Need Some Advice - Ashuelot,NH

Updated on April 27, 2007
L.B. asks from Brookfield, MA
15 answers

My daughter has problems with her weight, she is 14 months old and only 17lbs. She has been to several different doctors and some suggest a test for cystic fybrosis, and some say she doesnt have the symptoms (like a cronic cough). I dont want to beleive my daughter could have a disease like this. I dont know what to do anymore because we still dont know why she is so small. Am i wrong for not getting her tested? Should i do it?

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K.N.

answers from Boston on

hi L.,
i would rule out all possibilities and if it means getting tested for whatever i would do it. you don't want to miss something if there is a medical reason beind it. peace of mind is key. i hope she is alright and good luck and let us know the outcome.

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P.P.

answers from Boston on

Dear L. b,

absolutely get her tested!!!! You need to know what you are dealing with. Obviously you have concerns and her pediatrician must also. I would see a physician at children's hospital in boston right away. Please do not be offended, but i would have been there with my daughter months ago!!!!

I am a mother of 10 month old twin girls, and like you they are the loves of my life. I don't know how i ever lived before them i love them that much.

Please get your daughter to a good reputable pediatrician immediately!

P. p.

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K.T.

answers from Boston on

HI when you metioned your babys eight it reminded me of y lil cousin ( my aunt is around my age so she seems like my niece but anyways) she had a heart problem UNDETECTED from doctores until my aunt brought her to nother pediatrician and he aid her\ weight is a sign of something and they found out it was her heart witch sounds VERY scary but on the good side she is very happy and healthy even though she is way underweight but now she is witht the right doctor and she is getting better and better. only you as a mom will have an instinct that you need to see someone else and if you do it may only ease your mind remeber you dont have to settle for what one doctor says you have the right to "feel crazy" and see as many as you wat good luck and hope she does as well as my lil cousin pulled through

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S.S.

answers from Portland on

i would assume they asked the obvious like if she is eating enough? No iron deficiency etc...I had a significant weight problem with my daughter when she was younger then that and it was only because i was nursing and she wasnt getting enough..... given that food intake is likely not the problem, i would almost be to scared not to get her tested. good luck and i hope it turns out ok for you!

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A.G.

answers from Allentown on

My 9 year old daughter was only 16 lbs. at 1 year and they too felt she might have Cystic Fibrosis... We had the test done (although there weren't any symptoms) and she was fine. Even now at the age of 9 she doesn't even weigh 50 lbs. yet... My 7 year old son weighs more than her. Some kids just tend to be small. I would have the test done for you own peice of mind. Just make sure someone is with you that can hold her down. My husband wnet and did that... I was in the room but couldn't have handeled it had he not been there to restrain her. Hope this helps!

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M.W.

answers from Boston on

Hi L., when I was carrying my almost-5-month-old, I found out I carry the Cystic Fybrosis gene. This is something new they screen for in pregnant Women. Did they screen you for that and did they tell you that you carried the gene? What I found was that if both parents carry the gene, the baby has a 25% chance of having CF. She does not have CF, and we never bothered having her father tested because it could have cost us over $300 if his insurance chose to not pay for it. Also, CF is a disease affecting digestion and breathing. Children with CF run a risk of dehydration due to excess sweating and there fore can not be out in the sun much, etc. If she is not having any problems in these areas, then why do they want to test her for it? You have not mentioned them wanting to test her due to anything except her growth. You should get lots of great advice through this site from other Moms.
With that said, have you searched online using keyword Stunted growth in children or such? I love having my computer...it helps me so much in seeking answers ! Get 2nd opinions, etc. How is her height? Do they find her weight to be proportionate to her height? Good luck ! P.S.If you were not tested and you prefer them not to take blood from her, have the screening blood test done to you first to see if you carry the gene. ~M.~

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H.M.

answers from Lewiston on

This is just my opinion. If you don't have her tested, first of all, you will always be wondering why she is so small. Second, if you do not have her tested and she has the disease, you will never forgive yourself for not getting her treatment sooner. If she is tested and does not have the disease, you can move on to other causes. PLEASE have her tested. For both of you. My heart and prayers are with you and your family. Please email me the results when you find out.

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M.B.

answers from Lewiston on

I had a friend that when he was a baby was really sick or something - not sure why they tested for it, but anyway he tested positive but yet he never developed the cough at all, he even was a smoker. He took pills to help with digestion but he stopped taking them as he got older. So I don't know if you can test positive and be a carrier? or if you can have it and have minimal symptoms? But I would have her tested for it, it can't hurt just to be sure.

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S.H.

answers from Portland on

Unfortuntately in this instance "what you don't know" could hurt your daughter. Get her tested and then you can start treatments. Do you know what can happen if it goes untreated? Maybe it's something drastically simple that a specialist can identify and her regular doctor can't.

