Sunday, April 20, 2008

Finally Crying

I am not sure why I have not cried about the trauma that I went through in the hospital with my son. I have not shared a lot of the details as they are very personal and VERY painful. A lot of accusations, hurtful words, glaring eyes and threats were made.

I was sharing the details with a friend last night and I just cried. And I really had a hard time stopping. After she left, I went upstairs, crawled under the covers and just cried and mourned. Brian just held me. Not knowing what to do.

See he had mourned the entire time we were apart. I guess because I was there in the middle of it - fighting for my son, fighting for what was best for him, and having to be there for him and be strong for him, I did not have time to really break down and cry. I couldn't.

But in talking about some of those details last night, it really hit me what had happened. And it was OK for me to cry.

My friend also has had her share of trauma involving her children. The birth of her son, her first child, was so traumatic, it took her nine years before she was able to scrap it. I have another friend who lost her son just months after his birth. Her scrapping him keeps his precious memory alive. I am not sure where I Fit on that continuum. I have more of the story to tell that what I have already share here on this web page. I am just not sure I have healed enough to scrap it. In fact, I have not done any scrapbooking since I realized my son was sick.

I am just so thankful to God that JJ is getting better. So thankful to Him that my family is safe and together. So thankful JJ is alive. So finally, six months after we have been released from the hospital, I cried.

Wednesday, April 16, 2008

PROGRESS

We have been trying several of the techniques shown to us by the specialist in order to get JJ to eat. Today, after weeks of him refusing to eat cut up meat, he ate chopped up meat! We got the chopper, and I put sliced deli meat in it, gave a few chops and had JJ chop a few times. At first, it just sat on his plate. Then he took a pinch. Then another and in no time his plate was clean of meat and rice! WOOHOO!

We have also been doing a lot of research on the reflux issue. I have been adding a liquid calcium magnesium supplement to JJ's evening drink. It has really helped him sleep through the night.

He gets a papaya chewable after a meal where he actually EATS something (more than two bites).

And I have also started adding apple cider vinegar to his evening drink. He is actually waking up HAPPY in the morning!

As for physical and occupational therapy, he is doing fabulous! He still is very low tone and they are working on him with touching textures.

I am so thankful to know TERMS now of what he is and what he needs to be doing! He is still not where he needs to be, and I have no idea how long therapy will last (especially now that they are adding feeding therapy).

I must admit I am so frustrated. They did a feeding evaluation right after his release from the hospital (end of Oct 2007), and said he would be fine. I told them he wouldn't and that we needed this. If only they had listened to me.

Thursday, April 10, 2008

Return to the Specialist

It has been a few days since the first trip to the specialist and I went back to finish up the talk. The part where they give us the plan for JJ. I had expected it to take only 1 1/2 hours (since that is the time we were allotted on the original day of his appointment. Instead I was there for over 4 1/2 hours. I have a LOT of handouts to read over. Some talk about how a child moves from breast/bottle at birth to eating table foods, and the mistakes that a lot of parents make in the transition. Usually kids have no problems, but sometimes they do. Like in JJ's case. We did the same thing for him we did with our other three children, but it didn't work for him.

Some were specific to JJ and how we need to do things. A feeding routine, not to mention exactly what he will be given to eat at those times. How he is to sit, and how we present the food to him. The weaning off of Elecare (which has soy in it, something our GI doctor did not know, and I was told by the specialist that most GI docs don't know) and onto Neocate Jr. How JJ is to sit, chew, move his tounge, use his hands, the words we can and can't use at the table. I must admit, it is a bit overwhelming.

And at the same time ABSOLUTELY FASCINATING!!! I have known a few of the stuff we were told (that most of the general public is not aware of just because they have not done research OR really had a NEED to research it to begin with). But everything else she was saying ... Oh I wish that EVERY GI doctor in the world could hear her speak.

It amazes me that we take a class to learn how to give birth. Sometimes we even take class on how to diaper and burp a baby. Hey, I could not even been dismissed from the hospital after giving birth till I went to a class that showed me how to bathe and feed a baby (despite the fact this WAS my third child). But there are NO classes teaching about the feeding growth of a child and how important that 4-6 month period is. How the tongue and jaw and EVERYTHING in the mouth changes. But I digress.

