Endocrinologist Follow-Up

We met with Dr. Chaudry today, she is Allie's Endocrinologist at the Marshfield Clinic.  This was a follow up appointment for her height and weight.  We were there about 4 months ago and Allie's weight and height were of quite a concern because they hadn't increased much.  It's basically the same story AGAIN! 

Allie weighed 28 pounds today and I cannot remember her height right now but it hadn't increased much since our last appointment.  Allie's weight is 1% on the chart and her height is at 4%.  Her weight is falling farther down the chart and her height is staying about on the same curve.

Dr. Chaudry confirmed today that Allie has very low muscle tone and very very weak refluxes.  The low muscle tone might help solve the reason that Allie always seems to fall. 

If Allie stays on her current height curve, her preliminary projected height (as the best case scenario) is 5 feet tall.  Dr. Chaudry said that Allie is a candidate right now for growth hormones but she said she would prefer to watch her for another year and then make the decision whether the hormones are right for Allie or not.  We agreed with this because in all honestly, we don't want to put Allie on growth hormones unless it's ABSOLUTELY necessary.

Allie had blood work done today to check for numerous things including, zinc, iron and vitamin C.  She also had another bone density X-ray of her hand.  Dr. Chaudry is thinking her bone age has fallen farther behind than before - but this will just confirm if she's correct or not.  We should get results to the tests within a week.

Right now we really need to focus on getting more calories into Allie.  With her ability to only handle small amounts of liquid every couple hours, it's such a challenge to get food into her.  We are thinking of putting her back on the pump at night - but that's just such a set back for her stomach and her brain communicating when her stomach is full, etc.  However, I have a feeling a set back might be what is needed in order to move forward with her weight issue.  We already add Duo-cal to her formula and she's on a 1.5 cal formula - so she's getting a high dense calorie intake.  If anyone has any suggestions as to how to add additional calories, please share them with me.

We are all getting ready for Christmas and the girls cannot wait for Santa to come.  We finally got some snow today and the girls played outside almost all day.  Well, I should say Chloe played outside - Allie isn't too wild about the cold.  She goes out for a little while but then comes in and warms up. 

We hope everyone has a very blessed Christmas and New Years - take care.

Surgery was successful

Allie had her dental surgery yesterday.  Not sure why but I thought this procedure was going to be a breeze for her.  I guess I didn't anticipate how scared she would be and how much pain she could have aftwerwards.

Surgery itself went great - it was the before and after that was so hard.  Allie freaked out when the nurse tried to take her back to surgery - it was awful.  Matt and I were both in tears.  Allie had received the verset medicine but apparently it didn't work this time.  She screamed all the way back to the operating room - yes, we could hear her! 

Surgery took about an hour.  I guess it takes a while to get the caps fitted and put in place over her teeth.  Allie's gums were growing around the back side of her teeth so they also had to grind down the gums all around her mouth - this would insure a good fit for the caps. 

Of course she woke up from anethsia kicking and screaming but this was like nothing Matt and I ever seen before.  Allie was completely inconsolable.  She was crying out, "mom, help me".  It was awful.  But, we managed and she's fine.  We left the hospital about 15 minutes after surgery.  Record time for getting out of there no doubt - I personally think the nurses (and staff) just wanted us gone because Allie was being so loud with her kicking and screaming.  If she was much bigger, I don't think I would have been able to even hang onto her.

Once we left the hospital, she calmed down and she was clonked out.  We didn't even put her in her car seat, I just held her in the backseat on the way home.  I slept with her for about 2 hours in her bed and when she woke up, she was happy.

Her mouth is a little sore but we are continuing with tylenol and motrin.  Out of everything, she says her throat hurts the most.  It's probably from being incubated - not sure. But she is handling the pain very well - she is even eating a little bit.

Glad this procedure is over and like I said, I totally under estimated this.  I guess I was thinking a dental procedure wouldn't be too difficult, however I was wrong.  This was awful for Allie.  Her mouth was bleeding like crazy, she swalled a lot of blood during surgery (we vented her stomach with her tube after surgery and she vented out a ton of blood).  Her recovery seems to be quick though - it's 24 hours since surgery and she's almost back to her normal self.

Thank you to everyone for keeping her in your prayers.  We truly appreciate it. 

