Chiari Online Support Group

5 year old with worried mom


#1

My daughter is 5 years old. Her symptoms are as follows:
Constant headache which flare up into horrible “migraine” . Visually can see in eye with eye appearing smaller than other. For over 2 months now. But can track headache complaints back over 2 years.
During flare up light and sound sensitivity.
Dizzy spells
Vision blackouts.
Double/blurry vision
Learning problems/information retention problems:
Took 2.5 years learn count to 10
2 years to write and spell name
After 2 week break from school has to be taught again to write numbers 1-10.
Memory problems:
Eats breakfast and 30 mins later ask what’s for breakfast because she forgot she ate.
Forgetting gma is gma and calling her auntie. But later remembers who she is.
Forgetting that she just got a bedtime hug and kiss 5 minutes before and being really upset that I didn’t give her one.
Receives speech therapy in school.
Raises hand in class to add to discussion but then proceed to talk about something totally off topic.
MRI says:
There is a slight protrusion of the right cerebellar tonsil below the foramen magnum, approximately 3 mm, consistent with inferior cerebellar tonsillar ectopia.

Neurologist says this has nothing to do with her symptoms. Is treating her for allergies saying this is causing headaches.

I do not agree with her. Anyone else experience these symptoms at 3 mm? As she grows will it protrude more and become chiaria malformation? My daughter suffers. It is Sunday and she is so scared to go to school tomorrow because her head may hurt to bad… I am scared for my baby. Any and all ingredients really appreciated.
Jeara


#2

I am 35 years old and a female. I started to learn about my back problems in Middle School being told I had scoliosis. It was until I was 23 and I had a bad sneeze which threw my back out 4 weeks that I realized I had some problems. Now I am at 14 mm herniated and am about to have surgery in a month. Looking back as I grew up I can remember having headaches and crying as a child was no relief other than my mother giving me Tylenol and me taking a nap. In high school my doctor said they were just migraines and I was giving medication that seemed to take the edge off. At the age of 23 I started to become more aware of my headaches in the back of my head. They were always in the back of my head and full pressure and pain. Now that I’m about to have surgery I realize my headaches growing up have been from Chari. My advice is to just keep getting another opinion until you get the one that makes sense to you. I go through pain constantly every day and I couldn’t imagine what your daughter goes through. I would never wish that on anyone especially a child. Good luck to you and your family.


#3

I had the same issue. My dtr is 7 almost 8. We caught it when she was 6.
She cannot regain new words despite an extremely high IQ.
Chronic headaches, body paid, pins and needles.
Only my daughters adopted so what I hear is,
“Well with kids with her background…”
If you only knew how many professionals I’ve fired at this point and won’t allow my child.
I do not mince words.
Your dtr may need additional support via a speech therapist, tutor, etc. the good news is that there are so many at home programs to help your little girl with her learning problems.
Keep skull knocking people until you get what you need for her. I’m with you.


#4

My daughter is 12 yrs old and has diagnosed with chiari 1 malformation, the cyst in her spinal column (i can not spell the medical name for this) and possible pseudotumor ( Dr said they can’t do a spinal tap to confirm pseudotumor because of the chiari). My daughter has been taken out of school by the neurologist and she does homebound schooling 2 days a week. Today I had to cancel the teacher because she was in too much pain, extremely dizzy and weak, and is having blurry vision more often. Her neurosurgeon said she needs the surgery but will not do it until she loses a total of 20 lbs. Has anyone else had a problem with severe weight gain? Lakan has been gaining weight for the past 3 yrs and the Dr’s just blamed me for allowing her to over eat, but she doesn’t over eat at all and I cook healthy. I have been told it could be from am over production of hormones from so much pressure on her brain…any information of this would be extremely helpful.


#5

Hey Stephanie14,
Your daughters situation sounds very similar to my own. I have a growth in the centre of my brain, restricting the natural flow of CSF. Eventually the growth blocked the natural flow of CSF completely, causing hydrocephalus (water on the brain). Initially symptoms were ignored and given every other reason/excuse for the symptoms other than the genuine cause, and then by the time a genuine diagnosis was investigated and established (15-20 yrs later) it was too late to manage and major neurosurgery was required.
Your experience with the dr’s, I’m sorry to say, is not uncommon. Rather than focusing on options they seem to focus on blame. “It’s your fault… …not ours” but it sounds like you are taking appropriate steps to bring her weight down and you should be congratulated for that. Have you consulted a dietitian? It maybe an idea to do so. They maybe able to assist you in giving your daughter foods that fill her up, to make her feel full, but contain very little energy. In doing this her body will burn its reserves of energy (fat), bringing her weight down quicker, but stop her from feeling hungry. The body needs certain nutrients not contained within fat and this is why I’d recommend seeing a dietitian/nutritionist to be sure she is getting what is required, but nothing more.

As for the ‘over production of hormones’ 100% yes. As a very young male I was told “Ohh it’s just early puberty…” It was not “Just” early puberty. My whole endocrine system was all out of whack. I had hormones rushing through my system that no preteen should ever have and this brought on all sorts of changes. It was easier just to label me as ‘a shit of a kid’ and I was a complete an absolute ‘shit’, but there was a physical reason for it and not just me being ‘a shit of a kid’. Even a consultation with an endocrinologist could help, they maybe able to prescribe medications to manage those hormones, but by the sounds of it those hormones are already acting on the body so restricting them now may not be an option.