No, wait, gotta rant on the fact that there is NOTHING to prepare a parent for severe food allergies/sensitivities. Even the GI docs are baffled. They see the child as a stomach and not a whole person. Hence why JJ was on Elecare WITH SOY even though SOY is a major allergen of his. I cannot TELL you the difference in JJ since lessing how much Elecare he gets. But I am getting tired of the vomiting while we are in transition. BLECH! The coughing and gagging. The UP ALLLLLLLLL NIGHT!

We saw the specialist on Tuesday of last week, and in just the week and two days since we have seen her, I have seen progress in JJ. And he is gaining weight again. The extra Elecare I was giving him (pounded into my brain that it was best for him because it was his only source of protein and calories) was making it worse. My poor baby.

But now we have a plan. I have a LOT to read through. And a lot to change. Baby steps. I need to remember baby steps.

The Specialist

First, we want to thank everyone who was praying for the appointment with the specialist. The doctor was extremely knowledgeable. We have a LOT of answers and a lot of hope!

This is a VERY long and detailed letter. I know most of you will not read through it all. But all the details are here if you want them. :) If not, just skim or skip it. :)

Now to the wonderful news. JJ DOES NOT HAVE RUMINATION SYNDROME. Brian and I are a bit frustrated at this news, but we also give God the glory for it too. If JJ had not been diagnosed with rumination syndrome, with something so rare, we would not have sought out the specialist.

Basically rumination syndrome means you are bringing up the food on purpose. There are two keys here:
Firstly, that it is done on purpose and secondly, that you can actually see him chewing on the food after bringing it up. JJ was not bringing up his food on purpose, even though he was making the face (more on that later). And you could not see him chewing on the food that was brought up.

SEVERAL factors have contributed to JJ’s condition.

Turns out that because of JJ’s food allergies/sensitivities, his body was not able to process the nutrients in the food, hence him losing the weight. We all have villa in our stomach. We we eat something that we are allergic/sensitive to, those villa swell up and prevent the body from absorbing the nutrients it needs to thrive. I knew JJ would most likely be allergic to gluten and dairy (as his two older sisters are), but had no idea about other allergies/sensitivities. I was trying to find foods he was not allergic to, but in giving him food after food he was allergic/sensitive to, he was throwing up frequently and his villa was not allowed time to reduce in swelling to absorb the food he could have. So not only was he losing weight from throwing up, but he was also losing weight because of the villa being constantly swollen from giving him foods he was sensitive/intolerant to.

In the hospital, though I begged them to listen to me about his food allergies, their focus was his failure to thrive. And in focusing on that, and ignoring his food allergies, they were compounding his problem. By bypassing the stomach and going into the gut, you bypass the villa so the nutrients goes into the body and you gain weight. This is a great way for putting a band aid on the problem and NOT fixing the problem. The problem was his food allergies/sensitivities. That would explain why he no longer was losing weight or “ruminating” after being dismissed from the hospital. Rumination syndrome does NOT go away so easily. This is most likely why the GI doctor did not believe JJ had rumination syndrome.

However, the Elecare he is on has soy in it. One of the things JJ is pretty allergic to. Because it is so extremely broken down, the body can take more of it before it starts to show a reaction (what I thought was signs of him ruminating again --- the face and the weight loss). But now his body is taxed out on the soy and breaking down. JJ is very sick right now. Has been throwing up frequently and has bronchiolitis. The specialist was sad to hear that the GI doctor did not take us off Elecare as soon as she found out about JJ’s allergy to soy (the GI doctor found out only days after starting the Elecare while we were still in the hospital --- but since he was not throwing it up, did not even think about the damage it could possibly do to his body).

He also might be allergic/sensitive to corn (and many other things we do not know about because allergy tests are not very accurate for children under the age of two as their immune systems are still growing and changing). That is not to say that the allergy test that we had done is not accurate (as we can see in his reactions, he is most definitely allergic to dairy, egg, soy, legumes, gluten), but that there might be other allergens that did not show up on the list, or the one’s that did show up, his body might outgrow as his immune system continue to mature (especially if not being taxed by other foods he truly IS allergic to).

