August 30, 2010

The article above is from the IDF (Immune Deficiency Foundation), they featured Jacob and his friend Ethan . They both suffer from CVID, Common Variable Immune Deficiency Diesease). The boys finding each other has been such a powerful and supportive experience for both of them. Finding someone that has this disease is rare much-less someone your same age. The boys started communicating via SKYPE and then started doing their infusions together over SKYPE. The IDF thought this was so remarkable that they did and article featuring SKYPING and the boys. I am so proud of them both. I have always said Jacob was given this horrible disease for a reason and he is helping others by bringing awareness already at 6!

It has been a while since I posted, we have had a busy summer!
After several hospital visits this summer and a change in our infusion medicine Jacob is finally on a good path again! The Hizenta seem to working very well for him he has very few side effects and his migraine headaches he gets from his infusion has decreased drastically and he hasn't gotten sick since starting it!!

Next month I will be running a half marathon with my sister in Washington state. This will be my first one ever. I am going to get shirts printed to support my son and immune deficiency disease to help raise awareness!!!

June 23rd

Oh what a fun month we have had!!!

On June 9th we had to go back to see his immunologist because his ear was still hurting and he had just finished his last round of antibiotics the day before on the 8th. He had a CAT scan done where everything looked good (for Jacob) but his ear was still infected so we were given another 10 day supply of antibiotics, Zithromax.

That night and the night of the 10th he screamed and cried ALL night long. After being unsuccessful with getting him in with his ENT doctor, he was on vacation, and by suggestion of his immunologist we took him to the childrens's emergency room. Well long story short his eardrum had ruptured and at that point cased as outer ear infection where his ear canal had swollen closed. He was given antibiotic/steroid drops and pain drops. We had a follow up appointment today with his ENT and his ear is healing nicely and he suffered no hearing loss!


We started Hizentra last week an so far the infusion results are fantastic! Jacob told me there was no pain during the initial start and it infused much quicker. He had a mild headache about 2 hours after infusing so we gave him some Tylenol and that was the last we heard of a headache. We do infusion #2 with Hizentra tomorrow and I hope the outcome is just as good.

May 17, 2010

I had to take Jacob back to the Dr. on April 27th. He woke up a couple days prior to this and told me his ear hurt but then never said another word. Last night he was crying in pain so I made an appointment at his pediatrician. He had the "Worst infection I have seen in years", I would love to go to the Dr. just once and not hear those words! Anyway, he was given a shot of Roceftin (he said it hurt a lot) and a 10 day supply of Suprax. She only give one or the other but since it's Jacob she wanted to make sure we got everything cleared up.

On May 7th we had an appointment with his Immunologist to have his ear checked out and to talk about switching him to Hizentra. His ear looked good and we are going to get him switched over ASAP, pending insurance approvals. We will have a infusion nurse sent to our house for the first two infusions on Hizentra to make sure he has no adverse reactions. He will also be getting an increase in his Immunoglobulin since he has been on a downward spiral since he got the Swine flu in February. He gets his IGG levels check again in September and if he gets another infection within the next several months he will be getting a CAT scan to make sure the infections are getting cleared and he is just not "reinfecting" himself with the same infection that hasn't been getting cleared up 100%. He will also go through round 2 of the allergy scratch test this summer. He had it done 2 years ago and only showed an allergy to Aspergillis, mold, but he ALWAYS has some sort of post-nasal drip and is constantly clearing his throat.

Jacob has made a online SKYPE friend that has CVID like him and we will be meeting in person in July. Jacob is so happy to have met him.

March 25, 2010

Well we have been off of antibiotics for about 24 days and had to start theme back up again. We are on a 14 day supply of Ceftin and on all the nasal sprays and of course the nubulizer treatments throughout the day. If we don't show signs of improvement by the beginning of next week then back we go to see our immunologist.

Jacob made a MAJOR break through last night during his infusion. For the first time ever he didn't fight and it only took one person to do it. I am so proud of him!

March 15, 2010

Well we broke our long streak of not being sick. On February 10th Jacob shot up with a 104.9 degree fever. I took him to the Dr., unfortunately his regular pediatrician was not in the office and we had to see another one in the office. I HATE seeing another doctor in the practice, they don't understand him! Anyway, she wanted to test him for strep and I insisted on getting him tested for the flu and guess what? He came back positive for the flu that came back as H1N1. Great. I asked for an antibiotic since the flu ALWAYS turns into a more severe bacterial infection. Well she refused since the antibiotic doesn't help with the flu..No kidding!

Several days later we had to go see him immunologist since he turned bacterial. We got started on on a 14 day supply of Ceftin and had to go on nebulizer treatments since of course it is in his lungs. He got lung function test and it looked good but a little low. Anyway, he has recovered and told me "The swine flu wasn't as bad as thought".

He started FINALLY not fighting us over his infusion, we had been having to sit on him to hold him down. I tried putting a blanket over his head so he couldn't see what was going on and that did it...two weeks in a row no fighting!!!!