In addition to Allie's surgery, our dog Cosmo was sick yesterday too.  She was scheduled to be spayed but woke up not being able to walk on her front leg.  I took her to the vet and she was diagnosed with lymes and anaplomosis.  It can be very serious but it seems we caught it early and she's doing good now.  She's on pain medication and antibiotics to keep her comfortable.

The Berndt household should be back to tip top shape in no time :)

Here are a couple pictures and video of Allie's surgery from yesterday.

Allie still happy before surgery

Allie not happy because they want to take her away

Both sick patients yesterday

Surgery on Wednesday

Allie had a regular dentist checkup last week and we didn't get the results we were hoping for.  Like many things with Allie, we are learning as we trudge forward with her medical issues.

Allie was born with enamel hypoplasia, basically born with no enamel on her teeth.  This makes her teeth very prone to cavities and other issues.  Allies dentist has been great and we have been watching her teeth closely for a while now.  In addition, Allie's oral development is delayed - not just in eating but in her teeth development as well.  Allies back molars came in but her gums never receded, therefore they are very close to her molars.  This is a prime spot for food to get stuck and it's almost impossible to get out.  All of Allies 4 back molars are severely affected by this along with the fact that they have no enamel on them. Allie's back teeth are decaying and we need to do something about it even though they are baby teeth.  She will keep these 4 molars until approximately age 12.

The only way to save these teeth is to cap them.  She will have 4 metal caps put on her teeth this coming Wednesday.  Due to Allies medical history and her fear of procedures, surgery, needles and everything else associated with doctors, her dentist requires us to have this procedure done at the hospital under full anesthesia.

Allie goes to her Pediatrician on Monday for a check-up to make sure she is well enough for surgery and then on Wednesday, Allie will have the caps put on her teeth at the hospital. 

Allie will be sore after surgery because they have to grind down her gums in the back by all 4 of her teeth.  In addition, her dentist said that having the metal caps will change her bite and it will feel like she has marbles in her mouth.  So, it's going to be uncomfortable no doubt but I am thankful for her feeding tube in case we have any issues with her not being able to eat even small amounts. 

This is not a major surgery but just the fact that she has to have this procedure done at the hospital and that I have to hand my baby over to the doctors AGAIN for her to be under full anesthesia, is scary.  As many of us know and experience, it never gets easier handing over your child to the doctors - if anything, it gets worse.  Allie is now 4 years old and knows what is happening - she's been through surgeries before and she knows what to expect. 

I'm positive everything will go smoothly and we will get past this hurdle with no major issues, but please keep little Allie in your prayers next week as she goes through this.  She is one tough little girl!

Our little Allie Rae

GI Follow-up

Allie had a GI follow-up yesterday.  It's been a while since she seen Dr. Brown so I figured this would be an interesting appointment.  I always get a bit sad going to these appointments because it's never "great" news.  It's not bad news, but not great either.

Allie's weight was 27.4 pounds and her height was 37 inches. Allie's weight has increased about a half a pound since May and her height barely increased.  She had a weight gain so it's not bad news but since the weight gain was very minimal in the last 5 months, it's not "great" news either.

Dr. Brown believes that Allie has become tachphylactic (immune) to her Ranitidine medication so he's putting her on Nizatidine.  This should help reduce stomach acid - which could be slowing her stomach digestion down and contributing to her delayed emptying.  She is also on Erythromycin but she may be immune to that also so they could switch her to Cyproheptadine in the near future.  The Erythromycin is used to help stimulate her stomach muscles in hopes that the stomach processes food faster.

In all honestly, it doesn't seem like the medication is doing much of anything, however what else do we have to try?  Gastroparesis is not fixable it's only treatable by medication.  There is only 1 medication that we haven't tried, Reglan and I refuse to try it on Allie.

Allie continues to only handle 3 oz of food at a time.  Her oral intake remains about the same and it continues to be sporadic.  I hate to complain because she is at least eating orally a little bit and that is what we ultimately hope for.  It's just very frustrating that her tiny little tummy can only handle 3 oz of food or she throws up. With her stomach only being able to handle such a small amount plus her delayed emptying, we are continuing to struggle getting enough food into her.  We have decided to try the Duocal again - this will add calories to her blends.  I'm not wild about it because it's "empty" calories for her but nothing less, they are calories and she needs them.