So at the evaluation, they watched and observed JJ eating and drinking. He is not making the proper movements with his jaw that he should be at this age. In fact, he has this little move, subtle as it is, of arching his back and turning his head to the right to help him swallow food. This is part of the reason he does not like to eat meat. It is a difficult food for him to chew and swallow (even with his special little move). So pre-chewing the meat for him right now (with a carb) is a great way to get that meat in him. To do this, you take some Cheerios and some turkey meat and but it in the chopper (he can help too) and chop chop chop. :) It is not pureed, but it is pretty tiny! :)

The faces JJ are making are similar to the rumination face. Difference is stated above. So that is why it was easy for the mean House-like doctor to confuse rumination syndrome with the GER that JJ has. The specialist does not use the term GERD, but GER instead. She had Brian and I perform some food exercises ourselves and then look at each other while we were doing the exercises. I saw Brian making the face, but he was not ruminating. It will take some work to get JJ to be better able to eat. The Zantac he was on was not helping. Zantac (and other things like Previcid and such) do not prevent GER, but simply lower the acidity to that when you do reflux, it does not burn. The only way to get rid of the GER is to remove the foods that are causing it.

Basically the feeding issue is like a mountain of eight levels. At the top is the feeding issues. That is what we see. The bottom 7 levels are all seen, but usually not understood by the parent and is not taken into a feeding specialist until the feeding issues arrive. If only we had known to take him in when we saw the other signs, we could have avoided the feeding issues and weight loss. :( Unfortunately six of the seven levels below feeding have been compromised. Only the environment was listed as a positive (loving and supportive family, parents who care and seek best for their child, loving and playful good relationship with sisters). The other 6 areas are covered in the previous 5 paragraphs.

Thankfully, even though JJ was sick the day of the evaluation, because he is such a GOOD BOY, they were able to evaluate him and get what they needed to see from him. However, because he was so sick, we were not able to finish the talk afterwards (a 3 1/2 hour parents doctor conference). She was kind enough to skip her own lunch and give us the above information (which was about a 2 hour talk). We will be rescheduling for me to go back to get the plan of how we get him to where he needs to be.

The doctor said JJ’s case was very unique (and was upset at the trouble we were given in the hospital). But that there is great hope for a full recovery. First step is to get him off Elecare. She is also very supportive of the way we do things (more naturally) as well as supportive of us utilizing what we can in network (which she is not) so insurance covers it. And JJ is no longer on Zantac.

This is what we have been praying for. The specialst is truly an answer to prayer. I am glad it is finally happening NOW, but saddened that we had to go through so much, cause more damage to JJ, and waste so much time (and heartache in the hospital) over this. And while I wish that I had been listened to in the hospital, that it WAS his food allergies/sensitivities, again we thank God for the misdiagnoses of rumination syndrome. If it were not for that, we would not have gone down this path and finally be getting the help that JJ needs and deserves.

Your continued prayers are appreciated. It will be a long process with a lot of hard work (and also a lot of finances). Thank all those of you who did read this far. I know it was/is a lot of info, and it is only the tip of the iceberg of what we were told. But it gives you a bit of greater insight into JJ and the struggles we are currently facing. If you know anything about anything of the above and have suggestions, please feel free to share.

As for the bronchiolitis... We got in to see the pediatrician right after the evaluation ended (including her skipping her lunch to talk with us). The ped doc did a nebulizer treatment with abuterol. His blood oxygen level went from 88 to 92 after the treatment. JJ slept all night for the first time in a LONG time. I am not sure if it was the nebulizer treatment (which wore off long before bed) or what, I am just thankful he slept. He woke up and because he is not drinking/eating has little to nothing in his stomach. He had dry heaves almost every 40 minutes from 6 until 9, when he fell asleep and slept until noon. I did not give him any Elecare Thursday night (not knowing that he had to be weaned off it), but I do not think it would have made much difference as he would not have kept it down anyway. I think that not having that stuff in his system anymore is helping him to finally sleep! And it will allow him to heal from the bronchiolitis much faster.

Thank you again. Blessings, Paula (for all of us)

PS...I just want to add that if your child or a child of someone you know has severe feeding issues, and you are not happy with the care the child is receiving (like shock treatments - horrid I know), the specialist we are seeing is a pioneer in her field. I will be happy to give you her info and you can call and if nothing else talk to her.