Sunday, December 14, 2014

+3050 Gut Health and Brain Health

Ah, too bad!  I missed day +3000!  Oh, well!

I wish that we had someone who was more proactive with the over-all long-term health of our WAS boys.  Like, not just their breathing and skin health, but their gut health.  WAS boys take so many medications, their gut has to be compromised to some extent, even when they stop the medications. I've been learning more about leaky gut, behavior, and healthy brains as applied to just normal people like you and I. When I think of the benefits of fermented foods, no sugar, and building up good bacteria, it would help our WAS boys so much more if they had a whole food diet. It could extend their years, and if they are struggling in school, it could help them improve. 

I know it's hard, but it's never too late to try.  If you are a parent, here are some suggestions if you are willing to give them a try. I'm not trying to sell anything. I'm just a concerned mom, trying to do something very hard. It appears my son is doing well, but I have no clue what those thousands of doses of meds and chemo has done to his long-term health. 

Here is an article that helps explain my thoughts and what science is discovering between gut health and brain health. I hope it's helpful.

Sunday, August 03, 2014

+2917 Arm Rash and Happy 8th BMT Anniversary!

While traveling in the Pacific Northwest on vacation.  David came down with this rash on his left arm on Monday, July 28, and it's gotten worse.  It's swollen now too, and hurts to the touch.  It's not the wounds that hurt but inside where the swelling is.  The right arm has some rash too but is not swollen and not as red.  His eye lids are affected and the GVHD rash is popping out on his forehead and neck.  The eyes, forehead and neck do not itch, but the arms itch a lot.

He's had similar reactions to mosquito bites on his back before.  

We've been swimming in the Pacific Ocean at Rockaway Beach (in a full body wet suit), and swimming in the Salmon River in Mt. Hood area.  

It looks like poison oak but he said he was not playing in poison oak.  Also the way it's spreading is looking more like a GVHD flareup.

He has been wrestling with Jonathan on the grass at our vacation rental - like every day, several times/day, wearing short sleeve shirts.

His sun exposure has been minimal and if he's in the sun, we are using sunscreen and sun hats.

I took him to Urgent Care because I did not bring the hydrocortisone ointment.  The doctor prescribed the 2.5% and said to take Benydryl.  We've done that for Friday (8/1) and Saturday (8/2).  I don't have the special cream for the face, so I'm using hydrocortisone on the face.  His eyes and the rash on the face do look improved, but the left arm is not improved and hurt/swollen/itchy today.  The rash keeps moving upward, towards his bicep.  

August 1 was his eight year BMT anniversary!

Tuesday, July 08, 2014

+2891 4th of July 2014

Besides David getting a few headaches (tiredness and dehydration), we had a fantastic 4th of July this year!

Lympnode in June:  His right neck, directly under his ear, hurt a lot.  I took him to the chiropractor and she suggested he was fighting something because the lympnodes in his armpit and his right side chest also hurt.  He got over it in about 2 weeks and is doing great now.  He had no other symptoms - no fever, no rash, no extra petichiae.    Whew!

They sold 5 gallons of lemonade and 44 cookies at the parade.
A portion of the increase went to LifeNets.

Sunday, March 30, 2014

Tuesday, March 25, 2014

+2786 Days Post BMT - David is doing great!

David will be 10 yrs old on June 7th!  He still has ongoing health issues which I'll outline here:

Petechiae:  He still has petechiae (tiny pin point blood spots) but his platelets are normal.  The doctors have no explanation.

VSD:  He still has a VSD (Ventricular Septal Defect) hole in his heart.  It's about 2mm.  As his heart grows, the hole becomes smaller in relation to the heart size.  He saw the cardiologist on  3/18/14 and he did not do an echocardiogram.  He said there is nothing to worry about.  The size of the VSD will not affect his growth.

Skin GVHD:  His skin GVHD still flares up when he's in the sun.  It's been 2 yrs since his skin GVHD resolved but we still have to take precautions like sun screen, sun hats, and shade.  If he has a flare up, we use Hydrocortisone 2.5% topical ointment and that seems to work well.

