About antibiotics Antibiotics are among the most powerful and important medicines known. When used properly they can save lives, but used improperly, they can actually harm your child. Antibiotics should not be used to treat viral infections.
 

Bacteria and viruses Two main types of germs—bacteria and viruses—cause most infections. In fact, viruses cause most coughs and sore throats and all colds. Bacterial infections can be cured by antibiotics, but common viral infections never are. Your child recovers from these common viral infections when the illness has run its course. Bacterial infections can be cured by antibiotics, but viral infections never are.

Resistant bacteria New strains of bacteria have become resistant to antibiotics. These bacteria are not killed by the antibiotic. Some of these resistant bacteria can be treated with more powerful medicines, which may need to be given by vein (IV) in the hospital, and a few are already unbeatable. The more antibiotics prescribed, the higher the chance that your child will be infected with resistant bacteria. If infected with resistant bacteria, your child might beed to be treated in the hospital.

How bacteria become resistant Each time we take antibiotics, sensitive bacteria are killed, but resistant ones may be left to grow and multiply. Repeated use and improper use of antibiotics are some of the main causes of the increase in resistant can also be spread to others in the family and community.

A prescription for parents: Learn about the differences between bacterial and viral infections, and talk to your child's doctor about them. Understand that antibiotics should not be used for viral infections.
 

When are antibiotics needed, and when are they not needed? This complicated question is best answered by your doctor, and the answer depends on the specific diagnosis. Here are a few examples:

The infection may change Viral infections may sometimes lead to bacterial infections. But treating viral infections with antibiotics to prevent bacterial infections does not work, and may lead to infection with resistant bacteria. Keep your doctor informed if the illness gets worse or lasts a long time, so that proper treatment can be given, as needed.

What can I do to protect my child from antibiotic-resistant bacteria? Use antibiotics only when your doctor has determined that they might be effective. Antibiotics will not cure most colds, coughs, sore throats, or runny noses—children fight off colds on their own.

If mucus from the nose changes from clear to yellow or green, does this mean that my child needs an antibiotic? Yellow or green mucus does not mean that your child has a bacterial infection. It is normal for the mucus to get thick and change color during a viral cold.

Does this mean I should never give my child antibiotics? Antibiotics are very powerful medicines, and should be used to treat bacterial infections. If an antibiotic is prescribed, make sure you take the entire course and never save antibiotics for later use.

How do I know if my child has a viral or bacterial infection? Ask your doctor. If you think that your child might need treatment, you should contact your doctor. But remember, colds are caused by viruses, and should not be treated with antibiotics.
 

American Academy of Pediatrics, Division of Publications

141 Northwest Point Blvd.

PO Box 747

Elk Grove Village IL 60009-0747

Web site - http://www.aap.org

If you were going to die soon and had only one
phone call you could make, who would you call and what would you say? And why are you waiting?

Stephen Levine

Fiona Barnes

Bedfordshire, GREAT BRITAIN

Hi Everyone,
 

Well 18 months ago my husband and I took on the care of our CLS grandson and are now raising him along with his uncle Phillip. Little Michael is 4 1/2 years old. His speaking is coming along well. He will try to go for the harder words, funny lad and with practice he does get there in the end. He walks, or I should say runs, with the aid of his toy shopping trolly/cart. The trolly is not heavy enough to hold his weight if he lent on it. So he is walking on his own with its moral support.

About two weeks back he walked down the stairs with just the aid of the hand rail, something I have been trying to get him to do for some time. He is just too heavy to left up/down stairs. According to his teacher he did take a couple of steps un-aided the other day. As yet I have not seen him do so here at home but it will come in time.

He is ultra careful in everything he does. He will sit in an ordinary chair without any sides/stapes etc. on his own and mentally he does pick things up quite fast all things considered. In some areas he is slower than his uncle Phillip was at the same age as Phill was walking un-aided for over six months at this point but
mentally he is quicker about some things. Not than you can get much past Phill, he knows what he knows. For example a couple of months ago we where out shopping when we past a "FIRE EXIT" sign. I had said nothing but Phill soon pointed it out and read what it said. That is from someone who does not really read or write. Although the important phrases like "FIRE EXIT", "GENT" we have tried to teach him. Something must have stuck, which is nice to know.

