Undiagnosed Child

[nooneknows]

My child is 5 years old, has had type 1 diabetes since 17 months of age. Beginning about 7 months ago he had a sudden episode of breathing difficulties. He is too young to describe but he would take long deep breaths in, raising his shoulders and head during breathing, and would breathe this way 1-3 days at a time. This has improved somewhat, the episodes are much less frequent but he still has  constant shortness of breath, nausea, stomach pain and headaches daily, abdominal distention, constipation, itchy skin (feels like bug bites) unexplained arm and leg pain, and excessive night sweating. Beginning at the same time he has had a recurrent ear infection at least once a month.

He also can not stand to have his head touched or hair brushed because he says it hurts. His fingers and toes get very cold to the touch occasionally.  His blood sugars rise for no reason, he is not ketoacidotic, urine ketones are almost always negative except when  he has a fever (usually related to ear infection) Routine blood tests come back normal with slight elevation of %lymph.

During pregnancy I consumed aspartame and paxil daily, both of which I was not informed of the risks until late in pregnancy.

I have taken him to an allergist, ENT, cardiologist, and endocrinologist but no-one has any idea of what the cause may be. I am frustrated with "symptom treating" rather than finding the true cause and fear it will get worse before the true cause is found.

If anyone has any suggestions of possible conditions or testing I would greatly appreciate it.

Worried Mom
    

[nooneknows]

Thank you for the comments. Ketones have never been an issue connected with his symptoms, I always keep a close eye and the only time he has ever had them was during a bad illness. My son had been sick for almost a year. He had complained one day a few weeks ago and said that when he woke up all he saw was "a bunch of different colored flies flying everywhere,  he has also complained in recent weeks about the TV looking like it was flipping, or jumping up and down.

It was last May when all the strange symptoms began. I was trying to think of anything that had changed since last May when his symptoms began and the only change I could think of was an increase in his daily fluid intake because of hot weather, which was usually (because of his diabetes) either diet sprite or diet cola.

I have been doing more searching about Steven's symptoms and found that artificial sweetener can cause a lot of what he has been complaining of.
For the past 3 weeks I have been using Stevia as a sweetener for his kool-aid and he has had NO aspartame. Guess what...ALL the problems he had been having disappeared within just a few days of stopping the aspartame!! He has had No headache, No Nausea, No stomach pain, No vision disturbances, No back or limb pain, he is finally feeling better after being ill for so long.

I just can't believe it, it makes me sick to think about all the aspartame he has ingested, I was very skeptical of this being the problem and have heard others stories about them going to many doctor's with no diagnosis and improving after stopping the aspartame so I tried it and am absolutely dumbfounded that something like this that is supposed to be safe caused my child to suffer for so long.

[PaulMD]

Hi.

I'm sorry to hear that your child is experiencing all these at a very young age.  Just want to share my insights to your problems.

The labored breathing episodes may be a sign of ketoacidosis and when that happens he should be taken immediately to a nearby facility.  The vomiting, stomach pain and bloatedness may be a sign of diabetic gastropathy (high sugar levels eventually damages nerves, especially the ones supplying the bowels).  The pains may be due to damaged nerves too.  Chronic sugar elevations weakens the immune system and may predispose a person to repeated infections.

The bottomline is the sugars should be strictly controlled.  Managing a diabetic child entails a very good patient-parent-doctor relationship and you should not hesitate in discussing matter with your doctor to the very last detail.

I hope he improves soon and stay well.  The entire family should be strongly behind the patient in every step.  God bless...

[Jackie443]

Hi there.

I'm 20 years old and have had type 1 diabetes for about 12 years now. The heavy breathing is a clear sign of ketoacidosis. As is muscle pain, nausea, and stomach pain. The reason for the muscle pain is due to the fact that the ketones start to eat away at the fat and muscle storage, so you're child will feel pain and a sense of weakness. Also the sweating...yet another ketone sign. Another thing as well is ketones tend to attack the immune system, which would explain his recurrent ear infections. Rapid weight loss is another sign. There may be something wrong with the ketone strips you're using, so next time this happens, don't hesitate to take him to the ER for proper evaluation and get his insulin / diet monitored / adjusted.

Hope this helps.
Speaking from experience.