Symptom question / New chiari mom

[JessicaHensarling]

My son was diagnosed with Chiari I (11mm) a couple weeks ago, he is 4 years old. He is having a bunch of issues right now... headache since November, his voice turned raspy in like October, shoulder and neck pain, knee and leg pain, last week he said his toes hurt and then over the weekend they went numb, twitchy hands, sometimes it takes him a bit to respond even though I am right in front of him - it's like there is a delay, intense mood swings, very irritable and almost like he has no reasoning anymore, it is also next to impossible to get him to make a decision on something when asked and he gets very frustrated because he can't seem make a choice. Oh and he also has left side weakness in his facial muscles that his pedi noticed in some of his expressions and is unable to hold air in his left cheek. Aside from all that I've noticed for the past couple of weeks that he has been remember things that never happened. He has primarily been talking about things he did at my dads house when he stayed there but he has never stayed there or been to his house. In fact, he has only seen him three times in his life. He recalls these false memories several times a day and it is always different stories and he tells it like it is a vivid memory of his. I've tried telling him that they never happened and he is just being silly but he gets very upset and insists that they did. Is this part of having chiari, something else or normal for a 4 year old? Has anybody ever experienced anything similar? All of his issues have been very progressive lately and this is all happening so fast that it is kinda' scaring me. Every few days there is something new with him or something else on him that hurts. We are inbetween neurosurgeons right now but will hopefully be getting in with Dr. George in Austin within the next week or two. Hoping you guys can shine some light on this memory thing, I don't remember any of my other children doing this and it just seems odd. And I would love to hear whatever other information you would like to share with me that may be helpful based on my sons issues that he is having. I don't know if it is the pain he is in or what but this has changed my sweet little boy, I no longer see joy when I look in his eyes. He just looks miserable. :( 

[selmaS]

  Hi a syrinx can not be ruled out if you did not also have a MRI of the thoracic and lumbar spine as they can form in those areas as well....Drs not as well informed on Chiari do not look beyond the cervical spine MRI for them....so make sure they looked in all areas of the spine.

As for tethered cord....it does not always show on a MRI and there are other indicators for it...such as an elongated brain stem...a scaral dimple or hairy patch....I know there are others but can not recall right now....


Fallen arches can deff be a EDS indicator as EDS is a connective tissue disorder that the collagen is lax....and the weight issue can also be EDS as it can cause mal absorption of vitamins and minerals....EDS can also cause IBS and ref;ux which can also affect weight be it a loss or gain....as many of us deal differently with symptoms.
The other possibility for weight gain...is a thyroid issue ...many of us are DX'd with Hashimoto's a auto immune condition and we can switch btwn being hyper or hypo....

Make sure when testing the thyroid they do a full blood panel....free T3, freeT4 and TPO antibodies as well as TSH....and a ultra sound of the thyroid is very helpful.

I use to stand on the outside of my ankles....mine would roll as well...but outward.....as I said we are all different....but I did have a weight gain and I am happy to say I am finally losing some of it now.

[JessicaHensarling]

My son was admitted for a couple days last week. I just posted a new post with a few more questions on that but to answer your question about his csf flow and syrinx... the MRI last week showed no syrinx or tethered cord but did show he has "minimal CSF flow" and there is no flow at all where herniation is. I mentioned the EDS when we were inpatient and the doctor automatically shut it down like it wasn't even a possibility for him. I don't know what gave her that impression but she acted as if it wasn't even a possibility. I am curious though because he is always telling me his knees and back hurt. Is it only flat feet that are seen with EDS or are fallen arches too? I really want to get him checked for EDS just to be sure, I mean it wouldn't hurt to officially rule it out. Hopefully when we see the chiari specialist on the 30th, EDS testing is something he will order. I will say that he had a rapid unexplained weight gain last fall which happened at the same time he started becoming symptomatic from his chairi and has been consistently gaining ever since (up 15 lbs now) so his knee pain could possibility be related to that and his fallen arches as well. I noticed that his ankles seem to roll inward now too.

[selmaS]

  EDS is not only elastic skin, I don't have that, and I would not say I was flexible or double jointed even as a child...BUT I am hyper mobile...the problem is our muscles get tighter as they do the job our tissue and ligaments are not able to as they are too lax....making us feel tight...but a PT can manually manipulate us further then we should be able to go on ROM charts.

