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Something Wrong with my Baby -Parents With Experience Needed

ugh-a-lot

Member
Hi there, I decided to take a shot at this to see if anyone can say "Hey that happened to us and you ARE on the right track," or that I am worried over nothing this is not normal for diabetic children pre-diagnosis...

I'm not looking for "medical advice" but have been pulling out my hair about my 15 month old son. Doctors say a stage. Then my latest issue which is NOT a baby stage. Everything up until that point could technically be a baby stage. A very horrible version, but yes.

If you don't feel like reading you can skip... It's kind of long. Just a friendly warning. :)

For just under three months now my son has had serious sleep issues. The first week was hell, the second week.. the third.. on and on. At first I thought a sleep regression. But of all the sleep regressions examples and stories I read, I kept thinking " I wish I had it that easy!" My son would go to sleep like normal very fast, and then every night from 1-2 hours after peaceful sleep he would wake up. There was no way I could get him to sleep again.

There was some kind of tummy discomfort because he would stretch his legs and scream and fight sleep. At first I thought temper tantrums starting. He now has temper tantrums.. Not the same effect. Even if I gave him bottle to soothe (yes I was guilty of needing sleep willing to give a comfort bottle). It would seem to help for a few minutes, then droopey eyes, so close... but he would not sleep.. He went into delirium. Started babbling sounding like a drink baby babble.

He needs his bottle a lot at night I noticed. And I'm still at baby stage of trying to get him to like or accept more water than he does. And yes he urinates a LOT more bottles or not.

The neighbors started losing sleep too. For hours it went on and on. I took him out of crib and tried co-sleeping for his comfort thinking that would help. That was on the floor because I was afraid he would fall off the bed. Maybe an extra hour of sleep for me each night.

One night I rocked and cajoled and soothed from 8pm until 4:30 am. Another night I even tried the cry it out to my horror. Thinking no more options left. He could scream for so long and not give up. I heard the neighbors stomping upstairs and felt totally horrible "I was now the neighbor no one on earth wanted to live next to."

I did think hungry once and made the mistake of feeding my child at 1:30 am. Sure! Now I had a baby with an energy boost running though my house, delirious, droopy eyed, screaming and overtired and angry!

I also thought maybe a growth spurt too because he was looking taller but much thinner, like he was growing tall but not enough weight to match the height spurt. My son is pretty lean as it is, but I was starting to nick name him McRib. Our family doctor said his weight is fine and it's all just a stage after the first month and a half of this. So I thought OK it's nothing serious and I'll just deal and blackmail him when he is an adult, and as a teen refuse to let him sleep in because he proved as a baby that he doesn't need sleep.... And set off relieved that nothing physically wrong.

Basically praying for a miracle because on average he slept 4 hours a night accumulated and maybe 15 minutes in the day. Then relief starts coming and he will sleep mostly through the night in spurts (3 days or so then back) but still wakes whining and uncomfortable trying to get a position to get comfy type thing. Almost like a whelping puppy. Still needed a bottle at this point. But much more sleep. Enough for me to survive and be coherent.

This last Saturday morning he woke me up and WOW he smelled like he drank a bottle of rubbing alcohol. (impossible because I have this place seriously baby proofed)
I had read at one time in a mom forum about moms trying to get through a regression. One commenter mentioned to one mom be careful it could be diabetes. Which I ignored because I had no reason to think that was my sons issue.

Until the breath smell.. Then I realized... Even though my son was starting to sleep again, he gets really sleepy, even soon after a nap. Abnormally so. Eyes get droopy, starts swaying back and forth. Also grabbed on to fridge once and used it for balance. His appetite has slowed down. (could be a stage or teething too though)

And then this breath!!! It was only on Saturday. Now everything seems normal. My son has been smiling and happy today. And I'm happy about that because he has not been himself for so long. He's been just absolutely whiney, miserable, extremely leechy, angry, very quiet, and looking almost sad or depressed and so out of character.. (could also be from lack of sleep)

I called a nurse hotline. And asked about ketoacidosis and should I take him into ER after watching him closely and no other symptoms later. (other than serious whininess which was now common) I basically got a lecture about "I'm a bad parent and need to read more parenting books, and was told I that I didn't just have to bathe him at night, that babies could take warm baths in the day time too! No don't take him to the ER but take him to a doc next week." I was completely professional and rational, I couldn't fathom her complete disregard for the smell and nerve to treat me that way. And talk about other issues that were not even on the option block. Telling me to ask medical providers for sleeping tips.Did this woman possibly think I was so ignorant in irresponsible and clueless of a parent to not know how to know a million different sleep theories?