Allie is really enjoying Preschool and she is getting more brave at leaving me.  She doesn't cry when I bring her to school anymore.  It really helps that some of her great friends are in her class - that is such a blessing.  Allie is growing up quickly and her personality is showing it.  She's becoming such a big girl now and is enjoying being a little bit more independent on some things.  She still needs mom for most things - even getting her dressed.  However, I don't mind, she's my little peanut!

Here are a couple pictures of the girls playing in the rain.

Back on medication

Received a call from Allie's GI doctor saying that he would like Allie back on her Erythromycin medication and he wants to up the dose from last time.  He said that since her growth rate fell in the last 6 months, he's concerned.  With putting her back on the medication and with a higher dose, he's hoping this will increase her oral intake.

Erythromycin is used to help moved things along in the digestive track.  Since Allie's stomach doesn't empty properly, the doctor is hoping this medication speeds up her emptying so she feels hungry.  This medication should also help Allie empty her stomach faster for her tube feedings - so hopefully we can get more calories into her.

Allie has been on this medication previously, numerous times actually and we seen very little to no changes in her.  However, we are hoping this time it works, especially with the increased dose.

Allie started 4 year old preschool last week.  She's in class with some great friends so I am hoping she transitions a little better than last year.  The silly girl just doesn't want to leave my side - EVER!  We had a great summer but honestly, I'm happy school is back in session.

Allie continues to do good.  We have no knew possible diagnosis for her and we are not truly actively searching at this time.  I continue to do my research daily on possible diagnosis's, however we are still taking a break from doctors.  We pray daily for an answer but for now, we are just living our life and enjoying it.

Allie's first day of 4 year old preschool

Allie giving us a big smile!

Chloe's first day of 1st grade - they grow up too fast!

Endocrinologist Appt.

Allie had an appointment with her endocrinologist at the Marshfield Clinic last week.  Her appointment was a follow-up to monitor her growth. 

Allie weighed 26 pounds and is 37 inches tall. This puts Allie in less than the 3rd percentile for both height and weight.  Of course, this is nothing new, however her stats are falling once again on the growth chart.  Her curve is going downwards and the doctor is very concerned.

Allie's growth rate last year was 8.2% which is acceptable, however this year her growth rate has dropped to 4.8%.  That is too low according to her doctor. 

We are scheduled to meet with her Endocrinologist again in December and if Allie's growth rate does not increase in the next 4 months, they want to start Allie on growth hormones, which is an injection everyday. 

We have been tossing the idea of growth hormones around for her for quite a while.  We just didn't feel like it was right for her at the time.  However, depending on her next visit, the doctor is really going to push it.  Of course, we haven't decided if growth hormones would be right for Allie - we will make that decision when we have to.

In the meantime, we are trying to increase Allie's tube feedings, but continue to struggle with the fact that Allie's stomach is super small (cannot handle more than 3 oz) and the fact that her stomach doesn't empty properly.  So, it's always a struggle to get enough calories into this girl. 

On another note......Allie's behavior has been difficult again, a lot of whining, crying and not sleeping.  So, I decided to bring her to the walk in because I knew something wasn't right with her.  Sure enough, Allie has strep throat.  Poor little pumpkin.  I had been asking her if anything hurt and even asked her specifically if her throat hurt but she always said no.  One more example of how little Allie has such a high tolerance for pain.  She is now on her medication and we are praying it helps her feel better so in turn her behavior goes back to being happy.

Overall, Allie is doing well.  She is ready for preschool to start and so is mom!  Please pray that Allie's growth rate increases in the next 4 months so we don't have to cross the bridge regarding growth hormones for little Allie.  Thank you.

The girls being so big :)

Mito Blood Work Results

We have finally received Allie's blood work results for her preliminary mito testing.  Allie underwent genetic testing for TYMP mitochondrial gene testing as well as the whole mitochondrial genome testing.  All of her test results are entirely normal.  With these results, the doctor obviously doesn't want to do any further testing for mitochondrial disease.  This is a huge relief for us, however with normal results, it leads us right back to square one.

