Family in distress

by shana
(Lexington,oh,united states)

Hi Mary,
It seems like my life is spiraling out of control and my is flipped upside down. I hope i make it all clear for you the symptoms and try to remember everything the way it happened.
I have a 4 yr old, 3yrs old and a 1yr old. All this started back in Jan with my 4 yr old Jackson, he started complaining of headaches, back hurting, neck hurting, legs hurting,and a very bad belly ache to me and my family so bad he needed someone to rub his head to fall asleep. I become very concerned and took to the doc and they ordered a MRI on march 4th and everything come back ok so I got schduled to see a nuerologist. Bout this time my daughter who Just turned ONE could not sleep anymore and was pulling her hair and throwing her head around.
I started noticing what I thought was my Jacksons eyes going crossed, so went to a opthamologist and was comformed by two eye doc the he did not have crossed eyes he has ptosis. started looking at pictures of my other children and they all had the ptosis aswell. My 3 yr old Maxs pupil where hugh in the pictures and Jacksons where very large. Its prolly the end of march now or early april and they all had had MRSA infections on there body, like litte boils and scolded skin looking things. the docs said prolly didnt get into there blood stream.
By this time the Docs and I where trying to figure out what was going on with my family,by and extensive blood tests. Jackson got so sick he was turning pale and so the Doc checked disease of the liver and come to find out he had had Mono which weakend his immune system prolly to get the MRSA im guessing. When he was on the medicine for the MRSA he developed petechia under his arms and around his neck which the Doc said it was from itching. Well they went alway and a Month later they came back worse covering the same areas but worse and to this day today they are still there under his arms. We have taken him to infectious disease and had cbc with diff done, everything came back ok again. My middle some has them as well and my daughter brakes out with them a couple times.
so with all that said I thought they where getting better now off the antibiotics for a month or so But the one thing that never went away was the headaches right on top the head where Jackson pionts to when his is hurting bad and my daughter pull her hair in the exact same spot, they have them every single day all day and even in the night, i no because im up alot at night with them. And then the pain started back up in the his Buttchecks and legs and back and neck. I have to two eye docs now and neither one of them gave me a answer to why his has ptosis and the second doc didnt see the ptosis and the said he was nearsided, which just 3 months before that he had perfect vision. He was nightsweating every night for almost a month and then he started to get a sore throat so took him back to the doc he had a bilateral ear infection and sore throat (no strep they said because they ran a strep test. So the antibiotics seem to clear that up and then I started notice in all the them there eyes where jerking back and forth when we would be in the car and or riding in the shopping cart. But now I see it all the time when they look around or at the T.V.. Im hoping to figure what is wrong with the Jackson so maybe we can start with the rest.You see they where healthy children last year not saying didnt get sick every once in a while but now if I take them anywhere they have a cold for a week and half and my Max has has tonsilits for 3 month now. Also about 2weeks ago we where all put on cocostorids because of out congestion and it might be helping a little but we have to be on them for at least 6 weeks. And also I took my son to a family get together and they new he had been sick they asked how he was doing and i didnt need to explain after 10 minutes of throwing a ball with his dad he came back inside where all of us where sitting and was pooring with sweat and shaking so bad he couldnt hold his water,my family was terrified and said take him to the doc,but you have no idea how many times I have taken him to the doc and because all the test a ok they don't help. Well Jackson eye are drooping more than they ever have and when he plays they open right up and when he look up he is able to open his eyes up and in the morning they look good as well but any other time they just droop and the left is worse than the right but here recently I have noticed the right start to droop too. Max and Ariahs eyes seem to have opened back up but im there mother i can tell a little there not the same and some days are worse than others.
I went to the neurologist for the first time one month an half ago, he told me he want me to see another eye doc about the ptosis toget a diagnosis and I see him on thurs of this week other than that the neurlolgist did nothing for me other than schdule a 2month follow up and that hopfully will be coming us soon, I think he cared more about the vacation he was going on because he mentioned it like 4 or 5 times but atleast he seem a problem in my children which most other Docs dont or ignore. The things going on to this day are dry itchy skin so bad somtimes it usedto peel,his lips are still so chapped they dont ever get moist, sweat and headaches at the top of the head and also nystagmus which the docs said was normal but I could understand if they where born with them, but they wherent. what am I doing wrong? why cant anybody help us? hopfully you can, ive tried these online things befor usally they dont work or cost money. I cant take it and I am doing this alone, My husband works all the time and he is also a LPN and agrees until the doc dianoise with something then he dont have a worry.I know there is more and this is alot to take in but its hard to me to do this day to day.
Atleast they still play through all this thats the hope I have, and god I will step insomtime as well


Hi Shana,

I understand your frustration but I am not sure how I can help. There is a lot there and it may be complex.

I am glad that the MRI was normal. Be assured that congenital nystagmus is common and quite benign. Ptosis can happen to anyone when they are over fatigued or have a headache, fever or infection.

The headaches are most probably related to infection. As such they should have gone away when the infections cleared up. If not, the neurologist needs to address this.

What concerns me is the episode of sweating, shaking and losing urine. This sounds like a febrile seizure. Once again make sure the neurologist is aware of it. He or she may want to order an EEG which looks at the brain waves and rules out seizure disorder.

I wish you the best of luck. I am glad your husband is an LPN..hang on!

Mary Kay Betz MS RPA-C

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