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Ataxia Support Network

Milana.. 9 years old


#1

Hello, I’m Alexey. I have daughter 9 years old. We live in Cyprus. We’ve done MRI 1 week ago and it shows certain atrophy of cerebellar and atrophy of ponts + ''hot cross bun" sign on MRI. Doctor suspect SCA1,2,3,5,6 or whatever… or MSA-C (but she is too young for it).
My wife had hard delivery. Milana did not breath when she born for 2-3 minutes and was like a violet color… than doctors did something and she started to breathe.

Now she is 9 and a half…

Now we are here… I do not know what to think and do… We want to give blood for genetic test in Germany… to identify which type of ataxia is there… also need to say that nobody from our family and my father brothers and sisters… their children… and children of their children and my mother line… my wife mother and father lines… and parents of my father on mother and etc… NOBODY has the same…

I mentioned that she become worse in her movements last 2 years and this is making me depressed. But I do not give up…
But she becomes much taller and gain some weight for last 2 years. What do you think also is it possible that she become taller and her disease is not progressive but just of more height now she looks more unstable and clumsy?

I bought ellipsoid and ordered treadmill. Buy some staff for balancing her… now she goes also 2 times a week to physiotherapist… and I want to arrange a massages for her…

I bought Co-Q10 and Magnesium B6 to give her now until we investigate what is it exactly…

Also what do you think about Canabis oil for ataxia? Who has tried it?
What do you think about SPIO costumes for ataxia?

Also I’m thinking to stop gluten for her… Do you know any gluten ataxia genetic test? Or just one that is for tolerance?

What can you advise for me?

Thanks a lot.


#2

Hi Alexey, welcome :slightly_smiling_face: As I understand you… Milana has been seen by a Neurologist in Cyprus. An MRI shows Cerebellar Atrophy (shrinkage). Several types of Spinocerebellar Ataxia are being considered, as well as MSA-C. No DNA testing has been done, and there is no family history of ataxia. Also, it had been a difficult birth.

Even in the US, and the UK (where I live), it can be very difficult to get an exact diagnosis for a Neurological condition. A Specialist Neurologist is often the best person to make a diagnosis. When there is no family history, sometimes even exhaustive DNA testing can fail to find a link with currently discovered Ataxias. This type of testing can be very expensive, and there are many, many different types of ataxia.

Because you mention having blood tested in Germany, I googled Ataxia Neurologists in Germany and clicked on the first link www.kneu.ovgu.de/Patients/spastic+ Medical Faculty University Hospital Magdeburg. They have a specialised outpatient clinic for Spastic Paraplegia and Cerebellar Disease, and may be able to give you advice, contact information is in the link.

Nootropil(Piracetem) is not approved in the US, it is approved in the UK and can be prescribed for Epilepsy, but it does have other uses.

Cannabis Oil ( Canabidiol - CBD) is thought to be helpful with pain relief. And, some children diagnosed with Epilepsy are thought to benefit from Cannabis Oil. Studies are being carried out in the US for Epidiolex (cannabis derived medication).

SPIO costume for ataxia. Do you mean Sensory Orthotics, garments and inner soles to aid balance and Sensory conditions :thinking: These type of garments are thought to be helpful with Sensory Ataxias.

We all know how frustrating and stressful it is trying to get in touch with the right person who can help solve the problems we are coping with. I hope this is helpful.

:slightly_smiling_face:xB


#3

Thanks Beryl for your answer…

We will send her blood to cegat.de laboratory in Tubingen for 101 genes panel. It should be enough to find out is it genetic or not… like a first step…

Also I want to make York food intolerance test for her as a part of gluten sensitive test… What do you think about it?

And doctor will prescribe some blood and urine analysis to check her general condition and metabolic things…

I really do not know what to do…


#4

:thinking: If you intend to use the York Test to discount Gluten Ataxia, I don’t think it would give a reliable result. The actual test for Gluten Ataxia is very specific, and it needs to be done by a Doctor. Prior to the test the patient needs to continue to consume gluten for several weeks even if it makes them feel unwell. Prof Marios Hadjivassiliou, based at Sheffield Ataxia Centre in the UK, is an authority on Gluten Ataxia, which is caused by Gluten Sensitivity. You could email Sheffield for advice about where/how to have this specific test done :thinking:

As you say, take this in steps. Always mention any medication Milana is taking before any testing is done, whether it is prescribed by a Doctor or something you are trying her with, because it could affect any result. :slightly_smiling_face: xB


#5

Yes, we do mention.
I’ve started to give her Co-Q10 30mg a day and Magnesium B6 by myself regarding what I’ve read here…

My dream is that here deseas is not progressive… just stable…

What do yoy think as she became taller for last 1,5 years is it possible her balance become worse just because of this?


#6

As Beryl said, the general gluten sensitivity blood test does not test for Gluten Ataxia. There was a member called Bear at the National Ataxia Foundation site that was very good with medical tests and things. Since the NAF has changed their website, the forum there is not available anymore. I contacted them awhile back to see if they still had those posts and questions from the forum, but alas, they don’t.

Bear knew and posted the exact blood test required for GA. Unfortunately, I’ve lost track of him. Maybe someone else knows. He could be at Facebook Ataxia. I’m not a member there so I can’t help you with that.

You could try sending a message to NAF and perhaps they know of the correct blood test. Good luck!

