More Meds

Friday I took Matthew to the regular pediatrician. For a little over a week, he has been throwing up between 7-11PM....maybe every other day. The doctor said he has a little bit of an ear infection. He explained that 50% of kids who get ear infections, they clear up on their own, even the bacterial. We decided to give him antibiotics because his immune system is still recovering from the ACTH. The doctor gave him "strong antibiotics".

The doctor felt that because he was draining, this might have upset his stomach...causing the throwing up.

Last night Matthew threw up a little bit. We wonder if he has some sort of baby GERD or something like that. Once we sit him up, he is fine. He burps a little, but doesn't always throw up. We have found that after his last bottle, if we sit him up for 45 minutes-ish we usually don't vomit. But, sometimes he falls asleep while drinking his night time bottle, so we don't sit him up.

It was taken with my cell phone, so it's kind of blurry, but he was getting his tummy tickled.

More progress...whoo...

Matthew is taking an interest in trying to roll over. He is just started to swing his legs but we are helping him roll over so he can learn how. His physical therapist showed me techniques to ensure we are doing it properly. He also has been trying to stand when we pick him up. He straightens his legs and can hold his weight for about 5 seconds....Then he gets jello legs. He smiles and loves it. His physical therapist has given us tips on how to help him stand for a few seconds without dislocating his shoulders.

six month meeting

Today we met with his Physical Therapist, his Case Manager and his Developmental Teacher. We discussed our treatment plan created 6 months ago. It was determined that Matthew had a slow start to improvement, but over the past 2 months, he had made significant improvements.

We were given tips to help Matthew improve and keep him on the right track. We are so lucky to have such a good treatment team who really care about Matthew and his development. We will continue with our current services.

EEG

Last Thursday Matthew was running a ever of 104.8. Once we gave him some Motrin and a cool bath, it started to slowly come down. It took about 24 hours and then it was normal again.

Friday was Matthew's EEG and follow up appointment with Dr. R. We are continuing to take Matthew off some of the harsh medications that he was previously prescribed. We are done with the ACTH (whoo!). Dr. R said that while Matthew was coming off the ACTH, it compromised his immune system. He said that if Matthew gets sick, he has virtually no way to fight the infection. This would explain the high fever an the vomiting Thursday. Dr. R suggested we go to the pediatric emergency room, if needed. Dr. R said that he was on call all weekend and he would be more than happy to help out with Matthew. He said that Matthew may need a bolus of steroids to fight an infections. But, he got over the bug without an ER visit.

The EEG lasted about 20 minutes. The results indicate there are no seizures present. However, there is still activity in the part of his brain that controls vision. The activity would probably turn into a seizure IF he were not on medications. This would explain why Matthew had a hard time watching us.

Dr. R showed me part of the EEG that was "perfect". So, the increased activity is not constant, but it's still present.

Matthew continues to smile, laugh, play, kick and wiggle. His appetite has been off, but he's been fighting the last part of this bug still. He is gaining more head control and does not need much support to hold his head up (he's like a 1 mo old with his head when he sits up with help). He seems to want to stand...if we put his feet on the floor, he pushes up like he is trying to stand. It's tough trying to hold a 25 lb wiggly/floppy baby up to help him stand. But, he's improving, so we do what we need to do.

Holiday Party

Tonight is the USAF's Holiday Party. Chris and I were planning on bringing Matthew. I had talked to a few of the other military wives and asked if they thought it would be a problem to bring our little guy with. He's very well behaved and he'd hang out in his stroller all night. I mean, he can't walk/sit up yet, so he's not going to be getting into any trouble. My thought on bringing him with, as opposed to getting a baby sitter, is he obviously has special needs. Not only is he on a lot of meds (which I'm sure a baby sitter could figure out) but he has a serious medical condition. We had an offer for someone to watch him, but Chris asked if she was familiar with seizures. She was not.

We would trust certain people to watch Matthew, but we don't have anyone out here that is familiar with special needs babies with seizures. We are concerned that IF we had someone watch Matthew, they would not know the signs/symptoms to look for. IF Matthew had a seizure, they won't know what to look for. And if they called 911, would they know what to report?

We're trying not to be overprotective parents and we have only had to call 911 once in the past 10 months, but we are not comfortable having someone watch Matthew at this point (who is not not familar with seizures).

OK, with all that being said, the other day, Chris's coworker strongly suggested that Matthew not attend. Chris gave her the whole thing on special needs, seizures, etc. She said she understood, but technically no kids are allowed. And I guess it just takes one person in the group to (not necessarily her) to complain about favoritism and it could ruin the party. So I'm not going to the Holiday Party this year.

