Another Doctor Visit

Jacob is doing better. I have talked to people who have had Urticaria Vasculitis and they had it for a LONG time! One friend 9 months, another a year. Both on steroids for treatment for that long too. Jacob's body however is looking great. So, turns out it might not be vasculitis. We saw an allergist today and after an extensive history update, from birth to the most recent hospitalization, he thinks Jacob is a "unique" patient. Most people only have one problem in seeing an allergist where Jacob has a few issues for him to deal with. He said vasculitis lasts for several days, and with Jacob big spots all faded makes him suspect something else. He agrees Jacob is probably allergic to the antibiotic, (we had to do a blood test today to find out about peanuts) and that is probably what happened that sent us to the ER. His hives have evolved this whole time which is what makes it so strange. His whole body will flush with a red rash in different places at different times. Right before your eyes even, and the doctor saw that today in fact. Here is a picture of an example:And this is a mild example. He appears to be irritated from it. Plus- the steroids are so annoying. He has to stay on them for now but MAN! have they affected my child in so many ways! Not only are they helping his body with the reaction, they have given him an insatiable hunger, and a short fuse with his temper. In the last week Jacob now screams...very loudly shrieking at things. He NEVER acted this way before. Travis and I keep reminding each other that this grumpy hungry monster is Jacob on steroids and he can't help it. Where did my sweet baby boy go? And did I mention he is hungry? We are talking 7 meals a day now. His nightly bedtime snack is a bowl of cereal and this is after a big dinner. VERY HUNGRY!Poor buddy has had enough of doctor and blood work. Remember that while in the hospital he had to be restrained for a catheter and 2 IV's. They took five vials of blood. Then today the doctor wanted 2 more vials for his testing. Poor Jacob started balling when the nurse tied off his arm. She was the only one there too, so guess who got to lay on top of Jacob trying to restrain him all by herself while the nurse took the blood? That's right, just little old me. It was so sad. I think Paige was nervous she would be next. :)Well Hello Gorgeous! I couldn't resist posting these. She was looking up at me when I was trying to get the next set of pictures. Look at those eyes!! A friend saw her this weekend and declared she is going to get whatever she wants with them.

I was trying to get a picture that showed the bags under his eyes. He is just not himself.Another funny Paige break form all the Hive Hysteria 2008. So she was fussy that I wasn't giving her attention and crying until I looked at her.And then was happy once I was looking at her. This repeated a few times so I got a picture. She is so funny.After dinner, our hungry hippo wanted to relax in his swing, with his boots, and his Halloween Oreos.

It was a beautiful night out tonight. Both kids enjoyed swinging and a walk before another meal for Jacob and bedtime.

Tomorrow...another doctor visit for both. Paige will get her nine month checkup that was delayed due to her ear infection. And Jacob will have his follow up on ears and all this so hopefully no shots or anything traumatic.

Pumpkin Patch

This was our first time to take the kids to a pumpkin patch. Believe it or not, pumpkin patches are not that big in Arizona so we never got to take Jacob to one. The kids liked it. The kids are sporting the Texas shirts even though we have loved ones who are also Razorbacks.

Grandma and Papaw went home this afternoon. Jacob seemed really bummed that they we leaving.

So Far So Good

Maybe it's because Grandma and Papaw drove in this morning!Jacob was so glad to see them. He is doing good. The swelling is completely gone as far as we can tell. His back has a big bruise from the swelling, which we were told would happen. All his joints might bruise and be sore for a few days.Our bean pool is looking bare. Probably because they get thrown out and then sprout.

