Smells like maple syrup...

Mrs.Cford · April 2011

not me - DD; I have heard of the women taking fenugreek saying this but I am not and it's not me who smells it's her!

This morning DH said jokingly that DD smelled like bacon and then I noticed that she smelled sweet, syrupy and he totally agreed - I googled it and found out that it is a symptom of a metabolic disorder when they have troubles processing protein.

I was trying very hard not to read into all of the symptoms listed but she seems to have more than a few of them and it made me nervous so we went to the pedi tonight and she is sending us to the hospital tomorrow for some tests to be sure. If it does turn out she has it then it is pretty easy to manage (mostly diet) but if we don't find out there aren't really any more warning signs, she could just stop breathing and die - terrifying!!!

Our pedi made me feel a little stupid for looking on the internet and reading into her 'symptoms' but I would rather be a worried mother than a grieving one!! Has anyone else experienced this?

DD will have to give a urine sample at the hospital tomorrow, are they going to have to catheterize her or is there another way?

lynnf2 · April 2011

Our daughter had a urine sample taken and they attached a sticky bag to her girly parts and was supposed to catch the pee. Worked decent, looked uncomfortable

emilysmommy2010 · April 2011

I believe another bumpie named Doremi's son also had urine that smelled like maple syrup. She might be able to offer some insight. My thoughts and prayers are with you and your DD.

Mrs.Cford · April 2011

lynnf2:
Our daughter had a urine sample taken and they attached a sticky bag to her girly parts and was supposed to catch the pee. Worked decent, looked uncomfortable

Thank goodness, I was hoping that they could do something like this - I hope they do - thanks!

Kate621 · April 2011

If they have to do a clean catch urine sample they'll use a catheter. Most tests just require the bag pp described. Hopefully it's nothing!

aluminium · April 2011

DS has a metabolic disorder that prevents him from metabolizing protein. It was discovered through the mandatory newborn screening test done at birth. I've noticed DS smelling sweet like syrup too, but I never associated it with his metabolic disorder. I guess it's something for us to mention to his specialists. So thanks for posting.

We have been for multiple tests, and will continue to go for lifetime maintenance. We do a heel stick twice a week, and occasionally we have to go in for an IV blood draw and urine sample. The urine sample has always been collected with a bag, and the IV blood draw is almost always faster and easier than the heel stick we do at home. Of course none of it makes DS happy, but he gets over it pretty quickly. It is definitely harder on the parents than it is on the baby.

Good luck. I know you're nervous and anxious, but it really will be over before you know it. Hopefully it's nothing. But if it is the disorder you read about, it will be a VERY good thing to have caught it this early.

MCC1010 · April 2011

I am butting in since someone mentioned this post to me. We are in the process of getting diagnosed with Maple Syrup Urine Disease (MSUD). Matthew is on his 3rd round of testing to determine the severity of it. We have been going to a clinic that speicalizes in genetic disorders. The doctors there have been wonderful in explaining the disease. I requested a urinalysis because the smell bothered me. I remembered that diabetics can have sweet smelling urine which is why I initially called the pedi. When the results came back elevated I cried for a few hours.

Here is a few things I have learned. Most babies are tested for this disease at birth. It is part of the newborn screening. You can ask your pedi to see if your child was tested for this. The geneticist we see that mentioned that the most severe cases appear at birth. If the symptoms started later on it can usually be monitered/controlled through diet, according to the geneticist. There are mild and moderate forms of the disease which the doctors are still learning about so don't be surprised if your regular pedi refers you elsewhere. For us, the smell started when we introduced meats. Was the smell always there or did it start recently?

Mama_SAS · April 2011

Step away from google!

DS is 4 and his urine has always smelled like maple syrup, but I never thought to worry about it until I heard someone else talking about Maple Syrup Urine Disease (MSUD). If you look it up it you will only find the worst case scenarios listed. If your baby is healthy now that means that if she has it then it's a very mild case because, from what my doctor told us, most babies with MSUD never leave the hospital. So take a deep breath and stay away from the internet.

DS had to have a fasting blood draw and a clean catch first morning urine sample, but he's old enough to pee in a jar at home. After a few different rounds of tests it turns out that he does not have MSUD or anything else, he just has syrup-smelling pee, even now. If he wets the bed it smells like syrup. He has some amino acids that are consistently low, but in a safe range and that's all that's off. So basically - syrup pee could be nothing at all.

