Croup-Severe Acute Stridor 12 Times- 3 year old

[Kyle3]

My 3 year old son had has 12 so called "croup" attacks since he was 14 mo. old.  Always occuring from Sep. - May.  All are severe, with the most severe ( admissions - trauma room ) have been in the spring.  We have lived in 2 houses, occuring in both.  His attacks always occur while he is sleeping.  In most cases they come with out warning signs or cold symptoms. He has been seen at Hasbro Children's Hospital and Boston Children's Hospital.  He has been seen by 2 ENT's in which they did a Broncoscopy and a Cinfloroscopy- both showed a normal airway.  He has had several x-rays only showing subglottic narrowing during an attack.  He has seen a pulminoligist because he also has asthma.  He has been to a GI to rule out reflux - although no testing was done.  He is now on reflux medication as a trial although he has no signs of it.  He has been allergy tested by 2 different allergists only to show positive for cockroaches.  He takes Singulair and Flovent daily, Xopenex as needed and has been on pulmicort, Zyrtec and nasonex.  This last Croup attack Tuesday was a 911 call.  It came on with in an 1 hour of us checking on him in bed.  He was in severe respitory distress and had to be given Epinepherine 4 times at the hospital.  He also has Decadron on every attack.  This was the most severe as he usually can recover from 1-2 doses of Racemic Epinepherine.

Please help us!  He was very unstable this time and we are scared.  He is now going to see a neauroligist for an EEG.  No Doctor has seen this so severe.  If any parent can relate please comment.  We don't know where to turn.

[National Jewish]

This is obviously a very frightening problem for you.  Making a diagnosis and treatment plan for this type of problem is quite complex.  I would suggest you consider a visit to us at National Jewish Medical and Research Center in Denver, Colorado.  We see and deal with this type of problem from individuals from all over the country on a regular basis.  Our approach uses the skills and expertise of a broad team that work together to solve complex problems.  If you would like more information about what we might be able to do, please call LUNG LINE® at 1 (800) 222 LUNG (5864).

[ozark]

how did they diagnos the subglottic narrowing during an attack?   it only occurs when he is sleeping? my thought is it may be mechanical......are the attacks without wheezing or mucous?  does he have stridor?  the narrowing part makes me think of an abberant vessell that may compress his trachea when he sleeps which i would think they would have picked up..sometimes a barium swallow will pick this up.... or he may have  some type of sleep apnea.........if he has some breathing issue at night such as apnea it may trigger his croup attacks....reflux is another possibilty because  if it happens at night it can put pressure up near the trachea.........the big puzzle is it happens only sept - may which makes you think of allergies but as you said its only to cochroaches ....has he ahd a sleep study done to see what happens at night time that may cause this?       good luck and keep us posted

[Kyle3]

Thank you ozark for responding.  They determined subglottic narrowing with an x-ray taken during an attack.  However he does not show any narrowing when he is not having an attack.  The attacks only occur when he is sleeping and do not have any mucus.  The wheezing usually begins after an attack (4 plus hours later ).  He always has severe stridor on both inhalation and exhalation.  This abberant vessell that you mention, could this have shown up on a broncoscopy?  I don't know much about sleep apnea but I do know that in my sons case he only begins to breathe with epinpherine or decadron.  The decadron takes 4-5 hours to kick in and we sometimes rely on cold weather.  However it has to be 20 degrees or lower to work.  In the case of this last attack weather could not have helped.  It was to severe.  Regarding the sleep study, we have an appointment with the Nero doctor and a sleep study was mentioned.  We will take any information that one can offer as this case is very rare.  What is your medical background?

[Concerned lady]

The LUNG LINE nurses will give you good advice. Definitely continue to call 911 when you need to!

You should ask the LUNG LINE nurses if they think your child should be seen at Nat'l Jewish Medical & Research Center.  

Here are some ideas you can consider trying, in case pediatric gastric reflux is a factor. If your child's doctors have no objections, try these ideas:

Some TIPS about INFANT GERD & COLIC:

Check these ideas out with the doctor who is seeing and helping your infant or child, before trying the ideas. The sources of these ideas will be listed at the end.

(1) Fresh breast milk from the mother when possible, as long as mother eats VERY HEALTHY FOODS, and eats in comfort, and not in a rush, not when angry or upset, and mother avoids foods that the baby may be SENSITIVE TO. La Leche knows about breastmilk banks, if nursing is not possible.

