I have a 5.5 year old that was admitted to the hospital 1 month ago with Hypothermia. His temperature was 33.9 (93) rectally when he was admitted. He developed hypothermia sitting on the couch in our living room fully clothed in pj's and a blanket. My 2 other children were fine. Since then he has had very low temperatures (aside from a strep infection that caused him to get very high fever for 3 days and then Scarlet Fever). He is not himself. He is clingy, tired, anxious. This is soooo opposite this kid. We have run numerous blood tests and EEG, EKG and they do not find anything. This child has a vascular ring repair that was 4 years ago. The blood tests keep showing low ph (7.1) capilary and venous on 2 seperate occassions, but urine tests and kidney tests appear fine. I chart his temperatures. His temperature at night is right around 97 (36) his daytime temps are slightly elevated 99.8 (37.7). We are grasping at straws to figure out what is going on with him and where to go next? Help.
Have you spoken to your child's cardiologist? (You mentioned he had a vascular ring repair 4 years ago - and to be quite honest, I do not know anything about that.) My son has an ASD (Atrial Septal Defect - hole in the heart) and I recall the doctor saying that if his temps drastically changed to call him and come see him. Have your doctors referred your son to a endocrinologist? I am wondering if he has any problems with his thyroid, pituitary or hypothalamus - since these centre's regulate the body's temperature. I am sure they know what is best to test, but just a thought. I have suffered from cold body temps myself since I was a child, and I didn't have any heart problems. I learned only about 10 years back that I had thyroid problems and a pituitary tumour. They only discovered this after seeing elevated Prolactin in a Fasting Prolactin blood test. It has to be specifically ordered to find this. (Done by my endocrinologist.) Then confirmed by MRI. So, While they are doing EEG's EKG's and probably CBC blood work, some tests have to be specifically asked to run to determine other problems. Keep on it mom, sometimes as I have seen on Mystery Diagnosis, we know something is wrong, but doctors tell us they can't find anything. Not finding anything, doesn't mean something isn't wrong. Mom's are their children's advocates. Keep at it, and don't give up, even if they say nothing is wrong. Saying nothing is wrong I have learned is only another way of saying, "I can't figure it out," or "I can't find anything wrong" which definitely doesn't mean something isn't wrong. If this isn't normal for him, and he is acting really out of the ordinary, something is up. I wish I had more suggestions, but all I can say is don't give up. In addition to anything I have mentioned, please keep in mind, that while I or others may have extensive knowledge in many areas, you should always seek professional medical advice from your own physician, as it pertains to medical conditions or concerns. Good luck, and if you have any other questions that I can help you with, please feel free to message me directly.
Sincerely, Sandi (Dragon1973) MedHelp Down syndrome Community Leader & Ds Group Forum Founder/Moderator
Thanks Sandi I really, really appreciate your response, just knowing that there are more people out there thinking about what it could be is comforting. I know I have to keep at it but it is exhausting hounding the doctors. I had to do the same thing from the time my son was 1 month old until he was 16 months when they finally discovered that he had the vascular ring. By the way a vascular ring is when one of the arteries to the heart instead of merging as it should with the other arteries during development remains and wraps (for lack of a better word) around airway or foodway or both. In my son's case he also had a double aortic arch, meaning 2 aortic arches - one that led no where and one that did what it should. The one that did what it should was on the right side so opposite of what we others have. The surgery changed my kids to be the wild energetic thing he is, however we have seen a dramatic turn in the temperment and temperatures and we just cannot figure it out. Everyone says about what you said "we can't find anything wrong." I feel like I am making my son a "sicky" by taking him in all the time but in my gutt I know something is wrong. I have asked several times for a referal to an endochronologist (even before this) as there was an incidental finding on one of his scans from 4 years ago of bilateral calcification of the adreanal glands, but they were normal in size and shape and therefore they did not do anything more about it. I will continue to push. Thanks.