At least I will be able to stay away from all of the tempting high-fat, high-calorie foods at the party.

It costs what?!

I thought I'd share how much our adventure to Chicago cost....well, the medical portion (not the gas, hotels, meals, fun stuff, etc).

His ACTH indictable medication, for 6 weeks, cost: $73,298.85 ~~I only had to pay for $9 for the ACTH! (Oh, and I had to pay $30 for the syringes at Walgreens). Kinda funny that the syringes cost me more.

His hospital stay at Children's Hospital cost for 5 days : $66,000 ish. They sent us our bill for $1800, but we called insurance and they said that they had the wrong policy number and our bill should be all covered!

We have had some positive adventures over the last few days. We drove down to the Ft. Lauderdale area, which is about a 10 hour drive without stopping for baby breaks. Matthew takes four medications, but they are not all at the same time....we take meds 5 different times a day (7AM, 10AM, 2PM,7PM & 10PM and every other day for injection). Some of his meds are three times a day, some twice a day. One he takes right before bed. I used to have to write them on a calendar to know what meds to give when.

Matthew did pretty good in the car. We drove down in two days, we used to be able to do it in one day, but with Matthew he gets fussy. Toward the end of the first day of traveling, he was trying to wiggle and he was restrained, he got upset. Once we stopped for the night, he was a happy boy.

He had a good Thanksgiving. We saw family that had not met him yet. He got lots of cuddles and smiles. He was in a good mood most of the time, but he also had his 1st cold. He has a wet cough.

I had a family member tell me about an experience she had with a medication Matthew is taking, Topamax. Topamax is also prescribed for headaches/migraines. My family members said she was taking 100 mg per day. At Matthew's highest, he was taking 150 mg day (he is now on 90 mg day). Keep in mind, this a a full grown adult reporting this story---she said one night she woke up from a dead sleep and thought she was having a heart attack or stroke. She was sick to her stomach, her heart was pounding, she was short of breath. She tried to wake her husband and she heard her words in slow motion. She realized she was hallucinating. After she went back to her doctor, they figured out it was due to the Topomax. It makes me wonder if Matthew had any symptoms like this. He has been on this medication since he was 4 months old...he started off at a low dose, but it was increased to 75 mg twice a day.

Matthew used to get so uncontrollably fussy and vomit every few days when he was at his highest dose. When we went to Children's Hospital in Chicago, one of the first things they did was LOWER his Topamax. He also seems more alert now that he's on this dose of the meds.

We have 12 days left on the ACTH (injection). Once we finish that, we will start to get him off the Topamax.

Matthew is sleeping better during the night, he is starting to look at us more. He constantly is kicking his legs....so much that his developmental teacher warned me he might get sore ab muscles. He doesn't complain about it, though. He "talks" to us a little more now. He has been cooing for about a month now, but he says, "Ah" when we talk to him...almost like a little conversation.

Baby Steps

Although these milestones are normal for an average 10 month old, these are new to Matthew. We are very pleased with the ACTH. Two nights ago we were getting him in the tub. His toes were under the faucet with the water running. He pulled back his legs to get them out of the stream of water. The was the first time we have seen him make the connection with his feet. He is starting to understand that if he feels something, he has control to move. He is also lifting his legs (somewhat) when I change his diapers. He hasn't raised his legs with control ever.

He is continuing to smile and laugh. He is very audio aware. When I was on base last week and the Blue Angels were practicing, one flew RIGHT over us. It was pretty low, too. It startled me and it made Matthew smile. He seems to listen and respond more (with coos) when we talk to him.

Matthew continues to show more emotion. For so many months, he was in a "blah" mood. Not happy, not sad. If he was fussy, I would hold him. It didn't make a difference. Now he had different cries and whines. (Like a normal baby should). He tells us when he wants to be held...we love this because he didn't care for so long if he was held or not. He tells us when he's tired, mad, happy, etc.

He's still not tracking us very well. We continue to work on this skill with him.

New Doctor

Monday was our initial appointment with Dr. R. He is in the same practice as old previous provider.

Dr. R commented on Matthew's helmet. He said, "oh he has a Star Helmet". Star is the brand. We were very impressed. The previous Dr had commented on the helmet being for seizures, not reshaping as it is indicated for. Dr. R feels that Matthew will outgrow the Infantile Spasms. He is going to work with us to get him off of most of his medication. We are going to keep the Keppra. Matthew probably will still have to live with Epilepsy. Dr. R was/is familiar with Matthew's ACTH medication. Because this medication is intense (and expensive) we wanted to make sure someone in the Pensacola area would be able to follow Matthew with confidence.