(2) FOOD SENSITIVITIES, FOOD ALLERGIES, & FOOD INTOLERANCES can often cause or worsen GERD!  

a) Nursing mothers should avoid drinking cow milk, which is more allergy-producing (allergenic) than goat milk. Nursing mothers can (with doctor permission) drink catnip tea, fennel seed tea, etc. which would go into the breast milk, often relieving colic. Babies and nursing mothers should AVOID MILK FROM COWS (can cause infant diabetes, colic, GERD, etc.)

b) Raw, fresh, organic GOAT MILK (if your doctor says it is OK), from someone you know, who takes very good care of the goats, so the milk is safe, is sometimes better tolerated than cow's milk.

c) Some babies have CELIAC DISEASE (GLUTEN INTOLERANCE), and must avoid gluten completely, in their food, and in milk from the nursing mother. Nursing mothers can try a gluten-free diet for a few weeks to see if this helps, and make sure the baby is not eating or drinking anything that contains GLUTEN.

Nursing mothers and babies can avoid the following glutenous foods: WHEAT, RYE, OATS, BARLEY, BUCKWHEAT.

BROWN RICE (organic is best) and CORN are gluten-free, but many are allergic to corn, so avoid all corn products, including corn-syrup (a sweetener). READ LABELS CAREFULLY!

Millet may be gluten-free, and agrees with some Celiac Disease patients, but is not tolerated by other Celiac Disease patients.

For some Celiac Disease patients (babies included) it is best to AVOID ALL GRAINS TEMPORARILY, and then try organic brown rice, later on. Recent data shows that Celiac Disease is found in 1 out of 150 people (not rare at all!). If the baby has ancestors from Ireland, England, Scandinavia or nearby areas, there is even a higher chance of having Celiac Disease.

Untreated Celiac Disease can cause or worsen GERD. The treatment for Celiac Disease is a gluten-free diet, plus nutritional supplements (vitamins, minerals, etc.) prescribed by the doctor.

d) Discuss with your pediatrition, whether soy products are OK or not for the baby. Soy is OK for some babies, but other babies do not tolerate soy, and should avoid it.

e) To find out what foods your baby may be allergic to, sensitive to, or intolerant of, please see link "AA", at the bottom of http://cantbreathesuspectvcd.com/links.html. This "AA", is a link to Dr. Kenneth Fine's (MD) "EnteroLab", which does special stool testing (analysis). This is often more accurate (and is non-invasive), than intestinal biopsies (which are invasive). The link to this website is:
http://www.finerhealth.com

f) If the baby may be lactose (milk-sugar) intolerant, ask the pediatric doc about possibly pre-treating breast milk or goat milk with lactase enzymes to pre-digest (break down) the lactose (milk-sugar).

g) Avoid all artificial ingredients. Read labels carefully.

(3) If the baby has ever taken antibiotics, the baby may need to have (drink) BENEFICIAL (good) EDIBLE BACTERIA (called PRO-BIOTICS) to replace the good bacteria in the large intestine, that were killed off by the antibiotics.  

The ETHICAL NUTRIENTS  company sells an INFANT/NURSING MOTHER formula of BIFIDUS INFANTUM probiotics, called DAIRY-FREE, MAXI-BIFIDUS, that has only rice maltodextrin (supposedly gluten-free) mixed with the Bifidus infantum powder. This is a milk-free preparation, and can be very helpful to treat or prevent yeast infections (like Candida albicans/thrush, etc.) in a baby that took anti-biotics. Look in the refrigerated section of good health food stores. Check with your pediatric doc, and follow label directions carefully. The store can order it, if not immediately available.

(4) Avoid tight diapers, which can cause a gastric reflux episode. Keep diapers loose.

(5) Avoid any pressure on the abdomen or stomach area of the baby, including the sitting position. Either hold baby upright, after each feeding, or have the crib tilted/slanted at a 30 degree angle, with head end higher (elevated) than feet. Some doctors feel that having the baby in bed with mother can help also, so that the baby feels more secure, and mother can see quickly, if the baby is having any BREATHING problems, DUE TO A GASTRIC REFLUX EPISODE. Quickly recognizing and treating breathing difficulties, can help to prevent SIDS (Sudden Infant Death Syndrome), caused by an infant GERD episode. Ask your baby doctor (pediatrician &/or pediatric pulmonologist/lung doctor &/or pediatric GI/Gastro-intestinal doctor), about this.

(a) Keep head of baby higher than feet, by putting blocks a few inches thick, under the head end of the crib, making the crib tilt/slant, at a 30 degree angle, with head end higher than feet.

(6) Check with your baby doctor about which positions are safest for the baby, when lying down. Some people think that lying on the abdomen can put a baby at risk for SIDS (Sudden Infant Death Syndrome). There is disagreement about what are safe positions.

(7)For reflux &/or colic: Two books I read (see sources) recommend using tiny amounts of the herb Slippery Elm inner bark powder, which can be mixed with good quality well or spring water (avoid distilled water, because it has no minerals at all in it), or with breastmilk or with goat milk. Slippery Elm is soothing, coating, healing, and nourishing, AS LONG AS THE BABY IS NOT ALLERGIC TO IT. (Check with the doctor first).