IGF3 Binding Protein -  4.4 - normal
IGF1 Insulin-like Growth FActor - 130 - normal
Celiac Disease Panel - TTG IgA Antibody - 1.2 - normal
                           - Deamidated liadin ABS, IGA - 2.2 - normal
                           - Immunoglobulin A (IgA) - 464 - HIGH - not sure why, Dr. Suchet has not responded.

He's still on 50mcg o Levothyroxine for Hashimoto's Thyroiditis.
T4FREE - 1.06 - normal
TSH - 1.24 - normal

59 lbs

Blood Pressure:
98/63 - very stable

3 feet, 3 inches on 3/18/12 - Since October 2012 he's grown 3.8 inches.  His growth has slowed down but he's still trending upward.  He's still not on the average growth chart.  There are no signs of puberty which means his growth plates should still be open, giving him more time to grow.  We HOPE his growth plates will stay open until he's about 14 yrs old.  If that is the case, he's estimated to be 5'8" tall.  If they close earlier than 14 yrs old, est. height is 5'5".

I'm so proud of my son!  He's had a great school year!  He's reading now.  He enjoys science and PE too.  He likes to be read to, so we've read several chapter books to him this year.  Mountain Born by Elizabeth Yates, Henry Huggins by Beverly Cleary, The Year of Miss Agnes by Kirkpatrick Hill, Mrs. Piggle-Wiggle by Betty MacDonald, Owls in the Family by Farley Mowat, and Homer Price by Robert McCloskey.  Right now, we are reading The Wheel on the School.  

He really likes and is working on several badges.

Here are a few photos of our recent trips:

IRELAND - March 2014

Departing Ireland

Ballyquinn Beach, Ireland 
Ballyquinn Beach, Ireland

Blarney Castle

Blarney Castle

Blarney Castle

Blarney Castle

Rock of Cashel

David likes to color and do activity books

Catching air while he can while the train was empty.

National Maritime Museum in Dun Laoghaire, Ireland

National Maritime Museum in Dun Laoghaire, Ireland

SCOTLAND - October 2013

Thursday, October 25, 2012

+2270 Thyroid, Growth Hormone, Cortisol

Great news today!

Thyroid Normal (with meds):  David's recent blood test for Free T4 (1.16) and TSH (1.75) have been in normal range for 1-1/2 years.  No changes needed to his thyroid meds.  The endocrinologist said that most post BMT patients with thyroid disorders will continue to take the meds until they stop growing.  5% of patients recover normal thyroid function and can come off the meds around age 18.

Growth Hormone Normal (no meds):
IGF1 - Insulin-like Growth Factor 1 was normal (106)
IGF Binding Factor was normal (3.6).

Height:  1.09 meters or 3 feet 7 inches
Weight:  22.09 kg or 48lbs, 11oz - slightly below average for an 8 yr old
Blood Pressure: 93/61

Growth (not normal):  He is still below the 5th percentile.  He needs to grow 4 inches in the next 8 months to get on the chart.  We know by his wrist scan that he is 2 years behind and may reach full height by age 20, not 18 like a typical male.  

Cortisol post stim (normal):  His level is normal (26).  Now we know that if he experiences a stressful situation (broken leg, car accident, major sickness) that his adrenal glands will produce normal levels of cortisol and he should have a normal response.

His doctor said: "David's cortisol response is excellent well > 20. No sign of cortisol deficiency. His growth hormone levels are stable within normal range.  No medical intervention is needed at this time but I really would like to monitor his height rate and see him back in clinic in April 2013. We may repeat his thyroid tests at the time of the visit as we may check other labs then too. "

He is good to go for now!

Tuesday, October 16, 2012

+2261 David is doing great!

Time flies by so quickly!  Since my last post, David has been doing fantastic.  Here are some highlights:

1.  Eye pressure is resolved so not more eye doctors.
2.  Thyroid function is still an issue so he's on Levothyroxine daily.
3.  Occasionally his skin will get a dry or flared up spot and we have to use topical steroids.
4.  He's still sun sensitive so we have to keep him fully covered.

