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Senior Loken Syndrome

erinsrainbow
0 Recommendations

Does anyone have a child with Senior Loken Syndrome? If so, I would like to hear from you. How was your child diagnosed?

Explore topics in this discussion:

Exercise Eclampsia Surgery Retinitis pigmentosa Occupational therapy Prevacid Bipolar disorder Anxiety Dialysis Mental retardation Prednisone Gestational diabetes Myelofibrosis Dehydration Kidney transplant Nystagmus Diabetes Fever Anemia Autism Pain Cataract Aortic stenosis Ear infections Prilosec Polyuria

40 replies

Shelia1

Hey Everybody!

Just wanted to let everyone know that Travis is the proud owner of a new kidney! (Well, actually it is a 42 year old kidney - it came from his dad) He was in and out of the hospital in four days and is doing very, very well. The best they have seen. His biggest complaints were the catheter which drove him nuts, and the clear liquid diet that seemed to last forever! He is doing well on his meds and except for a long incision, and some soreness and bruising, you cannot tell he has had surgery. One of the cool things is that his color is so good. Now, instead of being yellow/silverygray he is peachy/pink! He is putting on healthy weight and already has more energy. We had a funny moment at the hospital when it came time for the ole' "got to have a bm before you can leave the hospital" routine. Well, after being given a suppository and squirming and moaning on the toilet for some time he finally squawked out in some distress..."my poopin' guts are broken!" Ah, the joys of autism!

Thanks for all of your prayers and we wish you all the best!

Shelia

Lauren7

Hello to Everyone,

I have just spent the last 1.5+ hrs reading through all the entries and expereinces you all have been through and my heart goes out to each one of you!

I am actually in a different position than every one of you... I am from California, however moved to Guatemala in August to do volunteer work with the people and children of Guatemala. About a month ago I heard of a story of a family with 3 children that all had a very rare disease that there was no cure for. I remember thinking, "wow, that's terrible" but didn't act on it. The organization I work with has groups of medical teams that preform surgeries here, and my friend was told there was nothing we could do for this family.

Today is a different day... We were driving through town and my friend that knows this family said how much he loved the kids running across the street, that they were the ones with that disease he had told me about. We stop to chat with them, I met the oldest, Sinder who is 14 and the youngest, Alan who is 3. They were precious! The only thing that stuck out to me was the constant blinking, otherwise they seemed "normal." As soon as we drove away I had to fight back the tears. I started asking my friend questions about them and their history, where they stood medically and so on. He only knew so much, but he did know that they had spent a lot of money so far and still there was no help for them. That they had found a research center in Barcelona and were saving money to send the mother and the oldest son for research to be done, but still needed to save quite a bit more to make this happen. Turns out that I just got back from Spain. At this point I really had to fight back the tears and immediately felt a weight on my chest that I would be raising money for this family in hopes of sending them all to Barcelona. I told him that I wanted to go back and talk to them. We spent about a half hour with the father discussing the disease. He does not speak any english, and I speak only little spanish, so through our translator, I shared with him that I wanted to raise money for their family and she shared that ALL 3 of his sons have Senor-Loken Syndrome. They have not been able to find many cases of this and the ones they do know of haven't lived past 20. He is un-willing to believe this in their case, especially since the doctor told him when his first son was born that he would be blind by age 7. He is now 14 and still sees! They all have had kindey problems and at this point, his oldest has a kidney functioning at about 5% and the middle son's is going down rapidly.

I am meeting with the family again in Friday, and the mother who I did not meet today has all the information and knows a bit more than the father. I truly know nothing more than I have read in this forum about this disease, and am fairly medically impaired. I am looking for research centers or any contacts in the US for this family. I have written the names of a few that were mentioned in the past from some of you, but only have one email contact. If any one of you have contacts, it would be fantastic. Please feel free to pass my email on to others where appropriate!

If there are any suggestions as to questions I should ask the mother that Doctors in the states generally ask, please pass those my way. I greatly appreciate your time and efforts. This family will be going somewhere for help... I just need time and a few generous people to help pay their ways!

Good luck to all of you! You and your children will be in my prayers!

