Wednesday, March 26, 2008

The Next Step

We finally got an appointment with the specialist. As I hopefully mentioned before (not sure what I have posted at this point or not) there are only a handful in the country who know what rumination syndrome is and treat it. I have a feeling our GI doctor does not believe in rumination syndrome. She kindly nods her head in a patronizing way whenever I talk about how my son has started ruminating again.

The specialist is a psychiatrist who specializes in pediatric feeding disorders. The evaluation takes all day long (from 10AM till 4:30PM) and costs $1500. Up front. And no, insurance does not cover the cost. And no, the plan my husband's work has chosen will not allow us to do good faith (meaning that because she is the ONLY specialist in the area, the insurance company will pay as if it was in network). I am thinking of setting up a donation button for those who wish to help with medical costs (in case any rich person just happens to read this).

Of course caring for my son is priceless. I just pray we do not have to get any deeper in debt in order to do it.

(This is the first up to date post, so this post and all following will be accurately dated as to our journey - all previous dates are just playing catch up telling our story.)

Tuesday, March 25, 2008

Where We Are Now

JJ has reverted back to a lot of old behaviors.

He is VERY clingy. Needing to be held almost constantly. This of course makes me feel HORRIBLE because everyone says that the cause of rumination is a bad relationship between mother and child. So I worry that I did something and JJ felt distant, and now, with the rumination, is terribly clingy in order to ensure that he stays with Mommy.

He is back to being VERY oral. Everything in the mouth. This was a behavior he developed while in the hospital, so I have hope that he is not too far gone.

He is losing weight again. Between March 18 and March 24 he lost 3 oz.

I can see the faces again and hear the noise of him ruminating. In all my research, I have never heard mention of a noise associated with rumination. And it is very faint (but very distinct). The only reason I believe I am able to hear it now is because I am acutely aware of everything JJ does because of the fear of rumination again.

More later which will show up as previous posts detailing our journey.

He is not eating solids very well (he had no problem after the hospital). Even on his favorite foods, I am lucky to get more than 3oz in him. He wants a lot of drinks (because of course drinks are easier to ruminate). I have been told to thicken his drinks with oatmeal cereal, but he doesn't take them. And now, he is even drinking less. Of course because he is not hungry/thirsty because the rumination makes him always feel like he has something in his tummy.

Monday, March 24, 2008

Weighing In

I have to get records for the hospital stay to know what he was weighing all through.

3/24/08 - 11.06kg
3/18/08 - 11.14kg
3/10/08 - 11.15kg
I have to say that at this point I knew JJ was ruminating again but still told to wait it out. I came in on the 10th after calling on the 5th saying I believed he was ruminating again. So it is possible he lost even more weight between the last weigh in and now.
1/29/08 - 10.61kg
The reason there is two months between this weight and the next one is that JJ was doing SO WELL that it was determined that we should come in every two months at this point.
12/20/07 - 9.895kg
12/11/07 - 9.825kg
A little bit of weight loss from illness
11/27/07 - 9.99kg
11/6/07 - 9.01kg

Thursday, March 6, 2008

After The Hospital

They finally wean him off the tube, but we have to stay another 2 (or was it 3?) days with everything for him by mouth.

We are finally released from the hospital after a full month, and JJ continues to thrive at home. He has both physical and occupation therapy, and at his evaluation after being released, he is considered about a 12-13 month old, even though he was nearing 18 months.

His PT/OT is every other week, because they felt that I was capable of doing therapy at home with him during the other week. And JJ has blown them away with every visit. I am frequently hearing the therapists comment on how they are amazed at something he is doing, or how they thought it would take him MUCH longer to reach the point that he is at now.

I would watch him diligently. Always by his bed during nap and bedtime. I would constantly be watching him while we played and interacted. I was not going to let any sign of rumination pass me by. I knew what to look for now, and I knew his allergies now. Avoid the allergy foods AND avoiding the rumination face would secure JJ getting healthy and staying healthy.

Wednesday, March 5, 2008

Sticking A Tube In Him

They stick the tube in his stomach, and almost immediately he throws up. And he throws up a LOT. Even the nurses commented on how they could not believe there was so much in that tiny body. I was no longer allowed to give him any food or drink by mouth.