Fun and exciting adventures:

1.  In May we went to Hawaii.
2.  June was the start of his first Tai Kwon Do class.
3.  July took us to southern California to visit the cousins and go to Disneyland.
4.  The most exciting milestone was dropping him off at church camp for 3 days!
5.  Between March - July, we went on many hikes.
6.  In September, we went camping with our homeschool group.
7.  Then, in October we went to New Zealand.  The following photos were taken in New Zealand

The Stone House park in Kerikeri

A playground in Paihaia

The Bird Place in Kerikeri

Maori cultural performance in Paihai

The beautiful children's choir

On board a steam boat!

The Agradome in Rotorua

The Weta Caves

Bag End at Hobbiton

There is a rainbow at the airport before departure.

Monday, March 19, 2012

+2042 - High Alkaline Phosphotase (liver Enzyme)

David has a very high Alkaline Phosphotase (liver enzyme) of 286 (normal is 40-120).

He had vomiting when we went to Utah (Feb 26) and again (March 15).  It's not the stomach flu.  His WBC was slightly elevtated (14.0) so maybe he had an intestinal thing going on.

He's doing better now but low on energy and not a big appetite.  He'll have an ultrasound to check for gallstones on 3/22/12.  More info to follow.

Here are some photos of a recent 7-mile hike we took to Windy Hill.

At the pond at Windy Hill Preserve

He did not have a lot of energy this day so we pushed the boys a lot.

Adira helping him cross the river.

We are about 1/2 through a 7 mile hike.
More hiking to Half Dome preparations here:

Friday, March 02, 2012

+2025 - Skin Rash and Fun Activities

FEBRUARY:  The rash around his bug bites (see photo below) is gone but he still has "bites."  They itch sometimes and are slow to heal.

We are tentatively scheduled to visit the NIH on April 15-17.  Anyone else going to be there?

One huge milestone is that he learned to ride his bike only two minutes after I removed the training wheels:

Michael, the girls, and I are preparing to hike up to Half Dome in Yosemite in June.  David and Jonathan will not go with us but they will participate in all of our preparation.  I started a blog called Hiking to Half Dome which chronicles our hikes and preparation.  Here are a few photos from the blog:

Castle Rock State Park.  David is on the far right.

Castle Rock State Park.

Pinnacles National Monument.  The boys collected the pine cones.

Pinnacles.  These stairs are leading out of the bat caves.
About a 3 mile hike.

Yikes!  A big buck!  Run for your life!
Año Nuevo State Park - Elephant Seals! - 3 mile hike
We took the kids skiing in Utah.  We put them in ski school but 45 minutes into the class David threw up because of altitude sickness.  He and I spent the day at the rental while Michael and the girls skied.  The resort was absolutely wonderful in rescheduling him and re-issuing my lift ticket.  Two days later we all went skiing again and David had a great time!

The backyard of our rental had these fun hills for sledding.

This is the Alpine Coaster at the Park City Resort.

The children worked for three days building this igloo ice castle.

This is Ben, David's ski instructor.  He said David was so quiet.

Add caption

After the ski school, David was not ready to go.  He wanted to ski with Michael and the girls.
Go David!

JANUARY:  He acquired some type of bug bite on this back.  He broke out in a rash and we were very worried it was GVHD again.  Before going straight to oral steroids (they really want to avoid steroids because of his past optic nerve swelling) the doctors wanted me to try topical hydrocortisone.  It worked!  The rash is gone.

DECEMBER:  David is doing very well.  He saw the eye doctor on Dec 7 and his eyes look great.  He saw his BMT NP, Karen, on Dec 14 and agrees that he is doing good.  He had his titers repeated and they all look normal.

OTHER WAS NOTES:  The WAS community is so amazing!  There are moms having baby boys even after knowing they are WAS carriers.  These women are stepping out in faith which I deeply admire.  Also, there are other WAS boys who still suffer from GVHD, like our friend Max.  He is a beautiful boy with such a wonderful smile and attitude.  He's parents rock (literally, his father plays in a band for fun) and are a joy to know.  We continue to pray for so many of the WAS boys.