Allie's Geneticist wants to see her again in a year and they also have another metabolic Geneticist that would like to see Allie.  They have some possible additional testing they would like to do but it's nothing urgent so they will plan to do it next April.

It's been a while since I have updated Allie's site.  Seems as if life is just going bye too fast and there isn't time to fit everything in.  Allie's health is continuing to be good.  She is still struggling with her weight - still weighing in at 26.6 pounds.  She is eating maybe half of her food by mouth but it's sporadic of course.  Some days she does really well and other days she won't eat anything.  She's getting into a habit recently to just ask for tube feedings because she says she doesn't like the food.  She will take one bite of something then say she doesn't like it.  It's frustrating but we are just continuing to be thankful we have her feeding tube to keep her healthy.

No upcoming doctors appointment for Allie in the near future.  We are letting Allie enjoy her summer and trying to keep her away from the doctors as much as possible.  She is enjoying camping, our cottage, swimming and playing with her friends.  With the hot weather lately, Allie much prefers to be inside in the air conditioning.  Allie doesn't handle the hot and cold weather real good.

Overall, everything is going well.  Allie continues to be my spunky little girl. 

Allie graduated from 3 year old Preschool.  My little princesses!

Here is our new puppy Cosmo.  She is a 10 week old yellow lab.  She fits into our family circus perfect!!!!

Blood work for Mito

It's been a long time since I've updated Allie's blog.  Things have been going relatively smoothly lately.  At one of Allie's doctors appointments, a new doctor recommended Allie see a metabolic geneticist.  So, I scheduled her an appointment at the Marshfield Clinic in Marshfield and we met a new geneticist about a month ago.  Come to find out, Allie had extensive metabolic genetic testing done in 2009 when we first met the geneticist at Children's Hospital of Wisconsin. 

Our new geneticist recommended that we get Allie's blood tested for signs of mitochondrial disease.  She said that with Allie's digestive issues and other issues, she could have some form of mito disease.  Of course this has always been in the back of my mind but I know the actual testing for it is extensive and invasive.  However, the geneticist said that we can start testing with blood work and if anything suspicious comes back, then we should proceed with the muscle biopsy.

The blood work is thousands of dollars so it had to be approved by insurance, apparently it's been approved because I received a phone call this afternoon looking to schedule Allie for her blood work.  I'm happy it got approved.  The blood results can take up to 4 months to come back.  This is a long process and I know the waiting is going to be stressful.  I'm very nervous about the results. I'm happy that we are moving forward again with her medical issues, however this testing can determine a lot.

As for Allie's oral eating, she was doing great for about 2 weeks and this past week, she stopped eating pretty much entirely.  She is taking a couple bites but that's about it.  She remains on her Ranitidine for her stomach acid and she's also on erithromycin for an appetite enhancer.  Overall she's doing well and anxious for summer. 

Please keep Allie in your prayers as they do preliminary blood work for any signs of mitochondrial disease. 

Quick Catch-Up

My last post was about Allie's abnormal blood work. She had abnormal organic acid blood work. After that, she had plasma organic acid blood work and a urine sample done. All results from those came back normal.

However, due to the organic amic acids coming back abnormal, we are proceeding with a Geneticist as the Marshfield Clinic and we are hoping to have some metabolic genetic testing done. Allie's appointment is scheduled for April 12th.

We met with Allie's Neuro Psychologist a couple weeks ago and they did her behavior analysis. I got the results through a phone call this week (due to bad weather) and for her congnitive skills, she's in the the normal range. For spacial skills, she's in the high normal. The doctor confirmed that Allie's behavior is not typical 3 year old behavior, it's due to her chronic medical condition. Her Psychologist is recommending behavior therapy once a week. During this therapy, they are hoping to understand Allie better and hoping that she will help them determine if her bad behavior is due to pain, depression, anger, etc. Matt and I haven't fully decided if we are going to proceed with the behavior therapy - but most likely we are.

Allie had an endoscopy last Friday. This was ordered because Allie cannot handle full feedings. Anything over 3 oz and she vomits. During her last Upper GI Series, (a couple weeks ago), the Radiologist saw inflammation in her intestines. In addition, Allie has been complaining of stomach's aches daily. Her endoscopy went well. It was very hard to hand her over to the doctor this time - she's older now and understands everything that is going on. The doctor said that he seen a lot of infammation in her intestines but everything else looked good.

