Who here is a doctor and willing to....

[hmschooling]

...toss around some ideas with me about my hypothermic toddler? He's got some issues going on and ER docs were baffled. Have an appt with his Ped in the AM and have no idea what to ask or what tests to push for or what of his history is even relevant. Could use some guidance from someone that may have a clue! Just going to tell about everything I can think of in his history...I'm desperate to figure this out!

 

He was in the er for localized abd pain and hypothermia (awoke in his room which wasn't cold). Pain is just to his right of the midline in upper belly. rectal temp was 94.4. CBC and electrolytes normal, glucose 73 middle of night, abd xrays clear, ears/throat and urine clear. Nothing showed w/anything. Other symptoms are fatigue, restlessness at night, waking thru night with belly pain, recent waking with leg muscle pain, extra moody. Daytime temp has been 97.8Aux, and last night his temp went down again-- rectal 95.3-- and he was restless and belly pain just the same as the night before. I didn't take it again last night, but I think it went a little lower. Oh, and he doesn't look blue, vitals have been normal except for his heart rate got a little irregular here and there and a little faster, and he isn't shivering at all, not even chill bumps. In fact, once he's back to sleep, he'll strip the covers off, but his temp is still low! I also don't know if the low temp is new along with the abdominal pain, or if we are just now noticing b/c of the new night time wakings with the abd pain. So it could have been here for a few days or a few months or longer!

 

He's 3yo. Born @37 weeks via VBAC, 7.8lbs and no issues. I had 2 early m/c before him and 3 after, suggesting something genetic--maybe relevant for this lil' guy?? He was a great eater and nursed well and very often, weighing in at 18lbs by 4months. He was always a high-strung, fussy, and gassy baby. His weight gain slowed drastically and he barely gained for months and is about 35lbs or so now. He has gone from 97th percentile to about the 50th or a little less. He has chronic stomach troubles that we think is related to particular foods, but not certain (citrus, all juice (but not all fruit), nuts (but not peanut/almond butter), possibly whole grains, ???). These stomach troubles come and go and it may be a few days of formed BM's, then a couple unformed ones per day, and up to 10 watery ones per day for a few days, then back to semi-normal for a while (generally a couple unformed per day). Then he might skip a few days altogether. His eating is unpredictable...pig one meal/day/week, then would rather starve another.

 

Hes a very moody, demanding, high strung boy now. Seems to have a button...fine and happy to mean and mad back to happy in a few minutes or so. Hes sensitive and emotional, very active, and intentional in being destructive, hateful/vengeful, and overly rebellious (i have 4 kids so can compare, all strong willed, but his behavior is off the charts). He is either fearless or ignorant of dangers (like walking into street, jumping off top bunk, diving off high places into the ground, etc.) or maybe just defiant since he knows these are not things he's allowed to do!

 

He's had a history of very high fevers, over 105, pretty bad febrile seizures with one episode. Most fevers have been unexplained, and siblings have had same thing- I did as well as a child. Family history of Malignant Hyperthermia, ulcers, breast and cervical cancers, heart conditions/disease, Hypertension, Hypotension, diabetes, sister with Osteogensis Imperfecta (collagen disorder inherited from bio-father, not same father as my son), possible other collagen disorder(s) (Elhers-Danlos suspected) from my side...think that's all.

 

So what do I need to say to the doc? Anything relevant here? What tests should I ask for? What conditions should I ask about? His temp just keeps dropping and I'm worried about the effects it will have on his brain and organs. I am so desperate for some answers! Please offer me some advice on how to approach this and be taken seriously.

[alpidarkomama]

A complete, total shot in the dark, but has Crohn's disease been considered??

 

So sorry you have to try and figure this out. My husband is a walking (not-too-serious) medical mystery too. It can be so maddening!!!

[kalanamak]

I know peds from nothin', but in adults we worry about something wrong with thermoregulation in the brain.

 

Personally, I'd go to a good "university" based clinic system. This is odd enough I'd go to the people who are used to seeing the unusual.

[Ottakee]

I would certainly ask to be sent to the nearest major children's hospital. They know more, see more, and can run the tests right away.

 

The low body temp makes me think thyroid. That is super easy to check--just have them do the sub thyroid tests too.

 

I would also get a food allergy panel done ASAP and then see a GI guy about possible gluten intolerance, crohns or other GI issues.