We follow up with Dr. R in December. We will have another EEG before his appointment.

Belly Laughs

For the first time this weekend, we heard Matthew have some belly laughs. He would giggle before, but now we're LAUGHING. It's not all the time, but Matthew is starting to respond to sounds. I sneezed the other day and he started to laugh. I also belched on another occasion. He found this funny, too. We haven't quite unlocked the secret to get him to laugh, but at least we're getting some good, real belly laughs. He typically starts to giggle to himself and then we interact with him to get him to continue.

Happy Matt

This is something we haven't see in awhile!! He was responding to me when I was talking and saying his name.

Last week's Neuro Appt...

We went to Biloxi the other day, so I haven't been keeping up with Matthew's progress. So here we go.

Last Monday I took Matthew to see his previous Ped. Neuro here in Pensacola....You know, the one that was treating Matthew for Epilepsy, not Infantile Spasms? Because I'm so non confrontational, WE decided to give him ONE more chance. He's so nice. But, as some of my friends have said, "do you want someone nice or someone who gets the stuff done". He was glad that Matthew had started on the ACTH. He was glad that Matthew had an opportunity to go to Children's Hospital in Chicago. He even thanked me warmly for attending the appointment that day.

I had some questions on this medication. I mean, when a medication costs $70,000 + a month for treatment, you don't get it at Walgreen's---so I can't just ask the local pharmacist. Dr. Coker in Chicago explained to me that children sometimes need two rounds of treatment. Each treatment is 6 weeks. I asked Dr. W (Dr. out here) how and when will we know when he needs another round, if he does. Dr. W. warmly spoke to me with his Latin accent and said that he wasn't sure if we started right when the first round was done or if we wait a few days/weeks. RED FLAG #1.

I continued to ask questions without getting answers I understood. I discussed with him that Dr. Coker said that Matthew's blood pressure needs to be closely monitored. I asked if I could swing by once a week to have it taken by the nursing staff. He said we could work something out. I'm near his office twice a week for physical therapy, so it's not a big deal for me. Plus, it's my son, I'll do whatever I need to do for him. By the end of the appointment, Dr. W says, "So you'll follow up with your pediatrician so they can graph everything?" I had NO idea what he was talking about. I thought we said we would follow up there for blood pressure...and now what is this stuff about graphing? And what are we graphing? When I asked for clarification, he basically used his hand to show me what a mapped out graph looks like. Yah, I get that, but WHAT exactly are we graphing? Weight? BP? I don't know. RED FLAG #2.

I told Dr. W about Matthew still rolling his eyes. I know they are seizures and Dr. Coker explained that "normally" once on ACTH there are NO seizures. He basically told me, "He's better though". That's what he's been saying for the past 5 months!!

When I checked out after my appointment, I softly said to the receptionist, "Um, what do I need to do to switch doctors?" I explained I have a hard time understanding him....but that's only half. I just don't feel comfortable with his experience with ACTH. The lady took my name/number and said she'd call me.

5 days later, I still hadn't received a call. I decided to call the RN at the office....I left her a message and within 3 hours she called me back. I was fully anticipating that I would have to fly to Chicago and follow up with Dr. Coker there. She said she talked to Dr. R and I can see him Nov 10th.

My regular pediatrician had been coordinating with Dr. Coker's office in Chicago. They agreed to see Matthew as a walk-in for BP checks. Dr. Coker's office basically said all they need to do is BP and check the site of his injections to make sure they're not infected. That's it. That's the great mystery of the "Graph".

I'm going to see how it goes with Dr. R. He is the main doc at this practice, he's been there for about 20 years, so I feel good with him.

Taking the good with the bad

With this medication (ACTH) we can have several side effects. One of the effects can be sleep pattern changes. He is up until about 1 AM and sometime later. He's up at 6, maybe 7 if I'm lucky. He sometimes takes naps, but we usually have busy schedules....this has been this weeks:
*Monday~ drive 60 miles each way to get his helmet adjusted
*Tuesday~ physical therapy/dropping grammy Forni off at airport
*Wednesday~ I drove to four pharmacy's trying to get his medication & in home therapy
*Thursday~ physical therapy & lab draw at hospital
*Friday~ pediatrician appointment
Those are just Matthew related things...I worked in between that, unpacked, etc.
We went a week without a seizure. Yesterday we were instructed to decrease his Keppra (ONE of his anti-seizure med) from 2.0 mL to .5 mL. He has been having seizures since last night. It's really frustrating because I thought we were on the right track and then we have a set back like this. I am going back to his 2.0 mL and hopefully we'll be better. Oh and hopefully I'll get to go to sleep soon. But, to see Matthew improving, it's worth it.