These books also recommend Marshmallow root powder (mixed with water or safe milk), if baby is not allergic to it. (Ask doctor first).

These books also recommend making a weak tea out of the SEEDS of FENNEL, or DILL, or CARAWAY, or, a mild CATNIP (herb/leaf) tea. This weak tea can be taken by the baby AND/OR the nursing mother. (Ask doctor first, about trying each of these alone, and then maybe a combination).

(8) One website (see sources) had a father recommend a very TINY amount of the spice ginger, mixed with water or safe milk, for his baby that had GERD (Gastro-Esophageal Reflux Disease).

(9) Keep baby away from any CIGARETTE SMOKE. Second-hand smoke can cause a GERD episode in a baby!

(10) It can be VERY HELPFUL to KEEP IN PHYSICAL CONTACT with the baby, ESPECIALLY WHEN FEEDING (NURSING, ETC.), which is reassuring to the baby, and promotes better digestion.

See the sources for more information.

Here are some sources:

(A) The Wise Woman Herbal Childbearing Year, by Susun S. Weed (1986). Ash Tree Publishing, Woodstock, New York

(B) Back To Eden, by Jethro Kloss (1939), Loma Linda, California

(C) Prescription for Nutritional Healing, by James F. Balch, MD and Phyllis A. Balch, CNC (Nutritionist) (1997), Avery Publishing Group, Garden City Park, New York

(D) Reflux Digest-Spring 2000, at http://www.reflux.org/reflux/paghomfa.nsf/Pages/digest4-1.htm

The present name (2002) of this parents' support group is : PAGER (Pediatric/Adolescent Gastroesophageal Reflux Association), and their website has a parents forum, at http://www.reflux.org/

(E) Conservative Therapy, The Best Way to Deal With A Baby With GERD, by Tatiana Bidikov, MD (But, DO NOT PUT BABY ON ABDOMEN, UNLESS YOUR DOCTOR SAYS IT IS SAFE!! Some doctors think baby lying on the abdomen could cause SUDDEN INFANT DEATH SYNDROME (SIDS). ASK ABOUT PUTTING BABY ON HIS OR HER SIDE, AND WHICH SIDE IS BETTER, if OK with your pediatrition.)
http://www.ccmeds.org/bidikovtgerd.html

(F) Go to a forum called Peripheral Neuropathy, at http://www.braintalk.org/  and write a message to a mom "JCC" who knows much about Celiac Disease. Look for topics/threads by "jcc" about FOOD SENSITIVITIES CAUSING MALABSORPTION. Read JCC's links to websites of Dr. Fine, who is an EXPERT at diagnosing and treating Celiac Disease, and other food sensitivities & intolerances that can lead to INFANT GERD. See (G) below.

(G) "EnteroLab", a laboratory created by Dr. Kenneth Fine, MD does special stool tests (you send in a stool sample from your child), to accurately tell you what foods your child may be allergic to, sensitive to, or intolerant of. Then, avoiding these foods can often greatly help to lessen gastric reflux! Check with your child's doctor. Dr. Fine's website is at http://www.finerhealth.com/ . See (F) above.  

(H) National Vaccination Information Center (NVIC) has an informative website about the risks & dangers of vaccinations, including SIDS (Sudden Infant Death Syndrome). Their website is at http://www.909shot.com/

I mention brand names of some things that we have used and like, or that others have recommended to us. However, we get no money and no compensation from the companies mentioned.

These tips and gastric reflux tips for children & adults are found on webpage 10 of http://cantbreathesuspectvcd.com

You can adapt some of the older children/adults' gastric reflux tips to your child, if some of these tips apply, with your child's doctor's approval.

Sincerely, Concerned lady
http://cantbreathesuspectvcd.com

[Concerned lady]

You can telephone a LUNG LINE NURSE, at 1-800-222-LUNG(5864), Mon-Fri, 8am-4:30pm (Denver, Colorado time).

If there might be some indoor air pollution, in your home, you might possibly need (check with your child's doctors):

--a warm mist vaporizer (no medicine added), but not too close--keep about 7 feet from the face

--an air cleaning machine, such as a negative ion generator (operate this device in another room, adjacent to where your child sleeps). (Some sensitive children have bad respiratory reactions to the resins in HEPA filters.)

These 2 ideas are discussed in "some sinus tips" on page 10 of http://cantbreathesuspectvcd.com

Scroll down past the nasal irrigations instructions, which are for older children & adults, to get to the other "sinus tips".

To read about possible indoor air pollution, please look at webpage 5 of http://cantbreathesuspectvcd.com

This can even include the very bed your child sleeps in! New mattresses can often "outgas" toxic fumes.

Were the 2 houses very new, or very old? (See webpage 5 for info about the indoor air pollution hazards of both new & old homes.)