Can you believe that woman? I bit my tongue throughout that call thinking, it's recorded I'll stay profesional and let her hang herself and report! (will report her, have name and time called) I felt like telling her I should get an award or a hug at the very least because I don't know a soul in this country to help and have done this for this long and am still standing and still sane. (sort of) I'm SO tired.

So tired, I can't even cry! I started to cry about 3 weeks ago but my body was so physically tired about four tears made it out and I just stopped from not enough energy to let it out. On top of this I was already exhausted because I have had a looong long serious health ordeal which I put on hold. (i didn't mind) for my son. Also Wondering... If any emergency surgeries I had during pregnancy or medications could have triggered something like diabetes too... Not sure if that's something anyone has come across.

As an asthmatic I know certain types of meds can cause blood glucose issues. So why not anesthesia and long term antibiotics during pregnancy?

Didn't want to go into ER with out the full spectrum of symptoms and get more "it's a stage or I'm a bad parent" and decided I will somehow find out on my own. I bought ketostix testing sticks, but can't get a proper urine sample. And can't afford a blood glucose machine until payday. And if anything is out of whack you can bet your behind I'm going to be causing an uproar with my result.

I also didn't take him because that day he didn't have any of the other symptoms. Because I keep getting no where. And from what I have learned here, is that everything better be straight forward in the doctors faces. Nothing missing, or you are sent home. (as I was when pregnant in kidney failure stages) They did that for a long painful time and realized my baby and I were in serious trouble and rushed into emergency surgery. (their first response was morphine and sending me home for several weeks of agony. I afraid I was dying and my baby too! Literally begging them to do something!) So I really have no trust in the system.

On another thought this may have just been a stage and a freak smell??? My pharmacist was completely baffled why the nurse hotline would behave that way. He said that smell can be life threatening, which I thought if it prolonged. But his verification panicked me more! Finally two pharmacists in one place agreed I should do as I was and don't back down to these answers I' m getting. (the smell was gone the next day when I went to get sticks) UGH!

So am I on the right track? Should test on my own? Doctors are hard to get where I am. Months waiting list or very hit or miss with competence with so many..

So...

Is it possible from your experience of testing, that the alcohol smell can just be a freak thing and not diabetes? I can't see him getting it from starvation type acidosis. He ate the night before had milk for bed and during night as well. And he didn't drink the bottle of rubbing alcohol. This is coming now almost at the end of three months of "crazy house."

Oh! I cook very healthy for my son. No store bought sugar laden snacks, Ever! More veggies than fruits. Lean meats baked. He has never had Mcdonalds or any type junk food. Mostly organic if I can. Although the week prior to the smell? I was so physically drained and we ate "the standard diet most people do" Not healthy, lots of carbs, the quick home meals type food that most eat when not food conscious. Maybe he wasn't used to that type food thus the overload and smell.. I'm hoping!

I do have some hope.. The one pharmacist did let me in on a secret if the smell comes back. There is a certain emergency room that has several really good pediatricians and they will take us in the peds ER. He told me they are really god there and he told me not to go the the other hospitals hands down. This one is the only one with a peds ER. So there is some hope there.

Please tell me your experience if it is something like this! I would be so happy to have others with experience tell me from a parent perspective. Please no mean answers. I realy don't need it. I am just a concerened mother with a baby that has a serious issue. How serious? I am not sure at this point. But he deserves to be his usual happy, considerate, loving, curious, energetic self again.

Thanks for reading it you managed to make it this far. :-/
 
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you poor thing, you are going through hell, you might as well go to ER/A&E the odds of you getting any sleep is nil, I wouldn't wait for a next time
I would take your bub to a DR and also ask for a referral to a pediatrician for a complete examination to rule out anything serious.
our boy cried for 3 hours every night, 7-10 pm...It was initially a concern, but his health was ok..some bubs like to cry
you aren't going to be happy till this is sorted one way or another..better to be called an over concerned mum, than find out later that bub was sick
 
As well as diabetes, I'd be asking them to check for celiac disease. I'd be tempted to remove all wheat from his diet to see if that affects his symptoms.
 
As well as diabetes, I'd be asking them to check for celiac disease. I'd be tempted to remove all wheat from his diet to see if that affects his symptoms.

You know.... Hmmmmm Never thought of this option. Thinking now.. before the week of bad food we didn't really eat that much wheat based products. however, with as much as we were eating when I took the easy way out, It could definitely have made him worse if he is allergic or his body was not used to the gluten! And maybe even the small amount prior is a possibility if allergic. So I will cut it totally and see what happens.

