David Jeffery Seveland

Hi everyone.  Well I am back with an update on David.  We have had a couple more appointments with 2 more to follow shortly.  I just wanted to fill in everyone on his latest appointment with the Orthopedist.

Well David is still growing.  He is roughly 41.5 inches tall and 41.5 lbs.  He is a tall and heavy little man.  He has a small leg length discrepancy(lld) at this time of 1.1cm.  When he is in a growth spurt his lld usually gets up to 2.5cm.  He has been complaing of a lot of hip pain in both hips and knee pain in his right knee.  He is also complaing of lower back pain.  This is something that I don't think a 2 yr old should be complaining of.  Well his Dr. took a lot of x-rays to see what was going on and his shin bones are the same length and the difference is in his thigh bones.  His left leg is longer.  We were also told that he has "the flatest feet ever."  His right ribcage is protruding slightly so they took several x-rays of his spine to check for scoliosis.  He has a 10 degree curve in his spine so we are going to watch it.  There is really nothing they can do at this point.  Once the difference reaches 20 degrees then he will be given a back brace.  So we are relaxing for now.  We were also given a prescription for a lift and arch supports.  His 1cm lift with be incorporated into his right arch support insert.  The doctor is hoping that the lift will help to stop and possibly correct his scoliosis.  They are not sure if the scoliosis is due to the lld or the ribcage but one way or another we will figure it out.

Well that is about it for now.  We are meeting with Dermatology next week and Neurology on April 21.  Hopefully we will get answers from neurology as to why he had seizures and why he lost his speech as a result.  I will definitely keep you posted.  Thanks a ton for all your support.  Without it we wouldn't be as strong as we are today.

Thanks a ton.

          Well it's time for a new year.  These last 7 months I have been kind of absent from this site.  I needed a break and I think I'm good now.  We are starting our rounds of appointments for this year.  David has come a long way this year.  He goes to the elementary school for speech one day a week.  He has come so far.  We can actually have a conversation with him now.  He is using 4 words in a sentence most of the time.  He is also questioning everything we tell him.  But that's the fun of a 2 yr old.

          We go in on March 6th to see Urology.  Hopefully everything is still good and David's hydronephrosis has not gotten any worse.  I am also hoping that he can give me some answers about potty training.  Is he just a stubborn boy or is there pressure on his bladder making him pee every 15 minutes.  He doesn't go much past that without an accident.  So there are a lot of accidents.  But eventually we will get the potty training thing down.  On March 17th we go see the Orthopedist.  We get to see what the true LLD is at that time.  David has been complaining of Hip and Knee pain in his right leg.  He has also recently been complaining of lower back pain.  I hope this isn't a sign of what he is going to face in the future.  Hopefully we can figure this out now and see what happens.  We are also getting him checked for Scoliosis at that appointment.  We go to Dermatology on March 26th.  This is just a follow-up to see how he is doing and to check on his birthmark.  I'm not expecting anything from this appointment.  I am also trying to get in with a Pulmonologist/Allergist to get that under way.

          April is an exciting month for us.  We finally got ahold of the Neurologist and on April 21st we go see her.  I get to bring her a list of everything that has happened over the last 16 months and see what her plans are.  Hopefully we will get the follow-up MRI of his brain to make sure his seizures caused no long-term problems.  This is the only appointment that worries me.  I am just scared to see what we find.  Hopefully nothing.

          Well this is an update of our last few months and an early look at the upcoming few months.  I will keep things posted on here periodically.  Other than being busy we are all good.  Be back soon with more information.

Well, I finally got some sort of an explanation about the pathology results.  The simplest explanation is that it is some sort of a Lymphatic malformation.  It is a group of enlarged lymph nodes with extra lymphatic tissue present.  It also has enlarged lymphatic vessels running through it.  We were told that this kind of a malformation is the most common type found in children.  However, it was almost twice the size of the standard malformation of this type.  Found on it's own there are no problems but because David has so many other issues and symptoms it is most likely the result of a bigger syndrome.  There is also a very good chance that he will get more in his neck and other places on his body as well.