 

A CT of the brain might not be out of line either--esp. with the temp. regulation, mood issues, history of febrile seizure, etc.

 

Hope you get some answers. I know how it is as my girls are the "hmmmmmmmm, that's interesting" kids at the local children's hospital.

[Mommyof4ks]

Did they do blood work? Maybe he has an infection of some sort? I don't know if the body temp would go back up though if that were it. One thing my son's oncologist worry about is a low temp due to severe infections. The belly pain may be that, an infection in there somewhere? Is he on any meds? My son takes steroids for 5 days a month, and those bring his body temp from a normal 97.5 down to 95.5 during those 5 days. Maybe he has allergies to foods which is causing him to be in pain and it comes out as him being high strung? IDK how that would relate to the body temps though. IDK, just thinking about the things that have happened to my kids. I am not a doctor, just a mom with strange kids lol.

[Leanna Tomlinson]

I'm not a Dr., but was a pediatric RN for years.

 

I know someone with Ehlers Danlos, and in some way or another she has every issue you have listed here. I know there are different types of Ehlers (I think hers is III) She's a 42yo woman and was diagnosed about 15 years ago.

- she has chronic stomach trouble

-she can't keep her weight up

-has always had trouble sleeping

- her base temperature is 97 - it's hard to convince Dr.s that she has a fever at 99.5

-she has had issues with moods/depression

- I could write more...

 

She is always the "mystery patient" and IMHO has been mis-managed since she moved away from a major city and her Ehlers Danlos specialist. I think you need to get the Ehlers Danlos confirmed and if it is confirmed, your son needs to be under the care of a Dr. who understands it.

 

If your son is not being managed at a major pediatric hospital, I think you need to find one as soon as possible. Many times children like your son with different systemic issues spend years having "band-aids" put on their problems until some Dr. is willing to look at the whole picture. These complete work-ups go much more smoothly in a university based peds hospital. I would possibly want to ask for a Genetic work-up, a GI workup, and a Neuro workup - or at least an EEG.

 

I pray you get some answers.:grouphug:

 

Leanna

[hmschooling]

Thanks everyone! We actually live about 10min. from Arkansas Children's Hospital which is one of the top children's hosp.s in the nation. Their primary care clinic stinks, but we have loved their specialists clinics.

 

I'll ask for neruo, GI, food allergy, and possibly genetic workups and see if we can go ahead and get a look in his brain via CT or MRI (not certain of the appropriate one in this case) and check his thyroid--abdominal CT or MRI would probably be good too. And I want to search for localized infection that wouldnt show in the bloodwork they did. I'll likely ask to be referred to a pediatric internal med doc since they commonly deal with the unusual and complex/multi-system stuff...maybe there's not just one diagnosis, and I dont want the doc that will try to make it all fit one thing if it doesnt actually fit.

 

please excuse punctuation and capitalization errors...im one handed pecking to type while i feed my 3 week old :001_smile:

[Renee in NC]

Thanks everyone! We actually live about 10min. from Arkansas Children's Hospital which is one of the top children's hosp.s in the nation. Their primary care clinic stinks, but we have loved their specialists clinics.

 

I'll ask for neruo, GI, food allergy, and possibly genetic workups and see if we can go ahead and get a look in his brain via CT or MRI (not certain of the appropriate one in this case) and check his thyroid--abdominal CT or MRI would probably be good too. And I want to search for localized infection that wouldnt show in the bloodwork they did. I'll likely ask to be referred to a pediatric internal med doc since they commonly deal with the unusual and complex/multi-system stuff...maybe there's not just one diagnosis, and I dont want the doc that will try to make it all fit one thing if it doesnt actually fit.

 

please excuse punctuation and capitalization errors...im one handed pecking to type while i feed my 3 week old :001_smile:

 

Does he have gluten issues? Has he ever been tested for Cystic Fibrosis (there is a type that involves the digestive system, not the lungs.)

[hmschooling]

We are being sent to the Diagnostic Team at Ark Children's Hospital. Doctor suspects glandular or endocrine problems. So thyroid, pituitary, hypothalamus or perhaps liver/metabolic problems. We'll be seen next week and will be getting lots of tests and will be seeing several specialists from genetics to endocrinologist and more. Until then, we just keep his temp stable at night.