Thank you for your time.
 

Michael, Phillip and their Mum.

This is from an email sent to me recently by Davis’s pediatrician .—MCH

Mary,
 

I continue to be amazed at how disabling the drop attacks of CLS are for almost every family. I briefly feel a little less stupid every time I read about all of the other smart doctors who can't figure them out. That feeling is rapidly replaced by sadness and frustration and compassion for the families that continue to endure them, and us professionals' inability to fix them. THAT emotion is then quickly replaced with gratitude for what YOU do at CLSF. It is SO COOL that people who have endured the pain and tests and medication trials can share their knowledge and experience, thus speeding up the learning curve for the families and their doctors.

In other words, thanks again for what you do.

With enduring respect,

Dave Ege

Paul and Joan Heggie

Middlesex GREAT BRITAIN

Hi
Our son Michael who is now 14 years old had a spinal fusion in May 2000 and had a terrible time. He had the first operation where they went in from the side to put in some metal work and then one week later, he had a rod inserted into his back from top to bottom. It was after this second operation that Michael caught the hospital bug MRSA. He was treated with antibiotics and was sent home in a full plaster body cast after two weeks. Six weeks later, he went back to have the body cast removed and his back was in a terrible state. He had an emergency operation to clean and scrape his back and we then spent the rest of the summer in the hospitals isolation ward. Because Michael has a very high pain threshold, we were not aware of his discomfort and he did not complain once about any pain that he must have been in.

Two years down the road and Michael is back to normal. He still has drop attacks but is able to walk short distances and he is pretty well upright which he would not have been without the operation. We do not know if a high resistance to pain is a part of his syndrome but it is something that needs to have a close eye kept on. Without the operation, Michael would be permanently in a wheelchair so from that point of view it was well worth the operation but we think that the medical profession should take more care with Coffin- Lowry sufferers as they seem to be prone to infections when in hospital. We hope this is useful to anybody needing a spinal fusion.

Joan & Paul Heggie

There seems to be a fair amount of anecdotal information to indicate that people with CLS do not feel pain in the same way as most people do.—MCH

Mary Hoffman

Sammamish, Wa

Update on Davis Illa

Davis underwent a second full spinal fusion on May 7th. About a month ago, we found that his rods had both broken at about the waist. When the surgeon opened him up, he found that although the fusion was fine from the break downward, none of the donor bone had fused with the spine from that point up. The donor bone looked the same as when it was put in two years ago. This caused the surgery to run longer, and increased the blood loss because they had to clean all that up.

The surgeon had no explanation for this other than perhaps his body just didn't agree with the donor bone and recognized it as foreign.

So, over time, the metal fatigued and eventually broke. One week after surgery, he’s doing very well, already asking to go back to school. He now has much stronger, rigid instrumentation in his back, and they were able to take enough bone from his iliac crest (hip) to do the whole fusion over again.

He also had severe respiratory problems in recovery which gradually improved over the course of the next few days. This was different from the laryngial spasms he had last time. One lung wasn't fully expanding, and he was struggling to get air through his windpipe, much like an asthmatic, even though he had a tube in his nose to keep the airway open, and was receiving oxygen. He received breathing treatments and was on oxygen for the first couple of days.

The day before he was to be discharged, I asked if there was someone on staff who was an obstructive sleep apnea specialist, and I lucked out. They were able to run a sleep study on him Friday night. Although they didn't use the word "apnea" per se, he was diagnosed with severe breathing difficulties. His oxygen levels dropped down to 70 several times. As soon as he has recovered well enough to make the trip, he will be going back to Swedish for follow-ups on this and to see if he can tolerate a bi-pap machine. A bi-pap differs from a Cpap in that the Cpap has constant pressure, where the bi-pap pressure is higher when you are breathing in and lower when you breath out. (Davis also has trouble getting carbon dioxide out of his system.) Long-term oxygen deprivation can cause cardiac problems, cognitive problems and a host of other issues. If you suspect that your child may have trouble breathing at night, I strongly urge you to get a sleep study done.

In spite of everything, he actually recovered rather quickly. The surgery was on a Tuesday, and we came home on Saturday.

Thanks to everyone for your support and concern.