Urticaria Vasculitis and Angioedema

The previous post was from Tuesday where all of this mess started. Tuesday night, the hives were looking weirder, but we were told that could happen. Then he started to swell in other places too. What started with just his knee evolved into every joint doubling in size and a mass the size of a cup saucer /dish on his spine. He was screaming and crippled with pain. He couldn't move anything. We took him to the ER and it was very scary to be taken back right away and have 6-7 doctors and nurses looking clueless at what it could be. Nobody knew of a reaction doing this. They gave him morphine for the pain and a steroid shot and drew blood. Poor Jacob screamed and hated being restrained and poked. Then they needed a urine sample so they had to catheter him-this was the worst! Unfortunately he was dry so they didn't get anything and we had to restrain him as he tried to thrashed around to get free of the catheter. It was terrible. There was talk about transferring him down to Children's because they were so perplexed but his blood work came back good. The steroid shot helped too, and all his joints and the mass on the back got so much better. They admitted him and our pediatrician saw him the next morning. He stayed all day Wednesday and night, hives coming and going, slight swelling still, and very irritable and uncomfortable. Wednesday they had to give him a second IV because the first one went bad. Poor Jacob. Thankfully this nurse got it right the first time.The final diagnosis is urticaria vasculitis and angioedema. What??? I know...probably never heard of it. It's not that common. (Surprisingly, a friend of mine had it last year for 9 months!!! We are hoping Jacob's will not be that severe.) So, he is on steroids, Benadryl, and Atarex until the rash goes away. Then we will follow up with Zyrtec. But- We are going to see an allergist and so things might change in the near future. I think he is glad to be home. He wanted to wear his boot and swing (so funny!) and after that he was all itchy and breaking out. We put him in a oatmeal bath and I think it helped a little. You can see a little, the picture doesn't show all of it because of the light, how his back flared up. It went away in about 15-20 minutes but he is very itchy. The hives come out of nowhere too, and for no reason. In the above picture his face was fine, and by the time I put the camera down, soaped his body rinsed and picked him up his face had broken out. As you can see below.
Poor buddy! The hives- which my friend testified too, are very uncomfortable. Not only is he itchy on the outside but on the inside too. His ears, nose, mouth, eyes, and even bottom can be breaking out too. Last night he was scratching his tongue and he keeps trying to get in his diaper to scratch there too. We will keep you posted, but for now, his pitiful itchy body is home.

I keep thinking how crazy busy Jacob keeps us and his doctor. I hate to joke about "what next" because the reality is we are very blessed to have minor things. My heart kept going out to friends who are in harder places with their kids health and so I am trying to stay thankful for what God is doing with Jacob. He has blessed us with wonderful family and friends and a smart doctor to see us through all of this.

HIVES!!

The first one was taken at the doctor's office. I don't think this picture did the hives justice but you can kinda see them.The rest are since we've been home. They are bigger and darker now.

Never a dull moment

What a morning we have had so far. Jacob had OT and Speech this morning like always. Well, long story short, we think he had an allergic reaction to the vanilla pudding while in OT. His left knee was all swollen, it looked like a golf ball under the skin, and he had hives all over his body! I didn't know what it could be from. The only new thing was maybe the pudding. Got him home, called the doctor, gave him a bath and Children's Benadryl and the hives for the most part went down. But a few hours later he had purplish spots in clusters on his ankles, backs of the knees, underarms, ribs, and his knees was all swollen again and warm to the touch!!! What is that? His Benadryl had kicked in and he was very tired so I put him to bed. I keep checking on him every 15 minutes and am listening over the monitor for any breathing problems. I spoke with his doctor again and she said it all sounds like a reaction to a food and just to watch him for a limp, fever, and obviously breathing problems. We know he has the peanut issue and we have an epi pen with us "just in case" but what is this? I think I am going to have him tested. I hope the rest of his day is easier for him and me,but Jacob definitely keeps us on our toes!
UPDATE: Well, Jacob woke up and couldn't walk, his knee was that bad. So the doctor wanted to see him. She had the other doctor take a look at him too. They said that the hives he is having are causing arthritis in the joints. His ankles were a little swollen too and the palm of his hand. What we are doing now for him is Children's Benadryl around the clock, Children's Zyrtec once a day, Motrin a round the clock-including waking him up for a dose if it's time, and discontinuing his Omnicef for his ears- which looked better! Then she is going to call in the morning, if it's not better she will see him again and might have to do steroids and blood work. I think he will get better or stay the same , but it's very weird. Allergic reactions can be so weird.