I am very sure that it say Bi&*$ next to my name. I also explained to them if it was their child, and they would continue to search for answers as well. Long story short I did finally give up on my Ped. and went to Children's Mercy in Kansas City, Mo. They were able to diagnose him in three weeks. Even though they were busy and also tried to push me off. I mean they would say that they could run a test, but it would be a month wait. I took the appt. and then when I got home, I would call back and call back, and I got the appt. the next week. I told them I could be there in two hours, so any cancellations I would take. So you just need to keep calling- which is free if your insurance isn't very good- or keep going. You are your child's only voice! Good luck.

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C.W.

answers from Kansas City on

I am so sorry to hear what you are going through. Be firm with your doctor and if they don't get it done then change doctors. With your son turning blue around the lips it is serious. He probably isn't getting enough oxygen and it could be a heart problem. I would tell the doctor that I am not willing to wait a month with the condition that your child is in and he needs to get you in now. If you take him to the ER they should be able to run the test there and get a cardiologist in there. Either that or your child's doctor can have him admitted to the hospital to get a cardiologist to see him quicker. A lot of doctors forget that moms can tell when there is something wrong with your child and your child has obvious symptoms. Whether it is asthma or a heart problem it needs to be addressed now. Be firm with your doctor and take your child to the hospital if need be and tell them that they need to figure out what is wrong now. I know that sometimes it is hard to be assertive, I am not that type of person, but when it comes to the well being of our children, that comes first. Like I said if it comes to it, then try to change doctors. I know with insurance that can be easier said than done but I don't think you should just be patient like what your doctor told you. Good luck to you and you are in my prayers.

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C.M.

answers from Kansas City on

Hang in there and keep fighting. Ask as many questions as you can think of and maybe even keep a log of all the different symptoms that he is having and when if you are not already doing that. Doctor's tend to be know it alls and they are so used to dealing with people that don't have a clue and don't care that they forget how to talk to people who actually do pay attention. My nephew had lots of issues as a baby and toddler(Nothing like what you are dealing with unfortunately). My sister had to go to lots of specialist and they had lots of therapy and no one could ever really give them any answers either. When he was about 5 they finally found a doctor that not only diagnosed the problem but fixed him and now he is a healthy normal 11 year old. I believe that the doctor had just recently moved to town when they saw him so don't be afraid to travel a little if that means going to the best. They are usually the best for a reason and not just because of their knowledge but also because of their communication skills. I wish that they would require a communications class for ALL med students! Anyway, it might be a battle trying to get the drs to listen to you but it will be worth it in the long run. Keep your chin up!

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B.S.

answers from Kansas City on

You poor thing. Gosh. Like other said, I would sit in the ER and refuse to leave until this was figured out. So what if they're annoyed or being rude. Your child is sick and you know it. On a much smaller scale, when my oldest had RotaVirus and we went to urgent care for it, they said she was fine and gave her a little IV fluid. We got home at 3:30am. The next morning at 8 I called her pediatrician, got in to see her, and it ended up Emme was in the hospital for 3 days. All that to say, keep pushing if you know something isn't right.

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A.K.

answers from St. Louis on

I am REALLY sorry about your son's health problems. Some, indeed, are hard to get diagnosed. I don't have any medical advice, but I will say that you know your child better than anyone. Some drs know that, some don't. You are your child's best advocate. No one is going to that job for you better than your are. Keep plugging away. Learn as much as you can yourself, ask questions, etc. Keep checking websites, I've asked heart related questions to an online medical page. Some have patients with similar problems talk about what they did, some have drs that answer. I also have a friend that is a nurse practioner, she is a great source of common sense medicine.

Keep at it! and GOOD LUCK!

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T.R.

answers from Joplin on

don't be scared, but he probably DID have a seizure. it's very common if kids get hypoxic, which he definitely sounds like he is. has he been tested for cystic fibrosis? (here's a home test: is he salty when you lick him? CF gives out all the bodies chloride and thickens secretions everywhere, hence the breathing/pancreatic problems). i DO NOT THINK he has reflux if no crying/spit up. but it does sound like a cardiac problem to me, a peds nurse who's dad also had tons of cardio problems. GET IT CHECKED IMMEDIATELY. take him to the children's hospital ER and DEMAND an admission. screw the referrals...you'll get a doc at the children's hospital anyway. constant hypoxia can lead to developmental delays and brain damage. you know in your gut somethings wrong...don't take no for an answer.

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