Lauren Patterson
sisterloza@hotmail.com

Shelia1

Hello Rick,

Thanks for your answer. I gave Travis his first anti-rejection med tonight and it made me sad. Of course, this isn't going to go away and I know that but the second guessing is so difficult. Travis looks better than he has in a long time but the transplant will happen Monday. His dad passed all of the tests and boy were there a lot of them! I am well aware of how grateful I should be that he is getting a kidney so quickly but I am more apprehensive than anything at the moment. I just pray and pray that everything goes well for him. He is such a good, smart, funny, unique fellow and I hate that he has to go through this.

We were both ready to leave home (in different directions, mind you) after he got out of the hospital in October as he was a mess. We fought tooth and nail over him taking the meds (two kinds of sodium, thyroid pill, prilosec, two kinds of antibiotics, etc...) as he wouldn't swallow them and they tasted horrible when he chewed them. I was well informed that if he couldn't swallow meds whole, he wouldn't get a new kidney. I was so against him going on dialysis at that time. So, by golly, he was going to take those meds WHOLE! I tried bribing, begging, bullying, and reasoning. We went round and round like two tom cats in a two sack - you never heard/saw such carryings on. After one particularly grueling session that left us both boo-hooing I finally just let go and let God. I just told God that I was WAY out of my league here and honestly was not qualified to decide on such life and death matters and what was best for Travis, that maybe dialysis would be best for him if he couldn't take the medicine, or would have a hard time after the transplant. What a relief it was to realize that I was not in control! Well, wouldn't you know it, I tried the old "pill in a spoonful of sherbert" trick (for the umpteenth time) and wow! down it went! The look on Travis' face was comical...kind of a "eureka" moment combined with great relief. He still gets a funny look on his face each time it comes to time to take one - sort of a nervous, "is it going to go down?!" look but so far, so good.

I hope that Travis doesn't take a year to adjust to the medicine but it is encouraging to know that Erin is doing well on the medication as that is one of my worries, that the drugs would make him feel worse than before the transplant. A man sat next to me in the transplant clinic on Monday and said that for about a month after his kidney transplant, he didn't care if he lived or died he was that sick from the medication. Gee, fella, thanks for that little bit of info. Needless to say, my anxiety ramped up a few notches.

The good news is that Travis is oblivious to it all...

Thanks for your support and prayers. Please excuse any errors in my post as we are family of nine and there is no end to the interruptions...

I will continue to lift your family up in my prayers.

Shelia

erinsrainbow

Hello Sheila,

Thanks so much for your response. It is really good to hear from you.

The quick answer to your question about the transplant, is yes, we are glad she had it. For two years prior to that day, June 9th, 2007, Erin was on peritoneal dialysis, hooked to a machine every night. She could not get up to use the bathroom, get a drink of water or do anything that required moving more than several feet from her bed between 9PM and 6AM, seven days a week. Her diet was severely restricted as well. She was so tired sometimes that she would put her head down on her desk in the middle of the school day and fall hard asleep. She had to be carried to the nurses office, where she would sleep for an hour or so prior to returning to class. This is tough for anyone, especially a five year old. Is the transplant better? Yes.

She took about a year to get adjusted to the anti rejection medicines. The steroids positively affected her appetite, and quite frankly, she became ravenous. She would also eat foods she didnt like before. Her tastes changed quite significantly, and I understand that is not unusual after a transplant.

On balance, Sheila, it has been good. Dialysis was not fun. It was a lifesaver, but was not fun at all.

Please keep us posted on Travis' progress. We will keep all of you in our prayers.

Take care and God bless you.

Rick, Kim and Erin.

Shelia1

Hello again Rick!

Thanks for answering me my post. Travis was hospitalized for a few days. He barely skirted dialysis - fortunately I.V.'s and meds helped him improve. He had a scope done on his stomach that revealed no ulcers but bacteria. He was put on antibiotics and has now gained several pounds and is looking healthier than he has in quite some time - he was looking quite pitiful. He ate normal amounts but could not gain weight and was nauseated. It seems as if perhaps his body was unable to absorb the nutrients he was taking in. He never stopped drinking huge amounts of water so it wasn't because of that he became dehydrated - we are careful to watch that. Eating was a mess too...we had to keep feeding him lots and lots of small meals to keep him from gagging and wretching. Due to his autism, it is tricky to get out of him exactly what he is feeling as well as finding things for him to eat - he is soooo particular about eating and would rather starve than eat what he doesn't want! We are new to this but were under the impression that the stomach trouble was caused by the kidney failure. Had we know there was something wrong in his tummy we would have addressed it quickly. Thank goodness his nephrologist ordered the scope. He is tentatively scheduled for a transplant on November 24 which brings mixed emotions. I am curious about the anti rejection drugs. How is Erin doing on them? I know this sounds like a silly question but are you glad Erin had the transplant?
Thanks for your kindness and information and please know that I pray for your family.

