Waiting for Diagnosis for 11 year old daughter

[JennyLee]

Hello, I've stumbled across this group looking for answers and/or support. Any suggestions or answers towards helping my daughter (11 years old) would be GREATLY appreciated!

Quick background.
DOB. 2009
-2012 to ongoing leg and ankle pains (mostly right side)

-2013 (7 years old) left 2x 10 min. episodes of left side facial droop, numbness & drooling, slurred speech

-Nov. 2017 - focal aware seizure (Prior to seizure nosebleed, headache, stomach ache)

-Nov. 2017 - CT scan normal, EEG normal, MRI shows 0.4cm possible cerebral cavernous malformation on the left side of pons peripherally differential diagnosis include neoplasm or demyelinating lesion.
Neurologist is certain symptoms are unrelated to possible CCM as the seizure & past facial droop occurred on the same side as the lesion - (As a parent I am so confused)

-2017 to current - leg pains, tingling, headaches, sometimes severe with vomiting, fatigue, severe difficulty falling asleep, poor quality of sleep, sometimes emotional for no apparent reason, irrational, weird bouts of laughter, pale, stomach aches.

-2018 - 2nd MRI same findings still inconclusive.

Mar. 2018- Bloodwork showed low iron and low vit D - prescribed iron suppliments and vit D - currently she s taking these. No change in symptoms just more of them.

My daughter has a 3rd MRI booked for June 2018. Hoping for answers. I'm not sure if there are things I can do in the meantime. Dr,s' pediatrician & neurologist have said proceed as normal seem unconcerned and I am feeling like a paranoid parent. I just feel like something isn't right. Dr.s' suggested her symptoms are likely puberty (she hasn't started menstration) and low iron but I feel like something else is going on...

Any help, ideas, support appreciated. Thank you in advance.
JL

[JennyLee]

Regarding everything I've mentioned above been giving her motrin (ibuprofin) for the severe headaches and she's been taking iron pills. After everything I've been reading on this forum I am thinking I should switch her to Tylenol? Are the iron pills considered safe for CM?

[Michelle2000]

JennyLee,

Welcome! I'm glad you found us but sorry you needed to. I can understand your confusion and how helpless you feel. Something is obviously going on! In my experience, if doctors can't fix it they tend to minimize it. They are also likely to say the CM lesion isn't causing symptoms if they aren't textbook to other types of lesions. Brainstem lesions don't generally cause seizures, but they do cause symptoms on the same side of the body as the lesion. Lesions higher in the brain are more likely to cause seizures, and they cause symptoms on the opposite side of the body. (I had trouble understanding that initially, too).

It is best to avoid ibuprofen and other medications with blood thinning properties. They won't cause a bleed, but if one is underway, thinner blood will leak more and cause more damage. My son has gotten along reasonably well on Tylenol. OK, maybe not, but he likes to tell me so so I stop worrying. I'm sure you've tried cool, damp cloths to the forehead and resting in a quiet, dark place, too.

My son has had trouble with sleep. Melatonin was a lifesaver for awhile. His bleed (also left side of the pons) disrupted his respiratory center, so he has sleep apnea. He used a bi-pap machine for 5-6 years, but he no longer needs it. This could be making her headaches worse. The vomiting is also a brainstem sign.

I understand why your doctor mentioned puberty. I've got 4 kids, with the youngest 13, and puberty is ugly no matter who you are. Puberty + brain injury is hideous! My daughter (no CM) was emotional well before menarche. My son with the CM had a lot of emotional lability following his bleed and surgery (at age 9). Puberty turned some of it up several notches. The good news is that the puberty portion passes.

Perhaps your daughter and family would benefit from seeing a therapist experienced with brain injury. Our family certainly did. Regardless of what is causing some of her symptoms it is good to get help in dealing with them in a productive way.

Also, you may want to consider traveling to an Angioma Alliance Center of Excellence for a second opinion from doctors who see many CM patients. http://www.angiomaalliance.org/pages.aspx?content=482

Best wishes,

Michelle

[JennyLee]

I can't thank you enough Michelle.

I've re-read your reply about 5 times now. You've given me more information in your one post than I've learned from several Dr.s in several months.

I have tried cold cloths and darkness for the headaches, but her moaning & crying for Motrin gets me every time. I will get some Tylenol though as we haven't even tried it.

