Frustrated Parent

My daughter was dignosted with VWD when she was 5 years old she is now 7. She has always been full of life and energy. Over the past 5/6 weeks she has not been herself. It started with her not running around like a crazy kid. I put it off as her growing up. Then about 4 weeks ago she started saying she didn't feel good. I asked her what hurtbut she can't tell me. I have asked her in different ways but still nothing. I thought maybe she need a little more attention from me but still she tells me everyday afew times a day she feels bad. I have taken her to her reg Dr and I'm being told there is nothing wrong with her. This past week I have found her laying on the floor alone in her room. When I asked her what she was doing she said resting so she could play somemore. I again asked what was wrong and she would say she just feels bad. I don't know what to do. I feel like it may have something to do with her VWD but I just don't know. We have also moved away from her hematologist. I have called to get an appointment with another one close to were we live and they adv me that it would be mid April before she can be seen. I don't know what to do until then. When a child has VWD does it make you feel bad all the time? She tells everyone, step dad, grandparents, teachers, school nurse. The only person she doesn't tell is her dad. If this is normal how long does it last? How do you help them feel better? What can I do?

Sorry to here your daughter isn’t feeling herself, I’m not a doctor so I can only tell you what my experience is with VWD. As a child I always complained of aches and pains, never quite felt right and was and still am always tired. My mum constantly took me to the GP who constantly put it down to just growing pains and anaemia. As I grew up my tiredness and fatigue where put down to other medical conditions I have, through numerous hospital visits and appointments I was finally diagnosed with VWD and a platelet disorder when I was 34. My son was born when I was 32, he was tested when he was about 3 but not at a haemophilia centre and they said he didn’t have it, he was distraught at having the blood test and at the time I didn’t realise this could alter your VWD levels. My son was always bruising and his bruises lumpy so I sought a second opinion. When my son was about 5 he was finally diagnosed with VWD. He has always been active but does walk on his toes, the last 6 months or so he complains when he does any exercise, he complains of chest pains, pains in his legs and general aches a lot like myself. I do feel this has a lots to do with VWD but every doctor I have mentioned this to disagrees. Sorry about the long post, I hope you find an answer for your daughter and she gets back to her normal energetic self soon :slight_smile: hugs for you both x

Dear Lisa,

I am a 73 year old parent who has lost two children (they were middle-aged when they passed). I am not a medically trained person but as you suspect, I might be familiar with depression. It has run in my family for generations.

The behavior of your child strikes me as falling in the area of “depression”. Depression is a catch-all term and can be hard to treat. Just “trying harder” is not a solution. I would recommend counseling with a first visit to a pediatric psychiatrist, not a “counselor” but who is better trained to diagnose. Counseling may be the recommended follow-up or treatment and/or with one of the many drugs available. Warning!!! many of the anti-depressants thin the blood (Cymbalta, Effexor etc. ) The doc should be firmly made aware of the coagulation disorder and you should read the side-effects warnings carefully. Wellbutryn, (Buproprion) does not affect coagulation to the same degree. I am a type III vonWillebrands with serious bleeding issues and I have taken Buproprion for a number of years. The drugs to avoid are SSRI and SNRI types as well as NSAIDS but you probably already knew that.

I am an active guy with a full life of fun and activity. I don’t juggle chainsaws and I don’t walk on my roof without a full safety harness (OSHA approved) but life is filled with daily joys and successes. I haven’t had a bleed for ten months. Have the Hematologist consult with any doc who is prescribing for your daughter.

My VWD is acquired and not hereditary so none of my children have VWD, but depression is rampant in all the cousins and some of their children.

Love
John the elder

You didn't say what type of vWD your daughter has -- how is it that she was diagnosed in the first place? There's nothing about vWD itself that makes one "feel" anything... unless something is happening in the body (bleeding) that is making one feel tired which usually is a symptom of anemia or perhaps something unrelated to vWD is going on. It isn't very helpful for a doctor tell you "she's fine" if she's too tired to play normally..! Has she had a blood test, is her hemoglobin OK? So a blood workup is the first thing, and if you have had one, get one more if some time has passed and if that's normal, then it's something else.