General info on Infantile Spasms

What is it like?
Here's a typical story: "At first I thought Chris was just having the little body jerks when he was moved or startled, like my other children had when they were infants. But then I knew something was wrong. The jerks became more violent, and his tiny body was thrust forward and his arms flew apart. They only lasted a few seconds but started to occur in groups lasting a few minutes. It was so hard to see such a young baby having these things."
Infantile spasms (also called West syndrome because it was first described by Dr. William James West, in the 1840s) consist of a sudden jerk followed by stiffening. Often the arms are flung out as the knees are pulled up and the body bends forward ("jackknife seizures"). Less often, the head can be thrown back as the body and legs stiffen in a straight-out position, or movements can be more subtle and limited to the neck or other body parts. Each seizure lasts only a second or two but they usually occur close together in a series. Sometimes the spasms are mistaken for colic, but the cramps of colic do not occur in a series.
Infantile spasms are most common just after waking up and rarely occur during sleep.
Who gets it?
Infantile spasms begin between 3 and 12 months of age and usually stop by the age of 2 to 4 years. They are uncommon, affecting only one baby out of a few thousand. About 60% of the affected infants have some brain disorder or brain injury before the seizures begin, but the others have had no apparent injury and have been developing normally. There is no evidence that family history, the baby's sex, or factors such as immunizations are related to infantile spasms.
Tell me more
When a baby with infantile spasms has an EEG, the doctor usually will see an unusual pattern called hypsarrhythmia (HIP-sa-RITH-me-ah) when the seizures are not occurring. This chaotic, high-voltage pattern is often helpful in confirming the diagnosis.
Babies with infantile spasms seem to stop developing and may lose skills that they had already mastered, such as sitting, rolling over, or babbling.
How is it treated?
Steroid therapy (adrenocorticotropic hormone [ACTH] or prednisone) is the primary treatment for infantile spasms. Some experts recommend trying a seizure medicine such as Sabril (vigabatrin, not available in the United States), Depakote (valproate), or Topamax (topiramate) before steroid therapy. In countries where it is available, Sabril is often used as the initial therapy because it is relatively safe (especially for short-term use) and effective. It is especially effective for children with tuberous sclerosis (a disorder associated with abnormalities involving the brain, skin, heart, and other parts of the body). Sabril is associated with damage to the retina of the eye and should be used with caution in children.
What's the outlook?
Most children with infantile spasms are mentally retarded later in life. Those whose spasms are related to an underlying developmental brain disorder or injury have a higher likelihood of moderate to severe retardation. The outlook is brighter for those who were developing normally before the spasms started: 10 to 20% will have normal mental function and some others may be only mildly impaired. Some children with infantile spasms develop autism. Many doctors believe that the quicker the seizures are controlled, the better the results will be.
When the spasms stop, many children later develop other kinds of epilepsy. About one-fifth of children who have had infantile spasms will have the Lennox-Gastaut syndrome.

Home Sweet Home

We survived our 20 hour back to Florida. There were only a few minor mishaps....oh, driving with the gas cap off-dangling from car. Oh, and there was the incident where I put Matthew's bananas on the roof of the car and we drove off. I have a nice banana blob on my rear window now.

We have not seen any seizures in almost a week now. We are coming upon new obstacles. From what I had heard, he would be "normal" in a few days. "Normal" is a subjective term. He is cooing A LOT! He is also awake A LOT. I have been up until 230 AM almost every night and then he's up at 6. They say the meds can do this. He's fussy, but he also popped a SECOND tooth in 5 days. We don't know if the tooth is what's causing the fussy or if the medication.

It's amazing having our little guy back, but we're also readjusting. He is left dominate, he does not use his right arm much. We are working on this in physical therapy. He has figured out how to put the back of his hand in his mouth. (left hand). For most 9 mo old, this is old habit, but it's new for him.

Being your child's advocate

The post below explains his catheter situation, but I learned something from it. My mother-in-law noticed that he was uncomfortable with his leg a certain way. We assumed it was due to the catheter and/or tape from it. Not thinking anything of it, we left it. A few hours later we realized how infected and sore it was.