That night he is SCREAMING. ALL NIGHT LONG. And I can do nothing about it. Is he hungry? Is he not getting enough in the tube? Is the Elecare harming his body and I don't know it. He made that face the doctor made when he showed me the rumination face. And he made it all night long. Was he trying to ruminate and there was nothing there to come up?

(UPDATE: the specialist said that if he had rumination syndrome that he would have been able to bring up and chew on the acid in the stomach or even from the gut!!)

Next morning Dr. House-like comes in smiling. The throwing up of the contents in his stomach and it being SO MUCH confirms the rumination diagnosis. He is keeping everything in his stomach and just ruminating on it all day.

So they move the tube into his gut. This was a horrific thing for him (and me). The allergy results are finally in and given to EVERYONE. :)

JJ becomes a case study. He quickly becomes known as "the rumination baby." I can feel the cold stares as everyone knows that the child ruminates because of the horrible relationship between mother and child. All the students come in to gawk at him. And oh, the "lucky" student who is assigned JJ for the day.

DAYS go by, and I keep asking when can I feed him? When can we get him off the tube?

WEEKS go by and I am finally allowed to give him a small amount of food and drink. He does well. Every day, I am allowed to give him a little bit more by mouth and the drip into his gut is reduced more and more until it is only at night. And then that is reduced slowly as well.

I become an expert in resetting the machine, and knowing when a new bag is needed. I end up the nurse for my son.

Tuesday, March 4, 2008

Diagnosis

Still being held in the hospital against my will, mean old Dr. House-like doctor comes in smiling. His whole demeanor changed and he said that JJ had rumination syndrome. I was thinking this guy is off his rocker. My son does not have a cow's stomach. God does not make us that way.

The doctor went on the explain that JJ will make a certain type of face (and then proceeded to show me the face) and that was how he brought up the food in his stomach to chew on it. I explained I have never seen him make that face, but there were times that I did see him chewing on what he had brought up and just thought he wasn't old enough to know that when something comes up, you spit it out. The doctor explained that I would not see the face because it was something that he would not do when he was interacted with (which I was always interacting with him). He said that JJ prolly was able to sit in his car seat for hours without fussing. Yes he was. And prolly did not fuss when in the cart at the grocery store. True again. Went to bed easily and was prolly the most contented baby I had ever known. YES! And I thought it was a blessing. At the end of the conversation (in which JJ was in the crib) he said he had observed JJ make the face a few times (he gave a specific number, but this was back in OCtober of 2007, so I cannot remember the exact number, but I do remember it was less than 5). He said that because he was a professor at a college he gets to see some very strange and unique cases. And in his 40 years of practice, he had only seen three cases.

The doctor then told me to watch JJ for the face and he left. Thankfully a friend of mine was there. After the doctor left, she mentioned how she had seen JJ make that face on occasion and just thought it was a cute little face the baby would make.

THE FACE:
It is very difficult to explain, and even more difficult to show, but basically, the chin and lower lip move inwards, the tongue pushes out, and sometimes the eyes squint.

I then turned on the TV for him to watch and had my friend observe. She saw him make the face several times (again, I cannot remember an exact number). I was floored.

The next day, I had to get his weight up. He had lost TWO POUNDS while in the hospital those first few days while no one knew what was wrong. And because of his allergies, I was giving him hemp milk instead of formula because he threw up every formula in the grocery store. Hemp milk was the most caloric of all the fake milks. But still not high enough and not high enough in protein either (although still better than other fake milks on the market.

They gave him Elecare. He took well to it, but of course I was still scared he would throw it up. We gave him more and more and more food. I was given all day to get him to gain weight or the would put him on a feeding tube. As irrational as it sounds, I was scared to death that if they put him on a feeding tube, he would never eat by mouth again and it would be a struggle to ever get him to eat by mouth again.

The time came, and they had lied to me. They never even weighed him. I was threatened. He would have the feeding tube put in and I did not have a choice.

Sunday, March 2, 2008

Going Downhill and Fast

A week or two after we had the blood test done, and we were waiting for results, Josiah got a cough. I was a bit worried and took him to the doctor. We both were worried about croup, but that night, there was no barking cough, so I thought that was the end of it. But the next day, I could tell he was laboring to breath. I took him to the emergency room.

