Will the third time be the charm?

Randy will have PE tubes put in for the third time this summer!  The first time was in July 2009.  The second time was in April 2010.  The third (and hopefully final) time will be July 2011.  The ENT doctor said that 15% of children have to get tubes a second time, and 2% of them have to get them a third time.  Some odds.

He will also get his adenoids removed at the same time.  He had an x-ray of his tonsils, adenoids and sinuses in December.  This was ordered by the allergist.  She urged me to follow up with the ENT.  I made an appointment in February, but then went the wrong day.  I was too lazy to reschedule so I just brought the results to our regularly scheduled appointment today.  His tonsils are slightly enlarged, but not much.  His adenoids were pretty large.  This combined with his 5 ear infection and persistent fluid behind his ears, warranted them being removed.

Next week: speech evaluation, CT scan, and neurosurgeon.

False Alarm

Well sort of. I took Randy to the ER Saturday fearing he was having a shunt malfunction. According to the Hydrocephalus Association, the symptoms of a shunt malfunction are:

In infants, signs include a full and tense fontanel (soft spot), bulging of the scalp veins and swelling or redness along the shunt tract. Also watch for symptoms like unusual vomiting, irritability, sleepiness and decreased interest in eating. Children and adults may experience headaches, vomiting, irritability and tiredness. In the event of an abrupt malfunction, a child may develop symptoms very rapidly, in a matter of hours or days. Without treatment, coma, and even death, may result.

Randy had been refusing his bottle, crying at night and eating very little for about 8 days. I kept going back and forth as whether to call the neurosurgeon. Saturday evening he threw up some. I wiped him off and kept playing with him. Then he threw up again; forcefully. That made up my mind.

I took him to one of the satellite ER's of the hospital where he gets his neuro care, not our local children's. He was seen pretty quickly; but we had to wait on them to call in someone to do a CT scan (I guess they are "on call" after hours). They also did an x-ray of his shunt.

The ER doc called the neuro on call at the main hospital, and he looked at the scans. All looked good with his shunt and ventricles, but he had a lot of fluid behind both ears. Also, his tubes look as if they are no longer in the ear canal. The ER doc sent us home with antibiotics and instructions to follow up with ENT.

Neurosurgery Update

The visit to the neurosurgeon was rather..... well, scary. It wasn't what he said rather than the apprehension in his voice and body language. The neurosurgeon we see is at the Children's Hospital in the next city which is about 50 miles from us. When Randy was in the NICU, he saw the neurosurgeon at the Children's Hospital here. The neuro here went out of the country for two weeks, and Randy had a malfunction. He was sent by ambulance to this other city for a shunt revision. The plan was for him to do his post op follow with this doctor, then be released back to the neuro in our city. Well last year, randy had 10+ revisions. He was getting a revision every 2-3 weeks; sometimes two revisions within the same hospital stay.

The neuro did not was to release him until he was stable. It was October by the time this happened. At this point Randy had more care under the neuro in the next city, than by the neuro in our city so we kept the care there.

Well this neuro is really good. He is young, but not scary new. He is confident, but not cocky. He is aggressive, but not reckless. And he really knows my son well. He stops to talk to him if we see him walking through the hospital for another appointment. But at yesterday's visit he seemed.........scared.

He needs to do a shunt revision. He says that the ventricle is just too large to do nothing. He is amazed that Randy is not feeling sick (this was the way he was for the June revision). But if you remember, Randy has a catheter in his right ventricle that is trapped by blood vessels. If Randy were to get a shunt infection post surgery, all of the shunt with the catheters would need to removed in order to effectively treat the infection. He said that there is a great chance of bleeding and stroke with trying to remove this trapped catheter.

So he is sending him back to the ENT to have him check his ears VERY carefully. He then wants to get another scan in two weeks (I think he is praying for a miracle where he does not have to operate). If the ventricle grows or remains the same, he will operate. If it is smaller, he will just watch it.

Pray with me for a miracle.

I'm almost afraid to type this.....

Randy is not sick!!! No runny nose. No draining ears. No sneezing. No fever. Only a cough late at night. I'm still holding my breath though because he is currently on antibiotics.

He went to the neurosurgeons on October 1st. The neurosurgeon looked at his current medications and said, "Does he have ANOTHER ear infection?" He asked this because Randy has been on antibiotics the last three visits. He was very upset about this. He wants to revise his shunt because the right ventricle that he is watching, continues to increase. But, he does not want to operate with him having an infection unless it is an emergency.