Got the biopsie results this week and everything came back normal. They checked her for celiac disease, deep tissue inflammation, lactose intolerance and the ability to digest certain sugars. Everything NORMAL!!!

Everything always seems normal, yet my little girl is not the norm. It's fustrating when all the results come back normal. Overall Allie is still doing good. She still is not able to handle her full feedings and she still complains of belly aches but besides that's she good. She is still spunky as ever :-).

Thank you for the continued prayers - we are continuing to search for answers so Allie can feel 100% healthy again!

The girls being silly

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Abnormal Blood Work

Allie's nurse called the other day and stated that Allie's organic amino acid blood test came back abnormal.

I received a copy of her blood work yesterday and it looks like this:

"Creatinine" - low
"Anion Gap (mEg/L)" - high
"Carnitine, Free" - low
"3-OH-Butyric Acid, Plasma" -extremely high
"Acetoacetic Acid, Plasma" - extremely high
"20 Ketoisovaleric Acid, Plasma" - high

On top of the report, there was a section called "Organic Acids, Plasma Interpretation".  This is what it says.  "ABNORMAL.  Severe Ketonemia suggesting catabolic state."

Not sure what all this blood work means but I'm not liking it.  The doctor called and had us go in on Tuesday right away for additional blood work and a urine test.  They are now checking her organic acids and checking for sugar in her urine.

I have been doing a little research on her test results but I haven't been able to find a ton of information.  Her doctor won't tell me much until the next round of testing comes back, my guess is he doesn't really know yet what it all means. 

We should get her new blood work and urine test back hopefully on Monday.  Waiting is sometimes the worst part!!!

Overall, Allie is doing good.  She has stopped vomiting since being on the new medication.  In addition, her behavior has improved dramatically.  She still refuses to drink anything besides water but that's why we are thankful for her feeding tube :)

Happy Feeding Tube Awareness Week (Feb 5-11)

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Speech Therapy Completed

So proud of Allie - she has made wonderful progress with her speech the last couple years.  She went from speaking a couple words to being completely mute.  Due to malnutrition, her brain had stopped developing and she was losing her speaking ability.  In December 2009, Allie received her feeding tube and started getting proper nutrition.  At that time, we enrolled her in speech therapy. 

Since January 2010, Allie has had weekly therapy sessions.  She has worked super hard at pronouncing her words correctly.  Allie and I have spent many hours at home repeating words and working on pronunciation. 

Last week her speech therapist said that Allie is, "age appropriate for her speech".   This is wonderful to hear.  I know there are still some sounds that she struggles with but apparently the majority of the kids her age struggle with it too.  So, her therapist gave me the following options on how to proceed:

1) Discontinue speech all together
2) Keep her on consult - basically meaning that Allie's therapist would evaluate Allie's speech every couple months to make sure she is progressing normally with new sounds, etc.
3) Keep her in speech but reduce her visits to bi-weekly.

I went with option #2.  We will keep Allie on the system and just evaluate her when necessary.  I will watch Allie at home and if I notice any new sounds that are not appropriate, I will have her evaluated right away, otherwise we will evaluate her at our scheduled times. 

Allie is very proud of herself for having completed speech class.  She is going to miss it though because she really liked her speech therapist (Mrs. O'Brien).  We have been so lucky to have so many wonderful therapist for Allie - we are truly blessed.

Some Test Results

We met Allie's GI doctor on Monday morning.  We received the final results of her Upper GI Series test, which basically showed there was no obstruction.  The test also revealed that she has inflammation in her stomach and the top part of her intestines. 

At this point, we don't know why her stomach and intestines are inflamed and who knows if we will ever figure it out.  Seems like there are always so many opened ended questions. 

Allie has started a new medication called "Ranitidine".  This medication will help her stomach not produce so much acid, hopefully this will help bring the inflammation down.  She is on 10ML twice a day by G-tube.  We are hoping this helps.

Since being off the Domperidone (Canadian medication), Allie has not complained of as many belly aches.  The doctor did confirm that with the inflammation in her stomach and then adding the Domperidone, it could have caused bad cramping.  So, since she is now off of the Domperidone, we have seen a decrease in her belly pain.