Kindest Regards,

Shelia

erinsrainbow

Hi Shelia,

It is so good to hear from you! It is wonderful that Travis is so good at reading and writing Braille. Erin is now in the third grade and doing well. She is keeping up with her classmates. We are truly blessed.

You asked whether Erin had gastrointestinal problems. You know, she did occasionally feel ill when she got dehydrated. We did watch her fluid intake and most importantly, monitored her blood pressure twice a day. She was on peritoneal dialysis for two years and actually did pretty well on it, considering how ill she was before. She went on dialysis at age five, the summer before she entered the first grade. She was tired a lot, and we did have her on a strict diet, but she made it through school OK. Since the transplant, she has had several rejection episodes, but now seems stable.

Did Travis ever get a formal diagnosis of Senior Loken Syndrome? I was just curious about that. Where is he being seen? We presently take Erin to Texas Childrens Hospital and have been pleased there.

Looking forward to hearing from you!

Rick, Kim and Erin Taylor (Daughter, Senior Loken Syndrome, age eight)

Shelia1

Hello Rick!

Thank you for your email. I somehow overlooked it when I was corresponding with Margaret. I have lost contact with her which concerns me. I was looking back over the website as Travis is in the hospital as we speak and I am seeking information and I guess comfort as well. We are toeing that fine line between needing dialysis and trying to hold out for the new kidney as dialysis will be difficult for him we think. We have met the surgeon and will now be put on the list. We have a lot of the tests done with me and his natural father possible donors. But, as you know, things can only go as fast as they can go.
Was Erin able to tell you or did you notice gastrointestinal troubles with her? Travis is having trouble with nausea and has become dehydrated but we aren't sure which came first - the nausea and consequently the dehydration or is the dehydration causing the nausea. We are being so cautious and diligent in his care but I guess this is all a part of the progression of the disease. Good for Erin reading braille - I know you are proud of her as that is quite an accomplishment. Travis is very good at reading and writing braille also. We are very blessed to have these children and God, indeed, is very, very good!

Thank you for starting this post. I have found that these are the positive things that can come out of less than ideal circumstances.

Kindest Regards,

Shelia

erinsrainbow

Hi Judy,

You probably remember me. I am Erin's dad. She is the eight year old girl with Senior Loken Syndrome. I was wondering how all of you are doing. Did you ever get a firm diagnosis of Senior Loken Syndrome?

Also, I wanted to let you know the National Institutes of Health is sponsoring a study on Senior Loken Syndrome and related disorders. The study is very extensive, and free to the families. E-mail me when you get a chance.

Thanks,

Rick Kim and Erin Taylor

erinsrainbow

Hello Shelia,

I have been reading your posts with Margaret. My name is Rick Taylor and I am the one who started this e-mail discusssion on Senior Loken Syndrome almost a year ago. It has been tremendously gratifying to see the responses, and to see parents the world over sharing their strenghts, hopes and fears as they face the challenges of this extremely rare disorder. My Grandmother used to say "A joy shared is a joy doubled; a trouble shared is a trouble halved." . How true.

My daughter Erin, pictured above, had a kidney transplant last year at age 7 and it has made quite a difference. She was on night time dialysis for two years before that, and was always tired. her energy level has improved immensely and, though it took a while, her transplanted kidney function has stabilized and she is doing well. This is much better than dialysis! She has been blind since birth.

There is so much to be thankful for. In one month, she will graduate from Second Grade, and she can read Braille at nearly 70 words per minute. God has been good to us.

I wish you and Travis all the best. Let us know how he is doing. By the way, all of Erin's bloodwork is now done through relatively painless finger sticks. She doesn't seem to mind them at all now. I think Travis will find the transplant has great benefit and the follow up work, including the labs, is not so bad.

Take Care,

Rick, Kim and Erin Taylor
Houston, Texas
USA

Shelia1

Hello Margaret!