It is not the common lymphatic malformation commonly found with KTS so that brings new questions.  The malformations most commonly found with KTS consists of a Lymph node or nodes that are filled with Lymphatic fluid not tissue.  These are usually squishy to the touch and David's was solid.  We have also been told in the past that we should expect any of these types of malformations to appear in his lower extremities.  This one was in his neck so that also brings new questions to the surface.  It is also very Odd that it showed up in his neck where there is no birthmark present.  So we are still confused. 

There is a new Syndrome that was looked at in the beginning and then crossed off our list.  Well it is now higher on our list.  It is Sturge-Weber Syndrome (SWS).  David had several mild seizures back in December and January that we noticed.  The entire body would tense up and he would get a very blank expression.  This would last for 30-45 seconds and we would have to help him relax the muscles in his right arm and hand because he couldn't.  This makes since with the left side of his brain being larger and the right side of his body being more affected.  We were told at the time that they were pain induced because he got 8 teeth in a 6 week period and there was nothing that could be done for them.  Now there is belief that they may have been a result of SWS.  The left side of his brain is larger than the right and he has a small venous angioma in the right frontal lobe, there is a birthmark that shows up on his right temple when he gets very angry, and his speech is delayed.  All of these symptoms mixed with the malformation in his neck lead us to SWS as more of a possibility.

We don't really know what to think at this time.  We have been told that we need to go see our Geneticist, Dermatologist, Neuroligist, and Vascular Specialist to find out what they want to do.  I don't plan on visiting any of them before the middle of August so I will keep ya'll posted.

Oh I also want to mention that David was just accepted into the school system for speech therapy.  YEAH!  We find out on August 12th exactly what the plan is and how many days a week he will recieve assistance.

Toodles, Amber

Hi all.  We finally got pathology back.  I do not know what it means yet but I will share what I do know with you all.  Well we have heard it is completely Benign.  YEAH.  That gave us all a great feeling of relief.  Now for the stuff I don't know.

The report states as follows "Benign reactive follicular and paracortical lymphoid hyperplasia with associated ectatic lymphatic vessels."  I have an appointment with our pediatrician to hopefully find out what this means and find out where we go from here.  The pathology report does say that this is something that is found with Klippel-Trenaunay so I don't know.  I kida want to go and shoot all the doctor's that have told us he doesn't have KTS.  That now totals Boston and his vascular team in Norfolk.  Guess they aren't as good as they claim to be.  Our other doctors seem to be the only ones that thought he had it.  But anyway.  We will know more next week.  We will probably have to get in with all our other doctors now but that is OK.  We can handle it.  I will keep you guys posted.  Sorry I haven't updated it sooner we weren't expecting it to take 3 weeks for pathology to come back.  That's what has taken so long.  As soon as I find out exactly what the mass is I will be adding a page for that.  Just wanted to let ya'll know.  Talk to ya soon.

Amber

Hey everybody!  Sorry I haven't been on and updated in a while.  Things have been busy and with all the stress I have avoided the computer.  Well I am back and over the next week or so I will be adding new pictures, updated information and new blogs.  This will just be a sort of update since march with more info to come throughout the week.

Well, since the last blog David has found a vascular team.  We went to Norfolk to meet with them in the beginning of April.  It was a very good visit.  We met with a Plastic Surgeon, Dermatologist, and a Vascular Specialist.  They scheduled some very needed tests for David, that had good results.  David was also interviewed, in April, by a county program called Paeds.  It is a "No Child Left Behind Program" offered through the county.  At 20 months his speech was at a 12-13 month level.  He is now receiving speech assistance from a Speech Educator.  She comes to the house once every 2 weeks to work with us and him.  We are getting ready to have him evaluated by the school system (Childfind Program).  This program will allow David to get help twice a week for free through the school system.  He will be put into a 2yr old preschool program that is from 9:30am-11:30am on Tuesday and Thursday, if he is accepted.  Hopefully he will be accepted.  David had surgery last Wednesday (6-11-08).  He had the enlarged gland in the right side of his neck removed.  He is recovering fabulously.  We have not received pathology back on the mass as of yet but are patiently waiting.

I will keep everyone posted with the updates.  And remember that I will be posting more detailed letters very shortly. 

Thanks for understanding.
Amber