But by the sounds of things, as a parent, you are doing the right things and the best you can despite the dr’s passing blame and judgement your way. As I say this is not unusual. The medicos have a HUGE fear that blame will be attributed to them and tarnish their name, so they often try to get in first and point the finger at everybody else before anybody looks at their practises/advise. It’s a self protection mechanism for them, but about as useful as a pocket full of sand.

Merl from the Moderator Support Team


#6

I have consulted with a dietitian and she taught me how to count carbs and gave me several recipies to use. She just seems to b getting worse everyday with dizziness, weakness, and headaches.


#7

Hey Stephanie14,

Then, personally, I would say you are doing what you can, despite what the medicos maybe insinuating. There is no nice way to put the management of symptoms, it can be a real B#$@!%D and those of us who have been there know it better than ANY dr ever will. Some may say that my negativity towards some of the medicos is unwarranted, but after experiencing years of a similar attitude to what you have had, my judgement is not unfounded. So please believe me when I say it’s “not uncommon”, especially for those of us with rare conditions. I have often stated “…dr’s are scientists and in science A+B=C. The textbook says A+B=C. But for many of us we are not ‘A’, our symptoms are not ‘B’, and the end result is not ‘C’, we don’t equate, we are not in their textbook. So rather than investigate they put it back on us, back on the patient. Then when things deteriorate they again put it back on us again, as if any of us choose to be in this situation”.
So please be assured, you are not the first and you won’t be the last to be in this situation, but you as a parent are doing the right thing by your daughter and for that you should be congratulated.

Merl from the Moderator Support Team


#8

Thank you. I really have felt alone in all of this and i am so sorry that you have had to deal with all of the Dr’s blame game just as my daughter and I have. Sometimes I feel like i could just stand and scream to release the stress but I know that would be counter productive and my children and neighbors with think I have completely lost it. Lol. I do appreciate your kind words. The dr called yesterday and they changing her medicine again and writing her an order for a wheelchair for her to use when the dizziness is to bad.


#9

Hey Stephanie, that feeling of being alone is also common. I did something really silly and confronted the dr’s regarding their judgements and this only served to isolate me further (in fact it is listed in my file as ‘Non compliant patient’) HINT: Don’t do that.
Some people hold the medical fraternity up as being Gods, all knowledgeable. When I questioned that knowledge the reaction was less than positive. So be aware. BE VERY AWARE. That note on my file follows me everywhere. I have found often it’s better to go “Yes Sir, No sir. Three bags full sir…” to the dr’s. Then investigate things for myself.

Just some advice
Merl from the Moderator Support Team


#10

Lol! Thank you for the advice. I was definitely getting close to going psycho mom at the next appt…better hold off on that for awhile. Lol


#11

Hey Stephanie14,
You are a concerned parent of an unwell child, I can’t think why you’d be getting close to going ‘psycho mum’ (JOKE). In my former employment role part of my role was to be an advocate for my clients (who had disabilities). I was NOT their parent. BUT, when I could see that they were being treated unfairly or spoken down to, part of my role was to clarify what was being said and why. Yes, some of my clients did not understand all that was being said and required the information to be broken down into simpler terms, but then I know of ‘fully functioning’ people who wouldn’t have had a clue either. To then have a dr belittle or intimidate the client, no way. To have them question a client’s symptoms with disbelief or yell at them “DO. YOU. UNDERSTAND.???” (Which I have seen occur) NO WAY!!!
I, personally, would not allow a dr treat me in such a way and I will not permit a dr to speak to a client in such a manner. As if they/we are not stressed out enough through this whole process. So, ‘psycho mum’ ? I’d say that’s pretty damn normal considering the circumstances. Some medicos have no reality of the back story regarding our health histories, some of which are rather extensive. So rather than ask, they pass judgement and that is wrong. Sometimes these (so called) professionals do need to be told that their behaviour is questionable. Often when there is an emotional connection ie patient/parent/loved one, a judgement of ‘emotional hysterics’ is referenced by the medicos. By me having an familial disconnection, via my job, when advocating for a client, there is less opportunity for that parallel being drawn. But you are the parent, you can’t disconnect.

If you believe that you are not being listened to or are being discredited when voicing your concerns maybe you could investigate obtaining a medical advocate for such appointments. Someone to stand beside you and reinforce your stand point.

Merl from the Moderator Support Team


#12

Thank you. I have never thought of having a patient advocate come with me to her appts. Today the back of her head is hurting pretty bad and she is having numbness on the side of her left foot.


