Tuesday, March 17, 2009

ROHHAD - Boy Diagnosed with Rare Disease Quits Breathing

Check out our beloved Mason on TV!!! Go to www.ksdk.com and click on the link "local boy diagnosed with rare disease suddenly quits breathing".


You can also see Mason at www.caringbridge.com/visit/masonbyrom

The news story has a video about him and his story!

We love you Mr. Mason!!!

Monday, March 2, 2009

Rituxan Side Affects

A list of common side affects:

Abdominal pain
Back pain
Black, tarry stools
Bleeding gums
Bloating or swelling of the face, arms, hands, lower legs, or feet
Blood in the urine or stools
Blurred vision
Chest pain
Cough or hoarseness
Difficult breathing
Dizziness, faintness, or lightheadedness when getting up from a lying or sitting position suddenly
Dry mouth
Feeling of swelling of the tongue or throat
Fever and chills
Flushed, dry skin
Flushing of the face
Fruit-like breath odor
Hives or welts
Increased hunger
Increased thirst
Increased urination
Large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or sex organs
Lower back or side pain
Noisy breathing
Pain or tenderness around the eyes and cheekbones
Painful or difficult urination
Pale skin
Pinpoint red spots on the skin
Pounding in the ears
Rapid weight gain
Runny nose
Shortness of breath
Skin rash
Slow or fast heartbeat
Sore throat
Sores, ulcers, or white spots in the mouth or on the lips
Stuffy or runny nose
Swollen glands
Tightness of the chest
Tingling of the hands or feet
Troubled breathing with exertion
Unusual bleeding or bruising
Unusual tiredness or weakness
Unusual weight gain or loss


Click on the below images to read the medical article regarding ROHHADNET vs ROHHAD.

Endocrinologists ROHHAD Diagnosis

This was the beginning of a ROHHAD Diagnosis for Haven

Symptoms Associated with ROHHAD

  1. Rapid-onset obesity - Gaining large amounts of weight in a short amount of time
  2. Failed growth hormone stimulation - ROHHAD children sometimes stop growing for a short amount of time or completely stop all together
  3. Polydipsia - Excessive thirst
  4. Hypernatremia - electrolyte disturbance that is defined by an elevated sodium level in the blood
  5. Hyperprolactinemia - abnormally-high levels of prolactin in the blood
  6. Hyperphagia - abnormal appetite and excessive ingestion of food, even to the point of gastric pain and vomiting
  7. Diabetes insipidus - excessive thirst and excretion of large amounts of severely diluted urine
  8. Hypothyroidism - condition in which the body lacks sufficient thyroid hormone
  9. Adrenal insufficiency - adrenal glands, located above the kidneys, do not produce adequate amounts of steroid hormones
  10. Hypodipsia - homeostasis is threatened by an abnormally low fluid intake
  11. Polyuria - polyuria is a condition characterized by the passage of large volumes of urine (at least 2.5 L over 24 hours in adults)


  1. Alveolar hypoventilation - insufficient ventilation leading to an increase in PaCO2
  2. Cardiorespiratory arrest - cessation of cardiac and respiratory functionReduced carbon dioxide ventilatory response
  3. Obstructive sleep apnea - pauses in breathing during sleep
  4. Cyanotic episodes - severe condition indicating a lack of oxygen in the blood supply.


  1. Opthalmalogic manifestations - most exhibit Strabismus
  2. Thermal dysregulation - episodes of hyperthermia or hypothermia
  3. Gastrointestinal dysmotility - constipation, colicky pain, and vomiting
  4. Altered perception of pain - does not feel pain
  5. Altered sweating - sweats constantly when not doing activities
  6. Cold hands and feet
  7. Bradycardia - resting heart rate of under 60 beats per minute
  8. Tumor of neural crest origin
  9. Syncopal episodes - self-limited loss of consciousness
  10. Hypertension - high blood pressure
  11. Somniloquy - sleep talking
  12. Somnambulism - sleep walking
  13. Voice Modulation - inability to control the volume of voice
  14. Enuresis - bed-wetting during sleep
  15. Hypotonia - abnormally low muscle tone
  16. Scoliosis
  17. Behavioral disorders
  18. Depression
  19. Flat affect - unable to show emotions