Later that night, Matthew was still awake. It was past midnight..in the 1 o'clock hour. He hadn't slept much. But, who would with their catheter screwed up, right? At this point, his cath was out, but I'm sure he was still uncomfortable. Well, he had a seizure. I buzzed the RN and we were with him during the seizure. It was a "medium" seizure for Matthew. He had more severe ones earlier that day and the RN received an order for Adivan for that 1 seizure. Knowing this, the night RN talked to the doctor on the floor and got an order for Diazapam (AKA Valium). She kept saying, "this will help stop the seizure and help him sleep". I told her once he fell asleep, he'd be fine and he was probably going to fall asleep soon. She still brought the med in and started hooking him up to monitors. I started to get a feeling we shouldn't take this med. She put the monitor on that measures his heart and respiration.

It had been about a half hour by now, she was almost ready to give him the med. He was sound asleep and not seizing anymore. I said something like, "I don't think he needs that, can we hold off". I felt guilty because she spent a half hour setting up, getting the medication and even had to have another RN come in to help with the monitor. She said we could hang onto it that way if he has another seizure we would have it near by. Oh, and while she was talking about the med, she kept saying, "This will help him sleep". That didn't sit right. If we want something to help him sleep, I'd prefer a more gentle medication....like Benadryl.

Matthew slept the WHOLE night. In fact, he pretty much slept for 24 hours straight. He'd wake up occasionally, but fall back to sleep within an hour. His new ACTH med was/is kicking his butt. Obviously he didn't need an intense medication to help him sleep.

Go with your gut. Who cares if you upset someone.

Where to start??!!

I'm thankful that tonight is the last night in the hospital, however, I just found out that there are a few laptops on this floor for patient's to borrow. I guess I could've played online the past few days, but that's OK. I got to catch up on Dr.Phil and other fine, high quality shows :)

I guess I'll start at the beginning. Monday we went to see Dr. Coker (The Ped Neuro out here). He did a hands-on exam, something our Ped Neuro in Pensacola did not do. He gathered a detailed history. And then Matthew had a seizure in his office. Obviously I would never wish a seizure on my baby, but I was actually glad that he could witness this occurrence. He finished the exam and we talked medications. He asked if the Ped Neuro in P'cola discussed the medication ACTH. I said, "no". Dr. Coker went on to describe it. He mentioned it was very expensive--ah...I do remember our P'cola Ped. Neuro mentioning this medication. However, he did not go into details. Kind of like, "oh there is another treatment...but it costs A LOT of money". Well, Dr. Coker discussed the med, including side effects. They weren't as scary as I thought--let's see...weight gain, round (moon) face, mood/fussy change, sleep pattern change and glucose in the urine. I was thinking side effects like...kidney complications,etc. Those are serious, but not as scary. Dr. Coker said, "I'd like to admit him and run tests". I said, "let's do it". And here we are.

We had a 24 hour EEG. Matthew was also filmed during it, I think that is amazing! Then when the doc reviews that EEG, he can see spikes and see what Matt was doing. We did a 24 hour urine collection, IV, CT Scan and blood labs. The urine was through a catheter, which had complications. We were a few hours away from removal and we discovered the catheter was causing him to bleed, puss and a slight blister. It looked SO painful. It certainly explains the fussiness. When the Dr on the floor saw it, he kept flinching and gasping. It kinda looked a little like a meat ball. Not the shape it's supposed to be. The swelling has gone down, he is peeing OK, so we don't think there is internal damage, but there is a slit because the cath was pulled during the seizures. We'll have to see if he needs a stitch or something. Poor baby.

We started the ACTH treatment. The doctor said that we would see a difference in a few days. He wanted to keep us in the hospital to monitor the effects of the medication and he wanted to make sure that when we were discharged, we were having no seizures. We have almost gone 48 hours without a seizure! That's the longest we've gone since his first one!

I'm having a hard time with the injections. Everyone has said, "oh, you were born to give injections" referring to the fact I've been diabetic for almost 20 years. Let me just say, when it's your child, it's the hardest thing. I had a hard time watching him get his normal immunizations. Now I'm the one poking him with a huge needle. My diabetic injections are a small, short needles. His is a larger, thicker needle that goes much deeper. But, it is what it is. It's my baby, if it make him better, I have to do it.