Mary Hoffman

Mark & Lynn Richards

Whitefield, ME

Dear Mary,

Sounds like you guys have been thru quite an experience. Not sure if you recall, but Andy has very severe sleep apnea and does wear a CPap every night and does very well with it, it's made all the difference in the world for him, he's no longer so exhausted all the time, he's really gained an unbelievable amount of weight, so he's actually now chunky, he use to be so very skinny, of course he no longer snores at night and sleep right thru every night, not to mention how whenever he gets a cold now it's only a cold, colds use to turn into secondary infection for Andy all the time, he would never just get over them, but he does now in fact he hardly ever gets them anymore, biggest difference being that his lungs are now healthier, and yes I would like to second your opinion about getting a sleep study done on anybody that you might suspect have sleep apnea. Well Mary, good luck to you and Davis, and take care of yourself...

Lynn Richards

Alicia and John Bourdon

Hudson, NH

Hi Mary,

I just wanted to fill you in on Kaila. She was recently diagnosed with scoliosis. We will see a pediatric specialist on the 28th of this month for a back brace.

We saw her genetic specialist again on the 25th of April and he once again (along with his associate) started saying it's possible I'm a carrier of the syndrome and the child I'm carrying may have it. I told him I have no signs/symptoms of this syndrome and more than likely Kaila is a gene mutation which every woman has the same odds of having. He said it very well could be, but what if it isn't the case. Then he added, it's too late to do anything about it anyway. (I think he's just covering himself to say "I told you so" just in case) but for god sakes be a little more sincere. My husband and I feel you are more of an expert on CLS so we will go with what you told us. Less worry this way too.

Anyway......Kaila is now part of a research project going on in N. Carolina on CLS. They fed-x'd her blood on that day and we hope to hear some results soon. Her digital pictures have also been emailed around the world to genetic specialists for feedback on what she should be tested for (that is available to us). I still haven't heard back from them. I will keep you informed.

Alicia Bourdon

I know of only one case where a mother has two boys with CLS yet has no symptoms herself or any family history. It can happen, but it is very rare. Since there are over 90 separate mutations that can cause CLS characteristics, there is still a lot that is not known about the genetic origins of this condition.

I still think the odds are in your favor.—MCH

Katherine Stewart

Springtown, TX

Hello Mary

BJ turned 13 on the 29 Of April this year. I still can't believe it. BJ is doing well in school he can count to 12 now but still does not recognize the number, he can say his A B C's. He does recognize B & J and a few of the other letters. He can write his name BJ now. I am so happy about that. He has learned so much from the leap pad that I purchased for him and the school got him one also. Mentally he is doing well progressing slowly but progressing.

Physically BJ is going down hill and that is one reason why I wrote. BJ can not walk independently any more. He falls constantly, the drop attacks are pretty well controlled but his inability to stand and balance has went down hill. He can not walk from the couch to the bathroom without falling at least 2 times. He hunches over to walk, but he just don't have much strength anymore I have him in physical therapy but it is not helping much. He has broken his hand twice and his foot twice in the past 8 months. I am very jumpy about him even walking now. He sits most of the time now and will not walk around much, he crawls a lot, or I hold on to him. That does not even help much when he falls I barely can hold him. The Genetic specialist said this will get worse and may get where he will just refuse to walk. He does wear a soft shell helmet to prevent head injury, which he has had several of those also. The Genetic Spec said there is history of some progression involved in the joints in neurological. Is this true? Can you tell me what you know on the subject? His joints are also beginning to enlarge. What can you tell me about that? I appreciate any information.

To conclude BJ is still friendly and always happy, and well liked and funny. He makes my days brighter.

Thank you so much.

Kathy Stewart

I don't know of any progression in joints enlarging. Davis's knees are big compared to his calves but he has no muscle on his calves anymore, so maybe it is just the contrast. The problems you are describing are neurological. We keep hoping to find some kind of silver bullet medication, but no one seems to have any consistent luck. Davis gets around by crawling now or in his wheelchair if we go anywhere. The wheelchair has been a lifesaver. –MCH

Carol Garrett-Blais

Merced, CA

Hi Mary
 

Thanks for all the information you sent about what to expect if we decide to have the surgery done on Charlie. I think we are leaning towards doing it, but won't make our final decision until our return appt. in August and some more talking, research, etc.