#13

If you can find an advocate with some medical knowledge it is always helpful. I had one medico tell me my clients symptoms were psychosomatic, it was fairly clear what the dr was saying, but by the same accord I had an appointment where two dr’s were talking to themselves about my own situation and in one’s opinion he stated my symptoms ‘were idiopathic in nature’, thinking I did not know the meaning of ‘idiopathic.’ I had just been released from hospital from having neurosurgery and I was in agony. Their view was “They operated, they fixed” but they hadn’t fixed at all. So for them to say it was idiopathic in nature, it lit my fuse and I was ready to explode. Anger does not come close to explaining my emotional state. I was at the point of going nuclear and I had to leave immediately because I knew the result was going to be catastrophic if I had stayed. I needed an advocate.
Turns out that not 3 months post surgery I was back having yet further neurosurgery. At the pre assessment for surgery (this time with my advocate) the same self opinionated dr and the surgeon were present. I, rather sarcastically asked the self opinionated dr, in front of the surgeon, if the upcoming surgery was also ‘idiopathic in nature’. He promptly scurried out the door, with the surgeon left standing there wondering what on earth had just happened. My advocate was well aware.

Merl from the Moderator Support Team


#14

I am so sorry that you have been through such a traumatic experience. I hope my daughter doesn’t have to have more than 1 surgery. 1 is scary enough but 2 would drive me to insanity. I have heard about good results after surgery and I have heard horror stories about surgery not going well at all and repeat surgeries and therapies needed to recover physical and mental function…my nerves are shot with all the uncertainty.


#15

Hey Stephanie,
Any surgery is stressful, especially neurosurgery and we all hope/pray/beg that it’s a once off sort of thing. No two of my surgeries have been the same either in the type of surgery nor the recovery. I have found trying to draw a parallel between one person’s experience and another near on to impossible. There are stories of miracle recoveries and stories of horror recoveries. In all honesty it is not something anybody can give guarantees on, all we can do is hope for the best outcome. That lack of control of the situation is something we all have to learn(somehow) to accept. Some people here often talk of ‘acceptance’, I’ve been managing this for years and still haven’t learnt that acceptance bit and your line of “…my nerves are shot with all the uncertainty.” is pretty normal. As humans we like to be in control but in these situations we have no control, none what so ever. And that is scary. All we can do is trust the dr’s.

Merl from the Moderator Support Team


#16

She just seem to be getting worst. Tonight she was crying from hurting and feeling weak all over and then all of the sudden she was asleep…in like 5 mins she was snoring…but moans while sleeping . Her breathing is fast 32 breaths per minute, heart rate jumps from 52bpm up to 78bpm when she moves around (using an O2 sat monitor with pulse rate on it) but when I take her pulse in her wrist with my fingers…i can feel that her heart beat is irregular…is that normal for someone with chiari and the cyst in her spine? I hate seeing her hurting like this. But everytime i take her to the ER they just send us home and say she has to lose the rest of the weight before we can do anything…:cry:


#17

Hey Stephanie,
Apologise for missing this. I’m sorry to say these are not questions I can answer honestly, I’m not a dr. I can tell you I have had numerous ER visits, 4 transported by ambulance and only once have they kept me in. If I went to the ER for a headache I’d be setting up residence in the ER dept. I have symptoms daily so for me to be going to the ER there really has to be something wrong and yet 90% of the time I’m sent home. My symptoms fluctuate massively. Why? I have no idea, but then nor do the dr’s. If they do a scan and can see a change, a difference, they may act. But otherwise no action is taken. 'Keep your fluids up" and I’m discharged.
I know that the medicos need some emotional disconnection but as a parent you don’t have that ability. That disconnection can also be a reality disconnection and at times that can be a case of read the medical notes and feed us the common line from the file. In your case ‘weight’ in my situation it was ‘Nothing wrong, it’s all in his head’. The problem was… …It was all in my head. I had to have a major incident before they FULLY investigated.

Merl from the Moderator Support Team


#18

I am sorry you have went through such a hard time also. I know i must sound like a complaining whiney baby…i just get in moods where I don’t know what to do and I just vent all these negative feelings. Thank you for taking the time to message me back and offer words of encouragement in this difficult time. If there is anything I can do to help you , please let me know.


#19

Hey Stephanie,
No, you do not sound like ‘a complaining whiney baby…’, you sound like a concerned parent. We ALL need to vent, if we don’t the stresses build up and we tend to explode at the most inappropriate times and often in inappropriate ways (Well, I do anyway), so you vent here as much as you like. We are a self support network and I cannot begin to tell you how much others here have supported me in my times of need. Just the process of sharing my experiences letting others know that their experiences are ‘normal’ has given some of my ‘negative experiences’ a positive. If we can learn from those experiences then they weren’t negative at all and they maybe of some use to somebody.
This whole journey can be VERY confronting and isolating, knowing that there are others who have travelled this route can be such a ‘phew, I’m not the only one…’ sort of a moment and that alone can be a bit of a release valve in itself.

Merl from the Moderator Support Team


#20

Hi Stephanie, I just wanted to throw my 2 cents in here. You are not alone with what you are experiencing with the doctors and how they maje you want to tear your hair out in frustration. My last appointment with my GP, after giving her a detailed update again of how my symptoms are steadily getting worse, told me I needed to be on a ketogenic diet and that would “fix me right up.” I actually asked her if she was joking. They just dont get it. All we can do is keep looking for someone that will listen. My prayers are with you and your daughter.