If she has Type IIA, look into whether it might be "acquired" i.e. the cause could be a defective aortic valve. Kind of a wierd thing, but they have been finding that in the case of adults who were having a lot of GI bleeding issues, that were then found to have had Type IIa vWD, that they also had defective aortic valves. They would surgically repair the valves and lo and behold, the vWD is gone as were the GI bleeds. There is something about the defective valves impacting the von Willebrand factor (qualitative) to create the flaws in the factor that impact clotting. I Just found an article that also referenced children.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1767161/

Don't be alarmed by the possibility, whatever it is, it is. In my case I have IIA, diagnosed as a child because mom, grandmother, uncles all had it, my sister did too, and I wish to heck it WAS aquired and valve replacement would fix it! I have been hospitalized about 7 times since May, have had about 9 GI bleeds. I am 55 and for the most part, until now, vWD has not been a huge problem, but it sure is now. I just so happened to have had a heart echocardiogram this summer, and according to my cardiologist, my aortic valve is just fine. My GI doctor, who has a colleague doing research on this particular "syndrome" (of GI bleeds getting resolved by aortic valve replacement) he says it doesn't take much of a defect in the valve to be problematic. any way I mentioned it not to scare you, but because it's something that is probably not that widely known about and at least mention this to your doctor if it could possibly be relevant (i.e. does your daughter have IIA?)

Suzee has a very valid point. An aortic valve malfunction physically breaks up the von Willebrand clotting factor as it passes through the valve thus creating the bleeding issues. I had an ultrasound on my heart to eliminate “aortic stenosis” as a cause for my sudden onset vWD.
Ultrasound is neat. Your daughter could actually see her heart valves opening and closing during the ultrasound. A diagnosis like that would cover the symptoms you mentioned, just like Suzee said! It’s also completely non-invasive and absolutely painless. It also takes only a few minutes and if you ask nicely, they might give you a cd of the test! It would make a great youtube video.

John the elder

The story to how my daughter was diagnosed is a crazy one. It all started because she was not sleeping at night. I kept telling her Dr. That something was wrong and they just kept telling me she would sleep when she got tired. After 14 DAYS OF HER SLEEPING ONLY 3 HRS A DAY. She fell on the floor and was unresponsive. I took her to the ER and they said she had a non epileptic seizure. We were sent to a neurologist we found after a few test that she had an aneurysm in her rt temporal lobe. While treating this and other systems her neurologist did some blood work on her. He found that her total body iron count was 17. He told me something was wrong and she needed to see a hematologist. After waiting over a month to get in to her old Dr on the first visit after answering alot of questions the Dr. Told me what she had. Then he said the hard part was getting the test results to show it. With her being so little it was hard to keep her calm while they took her blood. It took about 6/8 months before we got it to show up on her blood work. A week later she got her first infusion. Almost over night her nose bleeds stopped. Her iron went up, she started to sleep better an after a while was able to come off her sleeping meds. She stopped having seizures for the most part because she was able to sleep. She got color in her face. She became my wild child.

I know it sounds crazy that I didn't take her to the Dr. For nosebleeds but my ex had them all the time when he was little and his mom who is a nurse would tell me it was normal. I never realized that kids didn't wake up at night with nose bleeds. I did bring it up to her reg Dr a few times but I never told them how much blood there would be. I guess I was so focused on evrything else that was going on I just put nose bleeds down as the least of my worries. Boy was I wrong.

If I was in your situation and this was my child experiencing this, I would step into advocacy mode without hesitation, and get my child into the doctor or hospital. (Does the area you live in have a Children's Hospital)? I would request full workup/tests first. I would also simultaneously locate the very nearest blood center to me if the hospital does not have a hematologist available; a list is available here: http://www.hemophilia-information.com/hemophilia-treatment-centers.... and offers list by State. I would contact the one nearest to me, but if there was any hesitancy or communication problem, I would call the next nearest for consultation. You may be able to even take your child into the blood center to have blood work done.

As a mother advocating for this child, I would not back down even if I didn't have medical insurance. I would take my child to the nearest Children's Hospital and apply for assistance.