However, Allie is continuing to vomit solid food.  She is doing okay with her liquid, so we are thankful for that.  She still will not drink her milk though - she refuses to drink anything except water.  When I give her a feeding, I cannot put more than 3 oz in at a time because she's crying that she cannot handle it.  So, I know something is funny with her belly - and I'm not convinced the inflammation is the only thing.

Allie lost weight again.  She is back down to 26.2 pounds - that's quite a drop.

We have provided the doctor with a stool sample because Allie has had diarrhea for the past couple days.  They are checking her for Roto Virus, white blood cells and blood in the stool.  Still waiting for the results.  In addition, we are still waiting for the blood work results that were taken last Friday.

The last bit of news is that Dr. Brown wants to scope Allie again.  He is thinking she also has inflammation in her esophagus.  He would like to take biopsies and check for inflammation and eosinophils.  Her last scope was December 2010 so he feels it's time to do it again.  Her endoscopy is now scheduled for February 24th.  I'm not thrilled about this but I do see his reasoning in wanting to do it - it's just hard to watch your baby be put to sleep.

Allie rocking out

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Upper GI & Blood Draw Done

Everything went pretty well yesterday for Allie's Upper GI Series test.  The doctor originally told me the test would take about 2 hours but in reality it only took 20 minutes.  Allie refused to wear the hospital gown so she did the test naked - she thought that was pretty cool. 

The radiologist confirmed there are no blockages in her stomach.  However he did say (preliminary) that her stomach had inflammation and that it was emptying liquids slow.  That's about the only results I got from him. 

Her blood draw didn't go so good yesterday and Allie was very upset about it.  It didn't help that the staff were not the friendliest and Allie didn't like them.  They got her vein in the left arm first but then the blood stopped flowing.  They moved the needle around for about 3 minutes when finally I said that was enough.  They poked her right arm then and they got a vein after moving the needle around for a couple minutes.  This vein was pumping.  They were done and I was holding the gauze on her arm.  I lifted the gauze to see if the bleeding stopped and blood was running everywhere.  I freaked out and yelled, "something is wrong with her vein".  Blood was pooling under her skin and also squirting out.  They wrapped a tight bandage around her arm and called it good.  She has a bruise from it but nothing crazy big, I kinda freaked out for nothing.  But it was the first time I had ever seen anything like that - it was scary.

We meet with her GI doctor on Monday so we should get all of her test results then.  He is checking her blood for the following items:

- Comprehensive metabolic panel (COMP)
- Amylases (SAMY)
- Lipase (LIPA)
- Lactate (LACT)
- Serum Ammonia (AMMO)
- Pyruvate
- Serum Organic Acids
- Carnitine

Here are a couple pictures of Allie yesterday during her Upper GI Series test.

Allie before the test started

There is daddy

Getting ready to start the testing

Our big girl

Picture of Allie's tummy with the contrast material going in her tube

Flipping to her side

Allie during the test

Almost done

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New Plan - Test Today

Allie's nurse called us back yesterday afternoon with a new plan.  Dr. Brown is concerned because of Allie's new symptoms so he requested that she get an Upper GI Series immediately. 

Allie is scheduled to have an Upper GI Series today at 10:30 at the local hospital.  The test is non-invasive however it will be a bit uncomfortable because they fill her tummy with gas and then make her drink barium.  The test will perform a series of X-rays to follow the barium through her esophagus, stomach and the beginning of her small intestines.  They are looking for any type of obstruction or just anything out of the ordinary.  According to the nurse, the test should take a couple hours.

In addition, they will be doing extensive lab work at the hospital to check many other things.  I haven't told Allie yet that she needs blood drawn - I'm going to wait until the last minute to tell her.  If there is one thing she hates the most, it's getting her blood drawn.  Poor pumpkin!

We have an appointment with Dr. Brown on Monday morning so we should be able to receive her test results for her Upper GI Series and all of her blood work. 

Please pray that Allie's test goes smoothly this morning.  I know it's not a difficult test but it's difficult for Allie because she doesn't understand everything that is happening.  Thank you!!!

This is Allie's size shovel :)

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Waiting on the doctor.....