We took Charlie to the University of San Francisco yesterday to see an Otolaryngologist. It seems during one of Charlie's many falls, he broke his nose!! We don't know when it happened as he never was black and blue or complained of pain. His septum is blocking one side of his nostrils, but at this point, we are going to wait before doing surgery. We are hoping to get a sleep study approved at Stanford to see how his breathing is affected and then go from there. We have an appointment in August, so unless something changes with his sleep patterns, we will wait until then before making any decisions to have his nose repaired.

Carol & Charlie Garrett

Lucille & Georges Lambert

Oak Bluff, MB

Dear Mary;

Bradley has turned 3 years old on April 3rd, 2002. At birth, we noticed something quite different about Bradley. His facial features were different with his eyes far apart, bushy eyebrows, a rather large mouth with pouting lips, puffy hands with tapered fingers and flat puffy feet. He always had his fists clenched against his chest and turned inward. He would fight you, whenever you tried to pull his arms away from his body to dress him up or for washing, and to this day, he still fights us vigorously when clipping his finger and toenails. Another thing that was quite different about him is that he didn't cry at all or made any sound.

On one occasion, when he was approximately 6 weeks old, I was giving him a bath when all of a sudden he stopped his kicking and he turned blue, as if he wasn't getting enough air. He was rushed to the emergency at the Children's Hospital, here in Winnipeg. From then on, he had to be rushed to hospital on many occasions for severe breathing problems, which lasted till he was about 2 years old. His breathing is much better now, and he's off the inhalers or any other medication.

Bradley had numerous ear infections during his first two years, until drainage tubes were installed to drain the fluid that had accumulated behind his eardrums. His hearing seemed to have improved a great deal since those tubes were installed. Other hearing tests were performed on Bradley about 2 weeks ago and they revealed that his hearing was mediocre.

Bradley was about 9 months old before he would sit-up on his own, and was 11 months old before he attempted to crawl. He walked on his own by the age of 2. The soft spot on top of his head didn't fill-in completely until he was about 2-1/2 years old. He hasn't lost any baby teeth yet, but he is still quite young for that to happen, but lately, we have noticed that his bite seems to be getting worse.

When Bradley was about 2-1/2 years old, we finally got him to a chiropractor, as we were concerned that his spine seemed to be curving side-to-side. This chiropractor treats mostly by touching different power points on the body. This type of treatment is called "Healing with Network Chiropractic". About two weeks after seeing this chiropractor, or by coincidence, Bradley started making sounds and to come out on his own, and his motor skills, sense of balance and confidence improved tremendously. He started going up and down stairs without even holding on to the railing, and so forth. He's now capable of feeding himself quite well. Also, he started to pronounce some words and is now determined in imitating his older sister (2 years older) in everything she does. His gross, fine and living motor skills are approximately at a two year old level.

We found that the best way to deal with Bradley’s bad behavior, were to just ignore him, and he would snap out of it on his own and comes for a hug.

Bradley hasn't had any drop attacks or seizures as yet. He loves music and likes to dance and imitates the actions from the TV or videos. Also, loves to play outdoors and on the slides. He doesn't like to be held in temporary confinement, when buttoning his shirt, zipping-up his jacket, putting on a hat, or as mentioned beforehand,' clipping his finger and toenails, and so on. Bradley is a very happy and loving little boy, who so far, seems very eager to learn.
 

Please keep the newsletter coming, as they are a great help. Thank you so much for caring.

Affectionately yours,

Lucille & Georges Lambert

Tip for severe constipation

Children's Hospital in Seattle swears by this, and I have to admit, it's effective and has the added benefit of being very safe - no danger of electrolyte shock.

Mix 4 oz molasses with 4 oz milk. Administer like an enema (you can warm it up to body temperature in the microwave if the milk is cold). With Davis, it works within 10-15 minutes. You can repeat if needed.

Davis has had three blockages so far, and this works the best of anything I have tried, although I don't think I will ever be able to eat molasses cookies again. -MCH

Thanks for Caring!

I would like to thank the following families who have donated generously towards CLSF operating expenses:

Send your donations to:

Coffin-Lowry Syndrome Foundation

c/o Mary Hoffman

3045 255th Ave SE

Sammamish, WA 98075 

(U.S. Funds, please)