Thanks for the input I would have totally missed!
 
You know.... Hmmmmm Never thought of this option. Thinking now.. before the week of bad food we didn't really eat that much wheat based products. however, with as much as we were eating when I took the easy way out, It could definitely have made him worse if he is allergic or his body was not used to the gluten! And maybe even the small amount prior is a possibility if allergic. So I will cut it totally and see what happens.

Thanks for the input I would have totally missed!
Glad I could give you something helpful.

One thing with going wheat/gluten free - learn to read labels. It's scary how much wheat is added to products you would never think would contain it. Salad dressings, condiments, sauces, etc. It seems to be in everything nowadays.
 
Newly diagnosed, allready have glaucoma, and retinaschesis, now blurring which brought alarm bells to my dr at eye clinic. Will the blurring of my eyes go if i stick to diet and treatment etc?
 
Glad I could give you something helpful.

One thing with going wheat/gluten free - learn to read labels. It's scary how much wheat is added to products you would never think would contain it. Salad dressings, condiments, sauces, etc. It seems to be in everything nowadays.

You're Right!!!! Thanks for the reminder... I have always looked for sugars, sucrose, corn syrup.. blah blah all the "oses" because sugar is in absolutely everything. So now I will be looking for lots more ingredients. I guess I will look double funny reading packages twice. J/k! But it will probably take me even longer to scour. lol
 
Newly diagnosed, allready have glaucoma, and retinaschesis, now blurring which brought alarm bells to my dr at eye clinic. Will the blurring of my eyes go if i stick to diet and treatment etc?

I actually can't answer you. I am not diabetic but am having problems with my baby that may have symptoms, and came to make this post so diabetics and parents with diabetic infants could answer some questions about their own experiences with diagnosis of their babies.

Maybe do a word search in the forum categories and I'm sure someone will have info you need. ;-)
 
Newly diagnosed, allready have glaucoma, and retinaschesis, now blurring which brought alarm bells to my dr at eye clinic. Will the blurring of my eyes go if i stick to diet and treatment etc?
Welcome to the forum Susyq. You will get more attention from forum members if you start your own topic. Hopefully @daisy1 will see your post and reply with advice for newcomers.
 
Welcome to the forum Susyq. You will get more attention from forum members if you start your own topic. Hopefully @daisy1 will see your post and reply with advice for newcomers.

Hi Suzyq and welcome. If you start your own thread I will post information for you on there rather than on here as @Indy51 suggests. It's helpful if you tag me.
 
Hello and welcome, I am so sorry to hear of what you are going through. It's can be so worrying when your child is so young with ongoing problems. I have Coeliac disease and found this regarding children with symptoms and diagnosis, as the symptoms differ greatly between adults and children.. I hope you can get the help, support and guidance you need for you and your little boy. Getting a medical condition diagnosed can be a form of elimination and can take time. Another good thing is to keep a diary, food, liquid, behaviour and sleep. It may be a little time consuming, but having the evidence in black and white to show medical professional's is half the battle, as a patten could be there, try and do as much as you possibly can for your little boy. We know our children better than anyone !!
Good luck and I wish you all the best, take care

RRB x



childrenv2.jpg


Coeliac disease in children
The classic symptoms of coeliac disease in children include:

• failure to thrive
• diarrhoea
• muscle wasting
• poor appetite
abdominal distension
lethargy
• change of mood and emotional distress.

Diagnosing children
Guidelines published by the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) and Coeliac UK recommend that children who have symptoms of coeliac disease and a blood test that shows high levels of antibodies may not need to have a biopsy to be diagnosed with the disease. Instead, a second antibody blood test followed by a genetic test can be used to confirm the diagnosis.

Professor David Sanders, Consultant Gastroenterologist, Royal Hallamshire Hospital, Sheffield, and Chair of Coeliac UK's Health Advisory Council, explains why a biopsy is needed to confirm diagnosis in adults:

These new guidelines reflect the improved accuracy and reliability of the antibody blood tests. The waiting time for biopsy may be several weeks and can be a factor in delaying diagnosis and starting treatment with the gluten-free diet. If there is no need for biopsy, the diagnosis process is much quicker, which is good news for the child.

Follow up for children
The British Society of Paediatric Gastroenterology Hepatology and Nutrition recommend ongoing monitoring by an experienced paediatric dietitian and paediatric gastroenterologist. Children should be followed up six to 12 months after diagnosis followed by a yearly check up after this. This should include an antibody blood test every year or less often. Another biopsy may be offered but is not carried out routinely.