So he sent him to the infectious disease doctor on the following Monday. Although we spent almost two hours there, I must say that this was one of the best doctors I have ever taken him too. She explained about infections and how they respond to antibiotics and morph into different forms to trick the antibiotic (she sounded cooler and more knowledgeable when she said it). She decided to increase his dose of current antibiotic (Augmentin) to the max dose and extend it another four days. If his ear infection comes back when this cycle is over, she recommends three shots of Rocephin. The neurosurgeon should operate the day after the last shot. If his ear infection does not come back after the antibiotics, then the neurosurgeon is cleared to operate.

Randy gets another CT scan tomorrow and he is supposed to see the neurosurgeon on Thursday. Getting a return appointment to the neurosurgeon has turned into a part time job. When I left he office, I was told that the nurse would have to call me because there were no open appointments and only she could override his schedule to fit Randy in. I waited until Tuesday; no call from nurse. So I call on Tuesday and am told that the nurse is meeting with the doctor that afternoon and will call me with a time after the meeting. Still no call. I call on Friday and the nurse is not in; left a message.

So I can envision what is going to happen. Randy will get the CT scan on Monday evening. The doctor will read it Tuesday evening and on Wednesday some nurse will call me and say that I MUST get him in right away. She will give me some god awful time slot with no regard to my job. Word to doctors and nurses: NOT ALL CHILDREN HAVE A STAY AT HOME MOM!!

18 month checkup

So much has happened this week and I did not have any Internet since Monday night. I think the wind damaged some lines. The cable guy spent three hours at our house Saturday, so we are now connected!


Before I post about this subject, I want to say that I love his pediatrician!


Randy had his 18 month check up on Tuesday. I had a long list of things I wanted to discuss. Some of the topics were: growth, bottle, therapies, infections, allergies, and about a half dozen more. The visit started off a little frantic. It was packed in the lobby with all these kids and adults wearing masks. The medical assistant was actually one of the office managers. She smelled like cigarette smoke and did not know what she is doing. The old medical assistant was dry as week old toast, but she was competent.


Anyhoo, the pediatrician looked in his ears and said, "He has an ear infection." If you remember, I had just taken him on Friday and his ears were fine. He had an infection in both ears. He was given another antibiotic (a different kind) and was told to stop using the drops. Randy has an appointment in late November with the ENT doctor, but his ped wants me to schedule it sooner. I think he is finally as sick of these infections as I am.


He then read my list and began talking about all the things on my list as he examined his the rest of him.


Did I say that I love his pediatrician?!


He thinks that aqua therapy is a great idea once the ear infections are under control. We will look into hippo therapy at his two year appointment. He wants him to be re-evaluated for speech (the therapist suggested this in March after his last evaluation). He suggested that I apply for a handicap sticker. Although he anticipates Randy walking, how soon is still to be seen. He is still in favor of daycare despite Randy being sick.


We talked about allergies contributing to the cold symptoms and thus ear infections. He said it is possible, but not completely sure. He said that we will be able to tell a little if he gets better after ragweed season. I told him that we had an appointment for Monday. He was OK with us pursuing this avenue.


I love his pediatrician!


He was all for Randy continuing with his bottle. He says that he needs the calories and he would never drink the same amount from a cup (not that he drinks a lot right now). Randy did not gain much over the last three months, and nothing over that last two months. His stats were:

Weight: 20 lbs 4 oz

Length: almost 31 inches

Head circumference: 44.2 centimeters

He is on the curve for height, but at the lower end. He is not on the chart for weight on head circumference.


Finally, he diagnosed Randy with cerebral palsy. "Cerebral palsy is a group of disorders involving movement, learning, hearing, seeing, and thinking that occur due to problems with brain development and/or injury." Cerebral palsy does not get better or worse. Randy suffered injury with his brain bleeds that occurred due to his early birth. I have only told a few people and the first thing they have done is get really silent and if we were not on the phone they would have had their mouths hanging open. LOL.


I really took the diagnosis well. My ped had talked to me at the 15 month appointment. He was preparing me. I think he would have put off the diagnosis until the 2 year appointment, but I kind of pushed the envelope with my questions. I asked what symptoms Randy was showing that would lead to the diagnosis, etc... I finally asked, "Are you on the fence as to whether Randy has cerebral palsy?" He said, "No." Then I said, "Diagnosis it now then."


Many may be wondering why I would want this diagnosis for my son? I don't want my son to have cerebral palsy. I did not want him born three months early? I don't want him to have hydrocephalus. I don't want him to have a shunt. But my wanting or not wanting does not change reality. It is what it is.


Some of you may wonder how my doctor could delay such a diagnosis? It's because we are not doing anything different now that he has cerebral palsy than we would have done without the diagnosis. He will still get PT, OT, feeding, and speech. I will still work with him at home. Nothing changes.