I haven't been sleeping much. I haven't showered everyday. I've been with Matthew almost the entire time while he's in the hospital. I went back home once to shower and say hi to Morgan. Other than that, I've been by his side. I even started ordering my meals to come to my room (rather than going to the cafeteria) so I wouldn't leave him. It's funny because I thought I was tired and exhausted before, but this is even more intense. I think once we're home, Matthew will understand his surroundings and maybe perk up. He's also having diarrhea because of the antibiotics and has horrible diaper rash. He screams when I clean him up.

The plan is now to leave IL this weekend and drive back home to FL. My mother-in-law has volunteered to drive back with me. Chris is very busy and stressed out in FL (Did I mention our house was stuck by lightening and fried a some of our electronics/phone/internet/direct TV).

My goal was to be home by my 30th birthday (Monday, Oct 20) and it looks like we will!

Children's Hospital

I'm waiting for the RN to come in to have me give Matthew an injection--so I will be brief. We are admitted to Children's Hospital out here in IL. We have a diagnosis of Infantile Spasms, which is different that what we have been treating for--Epilepsy. We will be inpatient for a couple of days, the doctor is optimistic we will see results within a few days. He feels we will see Matthew have an uplifted personality. He feels that seizures will stop with this medication. The medication is called ACTH. I will write more in detail in the future. I will say, however, it is projected to cost about $200,000 for the course of the treatment. That is medication only, not hospital stay, not tests, etc. The medication is $25,000 per vial of medication. It is an intramuscular injection which I will have to give him. Matt's being a little trooper and we're hoping to see the difference in a few days.

Appointment with Dr. Coker

Friday I was talking to my dad when the house phone rang. It was the RN from Dr. Coker's office (Ped Neuro). She said they had an opening at 1030 AM Monday. Obviously I took the appointment. I canceled my December 11th appointment (which I had no intention of waiting for...I knew we'd get in soon, but Monday is sooner than I thought).

Chris leaves for Pensacola on Monday before Matthew's appointment, but his mom will go with Matthew and me. We still haven't straightened out insurance, we followed up on the referral status last Thursday. Dr. Banas (PCP) left several portions of the referral blank. She started to fill it out last Tuesday, so really it should have been accepted by now by the insurance. If she had called us to tell us she had questions, we would've assisted. The funny thing is, when we faxed the form that needed to be filled out for Tricare, we also faxed her a cheat-sheet that had all the addresses and names she needed to fill in.

Chris called Tricare and Dr. Banas's office Friday. She correctly filled it out and faxed it back to Tricare. It was not in Tricare's system at 600 PM but that's doesn't mean they hadn't received it. Either way, this is not stopping us from attending the appointment on Monday.

One step closer

I called the Ped Neuro that we would like to take Matthew to yesterday. I had his RN's direct line. She explained that there is a 2 mo wait for an appointment~BUT there is a stand-by list. I of course, was extra perky & sweet as sugar to her because she controls the list. She said that she goes down the list when there is a cancellation. She explained that she won't leave a message, so if person #1 doesn't answer the phone she calls person #2. I told her we're pretty much up here waiting around for appointment. She seemed optimistic that we would be in within a week or so.

Matthew's seizures have not really improving. He has been having seizures everyday still, but EVERY night he's have one between 10PM-12AM. It's frustrating bc he might be sleeping and he wakes up having them. Last night I had him in bed and he had his 11PM seizure and he threw up EVERYWHERE. It's frustrating and tough. We wish we could take these crappy seizures away.

BRRRRRR

No change in status yet for Matthew up here! We're having a nice time visiting family & friends. I'm getting to sleep in every other day (Chris and I are rotating). Unfortunately, I have a cold. But, when you change from 89 degree weather to 60 degree weather, it happens. Matthew is getting lots of cuddles, snuggles and love from friends and family.

We faxed the referral form that insurance gave us to Matthew's PCP today. It needs to be filled out by the PCP and then sent back to insurance. We'll call tomorrow to see if the PCP has completed this. Chris has bought his plane ticket back to Pensacola Oct 14. It would be nice if we were done by then, but I am not sure we will be. He'll then drive back up here after the appointments and we'll drive that fun, fun, fun drive back to P'Cola.

Moving Forward...and then back

We went and saw a new PCP today. She was very nice and was willing to work with us on a referral. She said that she writes her referrals on a prescription and then we take it to the specialist we want. This, of course, is VERY different when we get a referral from our military doc. We called up Tricare to see if this would be acceptable. Nope. The good news is, before we left his appointment, she said if they have another form to fill out, just fax it to her. So looks like Monday we'll be doing some extra work.

Rescheduled Appointment....