No worries about the name spelling thing. It doesn't bother me and never has. Usually, if someone spells my name correctly, it means they didn't know how to spell "Sheila" to begin with! I have me quite a few people in my lifetime with the same spelling as mine so my mom wasn't the only one to make that decision.

If you click on my name - I think on the "posted by" (it's underlined) then my email address should show up. Give it a try and see what happens. I would be happy for you to contact me that way as there are some things I want to say I feel self-conscious about. I just had to let that worry go and hope that I wouldn't be misunderstood and that even maybe it would help someone else on this site. Sorry you lost the letter you typed to me - I HATE it when that happens as I usually don't have a lot of time to type it in the first place! And the retyped version never seems as thoroughly written.

Thanks for the info in the last email. I mentioned Senior-Loken to the Dr. and he hadn't heard of it but asked me for a printout and suggested that I take a copy to the nephrologist for Travis's next appointment.

I hope Casey is "going good" as my Aussie husband would say. Travis is holding his own I guess - he turned 18 yesterday. I sure hope for many, many more birthdays for him.

You are ahead of me in this whole deal because I am afraid for Travis to have a transplant - I am afraid something will happen. However, I am so grateful that that option is there for him that I could weep in gratitude every time I think of it. For some diagnoses (sp?) there are none.

Take care,

Shelia

Margaret2

Dear Shelia,

How many people spell your name incorrectly as I have done in all my previous notes? Sorry! I have it right now.

With apologies,
Margaret

Margaret2

Dear Sheila,

I just wrote you a whole letter, than wanted to refer to your longer previous letter and lost mine in the process! I will have to make this shorter, as I must get back to work, but please know how grateful I am for your thoughts and prayers, and I send my own to you and Travis, too.

Except for the first creatinine clearance test, which was a urine test, all others, I am sorry to say, have been blood tests. At first he was checked every 6 months, then it changed to once a year, and when he got up to 4.0, that's when we started the transplant process and he will be checked every 3 months. It could very well be different with Travis, but we were told that the further along the kidney disease goes, the faster it progresses.

By the way, my understanding of Senior Lokan syndrome is the combination of visual impairment and renal disease - there seem to be many variations of both conditions.

Sheila, I wonder if there is a way that we could communicate outside of this forum? I should be able to figure it out, but I do not see where we can privately communicate, and I am loathe to leaving any personal contact information on a public forum...

Anyway, I must go - I feel like I was "chosen" in a way to be Casey's mom, and I am eternally grateful for that...

Take care,
Margaret

Shelia1

Dear Margaret:

How often did they check Casey's creatinine level? Did they have to take blood every time or were they able to monitor it through the urine?

Thanks,

Shelia

defro222

Does anyone have any experience dealing with myelofibrosis? My sister was diagnosed in September and has rapidly declined. Where did you go for help?

Shelia1

Dear Margaret:

I think that you are probably right about Travis being checked regularly. That is the impression I am getting. I wish that they would start checking everybody to find out who can donate to Travis but it is all so new and NO ONE seems to be in a hurry as far as the Dr.s go. I am with you in not wanting my son to have dialysis. It takes seven people to draw blood from him and we have it down to fine teamwork now. I cannot imagine how on earth he would go through dialysis. And, from what I have seen working with a geriatric population, dialysis is grueling. I am absolutely thankful that it is available but the thought of putting Travis through it is apalling. I want to know who, what, where, when, why and how and be ready the minute it is time. They should let me run the show by golly! It made me smile when you say you went in with a diagnosis - that sounds so like me. That is how I found this website. I'm sure that for the common man to have access to the internet must be a double-edged sword for the Dr.s. Is Senior-Loken the same as nephronophthisis or medullar cystic disease? The nephrologist Travis has seen isn't sure of the diagnosis that is why she is referring him to Children's - to get more information or verification. But they can't see him until JUNE! I don't know what Travis's diagnosis is but I guess the only thing that matters is the end result. I keep hanging on to the last line of a handout the Dr. gave me though "...kidney transplant...with excellent results."