I dont really have any answers for you but i wanted to say I know how upsetting and trying it is when doctor after doctor tells you nothings wrong and you know deep inside there is. Keep up the good work, make daily temp charts like your doing, record his other symptoms (by symptoms i mean like if he is cranky, pale or whatever) with each temp recording. Ask him what else he feels...does his belly hurt, does his head hurt,..., im not trying to see if you can find more things wrong, but if you can actually see if there are more symptoms than just low temp maybe that will point the doctor in a better direction? They are just suggestions, hopefully i helped...sorry i cant be more helpful though! Also, i would see if your insurance company demands a referral, i thought mine did and actually it didnt. If they say no then i would just look for one on your own time and go without the aid of the other doctor. Good luck and keep us updated!!!
Have you looked into dysautonomia? This is when the autonomic nervous system in not functioning correctly. The autonomic nervous system controls everything in the body that is involuntary(heart rate, blood pressure, digestion, Body Temperature?). Some peoples autonomic nervous system gets messed up after being sick(mono, virus,etc). It took us 3 years to get my son diagnosed correctly with this. He had lots of symptoms, but one was he kept having "hot spells". His normal temperature in 97 not 98.3.
Other names for this are also autonomic dysfunction and POTS(postural orthostatic tachycardia syndrome). There are two good websites to research this- dinet.org and ndrf.org.
Welcome to the MedHelp forum!
I am sorry to hear about your little one. From the details provided by you, it appears that he has low temperature to a mild rise of temperature. I understand a number of tests have been done. I can only list the possible causes. Maybe you can find go over the list and see what has been excluded. Low grade fever is seen in tuberculosis, SLE, rheumatoid arthritis, Polyarteritis nodosa (PAN) and other auto immune disorders, UTI, drug fever, sinusitis, glandular fever, otitis media, IBS, endocarditis, parasitic infestations, fungal infections, lymphomas and other cancers etc. This is also possible due to dehydration and anemia. Start giving more of fluids and a multivitamin pill daily. There can be several other causes like hypothyroidism, liver diseases, and adrenal insufficiency. Vit B12 deficiency causes feeling cold, tiredness, dizziness etc. Low intrinsic factor in gut that hampers absorption, pernicious anemia, parasites in the gut, diet poor in Vit B12, Crohn;s disease, IBS, or poor metabolism by liver are the causes behind it. Please consult a doctor to rule these out. Take a diet rich in Vit B12 which should include meat and animal products, cheese, such as beef, liver, salmon, cod, and eggs. Give him B12 supplements and breakfast cereals fortified with vitamin B12. Finding the cause is important. Also consult a cardiologist to rule out infection in the heart. Hope this helps. Please let me know if there is any thing else and do keep me posted. Take care!
Again first I want to again thank everyone for their support and for the list of ideas. My son seems to be feeling better but I am not ready to let this go. This is not the first time he has had low temperatures and ended up in the hospital. I spoke with his doctor yesterday and she would like to order a oxygen monitor to see if the low temperatures have any effect or coincide with low saturation. This morning his temperature was 96.6 (36.1). It is as low as it has been since I began taking it in the last week. I have been going through the list of possible illnesses above and most of them I can rule out immediately. His blood levels in terms of iron and other vitamins. He has been tested for food allergies including glucos and lactos. These tests were run because he has had loose stools since birth. We did a food journal and bathroom journal for 3 weeks.
There have been a few incidental findings: Human Growth Hormone at 40 (guess that is right at the bottom of normal). That was 7 months ago, but he is 113cm and 17.5 kilo so he is growing well. Another incidental finding is bilateral calcification of the adrenals (but size and shape were normal). That was 4 years ago. When he was admited for hypothermia he had high blood sugar (slightly) but a check later was fine. He showed egg whites in his urine about 1 month ago (same time as the first low ph). As mentioned he has a right aortic arch remaining after vascular ring repair (started out with a double aortic arch). He has a sacral dimple. He was tested for the chromosomal deletion 22q11. At least I think that is the one. He was tested for this because of the double aortic arch but he tested negative for this.
As you can see this poor kid has been around the block a few times with doctors and every time he feels better I lay low for a while not wanting to put him through more tests, but something is wrong with my guy and I know it. Thanks again for your help and time.
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