His blood oxygen level was in the low 80's and it took a large amount of oxygen to keep it in the low 90's. They immediately took him back and put him in a special room. A respiratory specialist came in. There was a lot of talk. They transported him (along with me) by ambulance to the children's hospital so they could keep him on oxygen.

It wasn't until I was in the ambulance that I realized they were talking Pertussis. We get to the hospital and they wheel JJ into a room in the children's wing and there is yellow tape everywhere and people are wearing armor (not really amour, but protective wear as well as masks). There was a new respiratory specialist who gave JJ nebulizer treatments. He told me that he did not think JJ needed them, or that they would help, but that he was ordered to do it. He also took off his mask shortly after the first nebulizer treatment. He laughed and said JJ did not haver Pertussis. But it would take three days before anyone else believed me that it was not Pertussis and they would stop wearing the protective wear and for them to take down the yellow tape and warning signs about contamination.

No one knew what was wrong with JJ, but just two days after being admitted, he was breathing fine and I expected to be released from the hospital. But I would be held in the hospital against my will. During that week, as well as the first few days of being in the room, I was looked down upon, and talked badly to. I was gossiped about behind my back and made to feel like I was the worst mother ever. No one knew what was wrong, but it was sure that I, the mother, was the one to blame.

No one could give me answers, but because JJ was failure to thrive, I would be kept in the hospital. We do not vaccinate, and we did not give JJ the Vitamin K shot when he was first born. Our regular doctor was on vacation, so we would not be able to see her, and the doctor on call was a real life Dr. House (from Fox TV). He was a mean mean man that blamed me and made me cry. There would be a full investigation launched. And he was certain that I had damaged my son's brain and that was the cause of all this so an MRI was ordered.

JJ had to be put under before going in, and of course I could not go in with him. I keep begging them to let us go home. This is all because of the food allergies. I am waiting for the results, and once I get them we will know what we can and cannot give him. The he will gain weight. But of course no one would listen to me.

After the results for the MRI came in, and his brain was perfectly normal, I was certain that JJ would be released.

Saturday, March 1, 2008

In The Beginning

All of my children have been slow to gain weight. Tiny little things that once they hit two years old just caught right up in height and weight, so there was never any real concern.

Then we had JJ. Our son. And he was a plump little thing. In fact, he was always a little high in the weight percentile, even though he was also a breastfed baby like my daughters were. So we had NO worries about this little one.

Then came a tremendous stress in our lives. We thought we were supposed to move to Texas. So we had all our stuff shipped there, and went looking for a house there. After looking and praying and PRAYING, we felt that God wanted us to stay in Colorado. But now our house was under contract and we needed to find another house here. Major stress. Not to mention the fact that in order to save money we did 90% of the packing ourselves. More stress. Not to mention that there was extended family stress added to all that.

JJ slowly weaned himself from breastfeeding before he was 9 months old. He also began losing weight. So much so that by the time he was 16 months he was down to 16 pounds.

He threw up frequently. Just enough to make a mother start to worry, but not enough to make her obsessed in finding out what was wrong. I figured he was allergic to the foods.

I could tell when he was going to throw up. He always had a certain cough before he threw up. It wasn't until I gave him a small amount of egg (about pea sized). He made the cough, so I was afraid he would throw up. Sure enough he did throw up and his face turned red all the way into his ears. His face started swelling and he broke out in hives all around his face. I took him to the doctor because I knew someone had to see him this way. They had to know that this was not all in my imagination.

I was told that I needed to see a GI doctor. I was told that they would call me after calling the doctor to get us an appointment (so they could get me in sooner). After a week of waiting, I took matters into my own hands and made an appointment with an allergist. They told me the soonest they could get me in was two months away. I begged them to see me sooner. I was worried that my son was dying, but didn't really know that was my worry. It is difficult to explain.

Thankfully they called back not but minutes later. Someone had just called and cancelled their appointment for the next day. I know God was watching out for him. We came in, got the paperwork for the blood allergy test and left. We wanted a blood allergy test because it was more accurate than the pin prick on the back test (plus who wants to subject their baby to that kind of test where their back will itch and itch and they don't understand why they cannot scratch it, much less why someone keeps hurting them by pricking their back). Little did I know that it would take 4 weeks for the results to come back and during that time, our lives would change dramatically forever.