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K.O.

answers from Portland on

Don't worry! My first daughter who is now 8 and only 48lbs was 18lbs til she was almost 2. I had SO much blood drawn from her little finger for every test they could do and NOTHING was wrong with her. As long as she is getting taller she is gaining weight even if it is the same amount. It really wouldn't hurt to have her check out.. It took me awhile to understand that. GOOD LUCK and I hope this helps!

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J.B.

answers from Boston on

One of the best ways to measure a child's health is by their growth and if your daughter isn't growing according to the normal scale/growth charts etc. you know something is up. My son was 17 lbs. when he was 4 months old - a giant - but just reading your post, you seem to be doing the right thing by taking her to doctors and specialists. I would follow my instincts on this one and just have the test done. If it isn't that, at least you can rule it out because you really don't want your daughter to be diagnosed with that - I have read about the short life span of people who have cystic fibrosis. I surely do hope your little peanut is not diagnosed with that and maybe she is just on the small side.

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D.C.

answers from Providence on

L., I went through a very simmilar thing with my daughter and of all the tests she went through, the one for CF was the easiest. It is painless and you get the results pretty quickly. If I remember correctly, it was just a sweat test. I always say it is better to know so you can deal with what you're dealt then to not know and lose precious time. Also, some times they are just tiny- it may turn out to be nothing or just an easy digestive/food absorption issue. I pray you find answers soon.

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C.H.

answers from Providence on

Hi L.,
When my son was 9 months old he weighed 19 lbs which was low but normal. Then a week later at Thanksgiving he came down with a cold after a few days I took him to the Dr and was told it's just a cold not to worry. He did get a little better then around in the week between Christmas and New Years he got it again this time when we went to the DR his weight dropped to 17 lbs and he had developed pneumonia. He was put on neb treatments and other medications. We dealt with this until he was 14 months old. That is when our Dr decided to get him tested for CF because of the cough and lung problem compounded with the weigh loss. He took the test which is totally pain free it just looks creepy and luckily he tested negative even with all the symptoms. He was then sent to a pulmonary specialist. She decided he has asthma and is allergic to a few things. We now have him controlled by neb treatments at the first sing of a cold and he has been great ever since. However his weight is still low he is 3 and weighs 28 lbs. the Dr has decide he is just a small child he takes after me not his father. I do have to be concerned that if he does get really sick again it is likely he will hospitalized for weight loss instead of the cold.

The Dr has recommended that we give him high calorie foods when I think he may be getting sick her quote "if he's getting sick and all he will eat is ice cream give him ice cream all day long for a few days to keep his weight on". On an everyday basis he still drinks whole milk and I even give him carnation instant breakfast shake everyday. He is a healthy eater he would prefer fruits and veggies over candy any day so I have to put calories into them by giving yogurt for him to dip the fruit into or melting cheese on the veggies for extra calories. He rarely gets a cup of water because it will fill him without any calories and he can't afford that. I make him yogurt smoothies, cream cheese on toast with jelly b/c he doesn't like the plain taste of cream cheese. I have to be creative but try to stay health too. Please let me know it this helps or if you have any questions. Sorry it is so long.
Good Luck
C.

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L.B.

answers from Providence on

L., some of the background information you gave is helpful. However, without knowing more history, I find it hard to give "advice". How are her eating habits, what does she eat, etc.. Anyway, My daughter was also born with E.Coli meningitis, still has neurological issues and also has had slow growth. From 3 months to about 12 or 15 months, my daughter had VERY slow growth. She turned 2 in December and weighs a whopping 23 pounds and I forget how many ounces. One issue we found Novalea to have is a severe soy and milk allergy. She also has a vomiting problem that we are still trying to figure out. I guess what I'm trying to say is to rule the small things out before any drastic measures are taken. However, if she is unhealthy, definately check everything!!! You are her mom and her best advocate, foolow your heart and your daughters leads. Those two things is what has kept my daughter alive (we were told she would not live past 6 months). Anyway, I know it is vague, but I hope it helps some. Just remember that no one knows your child as well as you do.

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L.S.

answers from Portland on

Hi. First I want to start off by saying I know how hard it is to think you're child may have something you know nothing about. My son was diagnosed with having ASD a month or so ago. I had a hard time accepting the fact that he may have it. I was scared to death on getting the testing done simply because of the diagnosis. I was terribly afraid of something I knew nothing about. Now that I can look back on things a bit differently I realize that was the best thing for my son and my family. Now that I have the diagnosis I can start understanding what is going on with him, and I'm able to get him the care he needs. I know how terribly difficult this must be for you, but just take a moment and think of the effects this may cause if you don't get her tested and she does indeed have it. If you know what she has then you can help her. You know, even though they suggested in testing her doesn't necessarily mean she has it. You may get a completely different diagnosis. You never know, and that's the most scariest thing of all. When it comes down to it, no matter what suggestions anyone gives you, it's you that has to make this decision for you and your family. Just think of all of the outcomes before deciding indefinately. Just make sure you can deal with whatever it is whether you decide to get the testing done or not.

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