We didn't make our appointment yesterday. When Chris called to check on the status of insurance, they hadn't processed it yet. (although we faxed it). Although they said they would back date it to the day it was received, we decided to wait until Friday to see the Pediatrician ~ We don't want something to screw it up and it mess up our referral down the line.

Matthew has been doing well. He has been more interactive. But, last night he was up until midnight (I was up with him, lucky me) and then he had a seizure around 1230AM. He usually doesn't have night seizures, but the last two nights he has.

APPOINTMENT

We found a pediatrician today and she's going to see us tomorrow in Eglin! Then we should get a referral to a Children's Neurologist.

even little guys need a break

Just a quick stretch break in Indiana. We found a hotel near one of the gas stations and stopped to sunbathe and stretch.

We Made it!

After 16 long hours, we made it to Illinois! We ended up leaving at 1130 PM on Thursday night! Chris worked very late and by the time he got home, we loaded up the car and got going, it was 1130.

Matthew had two seizures on the drive up. He slept most of the trip. I guess when you leave at 1130 PM, it's a good thing for a baby...especially one that hadn't gone to bed yet.

He's had a few seizures today. We're still trying to get a PCP up here so we can get a referral to a Ped. Neuro up here. But, since it's the weekend, there isn't much we can do.

At least we can watch the Bear's game in Chicagoland tonight!

Today's the day...

We're planning on driving up to Chicagoland today. Yuck. I wish we could fly, but with the cos of airline tickets, cost to check extra bags (and with a baby, we have his pack/play, car seat, etc!) and the cost of a rental car in IL, we decided to drive. Okay, Chris decided, but he's probably right.

We have a busy day today. I have my calls (work) this AM. Then we have physical therapy. From there I have to drive to the hospital to get a copy of Matty's records, then we have to drive to Crestview. That's about 60 miles each way. That's where his helmet guy's office is; he had his head measured on Tuesday and it's improving. Whooo. But, he needs to make an adjustment. He said we could do it in two weeks, for Matty's next appointment~but we won't be back. So it's important that we get it taken care of today.

We have our leasing people doing a walk through of our house, too. It's our annual, I guess. So we have to clean the house and hide the kitties. We are claiming ONE small dog, so we have to find a place to store our 3 cats before he gets here. He should be here around 4pm, so we'll either stick them in our neighbor's house (if I see her, I'll ask) or we have to take them to Chris's work and store them in the break room!

Oh yah, did I mention I still have to pack? We still don't have a referral. We don't have an appointment. We're pretty much going into this blindly. But, we need to be up there to be put on waiting lists. I'm still hoping to be home by OCTOBER 20!

I also need an oil change. Other than that...hopefully we have a smooth day and a nice 16 hour drive.

Is that a seizure helmet?

Matthew has had his helmet for about 1 month now. It is to help his head grow properly, it still has a large flat spot, the helmet helps it grow into the correct shape. As long as his soft spot is open, we are able to help his head grow in the correct shape.

I have had TWO doctor's question the helmet. The 1st doctor was his Pediatric Neurologist. I had told him a few weeks prior to him getting it, that we had been approved. When he saw it for the 1st time, he said, "oh, is that for the seizures?" Um, no.

The 2nd doctor was in the ER last week. He was examining Matthew (not much bedside manner, by the way) and says, "Usually children do not require helmets for their seizures until they are older". I corrected him and explained it was to help the flat spot on his head even out. The doctor continued to exam him and said, "has anyone ever had trouble finding his testicles?" After a minute, he found them. Gee, perhaps this is another reason to get a 2nd opinion about Matthew's condition!

The Boys, Friday, 9-19-08

We're moving to Chicago...kinda

After I wrote my last blog, Matthew threw up. He threw up all of his medication and then some. It reassured me that we are doing the right thing about the 2nd opinion.

Chris called Tricare (our insurance) and they said all we needed was a referral. Too good to be true. When we spoke with Matthew's regular pediatrician's RN, she said that because we are in "Tricare South" we could have to pay a co-pay to go to "Tricare North", which is the region Chicago falls in. She spoke with someone at the Navy Hospital (where our Ped is) and they said that we would have to (1) pay 20% of total cost AND the copay or (2) set up temporary residency in Chicago for 30 days. I can't even imagine how much his tests will run, so it looks like Matthew and I are heading up to Chicago for a month.

The tricky thing is, in EXACTLY 30 days, not only is it my BIG 30 BIRTHDAY, but my mom flies to Pensacola for a visit. In 41 days, Steve flies out for a visit. Hopefully things will be resolved by then.