Your pedi should not have made you feel stupid though. Mine was very concerned and supportive and admitted that she had no experience with it but was making many phone calls to ensure we got the correct tests sent to the correct labs and everything. I'm angry that yours wasn't more supportive.

Mama_SAS · April 2011

MCC1010:
I am butting in since someone mentioned this post to me. We are in the process of getting diagnosed with Maple Syrup Urine Disease (MSUD). Matthew is on his 3rd round of testing to determine the severity of it. We have been going to a clinic that speicalizes in genetic disorders. The doctors there have been wonderful in explaining the disease. I requested a urinalysis because the smell bothered me. I remembered that diabetics can have sweet smelling urine which is why I initially called the pedi. When the results came back elevated I cried for a few hours.
Here is a few things I have learned. Most babies are tested for this disease at birth. It is part of the newborn screening. You can ask your pedi to see if your child was tested for this. The geneticist we see that mentioned that the most severe cases appear at birth. If the symptoms started later on it can usually be monitered/controlled through diet, according to the geneticist. There are mild and moderate forms of the disease which the doctors are still learning about so don't be surprised if your regular pedi refers you elsewhere. For us, the smell started when we introduced meats. Was the smell always there or did it start recently?

You explain things so much better than I do.

MCC1010 · April 2011

Mama_SAS:
MCC1010:

I am butting in since someone mentioned this post to me. We are in the process of getting diagnosed with Maple Syrup Urine Disease (MSUD). Matthew is on his 3rd round of testing to determine the severity of it. We have been going to a clinic that speicalizes in genetic disorders. The doctors there have been wonderful in explaining the disease. I requested a urinalysis because the smell bothered me. I remembered that diabetics can have sweet smelling urine which is why I initially called the pedi. When the results came back elevated I cried for a few hours.

Here is a few things I have learned. Most babies are tested for this disease at birth. It is part of the newborn screening. You can ask your pedi to see if your child was tested for this. The geneticist we see that mentioned that the most severe cases appear at birth. If the symptoms started later on it can usually be monitered/controlled through diet, according to the geneticist. There are mild and moderate forms of the disease which the doctors are still learning about so don't be surprised if your regular pedi refers you elsewhere. For us, the smell started when we introduced meats. Was the smell always there or did it start recently?

You explain things so much better than I do.

hahahaha I was thinking the same thing about you. I'm glad you mentioned it could be nothing as well. I've just learned from the geneticist that there have been cases where the disgnosis is made but no big changes in diet are required.

OP - I've gone to different places to collect urine. To be honest I prefer they go in and get the urine versus the bag. I've run into problems with the collecting urine because the lab will say it isn't enough urine to test. One lab told me to collect it over the course of the day while another one told me it has to be morning urine and DS had to have been fasting.

shirls · April 2011

Does she smell like maple syrup all day? What were some of the other symptoms? I'm afraid to google now, but I have noticed that DS's morning diaper always smells like syrup. I've only noticed it with morning one maybe b/c it's so full of pee.

To the other PPs that have had MSUD checked out, do your LO's diapers smell like maple syrup all day? How strong of a smell is it?

MCC1010 · April 2011

shirls:

Does she smell like maple syrup all day? What were some of the other symptoms? I'm afraid to google now, but I have noticed that DS's morning diaper always smells like syrup. I've only noticed it with morning one maybe b/c it's so full of pee.

To the other PPs that have had MSUD checked out, do your LO's diapers smell like maple syrup all day? How strong of a smell is it?

The morning urine was the one I noticed. It smelled like he was dunked in pancake syrup. The pj's, sheets and blanket reeked of it. Like I mentioned before the smell started when we introduced meats. I didn't smell it during the day. When I met with the geneticist she took a swab, rubbed the inside of his ear and sniffed it. I found it odd but she said the ear wax will smell like syrup as well.

shirls · April 2011

MCC1010:
shirls:

Does she smell like maple syrup all day? What were some of the other symptoms? I'm afraid to google now, but I have noticed that DS's morning diaper always smells like syrup. I've only noticed it with morning one maybe b/c it's so full of pee.

To the other PPs that have had MSUD checked out, do your LO's diapers smell like maple syrup all day? How strong of a smell is it?

The morning urine was the one I noticed. It smelled like he was dunked in pancake syrup. The pj's, sheets and blanket reeked of it. Like I mentioned before the smell started when we introduced meats. I didn't smell it during the day. When I met with the geneticist she took a swab, rubbed the inside of his ear and sniffed it. I found it odd but she said the ear wax will smell like syrup as well.