For me I was slow to heal and bruised easily......I also have the blue sclara...this can sometimes be a gray color but it is the thinning of the sclara (white part) of the eyes....it looks like a halo of sorts.

Muscle pains....hernias...all over joint pains....joints that sublex or pop completely out of joint. Issues with food sensitivities, or meds...malabsorption of vitamins and minerals naturally or via supplements. Flat feet is a symptom of EDS.

Bcuz of EDS headaches are also a symptom...and CCI craniocervical instability...can worsen after Chiari PFD surgery...so it is very important to know b4.

The brain fog is common with Chiari and it can be difficult to deal with trying to recall info someone is requesting of us...it can be embarrassing, frustrating and scary...short term memory issues have always been my worst...BUT mine is better and I have had surgery.

[selmaS]

  Hi JessicaHensarling and welcome to the Chiari forum.

I am going yo work from the bottom up....last question first....lol...

Smells....many with Chiari also have a related condition which some Drs feel is the reason we have Chiari....Ehlers-Danlos Syndrome....there are several types the more common one is hyper mobility type...along with this condition we have issues with smells, allergies to meds, foods,issues with anesthesia, absorbing vitamins and minerals...naturally or thru supplements.

Many of us do have hyper sensitivities to not only smells but light and sounds. I had an issue with my daughters deodorant....and other peoples choice of after shave or perfumes....so I do understand this one.

The false memories....hmmm...b4 discounting them...see if there are any truths to them...they may not be his memories....but look for something you can acknowledge and allow him to open up more as to where this info comes from??? But to tell him he is not right or telling the truth may cause him to stop sharing.

Chiari symptoms cycle and can appear to come and go and be in constant change.

Having the right Dr is KEY !! Having ALL the right tests are KEY as well.....

You mentioned his herniation size, but did not mention if he has a CSF obstruction or any other related condition...Syringomyelia, retroflexed odontoid, POTS, ICP, CCI, Ehlers-Danlos,tethered cord,sleep apnea.....any issues with low levels of vitamins and minerals?

I want to address the raspy voice which is accepted as a Chiari symptom....but I found that I have EDS and with EDS comes yet another issue...we tend to over produce histamines...which can cause PND....this causes a raspy voice and can also cause reflux...so make sure testing for ALL related conditions are looked into and ruled out as well as non related conditions with similar symptoms as some of these other conditions can affect how he feels and heals should he be deemed a surgical candidate.

[JessicaHensarling]

The first neurosurgeon we saw and will never see again, ordered a MRI of his spine but the hospitals around here can't get to it until April-May. He is currently scheduled for April 14th which seems like forever away. The new neurosurgeon in Austin called this mornin and they are working him in on the 30th so maybe he can put a stat order in for one there. It seems crazy to wait that long, especially since he seems to be having nerve pain in his feet and toes. His pedi thinks he has POTS and was referred to a cardiologist which we will be seeing next week. I noticed his legs turning purple and pooling blood quickly so that is what started all that. I put my other sons pulse of on him this weekend has him lay down for a bit and then stand up and his HR jumped 24 BPM within seconds but he wouldn't keep it on so I couldn't do the whole 5 mins, was only able to keep it on for less than a minute. Is 30 BPM the gold standard for diagnosis? Does EDS have variable symptoms? He doesn't really have many of the symptoms. His joints seem to be normal aside from his knees hurting him but his arches have also recently fallen so that could also be the cause of joint pain. His skin seems to be of normal elatcity too and not noticeably thin. Is there any other red flag signs of EDS? I will mention it to his neurosurgeon and see if he wants to test for it.

As for the memories, it is just random thoughts of his that he comes to me and says hey you remember such and such... I just go along with it because he gets really defensive and upset when I tell him he's just being silly and that never happened. He has talked about things he's done with other people that never happened but it is primarily my dad whom he has no relationship with so it just strikes me as odd. His short term memory is not all that great these days either. I can ask him a question about what he did at preschool during the day (he goes part-time) and he has a difficult time recalling. He doesn't even bother trying to recall most of the time and just tells me it's a secret. lol

[JessicaHensarling]

Oh and he is also hypersensitive to smell lately. Some days seem to be worse than others. Is this normal too? As a 4 year old with no sensor he is not shy to tell people they stink or whatever they have stinks to him. It is rather embarrassing. The other day we waited for a good 10 minutes in front of the elevators because people kept walking by that stunk to him and he didn't want to get in the elevator with the smell.