This is day 3 and I still hadn't heard back from the doctor on how we should proceed with Allie.  With her new symptoms not improving, I"m getting worried.  I have called our nurse everyday and requested they get back to me but nobody ever did.  Finally this morning, I had enough!!!!

I just got off the phone with our nurse and she could tell that I was getting upset about not getting an answer from them.  I told her I needed an answer today or I would be in the waiting room waiting all day to see Dr. Brown.  She promised me she would get with Dr. Brown (no matter how busy he is) and sit down with him and discuss all of Allie's symptoms.  She would get back to me before the end of the day.

In addition, Allie is scheduled to have a weight check on Monday at 10:45, she is going to make that a regular appointment instead of just a weight check.  She said that Allie has too many new symptoms to just handle it over the phone - I agree with her 100%!!!

So, we should be getting some sort of plan from Dr. Brown this afternoon.  That's a relief - we'll see what his thoughts are.

I put Allie on the scale last night and she was 26.6 pounds :(  Poor pumpkin has lost weight yet again. Now I'm really stressing because she was 27.4 pounds at her last visit in December.  As I told our nurse, I am not able to give Allie her full feedings because once I get over 3 oz, she is screaming that she cannot handle it.  Her tummy hurts and she's going to throw up.  In addition, Allie has been vomiting solid foods that are just sitting in her stomach so that's lost calories also.  Uggggg......it's always a weight battle!!!!

Allie's behavior has been something else also - it's gotten a bit worse.  I really believe she is in pain.  At night I have had to give her Tylenol just to sleep.  She is very attached to me AGAIN and won't leave my side.  Just last night I was running to the store, there was no chance she was staying home with Matt.  She had to come with me, she just cannot leave my side.  Today I was bringing her to school and all she did was scream that she didn't want to go because she wanted to stay with me.  Yesterday she was laying in bed, woke up and threw a tantrum because I wasn't right by her side.  Matt walked in there and she was so mad because she wanted me and not him.  He tried helping her but she ended up pushing and kicking him and just screaming harder.  The minute I walked in, she calmed down.  Allie has always been attached me and she doesn't like very many people, but to be this attached all of sudden is alarming.  Something has got to be going on with her and I just don't know what.  Praying for answers!!!!

Allie with one of her new dolls at Christmas - yup, it's almost as tall as her :(

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Tummy Problems

A quick update from my last post, Allie's black stools were caused from constipation.  I ended up giving her Ex-lax one afternoon and she was up all night pooping.  After that, she didn't poop for 4 days but once she started it was back to normal.  So, it turns out the medication was not causing internal bleeding in her stomach - what a relief!!

However, new things have been happening with Allie.  To keep things short and sweet, I'll just list them:

1) She complains daily of a stomach ache.  Allie previously never complained of tummy pain, now it's daily and it really seems to bother her.  She normally lays down or just wants to be cuddled when her tummy hurts. 

2) She is randomly vomiting.  Seems she is throwing up solid food from hours and hours ago.  Food that no doubt should have been digested.  Allie had been vomit free for a year and now she's starting to vomit randomly.  It's never during a feed though - this is something different.  Her vomiting is forceful, it's not a vomit like when she has too fully of a tummy from her feedings.  When she first started the vomiting, I thought she had the flu, but it went on and on and it was random.

3) I cannot get her to eat barely anything and even more strange is I cannot get her to drink her milk.  Allie always drank a fair amount of her formula (milk) each day, now she won't touch it.  She only will drink water.  Of all things - water!!!!!  Don't get me wrong water is good for her but I wish she would pick a liquid with calories. 

With these 3 things happening all together and they have been going on for a little over a week, I have decided to stop her medication (the one from Canada) immediately.  So as of Friday, she has been done with her medication.  I'm assuming it will take several days for the medication to get out of her system.  As of today, she's still complaining of belly pain, she won't drink her milk and she is still randomly vomiting.   So, I'm not sure what is going on but I'm not liking it.

The other thing that is possible is her tummy is shutting down more.  She might be not be able to handle any solids at this time and maybe her rich milk is causing her to have stomach pains.  Praying her stomach is still functioning at the 16% or higher, but from the symptoms we are seeing, it's somewhat unlikely. 

I'll be keeping a close eye on her and talking with her GI doctor again.  Right now I'm not freaking out but if this continues even after the medication is completely out of her system, I will be stressing!!!!