Thanks for your insight. I'll have to check his sheets and PJs in the morning. I guess I'll be sniffing ear wax too. heehee Big Smile

eleigh9 · April 2011

I do not normally post on here but I noticed this post (while lurking) and thought I would add something..This sounds a little bit like PKU. My husband has this genetic disorder. I remember my MIL telling me he would smell like maple syrup when his levels of the amino acid he can't break down would get too high. I would certainly get this checked out right away because if it is PKU all those scary side effects are very preventable through diet as long as you start on the diet ASAP. My husband was diapgnosed with PKU at birth and all is perfect with him. I hope that I could help even just a little.

Mrs.Cford · April 2011

MCC1010:
I am butting in since someone mentioned this post to me. We are in the process of getting diagnosed with Maple Syrup Urine Disease (MSUD). Matthew is on his 3rd round of testing to determine the severity of it. We have been going to a clinic that speicalizes in genetic disorders. The doctors there have been wonderful in explaining the disease. I requested a urinalysis because the smell bothered me. I remembered that diabetics can have sweet smelling urine which is why I initially called the pedi. When the results came back elevated I cried for a few hours.

Here is a few things I have learned. Most babies are tested for this disease at birth. It is part of the newborn screening. You can ask your pedi to see if your child was tested for this. The geneticist we see that mentioned that the most severe cases appear at birth. If the symptoms started later on it can usually be monitered/controlled through diet, according to the geneticist. There are mild and moderate forms of the disease which the doctors are still learning about so don't be surprised if your regular pedi refers you elsewhere. For us, the smell started when we introduced meats. Was the smell always there or did it start recently?

It has not always been there, we just noticed it in the last couple of days but she has had more protein in the last few days than she ever has so that could be why we're noticing it.

Mrs.Cford · April 2011

Thank you for all of your responses.

She had her blood drawn and her pee collected (the just attached a bag - yay) this morning and they will send the results to her pedi who will let us know.

vicki0827 · April 2011

Ok, I am now thinking that I should call the pedi. DS often smells like maple syrup, but I didn't think such a thing existed. Does the smell come and go? We haven't smelled it in a few weeks now. I just figured that it was something he ate that put off the smell.

Mrs.Cford · April 2011

vicki0827:
Ok, I am now thinking that I should call the pedi. DS often smells like maple syrup, but I didn't think such a thing existed. Does the smell come and go? We haven't smelled it in a few weeks now. I just figured that it was something he ate that put off the smell.

I am not trying to scare anyone! I know google is the devil it was just such a pronounced smell and it doesn't seem to bring up any other reasons when I searched it so I called her pedi just in case.

I don't think that I have ever smelled it before... it was so strong yesterday but I can't necessarily say she smells like it today, who knows - I am having the blood work/urine tests done anyway so I am glad we will know but I will post what her pedi says - if there is nothing wrong with her it must mean that it is just a common thing after eating something?! We'll see I guess

Mama_SAS · April 2011

Mrs.Cford:
vicki0827:
Ok, I am now thinking that I should call the pedi. DS often smells like maple syrup, but I didn't think such a thing existed. Does the smell come and go? We haven't smelled it in a few weeks now. I just figured that it was something he ate that put off the smell.
I am not trying to scare anyone! I know google is the devil it was just such a pronounced smell and it doesn't seem to bring up any other reasons when I searched it so I called her pedi just in case.
I don't think that I have ever smelled it before... it was so strong yesterday but I can't necessarily say she smells like it today, who knows - I am having the blood work/urine tests done anyway so I am glad we will know but I will post what her pedi says - if there is nothing wrong with her it must mean that it is just a common thing after eating something?! We'll see I guess

It's good that you googled to begin with and found out that you needed to have tests done. I just recommended stepping away because the more I looked into it the more I was sure DS was going to have a seizure and drop dead that day. I was terrified until I found out that what I was finding was the worst case scenarios and that if DS was healthy at age 4 then he definitely didn't have severe MSUD. Same for your LOs - if your LO is healthy now then it's definitely not as severe as what you will find if you google.

If you do smell the syrup scent then definitely get the testing done, everyone!

Want a personalized experience?

Smells like maple syrup...

Re: Smells like maple syrup...

Choose Another Board

Search Boards