Sincerely, Concerned lady

[Kyle3]

Thank you Conserned Lady for your comments.  Although my son is 3 years old now - he is not having breast milk... he drinks whole milk.  He also has been out of diapers for a year but we are careful of tight pants etc.  I also called the lung line
yesterday and I am waiting on a call back.

Soy came up as a questionable allergy because it's in many chips.  He had 3 attacks the day after a holiday or Birthday party.  However he has tested negative to soy allergy.  The allergy tests in children under 6 can be false as well.

Regarding Gerd, he has never shown signs of Gerd.  He didn't spit up as a child and he never burps. He is constipated often if that means anything.   He also had a white stool 2 days last week and is being checked for liver function and hepatitus (hepatitis).  He shows no other signs of problems- not jaundice-nice color.

This winter we added humidifiers to every room.  The reason was that he never has an attack in the summer.  Only from Sept. - May.  Which is another reason they are shying from Gerd, because it doesn't stop in the summer.  We wonder if the humidifiers have helped a little because he has had 3 attacks since January from this year... however this last one was so severe, it's hard to say.

We have been in this current home for almost 2 years.  It is 25 years old and he has had 11 attacks in it.  We have had our ducks cleaned and tested for molds- no mold was found.  They were also treated for molds for 4 years.  We put in a dehumidifier in the basement.  The home has new wall to wall... not hard woods?  We have one dog who is 12 yrs old and does not go in his room.  Our other house was very old with a dirt basement... one of the reasons why we moved.  However our new home is in the woods with a swamp approx. 100 feet from the house.

His mattress is a plastic crib mattress that is in a plastic bed.  However he sleeps with us now and has had an attack in any bed, including his.

[ozark]

has your son had an immunological work up? Does he have any sinus problems? With what you say re the time of year it happens, it seems to go along with an allergic reaction.......as you said the humidifiers seemed to help but the last one was severe....they can also be a culprit but i'm sure you take extra precautions re cleaning them...the only other thing i can think of is something in the house that he comes in contact with ie rugs, dog dander or something the dog has been in contact with outside etc, that ends up on his body and hair and when he sleeps it is more concentrated on his pillow and body and he reacts to it because he is breathing it in.......I dont know if he gets a bath and head wash every night before he goes to bed, but maybe trying this and keeping his sheets,blankets and pillowcases extra clean might help...its worth a try.....my other ?...Does he drink alot of milk? sometimes you may get some pale stool after having alot of milk..............

[Kyle3]

Thank you Ozark again for responding.  I do not believe he has had an immunological work up.  He was seen by an Allergy/Immunology Doctor at Boston Children's Hospital??  Is this done with a blood test?  He is in the process of having many blood tests now.  No he does not have any sinus problems.

Regarding milk- sometimes he will have 2-3 glasses in a day.

[ozark]

Blood test are usually done for an immunolical issue...Have they ever treated him with oral steroids?  Have you tried an air purifier in his room? Does he have any symptoms during the day re his asthma before these night episodes occur or coughing, choking spells?  Have they done any food allergy tests?  I hope all goes well with his work up and you get some answers soon...i know i'd been frantic if i had to see my child have these episodic attacks and breathing issues..............keep us posted

[Kyle3]

Thank you again Ozark for your information and concern.  He has been on Orapred, Predisone, and he gets Decadron every attack.  We do not have an air purifier in his room.  

He has never shown symptoms such as asthma prior to an attack.  His Asthma seems to follow an attack for a week or two.  On attack he choked on Cashews.  Now we do not give him any nuts in fear of an allergy.

He has had ***** tests for food allergies.  All negative.  Tuesday he is going to have more intradermal tests.  He is also having a blood test for food allergies.  This has not been done before.  The 3rd Allergist that we are going to see ordered the test.

What do you think about VCD?

[ozark]

i dont know much re vcd but that could be a possibility....some times you can have inaudible wheezing with just maybe slight shortness of breath before you get into trouble.....i didnt know my daughter who is 11 was wheezing before she was diagnosed. her only symptom was some heavy breathing with exerecise plus shes a little overweight so i thought it was that....i happened to use a stethascope on her one day and i couldnt believe how much she was wheezing.......no cough or anything......she tho is allergic to everything we found out, mostly outdoor things....She always had a stuffy nose and ear infections...........I'm sorry i'm out of thoughts re your son ...he could have reactive airway disease that doesnt present itself until its gotten to the point of severe.......... I'll be praying for him and you     good luck

[Concerned lady]

I hope you will call the LUNG LINE nurses, using their toll-free number: 1-800-222-LUNG(5864)!

Ask them your good questions.

It was good advice that the LUNG LINE gave you, above--consider a trip to Nat'l Jewish, to help get your child correctly diagnosed and treated. Nat'l Jewish is the best medical center I have ever experienced! (same for my husband) :-)

Good luck to you.

Concerned lady