Even though Travis isn't able to really explain the fatigue I think I have an understanding of it because my husband has M.S. He is a strapping 6' and 200lbs and very healthy for someone with M.S. however, the fatigue permeates every aspect of our lives and Paul is able to verbalize it. From what you say Casey tells you, it sounds exactly like what Paul describes. That lets me know how Travis must feel. *sigh*

I know how you feel about wanting to jump in there and give your kidney. As soon as the Dr. said what she said I thought "Oh dear God, let it be me instead, I'll do it for him. I'll take his place, I can do it. I am strong. I am healthy - please let me do it!" Of course, it can't be that way. But, you know - and I am not trying to be preachy, but after all these years of hearing and thinking that I understand that God loved me so much that He sent His son to take my place, I finally realized how much Jesus DID love me - He was willing to take my place just like I would gladly take Travis's. And that was life altering. But, I am still cranky and blue with God right now - not trying to be disrespectful but well...anyhow, He already knows what I am feeling and thinking so there is no use in pretending.

I prayed for Casey to have increased strength and endurance throughout last night and today.

Take care,

Shelia

Margaret2

Dear Sheila,

I had to laugh at your parenthetical comment about your donor situation. We, too, are blessed with several compatible candidates, including me, my ex-husband and Casey's brother. My inclination is just to jump right in now and say "Take me!" instead of waiting for my brother to get his weight and related things down. But I also want to be there 100% for Casey's recovery period, so I restrain myself. It may end up being me after all, and that's fine, too - we'll manage.

I remember so many times during Casey's life when he complained of having no energy and when I worried and sympathized with him, my ex-husband would criticize me for "feeding into" it. I know being a teen, and being visually impaired are reasons to get tired, but I truly believe that this overworked kidney and the resulting toxins being released into his body had a LOT to do with his low energy.

Casey's creatinine was 4.0 - 20% kidney function -when they scheduled the meeting with the transplant team. When he was first tested in 2003 it was 2.8. The next two years it hovered around 3.4, then in one year it rose to 4.0, so you see the progression was slow, then sped up - that's how it goes, I guess. I think it's when you get under 10% functioning, you must go on dialysis, and we definitely want to avoid that!

For Travis, since this is so new, I would think that he will have his levels checked in an ongoing fashion to see what his rate of progression is. Bless his heart. I can just see him sitting down in the store - Casey gets absolutely "bone-tired," as he calls it, and needs to bow out of social situations (which he longs for) out of sheer exhaustion. Like you, I feel incredibly grateful to be Casey's mom - he is a unique soul. I could use the exact same adjectives that you used to describe Travis to describe Casey!

It feels good to communicate with you - I feel like we have this great well of mutual understanding.

I hope you can keep me posted about you and Travis. I find that researching transplants and reading stories of those who have had them eases my mind.

With all good wishes and thoughts for you and Travis,
Margaret

Shelia1

Dear Margaret:

Thank you for your kindess in responding to my letter. I am almost afraid to ask but at what number was his creatine level when they began readying him for transplant. Travis is at 3.2 at last check - approximately one month ago.

I am struggling with this mightily as you well know. I have never questioned God about Travis - and he has been quite a bit of work but we have loved him so dearly. However, I have always been so grateful - first, the God gave him to me and not someone who wouldn't take care of him and second, that in spite of being blind and austic, he has always been so healthy. I am a Physical Therapist Assistant (this comes from being around therapists who worked with Travis) and I have seen many children that are so ill and fragile and thus, I have always had this deep gratitude for Travis's health. It almost like a sneaky trick has been played on us when we weren't looking. Does that make sense? It is hard to explain. Anyhow, in the meantime, I have had some pretty intense conversations with God and He with me.

Travis has had a decline in energy but it has been so insiduous that we thought that it was just behavioral. For example, walking through a store - he will just stop and sit down right where he is at. Fortunately, we have always been patient with Travis and didn't push him (thank goodness, or I would feel extremely, terribly guilty.) He takes cat naps during the day and usually puts himself to bed fairly early. I thought that all this sleeping and him not wanting to go to school was just "senioritis" because although he is autistic - he is still a teenager! My other teenagers have acted the same way. Again, I am afraid I am reading to much into things but gees, what's a mom to do? It would be good if Travis could communicate a little more in this situation. The good news is if/when Travis has a transplant we have quite a few candidates, me, his birth father (it's the least he could do - the stinker :-)) and three full siblings.

