Discussions By Condition: I cannot get a diagnosis.

3.5 year old 30lb weight gain in a year! high sodium and mood swings

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: dadixichic
  • May 21, 2007
  • 11:16 AM

3.5 year old Female

Birthday: November 4th, 2003

· Has gone from 35 pounds May of 2006 to 65 pounds in May of 2007.

· Hospitalization: Was hospitalized Feb. 4th, 2007 – March 3rd, 2007 for excessive dehydration and renal failure. Spent two weeks in the PICU. Was on hemodyalasis for 3 days. Creatinine went from a 6 upon check in to the current of .7. Dr.s now believe that the hospitalization was exasperated by the week long diarrhea, but the cause was whatever else is going on with the current problems. Our endocrine team’s working diagnosis is a damaged hypothalamus. They have no idea what is causing the malfunction though as she has never experienced severe head trauma. The first MRI in March 07 came back clean. Suggested to repeat again in 4-6 months.

· High Sodium: has jumped around typically in the 160’s. Has been as high as 176 off the DDAVP. We are currently medicating with DDAVP to keep it down, but endocrinologist does not believe her to have diabetes incipites.

· Elevated Prolactin: Has been measured as high as 140 in March 07. One month later had gone down to 101. Started Cabergoline in May. Never took another baseline, but one week after starting medicine prolactin was at .4. We will continue cabergoline for two weeks and retest. If the reading stays low we will take her off the drug and see if it stays low on it’s own (because it was trending down anyway) or because of the drugs.

· Frequent headaches: Gets very specific locations that she will point to for a week or so and then the next week it will move and consistently be there. Usually over one of the eyebrows or directly between them.


· On head thin
· All else normal


· Very cold limbs
· Gets red patches on occasion
· Gets red under her eyes
· “Cradle Cap” all over scalp
· Bruises heal slowly
· Skin peels on hands and feet


· Goes through periods where she’ll spike a high fever at night and wake up in a pool of sweat between 4am and 6am (this will last for a few weeks and then out of the blue stop)
· Sweats excessively when nervous
· Very sensitive to outdoor temperatures. The slightest breeze and she says she’s really cold and wants her blanket wrapped around her (even when in the 90’s)


· When going through sweating periods doesn’t want to drink. Parents need to force liquids. She says “Yuck, tastes really bad”.
· When not in sweating periods she drinks much larger amounts.
· Urination correlates with thirst. Nights when she is drinking and not sweating, she wakes up in a pool of urine.


· Goes through wild mood swings, especially when sodium is high.
· Extremely shy, but not nearly as much when “in balance”.


· Will suddenly get VERY tired and ask to go to sleep, even shortly after prior naps.
· Cannot walk for more than 5 minutes or so without legs hurting to the point of tears.

Eating Habits

· Always has a tummy ache because she “thinks” she’s hungry. Mom doesn’t over feed her and in fact monitors caloric intake very closely since noticing the rapid weight gain a year ago.