Besides these new symptoms, Allie is doing good.  We are still waiting to hear back from the Achieve Center to schedule her evaluation on behavior issues.  I am hoping to get an appointment set up sooner rather than later but right now her behavior is not top priority, her tummy is :-)

Chloe & Allie pretending to take a nap together

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Black Stools

Allie has been on her new stomach emptying medication (from Canada) "Domperidome" for about 2 weeks now.  We have not seen her oral intake increase yet, but we have noticed one big thing....

Allie is having accidents in her pants now.  Every evening she is pooping in her pants.  Each time, she freaks out because she doesn't like it.  I asked her why she's pooping and peeing in her pants and she said she doesn't know why.  I feel bad for her because I don't think she's doing it on purpose.

In addition, her stool is black and tarry.  We don't know if the medication is causing this or if it's because she's slightly constipated.  Her GI doctor, Dr. Brown ordered a stomach X-ray immediately on Tuesday and it showed mild constipation.  I gave her milk of magnesium and she had one bowl movement yesterday but then pooped in her pants again in the afternoon.

Domperidone can cause stomach bleeding so we have to watch her very carefully in case she has bleeding in her stomach.   With her black stools, the doctors aren't sure exactly what is happening. 

The plan for right now is to give her ex-lax and hopefully that will clean out her system.  If she continues to have black stools after that, we will need to do a stool study right away.  Per the doctors request, we are continuing with the "Domperidome" unless she shows signs of a fever or anything else. 

So, we sit and wait for poop and pray her poop is normal. Hopefully we can figure out why she is having accidents in her pants, but according to the doctor, the Domperidone could be causing it.  So, we'll see - we'll give it a couple more days and time will tell.  For now, I'm trying to decide if I should put a pull on her or pray she makes it to the toilet in time when the ex-lax kicks in :)

The girls with their Thanksgiving hats

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Behavior Problems

As many of you know, I have struggled with Allie's behavior since she was born.  Allie was born being stubborn and strong willed.  Part of me is happy she's like this because as we all know, a child with medical issues is normally strong willed and stubborn and they beat the odds.

However, 3 years of fighting this behavioral battle with Allie and I'm at my wits ends. Between dealing with Allie's behavior issues and being in charge of her feeding and medical issues, I've got my plate full.  I am the one who primarily parents the children since Matt works outside the house and I'm the sole one who tube feeds Allie.  Not sure why my husband thinks he doesn't have to tube feed her but he hasn't given her a feeding (or medication) in I don't know how long.  Even on the weekends, I'm the one who gives her all her feedings.  Sorry Matt, I'm throwing you under the bus but I'm only stating the truth!

Anyway, sorry for that soapbox, but after witnessing Allie's behavior everyday, I'm convinced there is something wrong.   I set up a special appointment with her Pediatrician to discuss her behavior and to get suggestions on how to help us out.  Her Pediatrician thinks Allie's behavior is normal and it's typical for her age.  Ummmm.....I honestly don't agree with that.

I don't want behavioral help for Allie simply for my sanity......no, it's bigger than that.  I have two major concerns when it comes to Allie's behavior and if one of the items below is true....I would feel awful if I didn't get her help!

1) She could be depressed and we don't know it. With having medical issues and no control over them, maybe she is generally just not happy with life. If she is depressed, I want to make sure we figure it out and help her the proper way. Allie receives a ton of love and affection, especially from me since I'm generally the only person she likes on a daily basis. However being depressed sometimes requires more than just love & affection.

2) She could not feel well. It's possible Allie just feels crummy all the time, maybe her tummy hurts, etc. So, she's just unhappy because she's constantly in pain. She doesn't complain of being in pain but I do know her pain tolerance is extremely high. So, maybe she's just developed a new normal which includes pain and that is why she's acting out.

No matter what is actually going on in Allie's head when her behavior goes astray, I will continue to push for answers.  I need to make sure that Allie is okay!  I've contacted Dr. Morhland, a Neuropsychologist in Wausau and I'm hoping to get in with him sometime this month.  I will push for answers and maybe I'm totally wrong and Allie's behavior is age appropriate, but honestly if her behavior is age appropriate now, I'm dreading the day she's a teenager - lol.

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