This is about a boy who has severe itching all the time. This is about a boy and his parents who can’t get any sleep. This is about a boy who is so itchy he can hardly eat, play, take a bath, ride in the car, or anything else. This is about a boy who needs to be cared for 24/7 so that he doesn’t itch and rip his skin open. This is about our sweet boy, Titus.
Titus lived his first month as a normal, itch-free baby. At one month old, he began to develop some cradle cap on his head and eye brows. The cradle cap got much worse and spread to his body. His pediatrician diagnosed this as sebhoriac dermatitis and said he would outgrow it by six months.
Six months came and went, and Titus continued to get worse. He had learned to scratch his itches, and would make himself bloody if we didn’t keep careful watch. If we tried to carry him in a baby carrier, he would rub his face on our shirt until it was bloody. At this point we took him to an allergist. The allergist did some blood tests and put him on oral steriods and antibiotics to clear his skin up enough for a skin-prick allergy test. Both of these tests showed Titus severly allergic to most all foods tested (there were many foods that were not tested). The allergist told us the best thing to do was to avoid these foods and wait for him to out grow the condition. His nursing and also pregnant mom, Mariya, cut out all of the offending foods from her diet.
By now Titus was 7 months old and was miserable. We couldn’t just wait for him to out grow this. We contacted a lactation consultant / gut-healing specialist and worked with her for a couple of months trying to clear up his allergies. We did probiotics, eliminated more possible trigger foods, and more. Mariya even went on a total elimination diet and only ate 5 basic, organic foods for a week. By day seven of this 5 food diet, Titus did clear up some. We then tried introducing several foods, only to have severe reactions to most all of them.
We asked our church to pray for Titus, and even had a special prayer time during a service for him. Many people around the world were and are praying for him. Praying for relief, for help, and for healing. A couple of people have driven several hours to pray with us for Titus.
Following the lactation consultants advice, we took Titus to a chiropractor and tongue tie specialist. He was severely tongue-tied and lip-tied. Both of these were reversed and we hoped this would be the solution. Several weeks passed and there was no improvement. Mariya joined a Facebook group called Heal the Mother, Heal the Baby where she found other mom’s dealing with these same issues. This support was very helpful, and we learned different lotions, baths, and other ways to help his itch in some small way.
By now, Mariya had been able to increase her diet up to 10 basic, organic foods without bad reactions. Titus was still itchy and red, but not as bad as before. He was now 10 months old. At this point, he started getting worse once again, even though Mariya wasn’t adding any foods to her diet. He lost his laugh. He stopped talking. He lost his desire to play. His legs swelled up. He started to lose weight. He just acted like a sick, sick baby all the time. Titus also couldn’t not sleep well at all by now, with all of his itches and other problems, which made it very hard for us to sleep as well. He now required 24/7 care to keep him from ripping his skin off in desperate itching.
At this point, Mariya (mom), was several months pregnant with our third child, and was losing her breast milk. A Facebook friend was generous enough to mail breast milk across the US for Titus. We are very thankful for Matthew’s (dad’s) sister-in-law who came and tandem nursed (and went on the “Titus Diet” for a couple of weeks at our house. Later, Mariya’s sister went on the “Titus Diet” and pumped milk for him for several months. Matthew’s niece came and lived at our house almost full time to help out and so that Matthew could get enough sleep to go to work. We are so thankful for the blessing and help family and friends have been.
More research led us to a naturopathic doctor in Seattle, Dr. Tim Gerstmar. Dr G specializes in chronic, complex disease. Those that leave most other doctors stumped. Most people he works with have already seen 4-10 other doctors. His mission is to help these patients. We did a phone interview with him and made the trip to Seattle with Titus. The appointment went very well and we were encouraged to have found someone who seemed confident that they could help.
Dr. G put together a treatment plan for us with herbs, probiotics, oils, antihistamine, etc. He also had us do a stool test for Titus which showed he had way too much bad bacteria in his gut and most likely had leaky gut syndrome as a result. Dr. G recommended we give Titus antibiotics to kill this bad bacteria, in hopes that this would fix his issues. We were hesitant to give antibiotics, but we wanted to do whatever we could to help Titus. We had no other choice.
During antibiotics, Titus once again began to look better. He got his smile and laugh back. He wanted to play again. The swelling in his legs went away. We were so, so thankful! His skin even got a bit better again. The only bad thing was that he was losing lots of weight. Once the antibiotics were over, he began to gain weight and catch back up with his growth chart.
By 1 year old, Dr. G had us try introducing a few more foods in the hope that the issue was fixed. Unfortunately the foods caused reactions once again. We backed off on introducing foods, and Dr. G made up a new treatment plan to try to get rid of the bad bacteria once and for all.
Titus began to get worse. And worse. And worse. He still had his smile, laugh, and desire to play, but now his itch was making it impossible for him to do anything comfortably. He has to be restrained while he sleeps in order to keep him from itching until he is bloody. We have to hold his hands while we feed him. We have to be with him while he plays to stop any itching. We have to hold his hands while he’s in his carseat. He is a miserable little man, and it breaks our hearts.
We feel like we are surviving one day (and one night) at a time. Our two-year-old daugther often reminds Mariya, “don’t cry again, mommy.” We are pretty much stuck at our house as it is so hard to take him anywhere. Anywhere we go, we have to have our own organic, from-scratch foods for mom and Titus. We have to be ready to answer everyone’s questions about Titus, and assure them that we have tried pretty much everything.
Through it all, he has a good attitude and will still smile. He is a tough little guy. He continues to grow and develop, learn sign language to communicate, and more.
Our last effort was to try Chinese Herbal Medicine. So far this hasn’t helped either. During this time, Matthew (dad), was searching the internet and reading others’ eczema stories and ran across several stories about the program at National Jewish Heath. Everone who took their babies with severe eczema through this program came back with amazing stories. They were sleeping again! They had their life back! Their babies could eat foods they had never eat before!
These parents all recommend the program highly. We really want to do it, as this gives us hope for Titus.
At this point, we are hoping insurance will cover the hospital bills, so we are focusing on raising money for travel and out of pocket medical expenses.
Any help would be greatly appreciated. Prayers would be much appreciated! Thank you so, so much for taking the time to read our story.
For success stories from parents who did the program at Nationa Jewish Health, please see the following links:
Blog posts: http://www.realfoodallergyfree.com/2012/04/our-personal-story-part-2-and-an-announcement/
4 Blog posts in reverse order: http://www.theadventuresofthefamilypants.com/1/category/eczema/1.html