Reply Flag this Discussion

7 Replies:

  • please read last 5 pages of "It's a mystery until we solve it" many having same/similar sx to your childevery ageboth sexesincluding myself 38yo nurse from upstate NY all her sx are there and many other parents experiencing same problems you are not alone...I'm here...mommy cat
    mommy cat 1654 Replies Flag this Response
  • This looks exactly like cortizone poisoning, perhaps from a cream? Hopefully not. Please start with my general advice at http://forums.wrongdiagnosis.com/showpost.php?p=45222&postcount=4Another strong possibility is damage from vaccinations. Please read www.drcarley.com and http://members.aol.com/doctorrmosk/articles/hidden.htm .. also perhaps www.tetrahedron.org/articles/vaccine_awareness/smallpox_vaccine_risks.htmlSome extras you may need to know: See http://forums.wrongdiagnosis.com/showthread.php?t=15263 about Lymes - tests easily fail to detect it. Here is a good M.E. site, http://www.ncf-net.org/NCFresearch.htm .. Ciguatera poisoning is often found in M.E. cases, general info at http://en.wikipedia.org/wiki/Ciguatera - even from Salmon. Another good M.E. site is http://knoxintegrativemed.com/chronic%20fatigue.htm - and DON'T believe the abject morons at http://www.cdc.gov/ncidod/diseases/cfs/treat.htmHighly upsetting stuff at http://www.dldewey.com/morgel.htm .. Please read Dr Staninger's full paper: http://www.dldewey.com/misc/stan.htm - "63 % of the patients diagnosed with Chronic Fatigue Syndrome (CFS) had a hidden lung worm, Cryptostronylus pulmoni cultured from their sputum. This species of worm is a nematode. Its male measures 250 nanometers, while the female measures between 750-100 namometers in length. (26) Currently, biological pesticide manufacturers are using nematode eggs as delivery systems of viral protein envelopes to corn, potatoes, and other agricultural feed materials that are used as feed for poultry, beef and domestic animals (cats and dogs)." .. I hope colloidal silver can fix this. Note that colloidal silver will not work while taking steroids.Try an electronic zapper, it actually works. See my post at http://forums.wrongdiagnosis.com/showpost.php?p=41730&postcount=6 - there are serious forums for this at http://curezone.com (2 for Dr Clark) as well as for colloidal silver, and for very many diseases.
    Curly Stooge 319 Replies Flag this Response
  • Curly...:o many,many,many tears... keep going...we need you...so many...everywhere... I Thank the "Powers that Be" everyday for our paths crossing on this journey I have begun Bright Blessings and may you find peace daily as you attempt to help us in your "fashion" Thank you does not fill the bill...there are no words carry on...mommy cat:)
    mommy cat 1654 Replies Flag this Response
  • Your daughter's symptoms are similiar to my own daughters symptoms. My daughter's diagnosis is late-onset central hypoventilation syndrome with hypothalamic dysfunction (LO-CHS/HD). With central hypoventilation the brain does not function normally to regulate breathing. Research congenital central hypoventilation syndrome on the internet. Congenital happens at birth. But children who are not born with this breathing problem and develop the problem later are said to have late-onset central hypoventilation syndrome. Most children with late-onset central hypoventilation syndrome also have a hypothalamic dysfunction that the children with congenital central hypoventilation syndrome (CCHS) do not have. My daughter's symptoms started around the age of 20 months. My daughter had a rapid weight gain around the age of two. Around the age of two, she was also demonstrating undiagnosed endocrine problems due to a idiopathic hypothalamic dysfunction. At the age of 30 months she stopped breathing at day care. She was revived and was in the hospital for further evaluation. An MRI was normal and all MRI's done later were normal. She had no history of head trauma or known infections of the brain. The first pediatrician and specialists at the first children's hospital tried to tell me that my daughter's only problem was too many calories. I was told that my daughter had obstructive sleep apnea caused by being overweight. The doctors failed to recognize the breathing problem as being central apnea and central hypoventilation syndrome. Abnormal endocrine test results were blamed on the respiratory failure, etc. Therefore endocrine problems were ruled out. I was told that my daughter's only problem was obstructive sleep apnea caused by too many calories. When I disagreed and told the doctors that there were symptoms and problems that they were brusing aside or ignoring, I was told that there were plenty of other children's hospitals and to go to another hospital. I did not trust or believe these doctors. When I returned back to our home from the children's hospital that was more than 100 miles from our house, I changed pediatricians. With the help of a new pediatrician and a different children's hospital it took several hospitalizations before getting a diagnosis. But finally at the age of 3.5 we received the diagnosis of late-onset central hypoventilation syndrome with hypothalamic dysfunction. Some children with Late-onset central hypoventilation syndrome with hypothalamic dysfunction have symptoms that are less severe than other children with this diagnosis. It could be possible that your daughter has a mild form of central hypoventilation (shallow breathing) without the stopping of breathing. Some of the symptoms you have mentioned for your daughter are symptoms of central hypoventilation. You might want to consider asking her doctors about doing a sleep study in a sleep lab. The hypothalmus does regulate sleep. Also, some of the symptoms mentioned could be related to hypothyroidism. My daughter was prescribed synthroid due to having tertiary (hypothalamic) hypothyroidism #3. Other symptoms for my daughter are elevated prolactin levels, sodium problems, growth hormone problems, syndrome of inappropriate antidiuretic hormone,and cortisol problems. My daughter did have vision problems such as strabismus that required surgery. Perhaps consider having your daughter's vision checked. My daughter had mood swings and behavioral problems caused by the neurological problems. She had thermal dysregulation, hyperphagia, polydipsia, pain hyposensitivity, and other neurological deficits. Doctors do not know yet what causes late-onset central hypoventilation syndrome with hypothalamic dysfunction. This is very rare and difficult to diagnose. But this is something that your daughter's doctors might want to consider since she does have symptoms of a hypothalamic dysfunction. I have been communicating by e-mail with a mother who has a son with late-onset central hypoventilation syndrome with hypothalamic dysfunction (LO-CHS/HD). This mother has done some webpages and blogs about her son's diagnosis. This mother could also give you my e-mail address if you would like to communicate with me as well as with her. These websites are:http://www.myspace.com/vanessa1973 or http://vanessawooten.blogspot.com/. or http://www.makeachildsmile.org/2006/prev 2006 sep3.shtml. There is some information on the internet about late-onset central hypoventilation syndrome with hypothalamic dysfunction that you might want to read. Good luck with your daughter's health problems.
    Anonymous 42789 Replies Flag this Response
  • My daughter was also diagnosed with the exact to extremely similar symptoms - known as ROHHAD Syndrome.you can find me at haveyroo.blogspot.comi hope all is well.
    Anonymous 42789 Replies Flag this Response
  • We have gone through similar experience with our own daughter (LO-CHS/HD). We would like to help. Please email us at mvn.breathoflife@verizon.net
    Anonymous 42789 Replies Flag this Response
  • many kids these days suffer from that weight gain factor. thing is, most kids today are very prone to early obesity or heart failure due to junk foods, no regular exercise that are mainly caused by being too distracted with computer games and others. thats why my boy, 4yo, we try to walk around the block every morning, and try to give him nutritious foods to eat. food supplements.
    TheGreatDivide13 2 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.