Children should also have their height and weight checked to monitor their growth and development.

However, if you or your child’s symptoms have not improved or have got worse since following the gluten-free diet, speak to your healthcare team.

Helpline
0845 305 2060


 
Hi, sorry to hear your having a hard time with your little one. I also had a baby ( many years ago) that would not sleep .. Screeming most nights ..
Could I ask why you are so fixed on this being diabites.. Is there a history of diabites in the family ?
Teething, colic and hunger can also keep baby awake .. In my case I just had a baby that was attention seeking .. We gave him a lot more things to do durning the day .. (he had two very short naps durning the day) and then has an assortment of activities ready for the night that he played with .. I think the most he would sleep was 3 hours .. Could I ask why you cannot get a urine sample ? Is there also a potty training problem ? Would your chemist not do a finger blood test on your baby.
My child luckily did not have anything wrong with him .. But we thought at the time he must have .. Due to the fact he would not sleep ... On the plus side he could read and write..do basic sums before he started school.
Do you have a friend who could look after your baby for one night so you can get some sleep? A relaxed mum is a relaxed baby! Next time he smells odd take him direct to A&E then they should be able to see what the problem is.
Sorry I am not the person you wanted to answer this thread .. As my child did not have diabetes.. But hope it helps a little to let you know that not all children or baby's need a full nights sleep
 
Do any of the pharmacists near you do fingerprick blood glucose tests?

Round here, you can just walk in and ask them to do one. It might give you evidence, or set your mind at rest...

Good luck, and please keep posting to let us know how you get on.
 
1. I agree with above that it could be coeliac
2. My friend's son had something a bit like this and it turned out he was lactose intolerant and it all started up after he was weaned from breast milk.
3. My daughter had night terrors for years (always around midnight) and I didn't realise until much later that this can be a sign of night-time hypoglycaemia (which I also suffered from during the night until very recently when the diabetes started up)

I would be persistent with the doctors and insist on a full-check up. You won't get any peace of mind until you do. I also believe very strongly that when it comes to our own children we should follow our instincts, as nature intended. Keep at it!
 
I tend to agree with Enclave, I can vivdly remember my first child standing in the cot, rattling the bars and screaming her head off. I thought all sorts of things were wrong with her but they weren't.
Nevertheless one can't be too careful and you obviously need either reassurance that things are normal or to know that your worries are being taken seriously. You can't look after your child calmly if you are worried.
. Write down your concerns, perhaps in a brief diary form and discuss them again with your doctor,
In the meantime if you are worried about diabetes, you don't need to start pricking fingers to get blood. You can use a urine/ketostik on a nappy or in a sample from a potty
. This tells you how. Glucose spilling into the urine and showing up on the strip would be something that you should inform a doctor about.
http://www.stjude.org/SJFile/home_care_ck_urine_glucose.pdf
 
I really really do feel for you, and I am not saying this just for the sake of it but I have a 10 month old son myself and can feel what it would be like to go through all this, please take him to ER and regardless of what they say or comment get him tested thoroughly. I really hope you get to the bottom of this and your son feels better.

There are a lot of members on here some are doctors too I think I really hope if someone can tag them may be they can advise something as well. I personally feel sometimes doctors are just looking for a quick solution than to get to the bottom of things, I was told I had Vitamin B12 deficiency and through my own research I had all the symptoms of diabetes and I asked the doc to check me for that, but I suggest dont look too much on internet too as now I feel I have all the diseases in the world :)
 
Hi. You are right to be concerned. A finger prick test might be worth doing but not easy with a small baby; also you could try Ketostix for the urine. These are things the GP/nurse could do if you can convince them you think diabetes is posisble.
 
In the meantime if you are worried about diabetes, you don't need to start pricking fingers to get blood. You can use a urine/ketostik on a nappy or in a sample from a potty
. This tells you how. Glucose spilling into the urine and showing up on the strip would be something that you should inform a doctor about.
http://www.stjude.org/SJFile/home_care_ck_urine_glucose.pdf

I agree with Phoenix;

Please do that; glucose in the urine is a much better indicator than a finger test for blood glucose; especially in infants whose blood sugars can be quite erratic. If there is glucose in your child's urine then you need to get to your doctor as soon as possible because that means your child's kidneys are trying to remove glucose from the body; which is a classic sign of diabetes.

In any event go to ER/ your doctor as you are so concerned as that will at least give you some information and comfort.
 
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