EDIT: Make sure that she also takes about 2000 IU of vitamin D3 everyday.
https://ataxia.org/


#7

It’s not uncommon for us to hypothesise about what could potentially effect ataxia symptoms, but as patients we can never be absolutely certain. The very best advice we can offer is to have Milana assessed by a Neurologist who has knowledge of Ataxia. If you aren’t happy with information you’ve already been given, ask for a 2nd opinion. Has Milana been seen at The Cyprus Institute of Neurology and Genetics :thinking: And do bear in mind, special care needs to be taken regarding ‘self medicating’ children :slightly_smiling_face: xB


#8

:slightly_smiling_face: There is a group on Facebook you might find helpful, there are other parents who are also looking for answers. Search Facebook for Pediatric Cerebellar Atrophy Support.
:slightly_smiling_face: xB


#9

Thank, Beryl. I couldn’t find this community…

Started today to give to her CBD oil… doctor prescribed 1 drop 2 times daily of 5% cbd oil… and then slowly increase it…

Let’s see and hope…

Also for last 2 days I’ve checked her eyes with ophthalmologist and ears with ENT… eyes vision is 100% and movements are normal…
right ear is perfect, but left hear not very good… moderate to severe hearing loss…

What do you think? Is it typical for progression ataxia? Or not?

My dream that is stable… not progressive…


#10

N​:slightly_smiling_face: It’s good news to hear Milana’s eyes are perfect, you must be hugely relieved. If she does have Cerebellar ataxia, it is possible the condition could have affected her hearing. But it is also possible hearing loss is related to something else… By far, the majority of members of Living with Ataxia are adults, and between us we share many of the same symptoms, even though our diagnosed types of ataxia are very different. It would be wrong of me to comment on Milana’s progression, I have no experience of Pediatric Ataxias, that is why I recommended the other Support Group :slightly_smiling_face: If you are a member of FACEBOOK, log onto the site and search again for PEDIATRIC CEREBELLAR ATROPHY SUPPORT. In the past, I have recommended other parents to join this group. Many parents in that group are also looking for answers, my hope is that it could be more helpful :thinking: xB


#11

I agree with Beryl but couldnt have said as much myself. Incredible knowledge Beryl.
I just wanted to say, having had all the tests mentioned and listened to neurologists and neuro physiotherapists, I have presumed my ataxia is due to premature birth defect. I understand that as we get older, our bodies are less able to ‘compensate’ whilst moving about. The progression of my inability to balance and coordiate my limbs has been extrememly incremental. At 5 years old, I was fitted with supports in shoes [1949] but my parents were unable to afford more than one pair. I am 76 now and still walking with aid of rollator. Hope this helps.
You say what should you do but sounds like you are already doing the best you could do. I take magnesium, vit and mineral supplement, linseed oil capsule, vitB complex and B6. I also vape CBD for anxiety but rarely need it.
I exercise daily and attend tai chi class [seated] once or twice a week.
My husband does the cooking but I do the clearing up so plenty of scope there.
Your daughter is very fortunate to have such a caring parent and I wish you well.


#12

Hi, Patsy. Thanks a lot. Friday evening I’ve done for hervflu vaccine. Sunday morning she had fever. Now also… 38,5… I’m scared…


#13

so sorry to hear that…personally I have tried flu jab couple of times and had terrible head cold soon after. I dont trust it… it changes every year. Personal choice though and just hope your daughter recovers very soon as it will undoubtedly affect her balance, xx


#14

This is my take regarding your present Ataxia problem with your daughter. I have always been proactive when it comes to my health. No! I’m not talking about taking untested drugs in tests or anything like that. If the possibility means that exercise or diet will help, then count me in to do it also.

Even if your daughter does not show any gluten sensitivity in her tests, I would try putting her on a complete gluten-free diet for at least 6 months to see if there is any improvement. Being on a 100% gluten-free diet will not harm her further - we’re only talking about food. FYI, there are many foods [gluten-free] available out there including pizza, cookies and other things that kids like.

A friend of mine is on that diet and he doesn’t miss any foods at all because most are available.


#15

Quoted by Dr Norelle R. Reilly, a Pediatric Gastroenterologist at Columbia University Medical Center.

There are things about a Gluten Free diet that can be life changing for the better. There are also things about this Diet that can be for the worse.

Parents are urged to consult a Doctor or Nutrition Expert if they believe a Gluten Free Diet will benefit their child.

She says, one of the greatest concerns revolves around adequate nutrition. Deficiencies in specific vitamins are potential risks. It could also impact bone density, lead to weight loss/ weight gain. Flavour is compromised when you cut out wheat, in order to make that up you add sugar.

Should a parent suspect Gluten Intolerence in their child, the first step is to be tested for Celiac Disease.

I would point out that Milana hasn’t as yet been correctly diagnosed, she is only 9years old, it could be counter productive to subject her to any change in diet without first seeking advice.

:slightly_smiling_face: xB


#16

And now I have noticed a really strange thing about Milana. She climbed the stairs, began to slow down, her face seemed to stop, her lip moved and drooling. It was for 3-4 seconds. Have anybody of you had this? Can it be CBD oil side effect?


#17

:slightly_smiling_face: It’s likely that not many of us have experience of CBD Oil. If you are at all concerned, the best advice is to contact the person who prescribed it for Milana :slightly_smiling_face: xB