We tried Melatonin small dose spray, it did help her fall asleep but then she'd be too groggy for the day after and wasn't managing school. We tried Gaba too with no luck. Magnesium tea seems to help a bit but not always.

I've never considered a family therapist before you mentioned it, but I think I'll look into to this. We are in rural area in Ontario so I'm not sure what how many therapists with brain injury experience would be available near us but I will look into this. Uncertainty mixed with emotional outbursts and lack of sleep has meant we are all at each other. Our once smooth sailing family ship has sprung a big leak. It really hurts me to see out daughters go from almost always getting along to almost always fighting.

Again Michelle I can't thank you enough for your reply. After reading your reply and the other posts. I am feeling less alone in all of this.

Sincerely,
JennyLee Learn

[Michelle2000]

JennyLee,

It is such a relief to know you are not alone. I'm glad I could help. I like your ship analogy. As bad as this is for the child affected, the way it has affected our family is worse, I think. My oldest son lost his best friend, and was really too young (at 11) to understand what was happening. It really hurts me that they still don't get along when they were once so close. I can understand why it happened, but it is so sad that the brothers lost that bond. My son with the CM also doesn't understand his behaviors that drive his siblings away. His younger brother picked up all sorts of bad behavior from watching him through the "bad years." We are still working on getting him straightened out! My daughter, the oldest, grew up too fast, taking on a lot of responsibility. Our therapist ensured me that the kids would grow up to be more compassionate. That is true for her. I'm not sure about the others.

I understand the challenges of finding care in a rural area, especially for mental health. I was fortunate to have a friend who used to work in mental health and knew who to recommend. Still, my son lost a lot of school time traveling to appointments. Still worth it! If there is a brain injury organization in your area or province they may be able to help with the names of therapists. They might also have peer mentors. I participated in that for awhile (via phone calls), and though my mentor's child had a different brain injury, there was enough in common that it was helpful. Sometimes you just need to talk to someone who has lived it so you don't feel crazy!

Best wishes!

Michelle

[JennyLee]

Michelle,

I appreciate your responses very much, you have helped me feel WAY less crazy.
I have been doing some digging and have come up with some possible options near us for keeping our mental health on the right track. Thanks to you for giving me this nudge.

I used to read to my daughter at night to help her settle. I have felt way too scattered and busy to take the time to do this, but since talking to you I have taken a deep breath and realized this calming routine helps both of us so she has chosen a book and we've begun this routine again. It seems to be what helps her settle the most for some reason even if she isn't getting a deep sleep at night at least she seems calmer and rests longer.

As for your kids growing up too fast, please don't worry they will get through the tough spots and be better for it. My little sister has had severe health problems all of her life. My two brothers and I (all older than her) took on responsibilities at very young ages to help out on our family farm. While we weren't always big fans of chores and responsibility, & all had some rough times, now as adults all with kids of our own we credit our successes today to that time. On a side note I might share this with our parents who still care for my sister as I just realized they may not know how we feel.

Have a great day Michelle.
Thanks again,
JL

[Michelle2000]

JennyLee,

Thank you for your kind words and thoughts about growing up with a medically challenging sibling. I hope your sister is doing well.

Funny you mentioned reading to your daughter. When my son first had his bleed (the day he woke up with a splitting headache and vomiting) he made me sit at the end of his bunk bed and read to him. He'd let me go switch out a load of laundry, but I couldn't dare to fold it! When he was admitted to the hospital that night I had to go to the hospital library to find that book (we were too far from home to send someone with it) and read to him. I read through the Little House series while he was in the hospital/rehab. Then it was Harry Potter, Gregor the Overlander, Percy Jackson, you get the picture. It was the only thing that calmed him.

The school piece can be tricky. Our doctors told us lack of sleep would hinder his recovery, so one of them prescribed the melatonin. He also told us to use benadryl if necessary. I don't know what Canada has for education plans for students with medical issues, but my son's plan allowed him to be late to school and take rest breaks during the day. He no longer needs those accommodations, but they were critical at the time. Some nights we just decided he'd sleep in. Brain injuries take a lot of energy. The brain rewires itself, especially in children, but it takes a toll. There is less extra capacity, so fatigue sets in more quickly, yet sleep can be problematic. My son still needs so much time each day to rest by himself without having to attend to any social cues.

Best wishes,

Michelle