I am very sure that you are proud of Casey and all of his accomplishments. And good for you for empowering him and supporting him while he makes his way in the world! How lucky we are to have been given these fantastic offspring! I am proud of Travis - he is smart, funny, quirky, opinionated, headstrong, and I could go on and on. I am so blessed to be able to be around someone like Travis!

I will continue to pray for Casey and you when I pray for Travis and myself!

Take care and God Bless You,

Shelia

Margaret2

Dear Sheila,

I am so sorry to hear about Travis - you must feel like I do; why do our dear sons have to face yet another challenge? I hope that you find the doctor at the Children's Hospital kind, knowledgeable and helpful to you. That's exactly what happened after our family doctor did the preliminary test - the 24-hour urine test - and found out something was going on with Casey's kidneys.

He referred us to a kidney specialist at Children's Hospital. That was when Casey was 15, almost 16 (He just turned 21). At that time, that doctor thought it would be decades before Casey would need a transplant. He kept having check-ups regularly, and the progression was still kind of slow, but just this past September, his creatinine level went up enough that it was time to meet with the transplant team.

What went on between the diagnosis and now? Well, Casey had a hard time in school - he, too, is bright, but I believe he was continually so tired that doing most of regular school work and homework was just plain exhausting for him. He ended up taking the GED instead of finishing high school. We then found a training school taught by blind teachers where he learned to tune, repair and re-build pianos. It was a 2-year program, and although it was hard and tiring, and he lived all alone way across the country, he was able to complete the program. He is now working in New York, but he is tired all the time. It could be that Travis is feeling this lack of energy, too - does he say anything about that? Casey still drinks a couple gallons of water a day. He doesn't take any other medications. By the way, he also has very low vision - not totally blind - luckily his vision has remained stable.

He cannot remember a time when he had energy, and is afraid to believe that a new kidney will change his life. We do not know when the transplant will happen because we are waiting for his uncle - who has so kindly offered to donate one of his kidneys - to get in tip-top shape before the doctors will let him have the surgery to donate his kidney. So we are in that "not-knowing" position now, too, and I know that it is so hard to live with all that uncertainty.

The more I read about transplants, though, the more hopeful I am that it WILL change Casey's life. Having energy at last like others his age could make living with blindness a bit easier.

I hope that helps a little - if you have any other questions, I would be happy to talk to you.

Take care,
Margaret

Shelia1

A routine blood test showed that my son Travis has only 30% kidney function. The Dr. says he will need a transplant. Travis is nearly 18 - he also has high functioning autism/Aspberger's as well as the extreme low vision. He has been diagnosed with Leber's since approx. 6 weeks of age. He has always drank a lot of water and we had him checked for diabetes about 4 years which came back negative so we just thought it was one of his "quirks." He has always seemed so healthy but we moved and he needed to see a new Dr. for a med refill. This very thorough Dr. ordered blood work (it took seven people to draw blood from this very slender 17 year-old) and that is when we found this out. Of course, we are in shock and very distressed. He has to bee seen by a Dr. a children's hospital (six months from now!!) as the kidney Dr. has never seen this sort of thing. Hopefully, they will have. In the meantime, we are trying not to worry and see things where they aren't. I saw where Casey went from being checked to meeting with a transplant team very quickly it seems. What happened from the time of diagnosis to transplant team? I would be glad if you could help us. Travis has just recently began retching often after eating - he has never done this before. Also, he doesn't want to go to school which he has always wanted to do. He is very intelligent but very different and communication is often tricky. I would appreciate any advice or information you could give me. He is precious and beloved by us and not knowing anything is difficult. Please pray for us.

I will be praying for Casey and you.

God Bless You and Keep You!

Shelia

Peng

Hi Judy,

I know how it feels with us wanting the best for our child and would just pray and hope that there would at last be a way, a new discovery since technology nowadays just comes up with something new. Last time we saw my daughter's Retina doctor was in 2006, she was tested again (ERG) to find out if there was indeed any change in her retina. As I understood him that time, there no remarkable news about possible cure for this and he recommends that he would just monitor and see her every 2 years. He mentioned to me however that we should prepare in case there would be a possibility that her RP would progress. He says, there is no time frame and no one can predict the onset of the progession. It was hard and it is hard to take the news still. However, there some cases also where some who had RPhad not had any progression. I will be scheduling her to see him again this spring and can only hope and pray that there is no further damage.

I hope this will help in any way.

Peng

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