My son has VWD. It is my understanding that the Blood Center's, Hemophilia Department manages VWD patients also are trained in consulting with hospitals/doctors regarding patients with bleeding disorders.

If I had any kind of problem navigating these resources, I would then ask to consult with the social worker in the hospital for help.

I would be very cautious about assuming or self-diagnosis of any kind. A child behaving this lethargic- there is something going on. I would not be passive nor would I back down. I would ,as a mother, strongly advocate all resources available and not wait. My experience as a mother of seven ages 33 to 10; I will say that when children are in the condition you have described there is something serious going on. In situations I have had to manage, it's been a medical condition.

She has been to the ER with her. They did a workup and told me that I needed to follow up with her Dr.s I took her to the children's hospital. It was a waist of my time and for the last few days I have done nothing but call Drs and fight for my child. I was able to get her an appointment with her new hematologist mid march which is better then what they gave me before (mid April). I have also made an appointment with her reg Dr. To see if they are able to gwt an earlier appointment or into another Dr...maybe a GI. At this point I have done everything that I can do. I am always in advocacy mode.

I spent hrs at the ER fighting to the point of telling the ER Dr that he was useless. I also told him he was crazy when he told me my child juat had a virus. I asked him which one...what test got him to that conclusion and how many times has he ever known someone or a child to have a virus without a fever. I told him that a virus is a copout and he wasn't trying to help a child that came to him for his help. He told me to have a good day and sent us home. This is a very well know hospital that has a wonderful hematologist. After fighting with everyone all day today I was able to get in. The last few days have been nothing but me fighting with Drs and getting the care my child needs. Thank you for the information I will make sure I save the link.


Seahorsey said:

If I was in your situation and this was my child experiencing this, I would step into advocacy mode without hesitation, and get my child into the doctor or hospital. (Does the area you live in have a Children's Hospital)? I would request full workup/tests first. I would also simultaneously locate the very nearest blood center to me if the hospital does not have a hematologist available; a list is available here: http://www.hemophilia-information.com/hemophilia-treatment-centers.... and offers list by State. I would contact the one nearest to me, but if there was any hesitancy or communication problem, I would call the next nearest for consultation. You may be able to even take your child into the blood center to have blood work done.

As a mother advocating for this child, I would not back down even if I didn't have medical insurance. I would take my child to the nearest Children's Hospital and apply for assistance.

My son has VWD. It is my understanding that the Blood Center's, Hemophilia Department manages VWD patients also are trained in consulting with hospitals/doctors regarding patients with bleeding disorders.

If I had any kind of problem navigating these resources, I would then ask to consult with the social worker in the hospital for help.

I would be very cautious about assuming or self-diagnosis of any kind. A child behaving this lethargic- there is something going on. I would not be passive nor would I back down. I would ,as a mother, strongly advocate all resources available and not wait. My experience as a mother of seven ages 33 to 10; I will say that when children are in the condition you have described there is something serious going on. In situations I have had to manage, it's been a medical condition.

Wowie! Just wondering has your child improved or continuing with the lethargy?

Hi Lisa,

I haven't read all of your responses on this subject yet, but it sounds to me like she could be Anemic. I know when I was younger (mostly recall when I had started my first period) I was hospitalized and instantly anemic basically. What you are describing is how I felt to a T. Didn't feel good, light-headed, no energy, tired all the time, etc. I know she is too young to be getting a period just yet, but she could possibly be bleeding elseware and you not know it..it could be a slow bleed. Not trying to scare you, but I would suggest you have her seen by her Hematologist for blood tests just to rule that out. I seen you said she cannot get an appointment until April, but if you explain you are afraid she may have a bleed you are unaware of, I'd make them squeeze you into an appointment ASAP! There is no reason they would not be able to do that in this type of situation. Please keep us updated on this situation! & best of luck to you and your daughter <3

Lisa, re your comment "It took about 6/8 months before we got it to show up on her blood work."... what exactly is the "it" you are referring to? (von Willebrand disease?) If so, what type of vWD does she have? And where do you live (U.S., UK, or somewhere else?)