My ultimate goal would be to talk to insurance Monday, find out what it takes to "move" for 30 days and then talk to Children's Hospital and get an appointment ASAP. I'd really like to be there by next weekend!

My friend Laura, who is a RN near Chicago, works with a DR whose son is a Pediatric Neurologist who works with Children's! It's a small world and maybe this will be helpful to get a foot in the door!

We have our good days and we also have our bad ones

Today was an in between day,c but over all pretty good. Matthew slept a lot of the morning. When we got to Physical Therapy, he started to cry. He didn't want to get out of the car, I guess he was comfortable & relaxing. Once I got him in his stroller, he relaxed. We got back to the PT room and he was just not feeling well. He cried a little. Tuesday he had the best PT day ever, he was holding his head up so well. It wasn't bad today, but not as good. He has had 1 regular seizure, it lasted about 5 min. This is an improvement over 2 months ago, he was having 4 a day...and 4 mo ago he was having 10 a day.

We have decided to get a second opinion at Children's Hospital in Chicago. Chris has been talking to insurance and intake to get this process moving. We feel like he's on the right track, but really feel like we should make sure we're not just treating the seizures, but treating the cause, too.

Matthew in the ER (9/17)

He slept most of the time in the ER. He has a little IV in his left arm.

Popcorn, cookies and halloween candy pumpkins

I've never really blogged before (Wednesday, September 17, 2008). I don't know if this will even work. But, after some friends have said its theraputic and they can keep up on Matthew's daily events, I figured why not. So after a long day, I'm eating my dinner of pop corn, cookie's from the neighbor girl and candy pumpkin's, here I am.

Today is a good day to start blogging. It was eventful. At 400 AM, we woke up to the sounds of Matthew throwing up, except he wasn't throwing up. He was having a bad seizure. Usually when he has them, they are short, lasting a few minutes and he gets very angry. This time he was as stiff as a board. He was foaming at the mouth. His little tongue was sticking out and he was struggling to breath. Chris and I tried to snap him out of it. It didn't work. I looked at the clock, it said 415. My clock is 10 minutes fast. I noted that if he was still unresponsive/stiff at 420, I would call 911.

It's ironic, I have dreams about calling 911 and I'm unable. Maybe the numbers will fall off the phone or I get put on hold for hours. Thankfully, this was not like my dreams. I think the operator answered after 2 rings. My voice was trembling; I knew I had to hold it together. I started to choke up, but I managed to say that my 8 month old (close Marcy, not quite 9 yet) was having a seizure that he was not able to get out of. I said he had a history of them, she asked more questions and said she dispatched Fire and Medics.

It's true what they say; it was the longest 4 minutes. It seriously felt like 20 minutes. I rounded up the three curious cats and stuck them in the laundry room. I brushed my teeth and put on a bra. I turned on all the lights in the house. I thought it would help them find my house...it was so dark out and they don't have working street lights here (reason 13 why I LOVE Pensacola).

When the firemen arrived, they immediately starting giving Matt 02. He was no longer stiff, but he was not responsive. I surprised myself, I held it together. I've called 911 and had Medics/Fire on site when I worked in Phoenix in the psych clinic. It was like that, except it was a baby, not a psychotic, threatening, hallucinating man. Then I heard the EMT say, "Call the Medivac in". They asked me what hospital and we chose the hospital that his Pediatric Neurologist works.

I've already said this, but I was kinda disappointed that I didn't get to go in the helicopter. The EMT tried, but I was denied. They might have thought I'd be a hysterical mother. Who knows? I'm sure they had their reasons. The reason why he was Medivac'd was because the hospital is a 30 min drive.

Okay, so the hospital. Matthew was hooked up to monitors when we got there. He was a little fussy, but he was doing well. I'm actually kinda of glad that I didn't see them putting the IV in his arm. It's a helpless feeling.

5 hours later we were given the option of admitting Matt or going to his Pediatrician Neuro upstairs in the clinic. We opted to go see his Dr.

The Dr didn't change his meds. He said that he had basically a Grand Mal seizure. He said the seizures that Matthew have are "not typical". Most people, who have seizures, are unconscious, stiff and foam at the mouth (from what I understand). I don't think one is worse than the other, but this one was defiantly scary.

We're home now. I'm sitting next to my burnt popcorn talking to my friends online and texting. We're going to look into taking Matthew to Chicago Children's Hospital for a 2nd opinion. We trust our Dr, but it's the most helpless feeling in the world to watch a child go through something that seems unfair.