Then what is the purpose of the diagnosis? I'm not totally sure. I do know that it lets the insurance company know that these issues are not going away. Maybe it gives us a leg to stand on when we are asking for money for therapies and/or equipment.


All I know is that my little boy was the same when we left as when he arrived. That is what is important to me.

Covering all bases

I am still trying to get to the bottom of my son's illness. It could be several viruses/infections occurring back to back. It could be one nasty infection that won't go away. It could be allergies.

I was talking to a coworker. I was telling him that my son has been sick everyday since August 6th; some days a little sick and some days very sick. He commented that he had been sick for almost a month. He says he''ll feel better for a couple of days and then it hits again. He said it is due to ragweed.

So I went to the Internet and looked up symptoms of ragweed allergy. Ragweed pollens cause miserable symptoms, such as sneezing, wheezing, sore throats and headaches. Additionally, hay fever from ragweed and other pollens can develop into complications such as sinusitis, ear infections, sore throats, cough and headache. Advanced symptoms can include fatigue, poor sleep and irritability.

I already have a call in to his allergist.

Searching for Solutions

I have been feverishly searching the Internet for ways to prevent my son from having these reoccurring colds and ear infections. There is some pretty scary complications from chronic ear infections. I kept finding the same ways to prevent ear infections: switch to a daycare setting with six or less kids (there are five); keep away from smoke (none of us smoke), sleep with a humidifier (done), and limit bottles and pacifiers (only a couple times a day).



Then I came upon a tip that I had not seen before; eliminate dairy. If you have read previous posts (6/18/09 & 7/14/09) you know that Randy is allergic to eggs and has trouble with milk. One of the things that has happened as he has started daycare is that I am not in as much control of his diet. When he goes to his sitter, I provide all the food. When he is at daycare, they feed him from their menu. They try to avoid milk and egg, but I am not fanatical about avoiding it since he does not have an anaphylaxis reaction.

Well according to several sources, milk allergies often cause congestion which can lead to ear infections. I know this may sound like a long shot to some, but I am willing to try anything. So I am off for more research so that I can overhaul his diet.

Guess what?

Randy's ears are draining again! Ugh!!!!

Streptococcus pneumoniae

What?! That's what I said. This is what Randy was diagnosed with on Tuesday. This is what has kept him sick with cold/flu/ear infection symptoms for almost a month. This is what was festering in all that ear drainage.

According to the CDC, Streptococcus pneumoniae (S. pneumoniae or "pneumococcus") is a bacterium commonly found in the nasopharynx (back of the nose) of healthy people. The presence of pneumococcus in the nasopharynx is referred to as "carriage". Most people have been carriers of S. pneumoniae at some point in their lives. Pneumococcal carriage is more common in young children, is usually transient and generally causes no illness. S. pneumoniae is an exclusively human pathogen and is spread from person-to-person by respiratory droplets, meaning that transmission generally occurs during coughing or sneezing to others within 6 feet of the carrier. Thus, carriers of S. pneumoniae, while generally healthy, are an important source of infection and disease for others.

Occasionally (Randy fits in the category), S. pneumoniae will spread from the nasopharynx of a colonized person into other parts of the body and cause diseases, including otitis media (ear infections), sinusitis (sinus infections) and pneumonia (lung infections). In addition, S. pneumoniae can sometimes get into places in the body that are normally sterile (free of bacteria) including the blood, causing bacteremia, or the lining of the brain and spinal cord, causing meningitis. When pneumococci get into these sterile places in the body, it is called "invasive" pneumococcal disease. A relatively small number of serotypes of S. pneumoniae account for most invasive disease. Invasive pneumococcal infections can result in serious complications or death.

So Randy is now on another antibiotic and is still using the antibiotic ear drops twice a day. He follows up with the ENT on Monday. He also gets a CT scan on Monday. I called the neurosurgeon's office and asked if this bacteria could penetrate the brain barrier resulting in a shunt infection. The nurse practitioner said it is possible, but unlikely. She said if his shunt were to get infected by this bacteria, the symptoms would be the same as any other shunt malfunction which is vomiting, irritability, lethargy, and possibly pain. I do feel better that he already has a CT scheduled just in case.

Unwanted house guest

We have an unwanted house guest and it won't leave. I call it the "cooties", but it goes by other names. Some of them include: fever, cold, virus, pneumonia, ear infection. I don't care what it is, I just want it to leave my baby alone.

