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Sad: ten year daughter has POTS!!!


DawnA
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I have not posted much this past year. I have been to busy trying to feel well and manage my family. I have been really been struggling physically and emotionally. A few years ago my daughter Carissa 14 was diagnosed with POTS fortunately she is doing pretty good.

My daughter Allison 10 has been diagnosed with Crohns and psychiatric problems which she has had since very young. She has displayed a lot of autonomic symptoms over the years. I have never pursued testing. Now she has all of the classic POTS symptoms with a 40 beat increase with poor mans tilt. Like her older sister was, she is a gymnast. She loves gymnastics and does not want to quit. Her sister had toquit. Aly has so many good friends on the team and loves to be active. I am hoping that she can continue to go at least for a few years with treatment. It is YMCA gymnastice and not very competitive. She has suffered enough in her short life especially with her psychiatric problems. This just breaks my heart.

I remember when I was going through testing for MS and how many people told me I was so lucky that I did not have MS. Their intentions were good but the comment always upset me.. i really wanted an answer. Now I would give anything to have the MS diagnosis. Instead I have a heriditary metabolic illness that has killed two of my aunts and grandmother while in their fifties. Now I am waiting for another aunt who weighs 70 lbs and my mother to die. They are both very ill.

Onset seems to be coming at a younger ages as the generations pass. What does this mean for my daughters??? The unknown is the hard part> Should they have children??will their children have this in infancy! It makes me so sad to see my children suffer and struggle. It would help if their were doctors available who know what they are doing...but their are very few. The one I saw at Mayo just quit so I will be traveling to Boston in January. For those of you who pray, please keep us in your thoughts and prayers.

Dawn ANich

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Hi Dawn:

I am really sorry that your family has been so badly afflicted!

Whether your children will be able to have children without running the risk of passing on the disorder depends on what the disorder is. Has any physician shown any interest in figuring that out?

It sounds to me as if your family might have a mitochondrial problem. If the problem is in the mitochondrial DNA, the problem would pass only from mother to child (the father doesn't contribute mitochondrial DNA to the offspring). However, it is possible to have a mitochondrial problem resulting from nuclear DNA, which you can get from either parent.

Some mitochondrial diseases are manageable, but they have to be properly diagnosed first. The United Mitochondrial Disease Foundation might be able to give you more information: www.umdf.org.

Recently, some fertility researchers described a case in which the nuclear DNA from a man and a woman were placed in an enucleated egg cell donated by a healthy woman. This would enable people to have their own genetic children without passing on mitochondrial DNA problems. So there is hope for your children to have healthy children, even if they do have a mitochondrial problem.

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Dawn, I am so sorry this is all happening to you! :) My son has a genetic form of arthritis, crohn's, asthma, you name it. He thinks a lot about whether he will consider ever having kids. What we would do to take this all away from them and stick it on ourselves! I hope your daughters do well for a long time.

I have been sick my whole life but manged to work till I was 48 and have kids. So it's not hopeless, just pretty discouraging. Hang in there....morgan

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I am so sorry for the pain you and your daughters and your family are experiencing. Hopefully there will be new medical answers as time passes that will give your family more hope than you have right now.

It is very hard to see your child ill.

I wish the very best for all of you. Let us know how things are going.

Katherine

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Dawn,

I am so sorry to hear that you have another child that has ANS problems. If there is any positive side to this, at least you know early with her. She won't have to go through years of thinking or being told she's imagining her sxs. As a mother, I can understand how disheartening this is- we are going through it to an extent with my little girl. But, if my daughter (or son) end up having ANS problems I will know how to help them and their road will not be as hard as mine. So, I know this doesn't change how you feel right now but it does help me to remembert this. God bless you and your family.

Carmen

PS I will most certainly keep you in our prayers.

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Hi Dawn,

I am so sorry to hear all this. I can imagine what this does to you and how you feel. We always want the best for our children and more than that.

I really hope that both your daughters will stay as healthy as possible for a looooooong time and that the POTS won't get them for a long, long time.

Sending you my best,

Corina

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THanks everyone for the kind thoughts and words. THomas you hit it on the head with the mito disorder. That is what my PCP and I think I have. My muscle biopsy came back abnormal, but not enough to yield a diagnosis of a mito disorder. Dr Whiteman a Mayo clinic found abnormal labs pointing towards mitochondrial dysfuntion, but felt my mito problem was secondary to an autoimmune disease. After seeing a rheumy ...this is not the case. Dr Whiteman is no longer at Mayo. The mito Dr near me does not know her stuff and insisted I had a conversion disorder. This was proved wrong by another Dr...a lot of feathers were ruffled over my case between Drs. I no longer feel comfortable with. I do feel fortunate however because I am going to see Dr Korson in Boston who is one of the leading specialists for mito. I am hoping he can give my Dr support in treating me and in due time see my children.

It gives me hope to know that my daughters will be able to have children without passing on the mito defect.

Gotta go pick up my daughter. Dawn

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Im back...it is nice that I am able support my daughter and understand what is going on with her. My oldest daughter was sent to the social worker at school because the teacher thought she was depressed and also thought she had attention deficit diorder. I knew something was not right but she could not describe her symptoms very well. Four years later she was diagnosed with POTS. If it was not for me getting sick she probably still would not have a diagnosis.

I can handle my self being sick, but not my kids!

dawn Anich

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Has anyone in your family been treated with thyroid hormone supplements? We know that thyroxine increases the activity and number of mitochondria, but I don't know whether anyone has shown that use of supplemental T4 (with or without T3) does any good for people with various mitochondrial diseases. There are a lot of people who have the symptoms and signs of thyroid deficiency but don't have abnormal T4 or TSH levels. I have long wondered whether some of these people have mitochondrial disorders and whether the supplemental T4 and T3 might help them function better.

You will probably have to go to several doctors before you can find one who would be willing to give this a try. If possible, try to find an endocrinologist with a PhD as well as an MD degree.

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