As I stated in the previous post, Randy started daycare. His first day was Tuesday, August 4th. He began to get sick Thursday, August 6th and has been sick ever since. His only full week of daycare was the first week. He is only supposed to attend on Tuesday, Thursday, and Friday. The "cootie" reign goes like this:

Thursday, August 6th-Low grade temp
Friday, August 7th-Runny nose and sneezing
Weekend-fevers ranging 99.9 F-102.9 F

Monday, August 1oth-temp 103.5 F, sneezing, runny nose, cough
Tuesday, August 11th-visit doc, chest xray (normal), blood (normal); called it a virus
Wednesday, August 12th-fever breaks, cough, runny nose, and sneezing persist

Tuesday, August 18th-ears start to drain; cough, runny nose, and sneezing persist
Saturday, August 22nd-back to doctor; double ear infection, antibiotic and ear drops

Monday, August 24th-cough persists; starting to sound like a bark; go to urgent care; suspect pneumonia and pertussis (whooping cough); new antibiotic and nose spray
Tuesday, August 25th-No whooping cough; symptoms continue but not as severe

Have you noticed that we are in week three of the "cootie reign". I need some volunteers for my army so I can kick this thing out of my house!!!

Feeding Team

I want ALL of Randy's doctors to buy the same scale and calibrate them the same and measure his length the same!

Whoo; I feel better now. Randy had his follow up with the feeding team today. This was a long appointment where they want to see him eat and he is evaluated by the nutritionist, OT, speech therapist, nurse, and GI doc. His last appointment was in February. He grew more than two inches and gained 31 ounces. His current stats are:

Weight: 18 lbs 10 oz
Length: 29 inches
Head circumference: 43.6 cm

They were not pleased with the amount of formula that he is taking in. He is drinking 8-10 oz per day, and I sneak another 3 oz in with his cereal. They want to change him to a "toddler" formula once his allergy testing is complete. It really is more like a nutritional supplement. The nutritionist wants to try Pediasure (if no milk allergy/sensitivity) or Elecare Vanilla (if there is a problem with milk). Both of these are either 30 cal/oz or can be mixed to that. His current formula is 20 cal/oz.

I also learned that an ENT is part of the feeding team. He was called in because of the fluid on Randy's ear, the failed hearing tests, the lack of interest in bottle, and the summer ear infection. He was not in agreement with the "wait and see" approach. He felt that we had waited long enough and it bothered him that Randy had an ear infection in the summer. He says that is not a good sign about the fluid build up. He wants to proceed with tubes. He does not want to jeopardize his speech development, and he feels that the feeling in his ears could be jeopardizing his fluid intake. He was an amazing ENT. He took a "holistic" approach and talked about how many of these small issues were related and the larger implication, mainly his growth and development.

He consulted with the GI (who usually comes in, but sent the ENT instead) about ruling out any medical reasons for Randy not wanting his bottle. We know that some of it is related to solids, but he wants to make sure that his anatomy is working properly and that we are adequately managing his reflux. Randy will get a video swallow study and an EGD. He will have to be sedated for the EGD, so the tubes will be put in at the same time (that was the selling point for me).

I left the two hour appointment with my head swimming and wondering if the pendulum had swung the other way and we were moving too fast. But my gut is saying to go ahead with the tubes and the EGD. I have researched them and know that even if they were unnecessary, they will not bring him fatal harm and they will fall out in 1-2 years. I cannot risk my son missing any more months of clear hearing. He has enough hurdles to climb without me not removing one that I can. I love him way too much to know do all I can for him.

The little cold has....

turned into an ear infection. Randy developed a cough and the slight fever lingered over the weekend. I told myself that I would call the pediatrician if he did not feel better this morning. I always second guess myself when deciding to call the doctor or not. I don't to be a frantic mom that takes him to the doctor for everything; but I also don't want him to suffer unnecessarily. And Randy has a tendency to present such slight symptoms even when he is really sick. My daughter had chronic ear infections as a baby; and I always knew. She got sick very quickly. High fever, vomiting, screaming. You get the picture. Randy just barely runs a fever and does not scream. Usually the main indicator for me is his mood. He is generally so happy, and when he is ill he gets cranky. I knew to call when he cried all the way through physical therapy today.

Speaking of therapy, the OT tried the honey bear cup with him after his PT session. She ordered him one and wanted to try it before we saw the feeding team tomorrow. The honey bear cup allows you to squeeze the liquid through a straw. He did no better with this than any other cup. He would not close his lips around the straw. She said if she has to teach him to drink from a cup, she may as well teach him to drink from an open cup. This is a link to see the cup
http://www.talkingchild.com/shop_HoneyBearCupwithStraw.aspx

Randy goes to see the feeding team tomorrow. I was nervous about the appointment since he has not been drinking very well. But I feel better because he weighed 19 lbs today at the pediatrician!

BTW-We are cameraless (is that a word)? right now, so no new pictures.